13 November, 2013

Roadtrip in Sicily

Last week I made a brilliant week long trip to Sicily. It's been wonderful. I made some video's of it all and tried to put them in small road movies :) They give you an impression of the things we have seen and the week in 4 x 5 minutes. Please watch in HD and select the 1080 quality option in the right top of the video's. I also kept a bit of a diary and made my own road movies :) Pls check them out in the links below





My rosacea was playing up of course the day before departure and the whole first day. It was my birthday and I was sick in bed all day. Some form of flu I think but the inability to keep food in and the bad bowel cramps I had must have stirred up my flushing. We left at 2 am in the morning towards the airport and my right cheek was bright red and on fire. I brought a cold pack and had the air conditioning on in the car but it didn't really help. Half of the flare I blamed on my own stupidity. A day earlier I had looked in the mirror in very unflattering light, coming from right above me and it highlighted the rough, seb derm like texture and excess skin. I posted some yucky pictures of how this looks on the seb derm post I made some time ago. I still haven't figured that one out completely, but there seems to be a point, where this excess skin forms a protective, normal looking layer of more normal looking skin. It covers the thin, frail red skin, which always looks to me like the layer of skin which 'normal' people get after a very rough skin peel session. Yet my skin always looks like that normally. Thinned skin, lack of protective skin barrier etc. But when I don't scrub my skin too much, I should have waited with that till after the holiday in hindsight.


there is some skin build up which forms this layer and makes my skin so much more calm. Yet, after say 3 or 4 weeks it seems to build up too much and you can see dead skin build up on top of it all. And with this type of lightning from above my head I can see it and it gets highlighted, and it usually freaks me out a bit and makes me want to 'clean up'. I know that rubbing too hard makes me bright red and flushed for a few days so I didn't do that this time, but still enough to set my skin further off.

In the plane I had brought my gel pack (I bring a doctors letter from Dr Chu with me to hand over to custom officials when needed) and discussed with my 2 friends to sit in the middle seat, so I could use the air ventilation units from all 3 chairs (getting both cheeks covered). They didn't find that a problem luckily. I brought my mini laptop and watched The Amazing Race season 22, which made time pass quickly. 



video

Here are some of the notes I made during the trip:


1 November 2013


Its been a bit of a strained day; the first one of our week long holiday to Sicily. Yesterday was my birthday and I was so sick all night and day. I might have eaten something wrong perhaps, but my stomach was the size of a basketball and so painful and swollen that it kept me awake all night. Couldn’t keep any food in the day afterwards and despite having had reasonable skin that whole week, flushing now set in with massive force. I made a picture on my birthday and my face is already puffy and a bit swollen from the flushing the night before. But today, whoawwww, a whole different ball game. So massively red and flushed and in such pain, it has been very rough to travel and try to be positive nevertheless. I made some god awful pictures of myself and I don’t even recognize my own face in it :( Cheeks swollen, nose swollen, eyes swollen, bright red and in my own eyes a red monstrosity :’(
  

  
                                            
I had been cooling my face during the car drive to the airport and had the aircon on but once I was out in the airport hall, rebound flushing set in with a big force and until now, 9:30 pm, it hasn’t subsided. I have a lot of paps too and some upcoming seb derm. What a nightmare, I feel ashamed to even get out the car and face people, and just look away instead and clamp onto my partner. We are off with a friend and I had a massive fight with him over lunch in Castellammare del Golfo. (More on that in a bit.)
I’m feeling again how much rosacea can literally dominate every minute of my life when its this active. I feel calm when I have it in some sort of predictable control, but as soon as it goes crazy again, like the past days, and there is no stopping it and I look horrendous (I think), I feel so defeated and deflated and its so hard to try to ignore the severe burning and tightness and heat radiation from that face. I am also starting to think that traveling might not be a good thing to do for me anymore. Or at least not holidays like these. I’m sure I will enjoy the videos and pictures I am forcing myself to make, to make it worth while, later on, and apart from the pain and rosacea it would have been a great holiday I think, but right now I’m in survival mode and this all resembles more of a boot camp. My plan for the next days:
*no more late searching for affordable B&B’s, but prebooking (we drove, walked and searched for hours our first night in Trapani to find an affordable hotel or B&B; we thought not planning anything would makes us feel 'free and adventurous', but it only gave stress in the end).
*making sure we arrive there somewhere in the afternoon so that they can place my coldpacks in the freezer and when we return I will have my flushing combating tools (right now Im trying to cool with some ice cubes, wrapped up in a plastic bag, it’s just not working..)
*finding me jojoba oil, I forgot to bring it with me and my skin is so tight and dry that it burns
*lots of time in the car, driving with me in the air conditioning to keep some control over the flushing. And outdoor walks and explorations in the early morning or later in the day, when the sun isn't bright.
*trying to not let it bother me and to enjoy this place and to remember myself that its a flare and that flares will subside again

