I try to give an insight in my own life and dealings with rosacea. I also try to gather information that might be useful for everyone with rosacea, especially subtype 1 with burning, flushing and skin redness. I happen to be a bit unfortunate in that I have this condition for a long time already, and unlike many others, I haven't been able to get it into remission. I know it is more uplifting to read about someone who has beaten rosacea, but I like to write about the struggles that come for those who haven't achieved this. I also blabber here about other everyday life topics. 
I promised that the next thing on here would be a positive message, but unfortunately.. it is not. A massacre of sorts, but not of the same magnitude as the thing I wrote last about. No the murderer is one of my own this time! Cat Koshka. Aka: the monster. He is the self-declared top dog in the house and despite getting plenty of quality delicious foods all day, he comes home at times with small birds in his mouth... Often he makes quite an entrance with lots of special toned miauwing, making it clear he has pray with him, and 9 out of 10 times the bird is still unharmed (strange as this may sound) and flies away unharmed when I make sure Koshka opens his mouth first. But today he had 5 whole hours when I was out doing shopping, and I found no less than 3 dead birds on the porch 😢 Bloody monster. I put three loud sounding cat bells on his collar now, so he rings with every step he takes now. Hope this was the last time he caught a bird 😞 He does it also to get extra love and attention it seems (as if he didn't get enough to start with) because he is cooing like a dove when he comes in like this with an animal in his mouth, and twirls around my legs ecstatically and proud as punch.. Ugh!!
And my sweet short-tailed cat Piotr has also been acting strangely today...
Luckily Igor hasn't turned into a gremlin.. yet!
My rosacea is a nightmare at the moment, as its very cold here, around 4 degrees Celsius, and it is a pest to avoid big temperature changes during every day life. Too warm and I flush and burn worse than normal, and too cold and I am getting my cold urticaria again; these annoying itchy/hot welt like eruptions on my face (I get them every winter, like hives). I have had them come up last month, then I managed to bring them all down again by staying in warm enough temperatures (but not too warm or I get too flushed and burned up, which is a complete nightmare to navigate). But a day outside in the cold wind and I have 4 big ones back again now. In a week and a half from now I have to go to hospital where immunologists can hopefully help with the hand and general flushing. Well, I won't get my hopes up too much, but one can always dream.
Songs of the day
December 31st 2018
We also played board games, and this dreadfully complex board puzzle. I received it as a lovely Christmas present from my American (rosacea) friend. It 'only' has 250 pieces, but they are cut in such strange shapes often, and the amount of abstract dark areas in the puzzles picture are so large, that two adults and one 9-year old still managed to work for two days on it, with a total of at least six hours. Every good piece gave a little endorphin brain zap hit however, which kept us going. Was good fun. We watched the movie The Sound of Music and sang along. We ate a lot of food at late hours in the night. At the end of the stay, I slept for ten hours straight, and the subsequent night eleven hours. Can't imagine how chronically tired the parents of young kids must be. Although the parents I know all say that you get used to it... All in all a lovely eventful week. Despite being tiring for someone who isn't used to the humdrum of family life with several young kids roaming around haha. My rosacea was not too bad. The family is easily chilled but know to bring thick jumpers when they visit me. Despite all that, I had the wood burner on often, but the old fashioned type I have is closed and does not emit burnt wood particles or fumes into the air. So, less flushing from it than from an open fire. I managed to keep it warm enough for the rest but cool enough for me to not get a face that was on fire. I normally have a ventilator run wherever I am, so also during dinner or while doing board games. But I have done without the fan when I was with the rest of the group this week. Despite the kids also understanding why I have red cheeks and use cold packs. I did turn red and hot, but had only twice a proper overwhelming hot flush; both times while concentrating hard on that darn board puzzle haha. Must have been my competitive streak firing things up. Now the peace and quiet has returned, so back to normality now. I think it is important to keep up friendships, even when you suffer from rosacea.. Even when you have a flushing problem and a face that feels on fire, hard as it may seem, and appealing as it might be to hide it out alone.. Below I will write a bit more about the importance of this. 
A friend sent me an interesting video It details how scientists studied a very large group of people (from all walks of life) over the course of their lives, for the past 75 years in fact, to find out what makes people happy. And the end result was that good relationships keep us happier and also healthier. Social connections are important and loneliness literally... kills. The scientists found that people who are closely connected to family, friends, their community and so on, are happier, healthier, physically in better shape and they also suffer less from ailments, when they do have health issues. They also live longer than people less well connected. I instantly linked this to the ways in which rosacea can isolate people from their loved ones. Especially the subtype discussed on this blog, which causes so much pain, burning, heat and therefore often social distraction and even isolation for some people. But being socially isolated could just be the thing that makes our mental health decline faster and further, it now seems... Socially isolated people, the researchers found, have their health decline earlier and further in midlife. Their brain function declines sooner too, and they live overall shorter lives than people who are not lonely. And the sad thing is that so many people these days are said to feel lonely and isolated. Even people with large families; think of the many retired people who have a very hard time getting their fast-living, busy relatives' attention, and silently whither away.. Scientists also found that it is not so much about the number of friends that you have, and whether or not you are in a committed relationship, but more about the quality of your close relationships. You can have a long standing marriage or relationship, but when there is constant conflict, this is just as bad - if not worse - for your health as being single. Bickering in itself is not the issue, but partners need to know they can rely on each other and have each others back. Only when they are feeling lonely and neglected or structurally badly treated within the relationship does it have a very detrimental effect on your general health, your psychological state of mind and on how old you will become. The large test group showed the researchers that at age 50, the big predicting factor of their state of health later in life, was directly linked to how satisfied they were with their relationships in life. Those who were more satisfied at age 50, were also the healthiest at age 80, regardless of their cholesterol for instance. And being in a secure, stable relationship, also keeps your brain sharper for longer. It was a big message the researcher wanted to give to the youth of today: statistics show that the majority of Millennials are striving for Riches first and Fame secondly. But instead, this researcher claimed, they should perhaps strive for good social relationships first and foremost instead.
And most important for me personally, was how this scientist mentioned that those people who later in life had declined health and issues with pain due to diseases, the ones who had the best relationships would stay just as happy, despite feeling pain. Whereas those feeling isolated and lonely would experience their pain much worse. Their emotional pain worsened their experience of the physical pain. So there you go... We have chronic pain and we endure all sorts of life-affecting symptoms, that can steer us towards greater social isolation. But always try to invest in a couple of good, loving, secure relationships. Whether with friends, family, lovers, you name it. I notice this myself. I can feel wayward about meeting up with friends when I have a very bad rosacea period. And that's not a big deal when the flare doesn't last too long. But I have also had 'flares' (call it bad periods) that lasted months, even a whole season. I did feel better emotionally, and more refreshed and mentally more stable every time I kept my friendships and relationships in a good state. Invested in them and felt the reaffirming love and connection come back from them. It might sound very syrupy, but it is something important to be aware of I think. Do not put your entire life on hold for this disease, no matter how tempting. And social media is not all it is said to be when it comes to feeling connected with others. Yes, it is easy to keep up with your dozens or hundreds of online friends from the comfort of your own house, but the other side of the coin is that social media contacts are often shallow and that they do not provide you with the same happy hormones as a physical encounter does; sitting face to face with someone, talking, laughing together, seeing each others facial expressions, and exploring the real world and creating experiences that are not online. These sites, apps and devices are created in such a way, that they make the user addicted quickly. It is done on purpose, because the more people use these services the longer, the more profit the companies can make through sponsors. I saw a very good documentary about Silicon Valley, and about the tech hotshots themselves actually en mass banning their kids for a good part from social media and high tech. These people were interviewed and explained that they know that being on your phone all the time is bad for a developing brain and for the quality of youth of these kids. So they restrict their own kids. But outside of their own private bubble, its just another business model for them; a way to make a lot of money. In fact, the way in which the social media swiping device is designed, is consciously made to mimic a slot/poker machine. Making it extra addictive. 
Kids should probably be taught about the value of families, especially on fatherhood. I don't understand the current western attack on family values. Sure, experiment all you want before you settle down, but why is it so socially acceptable that very young families break up, regroup with other freshly single parents, create newly composed families with other peoples young children? In my sisters friends group it is the rule instead of the exception. And if marriages are bad, sure, that it bad for a developing child to be caught in the middle of as well. But aren't some people giving up too easily in todays fast-paced world? And all the attention for gay rights, new modern family units, gender fluid peoples rights, same sex marriages, all of that is very important. But it now feels as if men are not taught too much anymore about the importance of their role within the families they create. My friend wrote me about this: "I know from my own experience. I definitely would not have gone to uni and not played professional sports if it weren’t for my father. My friends from primary school who had non-existent fathers, were the ones who got into trouble and eventually went to prison. They were always at my house and dad would take us to watch big sports games. He would finish work early on Friday to help our school teacher drive us to different sports matches. Dad would play sports with us in the backyard. In that time of primary school, I never spoke a word to one of my mate’s fathers and the other father was never around. Both those boys spent time in prison and one of their brothers died from a drug overdose. My father has been my discipline and my role model. He has taught me so so much about respect and hard work. If I ever showed disrespect, I would get a kick up the arse. He taught me from a very young age to write letters of appreciation to people to thank them for any good deeds. In my whole life I’ve never called him by his first name. I would never dare. It’s dad."
I may turn into an old whiny woman already, but it is hard not to reflect on modern times when you grew up yourself in such a different era, the 80's and 90's. A time before mobile phones, the internet. We grew up with parental discipline and a firm kick up the behind. Weekends, most parents kicked their brood out the door, telling them to play outside with the other kids and to be back by dinner time. We had a lot of space to explore the world and socialize with other kids. Parents in the 80's normally didn't coddle their kids and press flat every little obstacle they might face. Nobody was afraid of failure, because we learnt to figure things out ourselves and get back up every time we failed. I can't believe sometimes how hands on many parents these days are, following their kids every move with hawk eyes, fussing about their every set-back. But also: how much basic values have fallen by the wayside in many areas. For some people it seems to be all about self-centeredness and hedonism today. No doubt thanks to social media allowing us to see all the highlights of other peoples lives, but never the realistic humdrum of every day life. So now large groups of people seem to think that life should be one Happy String of Experiences. Endless holidays, parties, happy moments. It's completely accepted now that of all the kids in school, half of those under ten have separated parents. Fighting for your relationship is time-consuming and just not fitting in with this adagio that you should always feel fulfilled and content. So people drop the whole kit and caboodle and just make a suave profile on Tinder instead. Not everyone, obviously, but it seems much more socially accepted now to skip the hard parts of life.
So this is me grumping here, I am stating that they should teach kids the old fashioned values again; happiness is a byproduct of living and it comes by only now and then. You should be loyal to your friends and loved ones. You should work hard for what you want in life. You should be humble and show respect to those above you. You should be taught to be responsible. Be able to accept criticism without lashing out in a tantrum. And in the ocean of attention for transgenders and gender-fluids and feminism, there should also be emphasis again on the importance of fatherhood. The value of family and the importance of a man’s role within it. Of course incorporate respect for women as well. Nowadays you see or hear about teenage boys locked in their rooms all day - their own choice - gaming all of their free time and teenage years away online. Of course, some exceptionally good ones can make a career out of it and make some money off of it too, but for the majority it is just a grand way to lose out on your formative teenage years it seems. Here, here and here are some articles about the criticism some people and scientists have on the effects of smartphones on kids' development. I don't have or want a smartphone but understand that they are handy for everybody else. But the trouble with these devices is that people are so tempted to use them for much more than they were designed for (calling, texting, checking the odd thing online). It is more rule than exception now to see people out there, everywhere, constantly pulling out their phones. Go out to have a relaxing evening or conversation with friends and company and what do you know? Nearly all can't help but check their bank accounts, work chats, slack, email, breaking news, posted pictures to Instagram, etc. etc. Anything but interacting with the actual person sitting in front of them. Just do that stuff later on your own lonesome time, and enjoy living in the moment with the ones you love and who love you. We are social beings and need social and verbal cues in the flesh, to talk face to face is important. And let's not start on the many parents of young kids who are buried in their phones (on the bus, in the train, on a terrace) while their kids are whining and twisting themselves into knots for attention. If parents act like this half of the time, how many kids will not feel like they deserve your full attention. I have it easy, talking like this while having no kids of my own, but not once do I check phones or computers with the kids of friends around. And neither with the friends themselves around. Show some control and respect. What's the point of nipping down the pub for a social evening when all they do is all look at their phones? Time for some basic etiquette put into practice perhaps. It makes you wonder why so many kids seem so sad these days. Not to speak of the epidemic of youth suicides, which is another thing that really jumps out these days; in my entire childhood and adolescence in the 80's and 90's, I did not know or hear about one single suicide from under 25's. Of course, there are many possible explanations for that awful trend, but the flight of technology in our lives is most certainly of great importance for it. It's almost all of society now that is escaping into this other world inside their phones. Even in the summer time, on holiday destinations, you see all of the couples sitting together in a restaurant or on a beautiful beach ... looking at their phones instead of talking to each other or enjoying the surroundings, the wind, the view. Relaxing, as one used to do on holiday. So bizarre to see. Science also states that modern technology increases suicide rates, and that the intrusiveness of big tech has an adverse affect on childrens mental state. Also causing addiction issues. Just to prove this, try taking away the smartphone off of a teenager and see the reaction. In some, it would be the same reaction as denying a drug addict a fix.There are many positives about modern technology, and the possibility to stay connected with people through it. The internet is fascinating I think, and offers so much information for which you in the past had to search land and cities and their libraries for. But as usual, every positive has a shadow side too. And saying things in the order of: "Well, WE had it so much worse during the Great Wars, or the Great Depression, so stop bitching" (as well as "Don't be depressed! My aunts nephew has incurable throat cancer, be glad you're not him") might always sounds clever, but it's basically saying that'd it'd be OK if he punched you, because someone up the road got bludgeoned to death with a hammer last week and when you look at it like that, punching's not so bad. We can (and should) still criticize the particular evils of our own time. Before we know it, we live in a Terminator world where everyone lives through consoles in Virtual Reality and we have world armies of sentient robots to deal with. And what do you get from all that coddling, special treatment, all those participation prices? A generation who is abnormally anxious, depressed and fearful of failure. Study after study reveals this. In my and my friends work with students, it is clear that a larger than before portion of them has anxiety and decision-fright. I realize there are many possible causes for this and that nowadays, studying has become much more expensive and much less subsidized in many countries compared to the past. And that life in general has become very expensive, hence, giving more stress. But the rise of a technology-based western society probably plays a part in it too.
Many things may be better in today's world, but I currently mostly see the downsides. Music for instanceBack in the 90's you had to work hard to listen to your favourite music; you had to go out to buy the CD or the cassette you wanted, or go to a club or concert and get drunk and dance like you didn't give a damn about anything. Now everything is easier (you download or stream your music within seconds), but perhaps that also takes away some of the joy we used to feel? You have everything in the palm of your hand, or with the push of a button, but could it be that this in itself makes some things lose some of their value? Now people don't dance as much and ridiculous as we did; apparently it's cheesy or embarrassing, they say. People don't flirt as much; it's insulting or harassment they say. Young people don't communicate or interact with each other as much or as long as we did, unless it's electronically. Half their experiences are experienced online, in some alternate reality one could say, instead of in the real world, with their real bodies and senses. And their lives will progress so fast, looking at a screen instead of actually living it.