The plane trip was beautiful by itself, clar skies, gorgeous views. Anticipation for the upcoming adventure. I was red in the plane and just made sure all available ventilation devices on top of me were pointed my way (‘stole’ the one from my friends too, pointing them all on me, I sat in the middle because of that). We then had to wait over an hour at the car rental at the airportt, I just let the guys sort the car out and sat on the steps with my mini laptop and watched another episode of The Amazing Race. It helps me to distract myself and make time go faster. We looked for some ice cubes at the airport but only found a pharmacy who sold dry ice; some chemical reaction in a bag, and when you slap the bag hard something is squeezed inside and ice is formed. In the car I used it to cool my face and had the airconditioning on as well (pointed at my face). I tend to cool with a cold pack for a bit when really flushed and add a fan or aircon air flow to it, and it usually helps to bring a flush down after some time. I brought a frozen cold pack with me on the plane (usually allowed and I bring a doctors letter from Dr. Chu if customs ask for one), but it had already warmed up completely by the time I entered the plane. A friend with rosacea emailed me this week and asked how I manage to travel this much with rosacea, and this is how, I guess: bringing hats, a fan and cold packs (I bought 2 extra ones and ask in every hotel if they can put them in the freezer for me and then I can use them when needed and bring one with me on day trips). I rent a car with airco, walk in the shade and see how far I can push my face and do the things I like to do. When I have a bad day or bad reaction, I do things which allow us to spend more time in the car or stay in the hotel for a day and have walks in the mornings and late afternoons. It's not as great as in the past, when I was young and able to do anything without second thoughts about my health, but when you spend so much time indoors and in a controlled indoor environment, going out is fantastic, no matter how much adaptations I have to make.


4 November 2013
Wow, we had some volatile days :) Highs and lows, with the highs reserved for the Sicilian landscape, villages and experience and the lows for some of the arguments with one of my travel companions. I guess I already expected some of that type of drama in advance, knowing him for years. But traveling with someone is not the same as being friends in every day, normal, structured life. The friend is truly great and a very colorful type. I love him dearly and we are very alike in our character, enthusiasm for music, books, movies, politics and so on. And hot tempered lol. He is a bit special, which is the same term he used to describe me lol. He has a tendency to have things in his life strict to be in control of everything. Iron logic rules, order and discipline! He is very curious but also likes to know everything, be in control. I had already

explained him about my skin issues and that I had to keep an eye on that and avoid some triggers while on holiday, and friend later confirmed that to him when they discussed it in advance. He said that I need to either drive or sit in the front of the car -where I can have ventilation on my face-, that I can’t walk or sit in the bright sun for any prolonged time and that we have to try to walk in the shade if possible; that I can’t just eat everywhere and need to look for restaurants where they serve somewhat basic, rosacea friendly food. Friend said he understood and was fine with that. We email often, exchange a lot of music and movies, discuss our lives, he comes over often and I always felt that we accepted each other as we all are. Me being a bit odd and self-absorbed (read; rosacea vigilent) at times with a slight tendency to be impatient and snap when grumpy or flushed and burned up, him acting hyper active often, talking non stop if possible and being slightly OCD in general and pushy in how he wants things to happen. A lot of ‘specialness’  as you can read lol, but miraculously all that stuff had never collided and combusted. Yet.. Until this holiday. They say the best test case for your relationship is to go on holiday with your partner, and I guess that also applies for friendships.
Things became a bit tense a few days before departure. We would call each other and that all went different from how we planned it, with us calling too late, him not being there 15 minutes later, we not wanting to call after midnight -by the time he emailed me back- and it gave some frustration with him. A bit of back and forth quarreling but nothing major and we went on the holiday in good spirits.