Back in the 80's and the 90's, we didn't spend a moment inside the house unless we had to. (We had no mobile phones and the internet had just gone up by the time I was a mid-teenager... there was nothing online yet). Everything was about going out the door, meeting up with school mates, friends, kids from the neighborhood. We played football (soccer) on the grass in rain or shine. We explored the countryside in troops. Later we hung out with other teenagers in the village center, pestering passers by and being generally 'cool' together. We crashed each others houses just to hang about and talk and maybe smoke too. We had such a lot of fun in those days. Seen so many concerts. Fashion was still a way to distinguish yourself from others. We had real life friends, instead of being stuck in front of a screen ,worried what your "friends" that you have never met might think of you. Thinking that your 'online life' matters more than your 'real life'. We had disco parties or music gatherings every weekend. There were many different music directions, bands, streams, subgroups you would identify with. You could go to techno parties, or R&B ones, folk, metal, pop. Bands mostly made music to express themselves artistically, not in a primary bid to score a number one commercial (popular) success. Even a 90's band like the Prodigy wrote music to express their inner demons and express themselves artistically, and not primarily to score a number one cash cow smash hit track. Now everyone hires a Swedish production team and they all streamline things in the same way.. Now most music on the radio sounds alike, a similar amalgam of computer driven mainstream pop, drifting on one catchy tune. I am currently listening to the Top 2000 track list on the Dutch radio, and hardly any contemporary music made the list. Yet the music from the past is recognizable, written by humans instead of computers and often iconic as such. Back in my youth, you had to buy an album if you wanted to hear music (or sit by the radio and hope for it to be played). But by actually buying a music album, you were usually really invested. You saved your money to buy music (unless your parents were rich or spoiled you too much). Or I would sit up all day with my cassette recorder on the ready, to record that one song I loved from the radio. It was an ecstatic feeling when I finally got it. And you would hope that the DJ wouldn't talk through the opening or ending of the song! Which they often did, and you would end up with a corrupted recording, which you then got used to as well over time. You thought you were a genius when you had blank tapes to record songs. You thought technology couldn’t get any better. We really thought this was the cats cream time; just recording your own favourite cassette through the radio. The music industry despaired, thinking that no-one would ever buy an album again in the store, now that everyone could record their own tapes, but people still wanted to buy their favourite bands music on cassette, record or CD later.
Now... you download it all. Whatever, next. And your music albums defined who you were in our times. As my friend said about this: "You bought certain albums or genres because that’s who you were. You knew the 14th or 15th song of an album and you loved the singer more for that obscure song that never made it but you felt like you were a fan because you appreciated ALL of their songs." - I knew the order of every album song by heart; even if I heard one song on the radio, I knew which songs came before it and afterwards. - "Nowadays you just have a song from everyone. You didn’t have a choice but to listen to all the crappy songs because you invested so much money into it. And more often than not, those "crappy" songs grew on you and became some of your favs. As long as you weren’t a pretentious prick and just picked the obscure songs from people to be “different". I used to LOVE getting a new album and opening it up and get the record out of that thin sheet. And to read what was inside the album. It was like a piece of art. And it was all so new! Buying albums was a big deal as a teen." Then later, we thought we were so cool when walkmans came on the scene: how amazing was that, carrying your favourite music around outside.
A research article states "People born in 1995 or later are unhappy, mentally fragile and leading more sheltered lives than previous generations, according to a leading psychologist. This group of young people are the first generation to spend their entire adolescence in the age of the smartphone. A psychology professor has dubbed this latest demographic as the 'iGen' - young people raised on smartphones and social media. According to Professor Jean Twenge from San Diego State University young people are probably the safest generation ever but are maturing at a slower rate than in decades past. Professor Twenge says this generation are less likely to have a driver's licence, to work in a paying job, to go out on dates, to drink alcohol or to go out without their parents compared to past teens. However, the lack of fulfillment felt by young people as a result of their screen-time has led to a spike in depression, self-harm and suicide among young people, she claims. Professor Twenge says smartphones and social media are raising an unhappy, compliant 'iGen'. Professor Twenge and her colleague Professor Keith Campbell, of the University of Georgia, studied more than 40,000 US children aged between two and 17 for a nationwide health survey in 2016. Professor Twenge said: 'They have the sense that they are missing out on something. They realize that being on the phone all the time is probably not the best way to live. 'They don't like it when they're talking to a friend and their friend is looking at their phone. 'Many of them have a recognition of the downsides of that type of living as well.' Professor Twenge said that since 2011 she has witnessed a sudden change in teen behaviour and mental health, with more people feeling lonely or left out, or that they could not do anything right, that their life was not useful. These, she says, are all telltale symptoms of depression. 'Depressive symptoms have climbed 60 per cent in just five years, with rates of self-harm like cutting (themselves) that have doubled or even tripled in girls,' Professor Twenge revealed. 'Teen suicide has doubled in a few years. Right at the time when smartphones became common, those mental health issues started to show up. 'That change in how teens spend their time is so fundamental for mental health.' In order to help young people weather the storm that comes from social media, Professor Twenge advises parents and children alike to proactively take control of their leisure time. Previous research has suggested limiting digital media use to about two hours a day or less for the mental wellbeing of 13 to 18-year-olds." Jean Twenge is an author whose works include 'iGen' and 'Generation Me.'
He has had laser treatments, but does not get sufficient results from them. He read this blog post and wants to try my anti flushing medication; clonidine, propranolol and perhaps also mirtazapine and an antihistamine like Xyzal. But primarily clonidine and propranolol. The problem is that he cannot find a dermatologist who is understanding of his flushing problem, and willing to let him try this meds. He asked my advise, and I think anyone in this same situation needs to offer his or her specialist or GP some research papers to convince them. If you scroll up in this post, you will find a list of research papers for each of the medication discussed. Pubmed articles are particularly handy to print out and to show, as medical specialists like to see in black and white that an off-label medication is actually effective for the symptom at hand. They are often worried to go off the beaten paths and away from the textbook treatment protocols. But it is important to explain that up until now, there is no official flushing treatment. Nothing. The only thing specifically designed to control flushing, Mirvaso gel, is a liability of a product that has made many users flush worse or made their rosacea worse even in some cases. Medication in pill form is much less risky and can actually really help controlling flushing. A doctor needs to compare it to hot flushes, but then ongoing ones that are not hormone driven often, but that nevertheless widen the blood vessels of the face regularly. Causing pain, heat and worsening of the dilation of the weakened vascular network in the face. Just like with untreated varicose veins. We need to control the flushing, in order to be able to control rosacea subtype 1 or neurogenic rosacea.
I am always worried about invasive treatments like laser or IPL for our subtype of rosacea, to be honest... If they stir up your rosacea and make it worse (which was the case for me), you are often stuck with the outcome! Whereas with medication, anything but steroids is a temporary thing. You try them and if you feel things are getting worse on them, you stop taking them and no long term harm is done. So it surprises me always that dermatologists are more easily swayed to offer laser or IPL treatments than they want to prescribe prescription medication. After all, flushing is a very difficult symptom to treat and if left untreated, it can worsen rosacea over the years and make the problem harder and harder to tackle. He also asked about what medication to best use, or start with, to reduce facial flushing. My advise: "I would start with clonidine if I were you. No doubt about it. 0,05 mg seems a very low dose.. I take 0,150 mg every 8 hours, so 3 times a day. You could start with 0,1 mg, three times a day. This is still a reasonably low dose, but I don't think going much lower will be doing much for the flushing tbh. It is very important to take clonidine 2 to 3 times a day, I'd say 3 times as after 8 hours it can give rebound redness and flushing. This medication needs to have a stable blood level dose, and if you want to stop, you slowly taper its use off. I would try this for one month, then re-evaluate. And add propranolol then. I find it the best beta-blocker out of all the ones, for flushing and redness. But opinions differ on that one. Propranolol 40 mg pills can be taken as needed. You don't need to take them at specific intervals. No rebound issues. But I take 40 mg 3 times a day, together with the clonidine. When I have a bad flare, I take 80 mg (two pills) instead. Again, i would try this med for a month and then re-evaluate again." Hope this helps someone :) And here are two of my cats, actual brothers (Koshka and Piotr), also dubbed the Karamazov Brothers. They are real gangsters, and they look none too pleased with what they are seeing (being the youngest children of my friend, invading their territory).
Songs of the day
January 4th 2019 - Charlie Hebdo
Happy new year. At this time of year, I will for some time to come probably think about the atrocious murders of French journalists on one of the first fresh days of the new year of 2015. On January 7th, 2015 a good portion of the journalists and cartoonists from French magazine Charlie Hebdo were wiped out by terrorists, because they published mocking cartoons of everything and everyone, including Islamists and their prophet. Charlie Hebdo is a satirical French magazine, mocking every day life, politics and all religion. One of the very very few publishers left that dare to do so. I was sick of this event for weeks afterwards. One of those events that while they happen, you realize that they are history being formed right in front of you. Era defining events, just like back in 2001, when I was still a student and by pure chance was home during the afternoon, watching TV and seeing those two planes fly right into the World Trade Towers. Despite being so far away (I'm Dutch), I felt the urgency and the shock of it instantly. When the first plane went into the tower on TV, I called my dad right away - who is a news and history buff - who thought I was taking the piss, and initially refused to believe me and put the telly on. Only to call back a minute later in sheer shock. What the fuck is going on there. Good grief, there comes another plane! After the attack on Charlie Hebdo, France -without knowing it - was only dealing with their first of many shocks to come, because nation shattering other attacks were still waiting around the corner. In November of that same year 2015, 90 young people were massacred during a rock concert in Paris, and 40 more were killed that same night on the streets and in café's. And on 14 July of 2016, a truck driven by another religious zealot would mow down 86 men, women and children during a fire works show on the coast. And those are only the major attacks. It gets reported on, but the news channels are ever so careful not to stigmatize anyone and prefer to speak of 'Disturbed people', despite the purpetrators themselves being usually far from mysterious or subtle about who they do all this for.
At the time, most people in the free west were quick to condemn the Charlie killings, and newspaper chefs loved the limelight, explaining how shocked they were and how everyone 'was' Charlie and loved Charlie. But hardly any newspaper or magazine out there dared to publish the cartoon that got them more or less killed. Try seeing this interview, (I add the video itself below, twice, both the direct youtube linked one, as well as one I upload directly on here in case the youtube one gets removed in the future). In the interview, one of the few surviving journalists of Charlie Hebdo reflects on it all and especially on the refusal of newspapers to report properly and show the cartoon that made the news. At minute 5:52 he says:
The man has balls. One of the few who don't bend backwards to not 'offend' anyone in the process of free press. Probably not 'bon ton' to say these days but I hate political correctness; it stifles creativity and free open honest discussions. Just like i don't think it's fair nor constructive to get into hysterics over every opinion you may not agree with, and slinging the racist card willy-nilly around, or the misogyny card, or the 'hate' card. Childish ways half the time to shut those with different opinions down, and showing a grave lack of intellectual tolerance for points of view that are different from your own. So anyway, even right after the attack on his magazines staff members, all the regular newspapers refused to publish the cartoon that (ultimately) got Charlie Hebdo members murdered. Despite it being at the core of the news event itself. I saw one editor in chief of one of the biggest Dutch newspapers (Volkskrant) say on national TV that they declined to do so, because he has a small family and does not want to get death threats, or get police protection. Perhaps the man should have gotten himself another profession. Instead, people like Luz and friends are supposed to take all the risk - as the survivors live with 24/7 police protection until this day, mostly paid by themselves - for something that should be completely normal in western society. Or that used to be normal. And not wanting to offend any readers is fine in itself, but it's the hypocrisy that bucks, because it is still fine apparently to publish cartoons of Catholic priests in newspapers (after all, the days of the Catholic Inquisition and stakes and slaughterparties are long in the past now so nothing to fear from them anymore). Or most other religions. Politicians can also be mocked, but not if they come from Saudi Arabia.. Seems all a bit opportunistic and hypocritical. Either you allow it all (within the confines of the law), or you censor all religious mocking in your newspaper, and also stop publishing cartoons of Catholic priests doing bad shit. As well as stop with the publishing of all political cartoons, because everyone can get ridiculed except the Islamic politicians now. Either you allow no-one to be mocked, or you allow everyone to be mocked, as it probably should be in the free western world, and you don't pick and choose from religions and politicians based on the political agenda of the day or the least risks of getting your offices bombed. I think the New York Times and international newspapers operate just the same, quite cowardly. Even if mocking of those in religious or political power is in bad taste, it is still better than censorship on mocking altogether. Even those in power need to be criticized and criticized in a free society. Without risk of getting prosecuted. Unless they of course break the law by doing so (abject discrimination, to think of something. Or calling up for people to be beheaded, something we've heard and seen from religious circles in the past). My dad disagrees by the way :) He has always ranted against Christianity, as long as I can remember, but with regards to Islam he thinks that the West should just ignore them and not provoke. So Catholic satirical cartoons are OK, but not Islamic ones, because he thinks it is nothing but provocation, given that their God is not supposed to be drawn in an image.
At the time, most people in the free west were quick to condemn the Charlie killings, and newspaper chefs loved the limelight, explaining how shocked they were and how everyone 'was' Charlie and loved Charlie. But hardly any newspaper or magazine out there dared to publish the cartoon that got them more or less killed. Try seeing this interview, (I add the video itself below, twice, both the direct youtube linked one, as well as one I upload directly on here in case the youtube one gets removed in the future). In the interview, one of the few surviving journalists of Charlie Hebdo reflects on it all and especially on the refusal of newspapers to report properly and show the cartoon that made the news. At minute 5:52 he says:"Humor doesn't kill anyone. We can't be prisoners of (sense of) humor of others. There are cartoonists in France who say, "We can no longer draw things that could offend someone elsewhere in the world." But if we take into account the positions and opinions of of the whole world, we might as well tear up our drawings. It's all over. It's all over. I was pretty sad when I saw some magazine covers such as the New York Times refusing to publish our front page. Out of fear of doing some harm! "
The man has balls. One of the few who don't bend backwards to not 'offend' anyone in the process of free press. Probably not 'bon ton' to say these days but I hate political correctness; it stifles creativity and free open honest discussions. Just like i don't think it's fair nor constructive to get into hysterics over every opinion you may not agree with, and slinging the racist card willy-nilly around, or the misogyny card, or the 'hate' card. Childish ways half the time to shut those with different opinions down, and showing a grave lack of intellectual tolerance for points of view that are different from your own. So anyway, even right after the attack on his magazines staff members, all the regular newspapers refused to publish the cartoon that (ultimately) got Charlie Hebdo members murdered. Despite it being at the core of the news event itself. I saw one editor in chief of one of the biggest Dutch newspapers (Volkskrant) say on national TV that they declined to do so, because he has a small family and does not want to get death threats, or get police protection. Perhaps the man should have gotten himself another profession. Instead, people like Luz and friends are supposed to take all the risk - as the survivors live with 24/7 police protection until this day, mostly paid by themselves - for something that should be completely normal in western society. Or that used to be normal. And not wanting to offend any readers is fine in itself, but it's the hypocrisy that bucks, because it is still fine apparently to publish cartoons of Catholic priests in newspapers (after all, the days of the Catholic Inquisition and stakes and slaughterparties are long in the past now so nothing to fear from them anymore). Or most other religions. Politicians can also be mocked, but not if they come from Saudi Arabia.. Seems all a bit opportunistic and hypocritical. Either you allow it all (within the confines of the law), or you censor all religious mocking in your newspaper, and also stop publishing cartoons of Catholic priests doing bad shit. As well as stop with the publishing of all political cartoons, because everyone can get ridiculed except the Islamic politicians now. Either you allow no-one to be mocked, or you allow everyone to be mocked, as it probably should be in the free western world, and you don't pick and choose from religions and politicians based on the political agenda of the day or the least risks of getting your offices bombed. I think the New York Times and international newspapers operate just the same, quite cowardly. Even if mocking of those in religious or political power is in bad taste, it is still better than censorship on mocking altogether. Even those in power need to be criticized and criticized in a free society. Without risk of getting prosecuted. Unless they of course break the law by doing so (abject discrimination, to think of something. Or calling up for people to be beheaded, something we've heard and seen from religious circles in the past). My dad disagrees by the way :) He has always ranted against Christianity, as long as I can remember, but with regards to Islam he thinks that the West should just ignore them and not provoke. So Catholic satirical cartoons are OK, but not Islamic ones, because he thinks it is nothing but provocation, given that their God is not supposed to be drawn in an image.
December 20th 2018
It's still very chilly! My skin has been so so. Some very sore and red days and also some days where the redness and burning weren't too bad. I blame the cold dry air outside and the need to have the heating on indoors. I have some small cold urticaria boils starting to form on my cheeks again (bleh!), despite my intention to keep indoor air warm enough to prevent them from forming, as I still use ventilators which make cold air feel twice as cold. But I can't have it too warm inside either, or my burning will get worse.... Same ordeal every winter, basically! (And every summer for that matter, with the air conditioning).
I have had to travel quite a bit too the past weeks, including a long trip to a funeral.. While respecting the privacy of the family, I will say that this funeral service was beautiful I thought.. Lots of people there. Person in question was in many clubs and organizations, and comes from a huge family. They rented a lovely intimate place in the forest (he wanted to be cremated), and the room was very high, modern but decorated with coloured glass, almost like in a church. Light also came in from the ceiling, allowing you to peer at the sky. The choir he sang in was there and sang some catholic songs, there was a sermon and there were speeches from the kids. It was beautiful and also emotional, also due to the music that was being played and the memories that were being discussed in speeches. The day before he passed away had been the anniversary of my sister J's passing (14 years ago), so I was already a bit more emotional perhaps. This song was played:
A French song, but everyone in the Netherlands knows it because it has a famous Dutch version (cover). Its a melancholic song, about how old times change and how modernity pushes away the memory of the old village where many people grew up in. Someone gave a short speech about his time as a scout and what habits he brought back to family life from the scouts (funny memories). Another read out a poem, which was very touching. A son talked about memories of some of the lessons his dad had taught the kids. First: dry your face first with your towel after a shower, before you dry your behind. Second: You can only dig when you know where to dig; when they went on holiday to France as a family, they would camp in a tent. And once it started to rain, everyone else on the comping would ran around like headless chickens, digging irrigation canals all around their tent to get rid of the flooding. But not father. He would wait and observe and only start digging once he knew exactly where the water was running from and to and where that ditch should be made. "And thereby he saved us multiple times from drowing".
Third rule: Take good care of the other. He had learnt from his own dad that the children should have it better than the parents had. And he wanted that also for his own kids. Now was that not thát difficult, he joked, because none of his kids had been born before or during world war two and the financial crisis like he himself. But he also told about how his dad had taken care of their mother when she had cancer (for ten years) and how he never left her side and always was there for her. But still he would sometimes wonder if he had done things the right way, if he had done well. Even when he tended to her grave. And that he wanted to say to his dad; "Dad, you did well." Last speech was uplifting, telling about how this relative would sneak out of his bed as a child to sneakily glance down the stairs to see the dad and mother kiss in front of the door as teenagers. And the many things he had introduced in their household, certain strong alcohol for instance. Or the first type of modern motorcycle that nobody else yet had seen. He also recalled what a social, amicable man he had been, always joining clubs and organizing things. He joked that he was sure that if there is a club house in heaven, God would have asked him right away to take over the job from him and that he would be sitting in that clubhouse right now already, most likely. Anyway, am not sure why I give all these details about a person unknown to any reader, but I guess I want to draw an image of the way funerals (cremations I should say) are held in the Netherlands. 
Some strange things happened tooHis son is very no-nonsense. He told me that some strange things had happened. He had tried calling his dads house after his death, knowing his sister was already staying there. But the line was constantly occupied. He tried the next day and it was still occupied. He then contacted his sister through whatsapp and she said the phone was not being used and the receiver was just like normal placed on the phone. It should work, and when she picked the thing up, she heard the usual beep tone and she could use the phone as normal too. Yet, every time he called it, it was making the occupied sound. Pretty much ever since his fathers passing. And the son also recalled that he has a smartphone, which he has been given by his brother and father. He has little interest in nor knowledge of phone technology and all of the past year and a half, the phone had the same background image when you start it up. Now the night he slept in his fathers house, he woke up the next morning and put on his phone... to see his normal background image gone and a large background photo of a blue sky with clouds on it. He asked the only relative in the house if she had somehow touched his phone and did that? No. Nobody did anything. He is not religious or into supernatural stuff but this was very weird... Many years ago, when his mother had died, the next morning it had been snowing and when they opened the curtains, the hill opposite the house was all white, with a huge heart shape carved out in it. Might all be coincidences but it gives their family a warm feeling in their hearts, awww.
When my own sister died, many strange things happened too. I dreamed about her about 2 months after her passing and she came round, very vividly, hugged me and talked to me. I said to her that it was not real, just a dream, and she kept insisting it was real and that she would prove it to me. I had 3 framed photos of her hanging in my kitchen, all stiff in line under the other. She would hang them out of line she said. I woke up, checked the kitchen right away and was really shocked to see them all hanging fully out of order. No window or door had been open, nobody could have done that realistically. And my mum had the strangest things too. Or so she says at least, I never saw it first hand. She says that she left the house the week after J's passing, and had Christmas decorations on the table. She had blown out the candles of it before leaving the house, checked twice for it as feared house fires. All out. When she came back a few hours later, the candles were burning again. Nobody had been in the house in the meantime. And she also swears that a week afterwards there had come a crack in the car window. A cracked line. She wanted to go to the repair garage with it but the next morning, while heading out, the crack was gone. Nothing to be seen anymore. Strange stuff... Although I am sure there are logical explanations for it, perhaps? Some mystery and innuendo is nice however.. Don't think I want to dig too deep finding out plausible explanations for these things :)
Christmas is close by now
I am not a fan myself of the ways in which it has become so commercialized, and how weeks in advance, all you see and hear on tv, radio, in magazines etc is that darn Christmas build up. Commerce has hijacked all of it; from Valentines day to Easter to Sinterklaas to Christmas, it has all become about buying as much stuff you don't need and joining the masses in the hysteria. (Am I already sounding like Ebenezer Scrooge hehe?). But truly; its original meaning is long gone. People take every opportunity to cash and pig out. Life should be one long stream of 'experiences' and happiness these days, after all. Abundantly photographed and shared online. I don't mind Christmas, but Christmas adds already on TV at the start of November? C'mon... Just the way the world turns nowadays though, what can you do about it short of leaving the TV and computer off. I will spend Christmas with my friend Sara and her family as usual. I love her 3 kids, who always seem so happy to come round and see the cats as they don't have any pets themselves. Of course one can also celebrate Festivus instead haha (John's suggestion, thanks). Its all bogus (a pagan holiday stolen by Christians), we might just as well invent our own celebration.. How about a celebration of chocolate?
My friend John told me about an article he read a while backAbout how our sense of time changes as we age. It appears the more we age the more time seems to pass faster. If we feel that already now in our 30's, imagine how fast time will seem to go by at 80. As a kid time does seem to crawl by slowly.. Maybe because as kids we were allowed to be bored, or maybe it is actually some brain function itself that creates that illusion of slower passing time. We have less autonomy for sure and are more reliant on parents to tell us what to do and how to and when. As a child or adolescent, you want to be an adult asap, because you want autonomy. But you tend to forget that with that comes worries and responsibilities :D From not a care in the world and blissfully happy with every new discovery made, the life of young children generally gets more grim once they head into adolescence. Bit by bit life starts to chip away at you. Heart breaks, rejections. Responsibilities. Actual consequences for actions, that are no longer caught by your parents. Knock-backs. Worries about your figure that ruin even the previously unspoiled joy of overeating chips, hamburgers and ice cream. As kids all we wanted to do was to grow up, and then once we grew up, all we wanted to do was staying young. Perhaps it has to do with time seemingly going slowly when you want to get somewhere, but it going more quickly once you are there and you want to enjoy it. Its a strange discrepancy for sure. And of course, being miserable does make time appear to go slower too. My life already feels like a very long slog haha.
I also read some terrible news the other dayAll those nice (gluten free) rice products are apparently giving you cancer, as they are so full of arsenic. Science says it raises the risks of lung cancer, skin cancer and bladder cancer. Swedish government already tells parents to allow their kids under 6 years old to only eat rice products once a week. Shock.... I have literally eaten rice products every day for the past 20 years goddammit. Rice milk daily, rice crackers, rice pasta. Making my own rice cakes. Rice porridge! I am so annoyed now, as what else am I supposed to eat instead for carbohydrates? Sweet potatoes? Grains and wheat make my belly swell up too bad and give me cramps (I have colitis and some food allergies). Grrrrrr, I love my rice... I did read some ways to reduce the arsenic load, going for white rice instead of brown rice, buying Pakistani rice, rinsing it and washing it profusely. But still, there will be a good 30% of its original arsenic level in it all the same.. I don't even dare to check my blood arsenic levels. They must be high, if the advise is now to stick to one day of rice a week. I ate it three time a day basically for the past two decades. My friend John came with the solution luckily: "So that's it: I'm going on all chocolate diet just to be safe.. Not much is safe these days anymore, so best stick to Nutella. Because let's face it, that has really proven to be safe. Over 1000 peer reviewed papers confirm it."
I also was sent this video by a friend and it made me laugh:
It's the ManBearPig. It's from South Park. It's the one where they are taking the piss out of Al Gore and his climate change work I think... How he lectures and then made a fortune from having an interest in the carbon credit scheme.
Got this interesting video from a friend:
(Just click the play button a dozen times and it will start)
The message of that video is basically that we can't know for sure that we're not brains in a vatNot if we live in a Virtual Reality world that seems so real, where the simulation solife-like, that we cannot notice the difference. I wonder IF it were true (I don't think it is, but lets roll with it for an interesting topic), if there would also be a script for any of us perhaps? Are we following a narrative? Or is it all up to chance? Rules like: don't be boring or you get written out :) But there are so many chance encounters in life, so many roads we can take and feel we have autonomy over. People dying in bad accidents, murders.... were they then also programmed to go like that? (In this hypothetical scenario of living in VR?). Maybe éven in the virtual reality simulated world-version, such deaths would be the result of some bad human choices made beforehand, leading up to the right circumstances for Game Over? Maybe they just played the game really badly, in some cases. In a way, the rules stay the same, whether or not it is real life or virtual reality. You still need to make the right decisions to avoid The End. There must be cheat codes though. In the same way in which gamers can buy themselves some extra credits (the game Quake apparently has cheat codes that provides the gamer with unlimited ammunition for instance). But I am not quite sure what the life game equivalent of that could be... Maybe the way in which gathering enough money can bring you a certain level of safety in life. Or in the way people could buy themselves absolution by giving money to the Catholic Church perhaps :) As was the case in the old days.. But imagine it being possible, that no matter where you are in the world, even in remote places, food and water just show up when you type in a specific code. The way Jesus is said to just needed to say the word to change water in wine (according to... well no eye witnesses). But either way, both in real life and in games, it only leads to richer corrupt corporations and poorer individuals. But whether or not what we perceive as reality may (or may not) in fact be a hologram, or an after-image, or simulation, or even a dream; it is really irrelevant in the end what it is called. Whether an individual is in actuality a disembodied brain, written code, or a creation within the conscience of an entity…is irrelevant. The only thing that really matters right now, is that we now experience "it" as reality. (I am aware of the fact that all matter is energy, that all of existence [reference to Nature] is composed of energy, that there may indeed exist innumerable levels/ variations of existence, that…..well, it is easy to see why I avert that ‘rabbit hole’ and elect the measurable). We have the ability to make choices and to take actions and change the outcome of things, and that in itself is probably all we need to feel autonomous and in control. Autonomy is a partial myth as well ultimately, as we are dictated more by pre-programmed patterns than we might realize or want to acknowledge (and limited by the boundaries of our actual environment). But when I face two roads, I may be more inclined to take one over the other (due to genetics, past patterns, brain structure, you name it), but I can still rebel and take the other road. Hence the suggestion of autonomy.
And I listened more closely to a song I quite like
It says:
Now I understand why we die.
The reason we die is to give us the opportunity to understand what life’s all about –
by letting go,
because then we come to a situation that the ego can’t deal with.
When we are no longer hypnotize by that,
then our natural consciousnesses can see clearly what all this universe is for.
Its a statement from a British philosopher, Alan Watts, or actually, from someone he met. In 1958 Alan Watts was in Zurich, and there met a German diplomat, Karlfried von Dürckheim, who had studied Zen in Japan, and when he came back after the war, he opened a meditation school and retreat in the Black Forest. And he said to Watts: “When one gets to an extreme – that is to say to the point when you realize there is nothing you can do about life, nothing you can not do about life, then you’re the mosquito biting the iron bull." Well, so in the same way he said, “Look. You heard a bomb coming at you, you could hear it whistle, and you knew it was right above you and headed straight at you and that you were finished. And you accepted it. And suddenly, there was a strange feeling that everything is absolutely clear. You suddenly see that there isn’t a grain of dust in the whole universe that’s in the wrong place. That you understand completely, absolutely, totally what it’s all about, cause’ you can’t say what it is.” But he said in so many cases the bomb was a dud, and they lived to tell the tale.
Or, he said, you were a displaced refugee. You had lost your family, you didn’t know whether they even existed, you were miles from your home, you didn’t know whether it existed, you had lost your job, your very identity. You were absolutely nowhere, and you accepted it, and suddenly you were as light as a feather and free as the air. Now he said, so many people have had those experiences and they’d talk about them to their families and friends, and they’d say, “Oh well, you were under terrific pressure and you probably had some hallucination, you know?” Well he said, “I am showing those people that so far from having a hallucination, those were the few, few occasions in which they woke up.” He said that this is always the opportunity presented by death. That if one can go into death with eyes open, and have somebody help you if necessary, to give up before your die, to give yourself over I suppose he means, then this extraordinary thing can apparently happen to you. So that from your standpoint in that position at that time, you would say, “I wouldn’t have missed that opportunity for the world – now I understand why we die. The reason we die is to give us the opportunity to understand what life’s all about – by letting go, because then we come to a situation that the ego can’t deal with. When we are no longer hypnotize by that, then our natural consciousnesses can see clearly what all this universe is for. But he continued to say that as a society, we are starting to lose sight of this enriching opportunity, because of the ways in which we institutionalize death out of the way, instead of having a socially understood acceptance of death and rejoicing in death. In modern western life, death is more or less ignored, pushed away; someone one does not speak or think about. It is personal also, but Von Dürckheim compares death to a rite of passage. "There are certainly some forms of celebrating a wedding which I would find a total bore, and quite offensive; other ways would be good, I would enjoy it. I’m not saying that you’ve gotta get mixed up with a lot of people coming laughing around you and giving you presents and cards and everything because you’re going to die. But, I’m only indicating a general thing, that the doctor, the ministers, the psychiatrists, and above all us – really owe it to our friends to work out an entirely new approach to death."