Earlier we had had also already discussed the difference in our way of holidaying; we like to take things easy, do some basic preparing and then just start driving and see where we end, what we like, where we will stay and we don’t over plan everything. With exception of the place where we want to sleep (and I check if they have rooms with a window, aircon and those sort of things). We don’t get stressed when we get lost somewhere or end up on a different route than we anticipated and don’t like to press hundreds of things in a minimum of time and rather enjoy a few good things instead of rushing past everything. Well, he is the opposite in about everything lol. He likes to be very well prepared, reads up everything in advance, wants to see as much things in the time he has as possible, has a tendency to get nervous and stressed when things go not as planned or when confronted with unexpected problems. He is a great guy, interesting to talk to, but he can become a bit critical, panicky and outspoken to others when he feels out of his comfort zone; when people do things differently, don’t drive like him, do things he disagrees with (traveling faster than the max. speed for instance), when we can’t find the direction. We like to take it easy and look on the map and try to find our own way, he likes to get out of the car often to ask directions and he is very good at it I have to say: he is friendly and enthusiastic and likes to have short discussions with strangers. We actually learned from him in that respect; he got on with things that way and we spoke to many really friendly people, some even driving for miles in front of us to show the way. Without him we might have missed those experiences. Friend hates to take the wrong direction and not knowing if he goes in the right direction and he hates it even more to waste time. He not only asks where to go, but also where to find the best restaurant, the best ice cream place, the best places to see etc. And people have been very friendly and helpful. Like I said; one guy drove in front of us for 6 km to guide us to the right national road when we had gone in circles for an hour, another walked us through a city to show us his favorite spots (being very proud of his town). Those are special experiences and we had him to thank for that. But it also resulted in arguments and a bit of stress, him being so perfectionistic and easily stressed.
He has a temperamental Italian character and I am not much better, lol, and just snapped back

the first days when I felt he was unreasonable, whereas bf is the calm and wise type who just make clever jokes and stays untouched by it all. We tend to laugh and just see him as a quirky guy who we like and have good conversations and get-togethers with. But the first days here he was so outspoken and critical about everything, correcting us and being passive aggressive in his determining where we would go, where we would drive etc, that it caused some friction. I am horrible in the way that I respond primarily too when I feel people are unreasonable, by getting unreasonable back to them. With 2 extrovert types like us, that clashed. Then subsequently I felt shit about myself too.

The first day in the car, he made a lot of comments on my rosacea and thats what brought me in this war state. We had him over for quite some time over the years and I told him about the rosacea, and why I use a cold pack or a fan. He said he never noticed the rosacea but was very nice in asking me to send some information on rosacea to him. He was always dead nice, never looking weird or making any type of comment on it. I felt comfortable therefore and able to be myself and relaxed, and not rushed and in high gear to get rid of the guests (him in this case) again. Now, however, I think I must have done something wrong or started at the wrong foot, because he was complaining about me having the aircon on immediately. I was so red (see pics), totally swollen up and skin was so hot and painful that after many hours of travelling all I wanted was to blast the aircon on full power. He commented that it was too cold in the back first and we both explained that I needed it for my skin. He started a whole discussion, in a very annoyed tone, about how illogical it was to him that the aircon would help me and what nonsense it all was. 
Bf corrected him, said that when you are hot and something burns, cool air helps obviously to lose some of the heat. But he was so dismissive about it and then started that as we all pay for the car, he wanted to sit in the front. We explained again that I needed the aircon or at least the ventilation in the front to not get too red and he made his disapproval of it all very clear. I was upset and started hitting back on him, not in the most docile calm way, admittingly. I think that I should have explained calmly that this was only needed now, not consistently throughout the trip. That my face was so flared now that I needed this ultra cold air but that once things are calmed down again, I usually have enough comfort from a mild aircon or even normal air when the sun isnt burning on the car windows. But I forgot to say all that to him, and also to think of what all this must be like for someone who is not used to live with a rosacean. I just bitched back and felt disappointed. I guess it made things go from bad to worse, he asked why I even traveled at all then? I went to Australia right? How did I do that then? Its warm there! I explained angry that I went in winter and had friends who actually accepted me using the aico in the car. That I already spend a big chunk of my life indoors with the fan on and needed to get out sometimes. He said, “what type of a life do you have anyway then? Being behind a fan all day, pffff “ It was full on war by then in the car, me screaming Yeh indeed, I have a shit life and thank you for ruining this one week of escape for me too now”. He felt I acted like a princess and that I wanted to be pampered, sitting in the front, deciding on the airco, claiming to be sick (‘Yeh I have high blood pressure, I’m sick too’). It was ugly. I even told him that we’d better part our ways then, as there was no way I could compromise in that respect. That the aircon was on now because I was so red, but that I usually only have normal temperature air ventilation. That I thought we had gone over this prior to departure, in the weeks leading up to it. And for him to get another rental car then perhaps, because I couldn’t deal with all this stress for another week on the one holiday we had all year. 