He explains how Death in our day and age has nothing but negativity surrounding it. Frankly, that is how I see it too! Something to fear and mourn. But Von Dürckheim says that from earliest childhood, children nowadays learn to put on long faces and say, “Aahhhh, that’s too bad.” when someone passes away. Even Christians, who think they’re going to heaven, get absolutely morbid about it. And so, this is purely a frightful thing, to lose someone you love, or even for a dying person to worry about what on Earth the partner, the children, or whomever are going to do without me… Von Dürckheim acknowledges that he understands that there is a certain worry involved in all that, but nobody is indispensable he thinks. And there comes a point when you have to say, “I’m sorry, but I am completely going to abandon responsibility for anything, because there is no further way I can do it.” This is another way of surrender. And then a curious thing occurs he says: in that moment when all is dropped, suddenly it dawns on you that "to be important, existence does not have to go on any longer than a moment. Quantitative continuity is of no value. How long can you hold your breath? Who cares?" We would understand the mystery of life, because death is - in a certain sense - the source of life. "Just as we see in nature, when the leaves fall from the trees, they mold and rot, and this supplies hummus from which more plants can grow, it’s a cycle like that. But in every way, symbolic and otherwise, human beings try to stop that cycle. "
Unamuno said, “Human beings are the only species that horde their dead.” "And therefore we try to make the body unpalatable to the worms, and so to stop life, as if to be eaten in due course were an indignity to the human being, whereas we eat everything else and we give nothing back. [..] More and more one regards the healthy and inevitable and natural transformations of the body as pathological. Everything about us has become over-interfered with by specialists, and less and less the province of our own preferences. It’s very very hard indeed to die in your own way, without some blasted bunch of relatives that come fussing around and insisting that you go to a hospital, that you get fixed with the tortures of being fed through tubes and things to keep you alive indefinitely and waste the family savings. It’s even a crime to commit suicide. Now this is simply nonsense. It’s this perfect panic to survive at all costs." Well, I am not agreeing 100% with all of this, but it made for an interesting read I thought.I hope it made someone out there reflect on this topic perhaps.
I am working on a longer update blog post, but for now, this made me feel so good, watching this the other day. I love dance contests and these kids version is adorable I think! Yeh the kids act like mini adults with their facial expressions, but their energy and the joy that they exude is pretty contageous, AWWWWWW. This little professional dancer JT Church also looks like the spitting image of my darling nephew Tim, so extra cuteness factor watching it for us. Gosh what a little piece of licorice, as we say for super cuteness in Dutch (wat een dropje..). The super fun Honey Boo Boo also joins the show and bursts with self confidence. And below those videos, a super sweet cat videoAnother performance by JT in another show some years ago, think this choreography also won an award
The man playing seems SOOOO wonderful! He saves stray cats from the street, often wounded, and takes them home to cure them with love and takes them to the vet if needed too. Some are rehomed later, some stay with him. His instagram is bursting with love, recommendation!
Also, my skin is still quite pink and sensitive. I did a big scrub and that made the burning less (had too much dead skin build up, which for whatever reason won't just flake off by itself). I am more red now but my skin feels less painful and more 'light'. (I use no make-up normally, so sorry for the shitty half gone eyebrows that are unfashionably unretouched and the lack of eye lashes and the blotchy skin and watery eyes and little birds mouth). Also, the more I read and try to write here about other flushing disorders, especially about erythromelalgia (EM), the more I start to think that this extreme face flushing and burning might not be strictly 'rosacea'. I feel there is a grey zone, where bad neurogenic/vascular rosacea falls into, as well as EM, as well as perhaps bad flushing from neuropathic pain disorders. The more I hear and read, the more it seems that it is extreme to flush this bad. And the few people I know who have it too, all seem to balance on the edge of different possible diagnosis. For instance, one of the derms I see thinks I have a mast cell disorder, hence the violent flushing. I also know a bad flusher who's doctor says she must have erythromelalgia. I joined an EM facebook group and there are many more people there with extreme face flushing and burning! More than in your average rosacea group. However they tend to also have burning hands and feet. My hands do burn but that has been diagnosed as Raynaud's syndrome in hospital. But the division lines are blurry and I might just as well have EM instead of straight forward rosacea. But... at the end of the day, they are labels and EM doctors also struggle to treat the facial burning and flushing that comes with all these other disorders, so we end up either way with a flushing problem that is hard to treat; both for dermatologists as well as for neurologists as well as for a rheumatologist, or a vascular specialist...
Also, my skin is still quite pink and sensitive. I did a big scrub and that made the burning less (had too much dead skin build up, which for whatever reason won't just flake off by itself). I am more red now but my skin feels less painful and more 'light'. (I use no make-up normally, so sorry for the shitty half gone eyebrows that are unfashionably unretouched and the lack of eye lashes and the blotchy skin and watery eyes and little birds mouth). Also, the more I read and try to write here about other flushing disorders, especially about erythromelalgia (EM), the more I start to think that this extreme face flushing and burning might not be strictly 'rosacea'. I feel there is a grey zone, where bad neurogenic/vascular rosacea falls into, as well as EM, as well as perhaps bad flushing from neuropathic pain disorders. The more I hear and read, the more it seems that it is extreme to flush this bad. And the few people I know who have it too, all seem to balance on the edge of different possible diagnosis. For instance, one of the derms I see thinks I have a mast cell disorder, hence the violent flushing. I also know a bad flusher who's doctor says she must have erythromelalgia. I joined an EM facebook group and there are many more people there with extreme face flushing and burning! More than in your average rosacea group. However they tend to also have burning hands and feet. My hands do burn but that has been diagnosed as Raynaud's syndrome in hospital. But the division lines are blurry and I might just as well have EM instead of straight forward rosacea. But... at the end of the day, they are labels and EM doctors also struggle to treat the facial burning and flushing that comes with all these other disorders, so we end up either way with a flushing problem that is hard to treat; both for dermatologists as well as for neurologists as well as for a rheumatologist, or a vascular specialist...
It's been very chilly lately over here. Only a few degrees Celsius outside, so I'm bundling up. So far my rosacea has behaved well. I took the train to friends and went from cold to the warm indoors and out again, without big flushing issues. I asked them to not have it warmer than 21 degrees Celsius please in the house, which was fine to them (luckily!). Their young girls and I played hide and seek outside with some other neighbour kids for a long time, then played indoors and made dinner all together. I brought my cold packs but didn't need them, probably because I could cool off while playing games outside. It is also not yet too stark a temperature difference; once it starts to freeze outside, my rosacea will no doubt explode again, like most winters so far. I hope I can avoid the cold urticaria from the previous years; fluid filled itchy hives on my cheeks that last for weeks to months. I get them when my skin gets too cold. I always use a ventilator, well except for when I'm out the door or traveling, but normally when I'm home or working or sleeping, a small one is always on to keep my face from flushing and burning, and I never have cold urticaria issues in summer with the air conditioning on, but in winter the temperatures combined with that fan might mean too much cold air on my face. So I am trying to keep the indoor temperature a bit stable at 16-17 degrees Celsius. I had to be in town on Saturday to go shopping with a friend, and it was very cold that day too, while the shops had cranked the temperatures up. I live in the inner city but still have to bike about 5 to 10 minutes to get to the heart of town, and I always try to leave on time and bike calmly when it's this cold. I don't want to overheat or overexert myself, because once I step off the bike, I usually start to flush then. I also usually bike slower or walk the last bit so that my heart rate goes down gradually and my blood vessels can adjust a bit. So quite a lot to think about :( Luckily this Saturday my skin behaved and aside from pink cheeks from the cold, there was no flushing or burning. So I could enjoy spending time with my friend and buying some winter clothes and new shoes.
I saw my GP yesterday and told her about my burning fingers 
People who don't have this flushing / rosacea related health shit, don't seem to understand easily how debilitating it all isI still get asked by friends about why not taking this or that job. Why not being more ambitious with work yada yada. I have to keep explaining that working in a museum, for instance, is a problem for me with my need for ventilators and climate control. I usually don't wear any make-up as it aggravates my skin, so I am not mad about public functions either. I also can't do much with the messages (pep talks) I sometimes receive about 'just getting on with things'; not putting life on hold etc. Sweet as it is intended, this problem I have has nothing to do with me being self conscious about how I look. I travel, I meet people, I don't hide inside, and I am not ashamed of what I look like, not even with a swollen red bloated face. I am, however, beaten down by the pain. The burning, the throbbing heat in my face when I am flushed. It is like acid sometimes, so painful, and the only thing I want to do when flared up is isolate myself, cool my face, and get lost in a book or in work, anything I can do with a fan blowing at the same time. It can be very draining. I'm too exhausted to read my emails half the time. I don't feel it has much to do with motivating myself, but more with dealing with the situation at hand as best as I can, and trying to control the flushing as much as possible. And to use the good periods to go out and be social and force myself to just partake in normal life a bit. My life kind of shifts between two extremes: calm solitude, alternated with hectic social life. Quite extreme, wham! Family and events are crammed into a week.
And it helps to have some good people around me that are caring and supportive when i'm low. There are many people I know that like to care for someone.. especially when they are not having kids in their direct life, and who flourish when they can nurture or care for someone. It is not something that gets a lot of limelight in today's individualistic society, but they do exist. But allowing someone else to come close can be scary, especially as people in general have the ability (and sometimes tendency) to disappoint us... Having a firm protective wall up is important for people like me I think... as we are sensitive and can be caught off guard and get imbalanced when someone disappoints us or turns out to be unreliable. But never let go of the ability to give another human being a chance. Time and experience are the only way to find out if the other is worth our trust. I find that normally its better to have a few people, a little support network. So you're not overloading one or two people continually. Not everyone has the energy to be a full on, constant contact and reliance person to the other, and also; not every person offers the same type of bond; has the same interests as you.. One friend can be really good to talk relationship problems with (to name something), another can have different angles to approach every day life and another might have a happy go lucky personality and be a real positive upbeat influence. Although there is often always still one person who you feel you can trust completely. And meeting new pillars of support can be hard, especially when you are in your late 30's.. People all settle down and stick to their fixed circle of people over here. Not to mention their kids and direct family.
I have seen a couple of psychiatrists and psychologists during my 20's. I think mainly because back then, it was the dermatology department of the hospital that forced young dermatology patients to see a psych. for at least 10 sessions, in a bid to reduce suicide/depression levels in this group of patients. It seemed important to me to go, also because I was very restless back then and suffered deeply from the anxiety and isolation that my rosacea gave me. Nowadays I have accepted things much more and found a balance for myself that I am more happy with. I don't know if that counselling helped with that, in retrospect. I feel it didn't but you never know. It can be hard to find a good fit when it comes to counselors: I have seen four different ones in the past and only one connected with me really. Or connected to my issues I mean. The rest didn't seem to 'get' the problems I have due to my rosacea, burning and flushing, and didn't really help me in the way I wanted to be helped; with suggestions for practical changes. I don't want to do psychoanalysis for four months and talk about my youth for 60 euro an hour. My issues don't stem from my youth, they stem from rosacea and having a burning red face since age 19.. Nevertheless I did end up talking once a week, for six whole months, about my past and had a psychoanalyst dig into it, trying to find patterns and explanations. I don't think there is anything there, other than a happy, free childhood and a difficult adolescence. Maybe some things that happened back then made me more prone to despair once my rosacea started. But for me, unraveling those threads didn't help me practically with the hardships of an isolated life and daily pain. I wanted help with that.
I didn't feel smarter than these psychologists or anything, but I did feel at some point that there was some obvious transparency regarding what text books and protocols they were following. I did not like answering the most personal questions, from a time that felt like another life almost, but whenever I asked them an opinion on something current and pressing and literally asked; what do you think? They refused to answer! They don't want to throw in their subjective opinion (aka; they want to follow the protocol) and that just didn't work for me; talking to a question shooting wall of professionalism. I always said that I knew they aren't allowed to steer my decisions in any way, but that I talked to them for hours on end about certain topics and would like at least a hint of personal opinion back. Nope... Their silent gaze, making notes, often seeming far away, lost in their heads, just alienated me further. I had a practical problem, not related to bad parents or trauma's from childhood; the reality of that day was bad enough. Frankly feel that counseling someone with a chronic, debilitating, visual illness is tricky territory and requires someone with the right balance of experience, empathy and ability to connect and talk honestly.. I was told by a female psychiatrist who I saw for a year or two perhaps even, that I should just try to be more outgoing. The fact that I missed that (I can't go clubbing or be as outgoing as I used to be with a throbbing red face mask on); she thought I had developed an unrealistic fear of it. She constantly pushed my problem in the psychological corner, when I felt it is 90% physical and as a result of this need to stay cool, and to cool my face literally, I have in effect developed psychological difficulties. Chicken or egg... But it was hard to find some councilor or psychiatrist who hooked onto that and who didn't start to dig into the past like a Freud-adept. It also helps to find a professional who has a character that matches (or complements) your own, and someone who is proactive and who can reach you. Who seems interested and dedicated to your 'case'. After the age of 27 I stopped seeing counselors all-round. 
Not sure if you have time for real life series, but I'm watching this program called Hunted and it's pretty cool I think This is the UK version and I'll also add the US version. Around a dozen couples or individuals have to pretend to be fugitives and have to stay out of the hands of special law enforcers. These are elite specialists and have all the usual privileges when it comes to searching for fugitives, so they can trace their social media activities, put taps on cars or in houses, take belongings they find including laptops and phones to look for passwords, emails and such. Every time these people extract money from a bank or spend anything with their bank card, the hunters get an instant notification and have access to all video surveillance films, so they can see them whenever they use a pass. That way they can often see the registration number of the car they tend to use (only the really smart ones make sure to keep that car far away from the cameras) and they have access then to a system on public roads, where cameras record and register everyone and based on the registration details of one specific car, they can follow that car all over the place, seeing where it is going as long as it stays on bigger roads. They can also ask information from the public, handing out wanted photos with a reward etc. Its a psychological game also as these contestants get increasingly more paranoid. I've seen the Dutch version for some years but Holland is very small and has surveillance cameras pretty much everywhere, so its not as exciting I think. Also, in the Dutch version the hunters can send a 'silent sms' to everyone in the network of the fugitives, so that they can follow everything on those phones, from location to incoming and outgoing communication. That is a bit much I feel. The UK version so far does not use that one, although it was filmed in 2015 so perhaps the silent sms wasn't yet in use then.. I think the way to go with this game is to:
1. NOT call home. Not call anyone you know. No check ups, no homesick emotional calls, nothing. That way the hunters can not trace you.2. No use of your bank card. You can instead ask to do chores for unknown people and in exchange for your work time, get a free place to sleep and something to eat. That way the hunters cannot trace you through bank transactions.
3. If you do have to extract money, do not let someone else who helps you take out the money. Not even with a mask. The hunters get the video footage right away and often go to the spot, asking inhabitants to identify the other person, which usually happens very quickly. Then they can go to that person, interrogate (threaten with legal actions if they don't answer), track their car, see where that car went to, track their phones and see where the fugitives were taken to. Very risky.
4. Lay low. Don't provoke the hunters because you get bored by the lack of 'action'. For some reason, mostly all contestants make an error :D
Of course, it beats me too why these 'fugitives' didn't just rob a bank and hold some hostages to get to their end goal extraction point 😄 There seem to be no rules put in place regarding breaking the law some more. After all, they are already fugitives and omitting armed robbery, home invasion, car jacking, abduction for ransom, and the consequential body-dissolving-in-bath-tub scenarios simply dilutes any sense of ‘realism’. Perhaps it's just me.. If the links above don't work (I think you need to watch from the UK, or have an IP location changer), here are some of the series' episodes available too: https://www.dailymotion.com/video/x4lw51y
And last for now: I ordered this surgical (?) mask thingy, after having hot oil spatters on my face while cooking, and now whenever I have to turn a chicken leg for instance, or risk oil spatting in my face one way or another, I put this thing on :)
Songs of the day
My skin the past week
November 14th 2018Have had a very busy social week. Seen my mother and sister and some other family members on Friday evening. My mum had put the central heating down when I arrived but somehow I was on fire and burned up all evening.. Had brought my cold packs along, but didn't want to put on a fan with the whole family gathered around the table. I don't know my sisters new boyfriend well enough to feel comfortable with that. But I did feel very uncomfortable and self conscious about being so red and hot all evening. I pretty much always run a fan on low in my life; when asleep, when sitting at the table, when working, when watching TV. Have been blessed so far with people around me who don't say to mind that I have the thing on, and keep the indoor heating low. But it is a right pest, I feel so crazy often for having to live like this. But all my living days are dedicated now to keeping my skin the least flushed and in pain as possible with medication and lifestyle adaptations. IPL and laser do not work for me - make matters worse in fact - and have been advised against them by now by all my dermatologist and also by the late Dr. Peter Crouch, who tried many settings and machine types on my skin. I am probably one of the neurogenic rosacea patients for whom lasers or light devices make matters worse. Its so tiring. I pretty much put my entire life on hold to control the rosacea.
Mum made apple pie and green pea soup (erwtensoep), which I could not eat as the pork meat in it flares me up and the apple pie wasn't gluten free. I was red already anyway so decided to eat the apple pie anyhow. It was delicious. (But flared up my bowel inflammatory disease the entire next day, ouch!). My mum also had a surprise for us; she will take us all to Valencia (Spain) next year - autumn - to celebrate her own 65th birthday by then. And my 40th (shock, shudder!). Will stay 5 days or so, nice hotel in the city center and by November it won't be too warm or sunny there for me they reckon. Looking forward to it! I've also been saving up myself for another trip, to St. Petersburg, Russia :) I also saw several friends over several evenings. Most of those evenings were the same, rosacea wise; everyone had kept the house cool without me having asked or mentioned it (awww) and had cold water for me to drink. My face was a bit pink and not fully burn-free but I didn't look like an exploded lobster at least. My fingers, especially those on my right hand, have been red and burning as well all week. Might coincide with the colder autumn weather here, I don't know. Waiting to get an appointment with my derm about it. Doctors diagnosed it as Raynaud's Syndrome a decade ago after extensive tests that included water basins, ice cubes and electrodes, but I am thinking these days it might be erythromelalgia instead of Raynaud's.. My fingers don t go pale and cold, only hot and red.And with regards to strange news of the week
you might have perhaps read in the news about an idiotic Dutchman this week. Or maybe not :D
That dude is called Emile Ratelband and he got notoriety a decade or two ago, when he promoted self help books and programs and shows about positive attitude and mantra's ("Tjakka!") Always been a hyperactive "madman". In the mean time he had some book deals, some failed marriages, some exes who took his money and kids away and now he seems to look for a restart. Sounds like he wants to lift along on the current trend of feelings over facts. He explained his action in a talk show the other night and he said he feels 20 years younger than he really is, and that doctors agree and calculated that his biological age is 49 (based on his heart health and his activity levels and so) instead of 69, and that it is discrimination to assume that he is older than he really feels. So he wants that legalized. Sounds insane, but then again, today I felt like a bobcat, so why can't I be? ... Just spent the day in the woods hunting rabbits. Ratelband stated: "Crazy? Uhm, it bothers ME. It is my feeling. And don't we live in a time where feelings are the most important thing? Some people have feelings about their gender, about their heritage, about their name, about the colonial past, and all these feelings are taken serious as well." So I think he does it as some cultural criticism conceptual case.His lawyer is a well known one and said he took on this case because he sees it as a creative challenge; there is no regulation regarding this issue. Is it that very different from Lauren Southern saying she identifies as a man and getting her gender officially changed, or that white woman who says she feels like a black woman, and therefore identifies as one? Officially. Interesting changes are going on at the moment in this respect, so it is quite curious to see what a judge will make of this claim of Ratelband. About 99,9% certain it will be rejected of course, if only for the economical implications otherwise: if the court agrees with him (slim chance), thousands of people in their 40's for instance could claim they feel 20 years older, and want (and claim!) their pension prematurely :D But this case makes for interesting discussions about where the boundaries between perception/feeling and fact lie, according to law makers in today's time and place. There was also a dutch parody newspaper who made a counter bit of fun and declared on its front page that a judge ruled this Ratelband guy to be not 48 years old legally, but instead 100 years older, and thus dead: "We declare you now born in 1849, and thus you are dead by now. Dead people are not even allowed in this court room, so get out, you creep!"
Song of the day - for the 100 year remembrance of (the end of) World War 1
November 12th 2018
My cat Moshie likes to use this route to plant a dating add:"Young, good looking man (slightly overweight), red hair, thin mustache, owns two houses, looks for a secret 'rendez vous' with petite kittycat. Favourite food: tinned tuna, dry biscuits and bacon. Doesn't smoke or drink (only milk). Likes leisure strolls in the afternoon and late evening. No kids.
Suggested date destination; dinner parties
All communication goes through my Human."
Moshie received some responses in a social cat group:
Grasshopper: "Hi there, my name is Grasshopper, here is my 'come hither' pose. I'm a petite calico. I enjoy naps on my faux fur blanket. I like to take my hooman's t shirts out of the drawer and put them in the litter box--I'm a fun loving gal who likes practical jokes. Maybe we could climb up the drapes together."Moshie: "Grasshopper, I love the pattern of your fur. Are you older than 6 months? (I wouldn't discriminate on age, don't worry). I would like to stare out of windows with you and talk about the crisis in the tuna tin industry, if you would like that too."
Grasshopper: "Mooshie, I am 1 year old now. You caught me, I posted a pic of me when I was younger....we ladies sometimes fudge a bit on our age. Although, I am a full figured gal now, and wiser to the ways of the world. Maybe we can chew on mom's kindling bucket together. As you can see, I've already been working on it. Trying to give it that "Primitive Farmhouse" look in order to help out with the decor."Moshie: "Caramba! Lets shred some toilet paper together soon. I'll treat you on some overpriced organic cat nibbles"
Grasshopper: "Mooshie, you certainly know how to treat a lady."
Moshie: "I am a real man: strong, soft, agile, and I leave my hair on your bed as a goodbye present. I just can't promise exclusivity."
Grasshopper: "I understand. Mom brought a new ginger into the house (a boy). He's 7 months old, and I've been hissing and growling at him. I did however touch noses with him the other day and I even sniffed his butt. So, no promises."
X: "Gingers only? We are 2 grey tabbies who might be interested. LOL!"Moshie: "I am open for all offers. Looking for no strings attached fun"
X: "My Cleo would respond but she is no longer "active" if you get my drift 😽 TOTALLY up for play dates tho!"
Moshie: "Dear Cleo, you sound like a real lady. I promise that I will sniff but not touch"
X: "My tortie, Lexie, is a prim and proper one. But, she will unwind with the click of a laser light. She is "petite enough" (her words). She is very fond of gingers, especially gingers with tuna. She said to call her next time you would like to stroll through the woods. She's hoping you like to climb trees, thinking you two could be pretend to be stuck for hours until the ladders come out. You may hear rumors that she was involved with the superstar Billybob. But, a prim and proper kitty doesn't tell."
Moshie: "I love the sound of your meow already. Do you work out too? I am a cardio guy, including bird grabbing, couch scratching and curtain clawing. You sound like you could be my catnip"
X: "Hi, Moshie! It's funny that you say that you're a cardio guy. Because most days I intend to do some cardio. I have been known to couch and curtain scratch just to get a yowl out of mommy. Then I take off like a shot for a long nap somewhere quiet. Sounds like we could be a good match. But, I must ask, have you had your shots?"
Songs of the day (two versions of the same Stravinsky song, one played with a violin and one with a warmer lower sounding viola)
November 7th 2018My hair is dark now, my natural colour.. I used to dye it lighter, more blonde-ish. The hair dresser I went to had a technique that prevented the dye from running on my scalp; an intriguing stack of rolled up aluminium foil all over the head. Roots were never dyed but that made it look more natural anyway (and nowadays it seems 'en vogue'). I have dyed it red in the past too and dark brown. Nowadays I do nothing with it because my flushing won't allow it and I don't want to walk with a flushed red face for months due to it. But on this site you can upload your photo and try on different hair colours: https://www.matrix.com/virtual-hair-color-try-on I gave my brain hairdo a red tint and wow I love it! But in this photo I'm not red... I don't want to imagine a fire brigade red face with red hair. Oh wait I can, i'll try it on as well. Not a good look :D Normal hair colour versus red hair colour versus same red on a red faced me. Red hair seems to make the red facial skin stand out more.. Best have a cool hair shade colour to go with it I think.
Heard the good old folk tune Scarborough Hill tonight played in a classical version (no lyrics) and that sent me into a worm hole of Scarborough Fair song versions on youtube. Picked a couple that I like and been messing about on the piano a bit improvising with the base melody (I can't play and don't read sheet music either, so its a real mess, but possibly identifiable as Scarborough Fair - only audio basically). I can't play anyway. Bought one in adult life without ever having had any lessons so rambling anything that hints towards a melody is the best I myself can do.
November 4th 2018
Unfortunately my hands (fingers) have been burning a lot the past weeks. I need to see my derm again, I'm starting to wonder I could have erythromelalgia instead (or on top of) rosacea perhaps... They diagnosed my hands with Raynaud's syndrome in the hospital, but frankly, my fingers never go pale white; they only get swollen, hot and red; especially in winter or when encountering big temperature changes. That seems to match erythromelalgia better. And in this article, they describe a female with my type of extreme face flushing and said it was EM as well. Need to discuss this further with my dermatologist soon. I also read up on a potential rosacea treatment: low dose naltrexone. In this Rosacea Forum post, rosaceans discuss their trials with low dose naltrexone. I want to write a bigger post about that one, but need some free time for it first, so soon hopefully. But I am going to try to get some of that somehow, through one doctor or another. At a very low dose it can reduce inflammation and calm down auto immune diseases, research has found. It is also used off label now for neuropathic pain. So that sounds like a three-double whammy, if it works! (i've got inflammation issues with my skin and auto-immune disorders ánd I have neuropathic pain).
I also read this LOVELY story of the good old days: I knew the video of the reunion with the lion Christian (see below) but these photos and this written account is also wonderful. Nowadays there is a ban on the sale of exotic animals in shops like Harrods (luckily), but how amazing that these men saved Christian the cub from a life in captivity (and from that horrible city store). While raising him, and before setting him out in the wild, they were allowed to play and wrestle and play football with Christian in an enclosed church yard, while the neighbors were looking and cheering on from their balconies. Not a single complaint! Imagine this happening today, the police wouldn't get a breath while handling all the complaints from angry residents and hysterical parents. (London seems more dangerous today without lions anyway). They also took small (-ish) cub Christian on daily drives in the car through London. Everyone was happy at the sight of this magnificent cutie in such an unusual setting. So he was released in the wild eventually, and then his two papa's returned a year later, to see how he was doing (tissue at hand please):
Songs of the day
November 3rd 2018
I've been listening to some fantastic podcasts the past weeks, they are all dealing with real life crimes. One is called The Ratline (here you can download the individual audio episodes for free) and is about a research into the life of nazi member Otto Wächter, who managed to flee nazi-Germany after the war, but not with the desired outcome. The interviewer is Jewish and lost most of his family during WW2 in the exact region where this Otto was ruling over: Galicia; on the border of Poland and current day Ukraine. (My grandmothers family also come from that region!). And his friend is the son of Otto Wächter. He is also interviewed and its all very interesting I thought, built up like a crimi almost. I listen to them on my mp3 player while doing chores or going for a walk. The other podcast I just finished was mesmerizing but very eerie; it's called 'West Cork' (I found a free torrent for it) and is about a 1996 murder there of a French (beautiful) woman who was on holiday. It still hasn't been solved but a lot happened and I found it such an atmospheric and interesting listen; you are thrown back and forth between suspicions of possible perpetrators. Very well made, a real in-depth psychological and crime based saga. But also more intense than seeing a documentary, because you only hear the voices and the recorded wind and the waves and the desolate wild nature of that place. Making up images and scenes in your own head can be more frightening than seeing it on TV perhaps. (You can download the entire West Cork podcast series here). And see this youtube link for part 1 (all 8 are uploaded, yayyy!).
Update: they were taken down, BUT I have written a blog post about this case in the meantime and uploaded the entire podcast series on the blog too: The murder of Sophie Toscan du Plantier in her remote house in Cork, Ireland
I'm going out for walks a lot more now that it is cooler. Friend with rosacea asked me how my skin is when I get back from a walk. If I am able to walk and come home without burning? For me, it depends; when the weather is cool enough and there is some wind, I usually come back with pink cheeks, sometimes red, but my skin usually feels cold to the touch. So not a hot burning flush, but the type of winter ruddiness you see with regular northerners. Maybe a bit more ruddy than normal. I have to make sure though not to strain myself a lot by climbing things or having a super high pace; that will make me flushed. Otherwise, if it is cool enough outside and when I don't make the walk too strenuous, I usually don't burn, but I do need to put the fan on low as soon as I come home and sit down, or else my blood vessels start to flush from the difference between speed to rest, and adjusting from some wind outside to no wind and warmer temperatures in the house. And if it is too warm outside, or if there is absolutely no wind blowing at all, I can come back badly flushed and in pain. I avoid sunny days also. So I need to pick the right time of day and weather type. Today I went out for an hour long walk with a bit of a climb included but it was 8 degrees or so and some wind, so my skin felt very cool and despite a red blush, it felt cold and it didn't burn; my face always feels tight and tingling however, on the verge of burning. Even when it isn't flushed. I also try to slow my walking down and unwind before I reach the house, so the very last part I walk slower and relaxed and breathe deep and already adjust my blood vessels in the face to a slower pace. And then as I said; as soon as I get home and sit down, the fan goes on low and I slowly let the face adjust to indoor temperatures and conditions again. Sometimes I do come home flushed, then its full fan, cold packs and bringing it all down. I always adjust myself once I feel a flush or a burn crawl up to my face while walking: I wear layers of clothing and get off my top layers and just wear a sleeveless top then (helps to get rid of the body heat through skin other than the one on the face) and I also reduce my speed then. Ideally I wear shorts or a skirt or something that leaves part of the legs bare; good way to not overheat for me.
Song of the day
Update
The stage was beyond minimalist; it's as if the makers asked themselves what would be left if everything is taken away. Whiteness.. Later black is added. These two colours are all we see during the play, maybe they symbolize the polarizing aspects of the characters on stage. They surely match the colours of the pied crow Gus, who flies by in controlled fashion and rips a note out of the actors hand, just as he wants to start a speech to the audience. Despite being followed by the actor, the crow is meticulous when it comes to shredding every little piece of the paper, to great amusement of the public. During the first scene, the male actor makes a vertical opening in the wall, which we then see is made of paper. He crawls through what can be seen as a vagina, feet first, dragging a microphone on a stand with him, which friction against the ground makes a strange music. The microphone is black, his clothes are black, with a hint of white paint already visible on his back. After talking in a humoristic gibberish to the audience, (with Charlie Chaplin-like gestures and grimaces, which triggers laughter in the audience), the female actor crawls through the vertical opening too, head first, with her hair covering her entire face. They start interacting with each other as if they are clueless about a shared language; like fresh chickens from the egg almost. Soon they form rhythm and their clownish first attempts become more streamlined and intertwined. Between the two artists, a relationship is forming full of tenderness and clumsiness, but later becoming volatile. Beautiful music is sung; she has a superb voice (I wished I had recorded some of it, but recording a play is a no go here). But after a while, harmony turns into disarray again, and by now erratic physical movements leave their physical marks on the walls.
It was amazing how two actors (well three with Gus) managed to create such a small universe with so little means. They portrayed hopes and desires and conflict and solitude through minimal use of language and a lot of physical interaction and dance, in styles ranging from circus to pantomime to burlesque. Intertwining, mimicking, rejecting, transforming the other, being moved by the other. This might sound pathetic but it really was an impressive show I thought. It was like being in a warped dream, and it took me a little while to feel like I woke up from it, after I had left the theater and walked through town. And everything they do leaves a trace. Everything we all do leaves a trace. In real life, we don't see these traces visualized however, as we do see it on the walls of this stage. Gus, the pied raven, regularly comes onto the stage. Sometimes to explore what is going on, sometimes to rip pieces of paper up, but also to sit on his masters rolling body, or rotating head, thus becoming part of the choreography. This is a preview of the second installment of this performance (coming next year). In the version I saw there were only 2 actors and one pied crow.
October 25th 2018
Blogging is by nature a navel-staring activity (I'm raising my hand here!). A lot of talking about yourself, and hoping there is perhaps something in all the blabbering that can be of use for someone else out there. This is not brave; it is an activity that comes with the risk of social embarrassment, and the possibility of a pay-off in the form of respect, gentle responses from people reading it, or for some people monetary rewards. Mostly anyone who blogs, or keeps websites up, gets a pay-off from it, one way or another. Sometimes it is the reward of having a platform to tell your story to an actual audience, anonymous as the readers numbers may be. For others it is a way to build up an instagram personality and to get the chance to promote the odd product here and there for money. Influencers they are called these days I think. I even came across blogs where people ask donations through paypal or wefund. (It does take a lot of free time to keep blogs up, I get that people try to get something back for it). Or people blog because it gives them a sense of meaning and purpose. So calling it brave.. I am not so sure that is the right word for it, if you go by the strict definition of it. I came onto that topic after reading this news article, and the top comment below it stating:"I am ex-military, but maintain a sense of realism and accuracy regarding situations. The word HERO has now lost its true meaning. Dogs are not hero dogs, and every person in the military who is injured in any way whatsoever is not necessarily a hero, although in our snowflake society they are now termed as such. Using the term hero inappropriately demeans its true meaning and importance."
“This was not brave. I’ve been told how brave I am for not having a cover-up, but going without a wrap would only take bravery if I cared what others thought of me, but I don’t.” Kane’s ‘brave’ act in question was choosing not to cover up while swimming. Oh boy. Have we become so obsessed with the perfect body that going to the beach sans sarong is considered “brave”? We need to talk, world. The word is spread way too liberally in the language we use.
Maybe if you want to stretch the definition, it can also be brave to make a choice in life that has a very uncertain outcome, but that can have life changing consequences. I think a person who wants to be a novelist, and gives up a well paying job and a city apartment to go live in some shed in the woods to achieve that dream, could be called inspirational. Or a big risk taker. Not sure 'brave' would apply here though, strictly speaking, but I can see it being stretched that far. Generally, the worse the potential consequences are, the closer it comes to bravery. But blogging? hardly brave. People are blessed these days that the internet exists. Before the net, you would need to have an actual book deal and tons of talent to publish anything to reach an audience. Now everyone and their pet dog gets going and can put something out there, that might be actually read (the same goes for me). Do these writers stick their neck out? Often yes. That comes with unpleasant potential side effects. Some are trolled, some or mocked, some are judged for it by others. But that comes with the job, everyone who creates and puts out there anything that is even slightly off the beaten tracks risks that. So end verdict: Not Brave. (And putting up photos with no make-up on is not brave either; I just don't care and don't want to risk a hot burning face in exchange of some eye liner or mascara. I've got a crazy immune system that goes haywire all the time from the stupidest things).Song of the day
I saw something really interesting. The director of Lord of the Rings, Peter Jackson, has a new wonderful project, where he took World War 1 footage and has coloured it in, frame by frame. He used six hours worth of WW1 footage and remastered it into a 1 hour documentary (also to interest younger audiences). It looks amazing. The Imperial War Museum in London contacted him about this idea. Jacksons grandfather also fought in WW1. The footage that exists is grainy and not of the best quality, but Jackson has had a company since 1993 that specializes in special effects, and he has used his technology now to bring it closer to life. They didn't experience their world in black and white either of course, but in colour too, so he wanted to bring the material available back to its highest possible quality. It makes their faces so much more lively; no longer grainy figures of a past century. They really thought about the right colour shades when they did this. Army green is the right green, the time of day alters the colour of light and thus the shades of their faces, frame by frame. The makers really made the skin tones and colours as realistic as possible every frame. And for scenes where they are in the trenches for instance, heavily packed and full of adrenaline, they gave their faces a little bit of a warmer tone, some have ruddy cheek colours there, also around the nose and the tip of the ears. So very realistically done.
He also adapted the film to a normal pace, meaning he had to add extra frames sometimes. Now film has 24 images per second, but back then film had 16 images per second. Sometimes even less around the time of WW1. When you have to make 24 images from 16, that is a lot of work. But at 16 frames per second, parts of movement are missing, so that gives old footage that 'comedy' effect; not a fluent movement, but jumping from frame to frame often. Not anymore now. And he put realistic sound under it. Sounds of warfare, of the wind, but they also made sure the filmed people say exactly what they actually said in reality, for which he hired lip readers. They also picked up on regional accents of those filmed, how amazing is that. The result is wonderful. Amazing how black and white grainy footage can suddenly seem so every day and like you are there now. And it strikes even more how young all these men were :(
Here is the trailer:
Here is a behind the scene clip,
explaining how he went to work:
I also read a story about an angry man, who built a Killdozer.
Reminded me strongly of that movie with Michael Douglas, where he goes on a rampage through LA. "Falling Down". Sometimes a logical man just snaps, facing the idiocy of the world
A friend told me a story about a local man in northern England, who was driven to something like that too. He did kill someone though.. He was in prison for years for shooting dead a councilman live on camera. He had built a little cabin himself, sunken into the ground on far away land that he had bought. He wanted for his elderly mother to spend time in it in the summer months. But when the council heard about it, they told him to destroy it, as he never received a permission for the little build. The man refused and there was a long stand-off with the authorities over it all. After endless back and forth communicating, council members eventually showed up with a bulldozer, ready to smash his fence down and flatten the cabin. This man was tormented to the maximum at this point, and had bought a WW1 Webley pistol... He made his own ammunition for it. When the debate at his fence got heated, he pulled it out and started shooting. Killed the bloke from the council. Now, killing someone is rarely a just outcome. But a lot of people had sympathy for this man, who they felt was hounded by the authorities. He got a lengthy prison sentence for it, but mouth to mouth stories were of admiration apparently. A small man who didn't take it, that sort of thing. A nobody who got stepped on, and who unlike many others bit back. The media painted him as villains, understandably, but every-day people can have some sympathy for the ones driven to the edge. That don't go quietly. Here is another parvenu who did not like the system and took some action :)And there is a series on youtube, called The Skin Deep. It features people who are remarkably honest, when challenged. I saw this one the other night, these two I should say. People tend to normally have so many layers of decorum and perceived expectations that filter everything.
The concept of being more honest when a camera is aimed at you, is a strange one to me. I am not sure they are 100% honest in these videos, despite seeming to (exception for the kids, they tend to be most pure almost always). I think mostly everyone is aware in the back of their mind, how things are perceived by others, and what is socially acceptable to say and what not. The main reason they seem so honest nevertheless, might be because of the provocative questions on the cards. The set up is to break through the superficial talk, and ask them things that make these people open up. Which is interesting and nice sometimes to see. Perhaps this series touches a nerve with some audience, because the world seems in parts to have turned into a social media swamp of fakery, happy moments and covering up harsh realities. We all know what life is really like outside of the filtered facebook posts, but we rarely get to see it anymore from the people around us. Unless they are close friends who confide in us, going by social media presence, we are usually bound to believe it's all roses and unicorns out there. Everywhere but in our own lives. As a result, young people who didn't grow up in a time without the internet, perhaps think that others really have it so much more wonderful than them. I feel they do this project to show some real emotions, real issues. It did struck me that the producers are quite selective in who they invite for it however. I haven't seen rednecks yet, no farmers either. No salt of the earth people, but mostly educated professionals and progressive students with a high level of self-awareness.
My dad also sent me some old photos he found in some box. Me around age 14 (so in 1994) compared to skin looking flashed and feeling painful today. I can't even remember what it feels like to just have normal functioning skin, like I had back then. Normal colour, no problems with warm weather or sun or general burning pain. It seems like literally another life, looking back at them. Although in many ways I actually feel happy, getting older. There are a lot of worries and insecurities which become less with age, for many people at least. You feel that you get a better grasp on life and the people in it. But I'm still glad that I kept diaries throughout my teens and young adult life, so I can remember that other life if I want to. My skin has been flushed and painful and all-round horrible this entire week. Partly hormonal driven. Am SO SICK of it. My pityriasis rashes are almost entirely gone, some stubborn spots are still healing but I don't even think about it anymore. It was strange, my rosacea was so calm during that ordeal. Makes me think again that my immune system plays a role in all this; when it was too preoccupied dealing with that rash, my skin went calm.. Wished it stayed that way for ever. Got some advise from my lovely friend:-Don't deny yourself too many foods in attempt to control your rosacea. Denying yourself too many foods can spike depression too, so treat yourself now and then a bit (not full out splurge).
-Go somewhere fun. Really fun. Forget yourself. Let the wind blow on your face and hair. Feel it for a few minutes. Love that advise.. The last picture is just making me happy: crazy aunt trying to cuddle cat who is always subtle when expressing how he feels :)
Music clip of the day
October 13th 2018
I had a good day today. A trip to the market and the coast with an older eccentric friend, and a long walk at the end of the day. I woke up with one flaring cheek, but managed to cool it down with a cold pack and then was good to go. The market is always nice, with familiar faces and fresh fruit and vegetables. I bought a bag full of stuff, carrots, sweet potatoes, Brussels sprouts, broccoli, green beans, a pumpkin, apples and pears. We had a drink later and talked about what sentimental value one could put on old houses. Larger families who inherit a family home, and decide to sell it and share the profit. She thinks it is practical common sense, because what are you going to do with an old family house, that should be shared by multiple siblings? I find it a shame, and like continuity and for some things to last, even in modern times. But practically speaking, my suggestion that such a place can always serve as a holiday home, made her laugh: "You know, like everyone has 3 weeks off in August and all want to stay there". True.. I remember my grandparents house being sold at some point, after their passing, and it is sentimentality for sure but I always loved that house, growing up, and spent every summer holiday there with my middle sister. It had been in the family for over a century and then their kids (6 in total) couldn't come to another decision than to sell and share the money. Friend asked what other solution there reasonably would have been? Well... the way it always has gone lol? Give it to the eldest child! (I'm the eldest myself hehe). "Primogeniture! Totally archaic and unfair!" I suppose it is.. It is mythical thinking, but I imagine houses to have characters too. Passing an old beautiful house I used to work in an old house at some point in time, and seeing it uninhabited and disheveled made me so sad.. As if that house was suffering and forlorn suddenly, without someone to take care of it and inhabit it. Anyway, silliness. I had a nice day, and then I went for a very long walk, one of the first after months of hot weather and inability to go out long hours for exercise, and it was lovely. It was as if the nature spot I walk was greeting me and had missed me coming round :D Jokes..
Music clip of the day, well there are two, will hopefully shoot you back in a time capsule to the 1980's, as is space rock/80's style electronic synth :)
I like to do a shabby robot dance on them and also listen to them regularly when out walking, to keep up the walking pace!
October 11th 2018
I've been flushing and burning for the past 10 days or so. I have no idea what triggered it... Shouldn't yet be hormonal/cycle flushing.. I have eaten fairly clean, as in; no fast-food, sugar, gluten, dairy.. Maybe the warm-ish weather and high humidity caused it. Or maybe it is just one of those random rosacea flare-ups. It's hard doing my normal rounds when my skin is so painful and feels burned up and hot. I don't even look deep red, more pink, but my cheeks feel really sore. Wished I never had that stupid IPL treatment back in 2005.. I'll add some photos of it below. In one my lip is swollen because my cat was overly enthusiastic about a toy mouse game and slashed my lip with his nail haha. As usual I try to just show a close up of one cheek (I find my photos back on all sorts of rosacea related sales and business pages nowadays, never with permission so I try to make them as useless as possible for such purposes), and I use no filters or whatever, and don't have a smartphone so they are made with a regular camera. I have been feeling a bit low the past weeks. Mostly because my sore face just keeps me in lock-down, and interferes with some social things I wanted to do, and also because I worry sometimes that this is going to be my reality until the end of my days. It's been nearly 20 years since I developed this and so far practically no new treatments have come on the scene, and nothing that has helped me. I spoke with someone who is in the same boat rosacea wise and also has other auto-immune diseases, like myself. Also tied to the house a good deal of time, when illnesses flare, and also for many years already. We share good and bad days and similar struggles mostly. We discussed how to mentally deal with it all, especially during bad spells. When our skin is calm, we are OK with it all and go out, meet with other people,, travel etc. But the bad periods with severe flare ups and staying in the house so much, makes us struggle. Also the lack of perspective, the lack of respite and control. Of ways to just forget about it all and go out and enjoy ourselves when we're doing poorly, like most other people out there. Instead we need to live in controlled spaces, avoiding warm temperatures, sun, bright lights. It is severely limiting, and the worst aspect I find is that even while doing all that, or not doing so much in fact, I still sit here with a burning red face.
Despite not being the social butterfly by nature, I still find it all claustrophobic and limiting. This friend encounters the same things and at the moment struggles to find comfort in life. And to suppress dark thoughts at times. You need to dig so deep within yourself when you are housebound in order to find ways to push the darkness away. And still it can wash over you unexpectedly and suddenly, this wave of negativity that can be so strong that it kills your thoughts, heart, etc. The more negative it makes you, the deeper you spiral downwards. Some call it the black dog concept. In our case, the lack of control we have and the severe limitations in life are probably causing it. And the pain and discomfort. These things we suffer from make so many demands on our every day life. Going out to dinner or dance with friends is often no option when your face feels and looks on fire.. Usually I end up sitting with cold packs at friends houses, or in a restaurant during such spells. I still go out regularly, but it all depends on how bad my flushing and burning is, and appointments can be altered at the last minute sometimes. Friends invited me to come to a theater play I particularly look forward to and have a bite to eat afterwards; we did the same thing last year and I was beet beet red and on fire all through the performance (luckily it was dark) and during the dinner. I tried to just ignore it, the others know about my skin and health issues... It was mostly a lovely experience in retrospect, when I was back at home, cooling my skin and collecting memories. Outings in general are limited in a lot of ways.
We both sometimes think about the why question. Not just 'why me', but also what is the meaning of suffering in general? Is there even any meaning to it? And how to deal emotionally with a situation you cannot change, but are unhappy with? A situation that has become pretty hopeless in some respects (hopeless especially with regards to outlook on new better treatment options). I keep looking and reading about new rosacea developments here, but I honestly don't expect anything groundbreaking to occur in the next ten to fifteen years... Not trying to burst anyone's bubble, but this flushing and burning thing is a lousy condition to suffer from and a complex one to treat.. It takes a lot of energy every day to be positive and energetic and keep hopeful and trustful in the big scheme of things. I like to get lost in things; writing, reading, exploring. Vee are zhe lucky onesz weeth zhe internet running as iet ies. To speak in Allo Allo language. I'm counting myself lucky to live in the internet age; having information, movies, tv-series, documentaries, college classes and penpals at the tip of our hands. But I can't sit behind the computer screen all day either, as that makes me flushed too. Spirituality is one of the last things (or for some people the first thing) to go when one feels hopeless, and badly treated by the universe. I'm not sure I have ever been very spiritual, my friend was, but consistent beatings down make it easy to lose your spiritual sense. After all; why would the universe be out to make you suffer? While others around us seem to sail through life? (With emphasis on 'seem to'). Suffering can make everything seem harsh, and cold. Some even say that it makes them feel like life is laughing at them. With so much adversity it is hard to be religious or even spiritual. My mum is quite spiritual and I asked her often, in despair; what did I do to deserve all this bad "karma"?? Was I some monster in another life? Why this relentless constant stream of troubles, illnesses, hassle. Then the dental issues again, then the cat dies, then more health issues... She doesn't know the answer to that she says, whether or not there is any meaning to suffering. There might be, or there might not be. She thinks that all adversity has an upside, brings us something good as well, or pushes us in a direction where we are confronted hardest with our own 'learning points' in life. In my case, I would need to learn to let go of control. And let go of vanity regarding physical looks. I just like to think that there is some sort of purpose to it all, even when I know it most likely is a little trick of the mind; wishful thinking that is not that different from religion. But it helps me to see it as a challenge from the cosmos or something; and to imagine some sort of enlightenment as the eventual reward, at the end of the line. Despite looking for facts in every day life, I do believe there could be more than just atheistic version of things. Not a traditional God. I'm more wondering why this highly unlikely chance at life (if you go by the mathematical calculations in favour of your own birth, the odds are staggeringly against the whole thing... yet it happened) could not happen twice. It makes no sense to me to assume that if something could happen once, it could not happen twice. I don't mean that we can be born again in the way and shape we are now. But I'm only referring to the spark of consciousness. I mean, my cats have consciousness too. They might not be aware of this, but they exist, they experience emotions and pleasure and pain. They live. That thing in us that is like the light and the awareness; I don't think it is 100% tied to our specific DNA. I don't see why we couldn't be something, somewhere and some time, again. In all honesty, I also find the thought of never being or experiencing anything after death too frightening.. I can't even imagine it, eternal nothingness. It's freaking me out. Anyway..
I know that suffering is easier to bear when you find a purpose for it. I wrote about this psychiatrist Esther Perel earlier in this post, and she also touched on those topics. Finding meaning in life and in adversity, in order to move on. So with regards to our current suffering... perhaps we are tested in some ways and we have to show our strength through this very difficult moment in time and in this life we now lead... Again, I realize this is akin to religious, mythical thinking. But we didn't do anything to deserve this, so why are we dealing with this for so many years now? I somehow feel we need to find the strength to carry it all and develop as human beings, improve in whatever ways we can, and that perhaps there is something after this life which we aren't aware of yet.. That thought gives me strength. The possibilities out there and just the feeling that we need to be strong now, to perhaps get the 'rewards' of it later on. Which funny enough is a deeply Christian (or religious in general) concept haha. But maybe that is what age and adversity does to me; finding more understanding for other peoples beliefs and motivations and coping mechanisms. It can also be hard to stay warm and understanding and not cynical and hardened when life is so rough and you see others have it so much easier. And when you suffer without hope or respite year after year after year. All of that pain adds up.
I find a lot of comfort and solace in friendships, my cats, books, stories and art. Travels too. Information, staying in wonder of new things you learn. Being creative in one way or another can also be a great coping tool. When you create something and get in that zone - may it be writing, painting, composing, whatever, a creative thing - then sometimes time falls away and you are in a cloud, away from every day stuff. It is escapism and it feels useful because you have something created at the end of the line. Nietzsche said that in the end, only music transported his mind away from the ever grinding mechanisms of the brain. (He ended up in an asylum with a mental breakdown in the end). I also get strength from knowing I have battled through this physical pain for almost two decades now, and I feel proud of myself for this. I'm not someone who is critical of myself in the traditional sense; 'Oh you're too fat, too ugly, too boring, too different'. Maybe it is due to my upbringing.. My dad is an artist and eccentric, my mum is an einzelgänger too and very glamorous but not afraid to be different and to stick out from the crowd. We learned early on that conventions are strong in most people and people who are different catch a lot of wind in a storm. I don't suffer under being different now either, therefore. Different as in; less of a social butterfly than my friends, less uncomplicated with my health limitations, less living by the current norm of those around me, which is a very busy professional and social life, juggling with 8 balls in the air, having the latest gadgets, being both partner, mother and good social friend. I'm probably less optimistic than most are. But things are as they are. We are who we are partly by nurture, but also partly by nature and there will always be people out there who appreciate you for just that; your own individuality. Nobody will be liked by everyone else out there. You shouldn't strive to be loved by everyone either. So for everyone dealing with this shitty condition and with feelings of self worth and such; try to be proud of yourself, for battling through all this, and finding the will to look for solutions and improvements. Be proud for the ways in which you keep going, look for new and better treatments of your skin issues and for keeping to find the positives in life. And try to just take things one day at a time. Maybe set yourself small challenges instead of throwing all problems on one pile and expecting to solve them all at once. It can be easier to just oversee what you need to do or can do during the next day(s). And try helping others, as that is the fastest way to feel gratification.
I have these bursts of energy, I need to force it, but then I can write and have meetings and do a ton of stuff in a few days, like some hurricane, and then they are always followed eventually by several days at least of mental exhaustion, apathy and a low(er) mood... Just getting up and looking after the cats can feel too much then... I tend to just binge watch TV series or documentaries or listen to music and read on such days 😞 I think half of my exhaustion stems from my own racing mind and thoughts. I saw another beautiful little program the other day about Japan. Over there, people are said to live for society. Not for their own happiness in the first place, but for the well-being of the country. So the effect of this attitude is that a lot of people can feel bowed down once they no longer feel that they can contribute to society. Think of illness, but also old age for instance, or when being made redudant at work. That can be very hard to bear for Japanese I learned, as they are so focused on finding self worth in meaningful jobs. Japanese also apparently love the ephemeral and fleeting nature of the Japanese cherry-tree blossom. Japan has a word, 'mono no aware', which means something like things of fleeting beauty; watching something that is beautiful, but which you know will decay. A cherry blossom in full bloom is beautiful, but Japanese also find it beautiful when the blossom leaves are starting to fall. A bit like our own poppy flowers, which only last a short while and who drop their petals the moment you try to pick the flower to take her home. And the fact these cherry-tree blossoms only last for a short while, makes them extra beautiful in melancholy-filled Japan. Sadness and change go hand in hand. Strangely enough, peoples own ageing and weathering down is not seen as equally beautiful. Japanese culture more or less dictates that people should keep their sadness to themselves. You don't talk about your own losses, adversities and sadness in life, because you don't want to burden another person with your own struggles. (Which could just be making the inner problems bigger for people). We all need ways to express our emotions and grief. In the program, they took the viewer to a special phone boot, placed by someone in his back garden, at the foot of some mountain, where people can call with their loved ones. He called it 'the telephone of the wind'. The old fashioned telephone is not attached to anything, you can see the wires being unplugged, but people can express their grief to loved ones who died, by pretending to call with them. Some of those calls were recorded and could be heard in the program. One went like this:
-If you are out there somewhere, then please listen to me.
-I miss you so very bad
-Sometimes I don't know what I am still living for
-I have built a new house
-But without you, it means nothing to me
-I want to hear your voices, but I can't
-I don't know where to start
-It feels as if you are still alive somewhere
-There were so many things I still wanted to do with you
-Are you there, Hiroaki?
-It is such a shame
-I don't know what to say
-Every time a car passes by I think:
-Is that you? Are you finally home?
-It just does not get through to me
The owner, an eccentric older man, placed the phone boot there to help introverted Japanese with their mourning process. Some 30.000 people already traveled to his garden to make a call like this. This man believes that humans have a soul, or a spirit, and that it lives on when someone dies. He believes that a soul is flowing out of the connection between living and deceased humans. That the soul of the deceases makes a connection between those left behind on earth. And the wind telephone helps to establish this connection. He also understands that the people using his phone aren't really talking to the deceased, but more with their own memories. Japan also have a saying 'ichi-go ichi-e', referring to how you have to treasure every encounter you have with anyone, because it may never recur again. You may not see this person another time. It means a once in a lifetime meeting. And when Japanese have a party, there is always an official end to it. I love that.
I also talked about suicide with this friend. Not something either of us contemplates by the way, not at all. But it seems to happen more often in society, and over seeming (but we never know the true circumstances) futile things like a fight with a loved one or a relative, or the loss of a job. For those suffering physically or mentally, suicide can perhaps be a comforting thought sometimes; there is always an exit door, in case the suffering we endure gets too much to bear... I think most people don't want to die, but they want another life, a better one, and to get control back over their suffering. Its a painful thing. I said to my friend that something as dark and eerie as suicide should never be allowed to take away you. And all that is lovely and kind and smart and beautiful about you. To not allow such a dark cloud to make you think any other way. And to also realize that such an act burdens a lot of people likely with the trauma of such a loss. The what if feelings, the guilt, the self doubt and grieving. Sometimes I wonder if we can better handle and deal with these mental and physical hardships by changing our expectations? I can get really down myself from living inside the house so much and being so awkward socially that I don't want to connect with anyone else but a handful of trusted people.. But then I try to look at the things that do are there; friends, family, pets, a lot of interests, work. Finding purpose in the entire mess can help to make it feel less of a senseless daily pain enduring exercise. And there are of course also antidepressants. I can't stress enough how important and helpful they can be in reducing depression and anxiety, for those unable to control them in another way. I take a relative low dose of mirtzapine (Remeron), first and foremost to help battle the facial flushing, but it also helps me to not go down that rabbit hole too deep anymore... It takes the deepest depths of low moods out, I feel. I remember before taking it, I would sometimes feel dragged into that sort of very intense, bottomless depression, and it zaps all your energy and willpower. Nowadays, there is always still melancholia and I'm not a bouncing ball of optimism and happiness suddenly, but the extremes seem to have been taken off. It is a calming thing. It also gives me amazing deep, wonderful sleep. I think it is a chemical thing in the brain that causes it all, spurred on by things we endure in every day life. For instance; having no control over red painful skin, over other health conditions, and feeling just like a ship on a stormy sea. Every day it is up to chance or good or bad luck whether or not it will be a good or a bad day, pain wise, rosacea wise. This instability is hard to handle for most. When I started mirtazapine, I had pushed it off for years, too afraid of making things worse; of dealing with the disappointment of yet another failed trial perhaps. Fear of making things even worse rosacea wise, which I feared could potentially push me over the edge. Afraid of side effects too (which it has). But when an antidepressant does work, it can clear things up and make you think straight again; like you used to think. Just correcting a chemical imbalance in the brain and (in my experience with mirtazapine) not changing your personality. Just lifting the clouds.
Despite not being the social butterfly by nature, I still find it all claustrophobic and limiting. This friend encounters the same things and at the moment struggles to find comfort in life. And to suppress dark thoughts at times. You need to dig so deep within yourself when you are housebound in order to find ways to push the darkness away. And still it can wash over you unexpectedly and suddenly, this wave of negativity that can be so strong that it kills your thoughts, heart, etc. The more negative it makes you, the deeper you spiral downwards. Some call it the black dog concept. In our case, the lack of control we have and the severe limitations in life are probably causing it. And the pain and discomfort. These things we suffer from make so many demands on our every day life. Going out to dinner or dance with friends is often no option when your face feels and looks on fire.. Usually I end up sitting with cold packs at friends houses, or in a restaurant during such spells. I still go out regularly, but it all depends on how bad my flushing and burning is, and appointments can be altered at the last minute sometimes. Friends invited me to come to a theater play I particularly look forward to and have a bite to eat afterwards; we did the same thing last year and I was beet beet red and on fire all through the performance (luckily it was dark) and during the dinner. I tried to just ignore it, the others know about my skin and health issues... It was mostly a lovely experience in retrospect, when I was back at home, cooling my skin and collecting memories. Outings in general are limited in a lot of ways.
We both sometimes think about the why question. Not just 'why me', but also what is the meaning of suffering in general? Is there even any meaning to it? And how to deal emotionally with a situation you cannot change, but are unhappy with? A situation that has become pretty hopeless in some respects (hopeless especially with regards to outlook on new better treatment options). I keep looking and reading about new rosacea developments here, but I honestly don't expect anything groundbreaking to occur in the next ten to fifteen years... Not trying to burst anyone's bubble, but this flushing and burning thing is a lousy condition to suffer from and a complex one to treat.. It takes a lot of energy every day to be positive and energetic and keep hopeful and trustful in the big scheme of things. I like to get lost in things; writing, reading, exploring. Vee are zhe lucky onesz weeth zhe internet running as iet ies. To speak in Allo Allo language. I'm counting myself lucky to live in the internet age; having information, movies, tv-series, documentaries, college classes and penpals at the tip of our hands. But I can't sit behind the computer screen all day either, as that makes me flushed too. Spirituality is one of the last things (or for some people the first thing) to go when one feels hopeless, and badly treated by the universe. I'm not sure I have ever been very spiritual, my friend was, but consistent beatings down make it easy to lose your spiritual sense. After all; why would the universe be out to make you suffer? While others around us seem to sail through life? (With emphasis on 'seem to'). Suffering can make everything seem harsh, and cold. Some even say that it makes them feel like life is laughing at them. With so much adversity it is hard to be religious or even spiritual. My mum is quite spiritual and I asked her often, in despair; what did I do to deserve all this bad "karma"?? Was I some monster in another life? Why this relentless constant stream of troubles, illnesses, hassle. Then the dental issues again, then the cat dies, then more health issues... She doesn't know the answer to that she says, whether or not there is any meaning to suffering. There might be, or there might not be. She thinks that all adversity has an upside, brings us something good as well, or pushes us in a direction where we are confronted hardest with our own 'learning points' in life. In my case, I would need to learn to let go of control. And let go of vanity regarding physical looks. I just like to think that there is some sort of purpose to it all, even when I know it most likely is a little trick of the mind; wishful thinking that is not that different from religion. But it helps me to see it as a challenge from the cosmos or something; and to imagine some sort of enlightenment as the eventual reward, at the end of the line. Despite looking for facts in every day life, I do believe there could be more than just atheistic version of things. Not a traditional God. I'm more wondering why this highly unlikely chance at life (if you go by the mathematical calculations in favour of your own birth, the odds are staggeringly against the whole thing... yet it happened) could not happen twice. It makes no sense to me to assume that if something could happen once, it could not happen twice. I don't mean that we can be born again in the way and shape we are now. But I'm only referring to the spark of consciousness. I mean, my cats have consciousness too. They might not be aware of this, but they exist, they experience emotions and pleasure and pain. They live. That thing in us that is like the light and the awareness; I don't think it is 100% tied to our specific DNA. I don't see why we couldn't be something, somewhere and some time, again. In all honesty, I also find the thought of never being or experiencing anything after death too frightening.. I can't even imagine it, eternal nothingness. It's freaking me out. Anyway..
I know that suffering is easier to bear when you find a purpose for it. I wrote about this psychiatrist Esther Perel earlier in this post, and she also touched on those topics. Finding meaning in life and in adversity, in order to move on. So with regards to our current suffering... perhaps we are tested in some ways and we have to show our strength through this very difficult moment in time and in this life we now lead... Again, I realize this is akin to religious, mythical thinking. But we didn't do anything to deserve this, so why are we dealing with this for so many years now? I somehow feel we need to find the strength to carry it all and develop as human beings, improve in whatever ways we can, and that perhaps there is something after this life which we aren't aware of yet.. That thought gives me strength. The possibilities out there and just the feeling that we need to be strong now, to perhaps get the 'rewards' of it later on. Which funny enough is a deeply Christian (or religious in general) concept haha. But maybe that is what age and adversity does to me; finding more understanding for other peoples beliefs and motivations and coping mechanisms. It can also be hard to stay warm and understanding and not cynical and hardened when life is so rough and you see others have it so much easier. And when you suffer without hope or respite year after year after year. All of that pain adds up.I find a lot of comfort and solace in friendships, my cats, books, stories and art. Travels too. Information, staying in wonder of new things you learn. Being creative in one way or another can also be a great coping tool. When you create something and get in that zone - may it be writing, painting, composing, whatever, a creative thing - then sometimes time falls away and you are in a cloud, away from every day stuff. It is escapism and it feels useful because you have something created at the end of the line. Nietzsche said that in the end, only music transported his mind away from the ever grinding mechanisms of the brain. (He ended up in an asylum with a mental breakdown in the end). I also get strength from knowing I have battled through this physical pain for almost two decades now, and I feel proud of myself for this. I'm not someone who is critical of myself in the traditional sense; 'Oh you're too fat, too ugly, too boring, too different'. Maybe it is due to my upbringing.. My dad is an artist and eccentric, my mum is an einzelgänger too and very glamorous but not afraid to be different and to stick out from the crowd. We learned early on that conventions are strong in most people and people who are different catch a lot of wind in a storm. I don't suffer under being different now either, therefore. Different as in; less of a social butterfly than my friends, less uncomplicated with my health limitations, less living by the current norm of those around me, which is a very busy professional and social life, juggling with 8 balls in the air, having the latest gadgets, being both partner, mother and good social friend. I'm probably less optimistic than most are. But things are as they are. We are who we are partly by nurture, but also partly by nature and there will always be people out there who appreciate you for just that; your own individuality. Nobody will be liked by everyone else out there. You shouldn't strive to be loved by everyone either. So for everyone dealing with this shitty condition and with feelings of self worth and such; try to be proud of yourself, for battling through all this, and finding the will to look for solutions and improvements. Be proud for the ways in which you keep going, look for new and better treatments of your skin issues and for keeping to find the positives in life. And try to just take things one day at a time. Maybe set yourself small challenges instead of throwing all problems on one pile and expecting to solve them all at once. It can be easier to just oversee what you need to do or can do during the next day(s). And try helping others, as that is the fastest way to feel gratification.
I have these bursts of energy, I need to force it, but then I can write and have meetings and do a ton of stuff in a few days, like some hurricane, and then they are always followed eventually by several days at least of mental exhaustion, apathy and a low(er) mood... Just getting up and looking after the cats can feel too much then... I tend to just binge watch TV series or documentaries or listen to music and read on such days 😞 I think half of my exhaustion stems from my own racing mind and thoughts. I saw another beautiful little program the other day about Japan. Over there, people are said to live for society. Not for their own happiness in the first place, but for the well-being of the country. So the effect of this attitude is that a lot of people can feel bowed down once they no longer feel that they can contribute to society. Think of illness, but also old age for instance, or when being made redudant at work. That can be very hard to bear for Japanese I learned, as they are so focused on finding self worth in meaningful jobs. Japanese also apparently love the ephemeral and fleeting nature of the Japanese cherry-tree blossom. Japan has a word, 'mono no aware', which means something like things of fleeting beauty; watching something that is beautiful, but which you know will decay. A cherry blossom in full bloom is beautiful, but Japanese also find it beautiful when the blossom leaves are starting to fall. A bit like our own poppy flowers, which only last a short while and who drop their petals the moment you try to pick the flower to take her home. And the fact these cherry-tree blossoms only last for a short while, makes them extra beautiful in melancholy-filled Japan. Sadness and change go hand in hand. Strangely enough, peoples own ageing and weathering down is not seen as equally beautiful. Japanese culture more or less dictates that people should keep their sadness to themselves. You don't talk about your own losses, adversities and sadness in life, because you don't want to burden another person with your own struggles. (Which could just be making the inner problems bigger for people). We all need ways to express our emotions and grief. In the program, they took the viewer to a special phone boot, placed by someone in his back garden, at the foot of some mountain, where people can call with their loved ones. He called it 'the telephone of the wind'. The old fashioned telephone is not attached to anything, you can see the wires being unplugged, but people can express their grief to loved ones who died, by pretending to call with them. Some of those calls were recorded and could be heard in the program. One went like this:-If you are out there somewhere, then please listen to me.
-I miss you so very bad
-Sometimes I don't know what I am still living for
-I have built a new house
-But without you, it means nothing to me
-I want to hear your voices, but I can't
-I don't know where to start
-It feels as if you are still alive somewhere
-There were so many things I still wanted to do with you
-Are you there, Hiroaki?
-It is such a shame
-I don't know what to say
-Every time a car passes by I think:
-Is that you? Are you finally home?
-It just does not get through to me
The owner, an eccentric older man, placed the phone boot there to help introverted Japanese with their mourning process. Some 30.000 people already traveled to his garden to make a call like this. This man believes that humans have a soul, or a spirit, and that it lives on when someone dies. He believes that a soul is flowing out of the connection between living and deceased humans. That the soul of the deceases makes a connection between those left behind on earth. And the wind telephone helps to establish this connection. He also understands that the people using his phone aren't really talking to the deceased, but more with their own memories. Japan also have a saying 'ichi-go ichi-e', referring to how you have to treasure every encounter you have with anyone, because it may never recur again. You may not see this person another time. It means a once in a lifetime meeting. And when Japanese have a party, there is always an official end to it. I love that.
I also talked about suicide with this friend. Not something either of us contemplates by the way, not at all. But it seems to happen more often in society, and over seeming (but we never know the true circumstances) futile things like a fight with a loved one or a relative, or the loss of a job. For those suffering physically or mentally, suicide can perhaps be a comforting thought sometimes; there is always an exit door, in case the suffering we endure gets too much to bear... I think most people don't want to die, but they want another life, a better one, and to get control back over their suffering. Its a painful thing. I said to my friend that something as dark and eerie as suicide should never be allowed to take away you. And all that is lovely and kind and smart and beautiful about you. To not allow such a dark cloud to make you think any other way. And to also realize that such an act burdens a lot of people likely with the trauma of such a loss. The what if feelings, the guilt, the self doubt and grieving. Sometimes I wonder if we can better handle and deal with these mental and physical hardships by changing our expectations? I can get really down myself from living inside the house so much and being so awkward socially that I don't want to connect with anyone else but a handful of trusted people.. But then I try to look at the things that do are there; friends, family, pets, a lot of interests, work. Finding purpose in the entire mess can help to make it feel less of a senseless daily pain enduring exercise. And there are of course also antidepressants. I can't stress enough how important and helpful they can be in reducing depression and anxiety, for those unable to control them in another way. I take a relative low dose of mirtzapine (Remeron), first and foremost to help battle the facial flushing, but it also helps me to not go down that rabbit hole too deep anymore... It takes the deepest depths of low moods out, I feel. I remember before taking it, I would sometimes feel dragged into that sort of very intense, bottomless depression, and it zaps all your energy and willpower. Nowadays, there is always still melancholia and I'm not a bouncing ball of optimism and happiness suddenly, but the extremes seem to have been taken off. It is a calming thing. It also gives me amazing deep, wonderful sleep. I think it is a chemical thing in the brain that causes it all, spurred on by things we endure in every day life. For instance; having no control over red painful skin, over other health conditions, and feeling just like a ship on a stormy sea. Every day it is up to chance or good or bad luck whether or not it will be a good or a bad day, pain wise, rosacea wise. This instability is hard to handle for most. When I started mirtazapine, I had pushed it off for years, too afraid of making things worse; of dealing with the disappointment of yet another failed trial perhaps. Fear of making things even worse rosacea wise, which I feared could potentially push me over the edge. Afraid of side effects too (which it has). But when an antidepressant does work, it can clear things up and make you think straight again; like you used to think. Just correcting a chemical imbalance in the brain and (in my experience with mirtazapine) not changing your personality. Just lifting the clouds. 
Some things I read or discussed that lifted my spirits
Kid with nuclear reactor in his basement:
Here's what this dude did. Hahn built a bloody nuclear reactor on his mom's shed. Mind-boggling. Ok it's crude... but he made it himself. He was able to get hold of radioactive materials by pretending to be a college professor. He also got radioactive materials from smoke detectors. Who thinks of such a thing? He ordered some Uranium from Czechoslovakia because why the hell wouldn't that be possible 😊His parents never cared much for him, but instead of embracing drugs or a delinquent life, he wanted to solve the energy crisis by replicating a type of experimental nuclear reactor. The bridge between understanding theory, and implementing it in reality is a significant one for many. (Scientist Michio Kaku tried to make a particle accelerator on his parents garage when he was six. All he got was a hefty power bill and a reprimand from his father). I reckon he most probably died of radiation poisoning.
Like one of my friends likes to give off on Baby Boomers and always rants about boomers, I like to watch the odd video bashing Millennials:
JP is so funny to me. Some good comments below the video too:
-"How dare you lump all us millennials together! I'm starting a petition as soon as I finish my caramel double shot tequila soy latte."
-"Never has a generation so diligently documented themselves achieving so little."
-"You forgot to mention you like to travel to exotic locals, as part of your college internship, to take selfies with brown, impoverished children and post them as your profile picture."
-"As a millennial, I'm offended that my comment does not even have any likes. Just because I'm still typing it doesn't mean you can't like it. FR"
-"As a gen Xer I am offended that I am no longer getting all of the negative attention. Enjoy your 15 minutes of fame millennials."
-"I don't like anyone, that's why I'm always friendly. I always try to engage people enough to not be disliked, but never enough to make a real connection. I'm my friend. My thoughts make me laugh- on the inside."
-"Sad but true. Thanks selfish baby boomer, helicopter parents. You've created a whole generation of these self-congratulatory, narcissistic monsters."
Here you can read a funny facts reddit post, where someone asked other people for the strangest facts they know. Some favorites*"Notorious Pirate/Pirate hunter Benjamin Hornigold Once attacked a ship just to steal all of the crew member's hats. His men had gotten drunk and lost their hats during a party the night before and decided to board a ship to get replacements."
*"Julius Caesar was once kidnapped by pirates, and when he found out how much they were ransoming him for, he was offended at how low the amount was and told them to raise it. Meanwhile he spent his captivity annoying the shit out of his captors, holding poetry readings and generally being a pompous dick. Oh, and he also joked that he'd eventually hunt them all down and crucify them. The ransom was paid, Caesar was released, then he hunted them down and crucified them."
*"Daniel Steibelt, a top pianist in his own right, challenged his contemporary Beethoven to a musical improv duel. Steibelt did believe he had a shot; he was no kid, and had already composed for Marie Antoinette and operated a successful version of Romeo and Juliet. He showed up to the improvisation and played one of his own works, for which he'd brought the sheet music. Once it was his turn, Beethoven turned the sheet music upside down and beautifully fucked the piece sideways and backwards, overturing Steibelt's style all the while like a cat teasing a particularly boring mouse. No one ever challenged Beethoven to a musical improvisation again, least of all Steibelt, who never again set foot in Vienna."
*"There once existed an alleged theoretical state of war that lasted 335 years and 19 days, and was between the Dutch and an archipelago off the coast of southwest England called the Isles of Scilly. What's more, there were no casualties (because the Dutch forgot that they were at war with the Isles). It wasn't until a Scilly historian contacted the Dutch about the "war" in 1985, and received the information that the "war" was still technically ongoing, that a peace treaty was signed in 1986."
*"After her ninth child, Queen Victoria's doctor advised her not to have anymore. She responded with "Oh Sir James (doctor), am I not to have anymore fun in bed!". She was very much in love with her husband and when he died she kept the last glass he drank out of in the same place on the night stand for the remainder of her life (like 40-ish years or so). She meant proper mental after he died though. Half of London is named after him as a result If a Brit has ever so much as glanced in the general vicinity of a city, there's a Royal Albert something or other."
*"Melbourne was once terrorized by a crime gang that consisted exclusively of men with one leg and crutches. "“The Crutchy Push, with one exception, consisted of one-legged men. The exception was a one-armed man who kept half a brick in his sewn up empty sleeve. He led his followers into battle swinging the weighted sleeve around his head. Behind him came the men on crutches – each one expert at balancing on one leg. The tip of the crutch was used to jab an opponent in the midriff. With the enemy gasping for breath the crutch would be reversed and the metal-shod arm rest would be used as a club.” It gets better. After several incidences of their member outrunning cops sent to track them down, the police got together the ten most violent police officers in Australia, called them "The Terrible Ten" and sent them to beat up the Crutchie Push with hoses, because Australia is clearly one giant Carry On movie. sometimes I get to thinking that Australia isn't just a giant practical joke and then I hear stories like this.
I also love this girl and her channel I think she is Polish, am pretty sure of it thanks to her giveaway Polish fashion throughout the years video. She has great style and wit I think. I am almost in love with her quirkiness. (As usual I upload both the original youtube video and an uploaded video version, because sometimes videos I share on this blog get taken down in the mean time and I forgot what it was exactly and cannot replace it. And at the same time I want to link to the original youtube video as well, as it contains more info on the maker and comment section).
I also love it when she is critical and slashes historical incorrect videos in that genre of dressing up historically. She knows a lot about historical dressing styles and going by her instagram, I'm actually jealous of her life haha. I'm finally jealous of someone ❤ The dressing up balls and events she goes to, I love it so much. Here are some photos of her classical party going; this is Karolina Żebrowska. And here is an interesting interview with her.
Music clip of the day
October 9th 2018
Some Nietzsche quotes:
“The Thought of Death.
It gives me a melancholy happiness to live in the midst of this confusion of streets, of necessities, of voices: how much enjoyment, impatience and desire, how much thirsty life and drunkenness of life comes to light here every moment! And yet it will soon be so still for all these shouting, lively, life- loving people! How everyone's shadow, his gloomy traveling companion stands behind him! It is always as in the last moment before the departure of an emigrant- ship: people have more than ever to say to one another, the hour presses, the ocean with its lonely silence waits impatiently behind all the noise-so greedy, so certain of its prey! And all, all, suppose that the past has been nothing, or a small matter, that the near future is everything: hence this haste, this crying, this self-deafening and self-overreaching! Everyone wants to be foremost in this future-and yet death and the stillness of death are the only things certain and common to all in this future! How strange that this sole thing that is certain and common to all, exercises almost no influence on men, and that they are the furthest from regarding themselves as the brotherhood of death! It makes me happy to see that men do not want to think at all of the idea of death! I would fain do something to make the idea of life to us to be more than friends in the sense of that sublime possibility. And so we will believe in our even a hundred times more worthy of their attention.”
“The most common sort of lie is that by which a man deceives himself: the deception of others is a relatively rare offense.”
“It is not a lack of love, but a lack of friendship that makes unhappy marriages.”
“I'm not upset that you lied to me, I'm upset that from now on I can't believe you.”
“And those who were seen dancing were thought to be insane by those who could not hear the music.”
“Whoever fights monsters should see to it that in the process he does not become a monster. And if you gaze long enough into an abyss, the abyss will gaze back into you.”
“The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself.”
“He who has a why to live for can bear almost any how.”
“The surest way to corrupt a youth is to instruct him to hold in higher esteem those who think alike than those who think differently.”
“Every deep thinker is more afraid of being understood than of being misunderstood.”
Songs of the day
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