It took an Italian style heated argument over dinner that day for things to calm down and him to apologize. Then he turned 180 degrees and seemed like the guy we have known all these times again, being nicer and he said he had been cranky over other things; the issue over us not calling him as planned, me being rude in his eyes that morning in his place (I asked when I came in if he used incense and when he said yes I made a lemon like face apparently and said I am allergic to it and went to the balcony; bf explained that I really flush badly from perfume smells and incense, but the friend found the way I handled it insulting and rude). He now told me that he had been unreasonable in retrospect, and he did want to understand rosacea and had spoken without thinking, saying things he didn’t mean etc. That he really was fine with all the rosacea adaptations and just hit where it hurt and that he was sorry for it. Tempers had calmed down by then and he asked again to please forgive him, so surely I did. But before that apology I had felt like crying in the car. Not that I would have shown him that by the way. I said I had acted uptight and confrontational too and should have shown a bit more understanding and calmness in return and also said things I didn't mean (like him getting his own car); that I just felt powerless and pushed in a corner then.

I always expect people to act and react this way (critical, dismissive, making fun of my health problems) when I allow them too close by or allow them to hang around for too long, making them able to see the real me; ridiculing my rosacea issues and drawn back behavior, criticizing me over it and when it then happens, I feel horrible. And tend to get this cold sarcastic anger. It was not nice. But he said he really didn’t mean it like that and just didn’t understand and that he now did. And true, he hasn’t complained anymore about the aircon or me sitting in the front or needing other rosacea adjustments. But it did hit my self confidence.

We consider each other friends though and once I started apologizing for my wrong doings, he soon did the same and after explaining our point of view to each other he was already making jokes about it again, and said he thought friends could have words now and then without it affecting the friendship. After a few temperamental days we now have better understanding what ticks the other off, when to just let the other blabber and comment and not take much notice of it and what to expect from the other in terms of odd quirks and behaviors. I no longer waste energy on interfering or participating in discussions about where to go in the car or over the others driving style. As I said in the midst of all the drama: At least it’s not boring :)




We made a tour from the airport near Palermo, over Trapani, Marsala, Corleone, Caltasnissetta, then Ragusa, Modica, Noto, Siracusa, the Etna and Palermo. It was awesome. I love driving  around to places, nice music on, comfortable with driving, little grannies fleece plaid on my knees lol. Some of the highlights were the first place we stopped, where there were stunning views and a beautiful rainbow.
We tended to leave around 10 am most days, either for the next leg of our trip, or when we stayed 2 nights somewhere for our day trip. Night 1 was spent in Trapani. We arrived there very late and the next morning we went to the top of  the big mountain in Erice. We took the wrong exit the first time and had to drive allll the way back again, through Trapani and back up (one way traffic), which cost us at least an hour. Our friend was agitated but we tried to enjoy the views. Second time round we took the right exit and had a walk in the quite touristic village. We then drove to Marsala, which was a bit disappointing and for a good 4 hours then to Corleone, through the inland roads.  had been a pain in the ass to find Corleone, as we took the inland roads instead of driving back up north to the coast and Palermo, to take the highway to Corleone from there, as s hotel staff member in Trapani had advised us to do.  Anyone taking the inland roads was 'mad' according to her, as there were virtually no road signs and everybody got lost. She was true!! We crossed so many road signs with the same destination pointing in perfect opposite directions lol.  We wanted to see the nature of the midlands of Sicily though, and thought we would manage with some questioning here and there of the locals. But even with their help it was difficult and after 6 night and darkness would fall very swiftly, making it even tougher on the unlit roads.

Corleone is  a really nice little town in the hills, very cool with a cozy center and very friendly people (well, the ones we spoke to at least) and a '40's feel to it. It has a big market place, surrounded by ice cream parlours (the old fashioned Gelato types), benches and lots of MEN hanging around in groups, smoozling and gossiping and glaring and glancing at each other. Where were the women?? No idea. Some looked very Mafiosi style lol but I guess we wanted to see that as well so we might have had a colored view.  It looked like it was taken straight out of Novecento. Or  The Godfather, love those movies, they are my dad’s favorites and we must have seen them over a dozen time easily. I love Goodfellas too by the way (and casino, and Scarface and Carlito’s Way etc etc). Do you like those movies? We were checked out as well and probably quickly classified as mere tourists. Although we saw little other tourists that day. It was a nice little town, with small streets and alleys, wash hanging out, old churches etc. It felt lived in though, in contrast with the place we visited a few days later, Notto.
We were accompanied by very affectionate and nice street dogs, who cuddled us and were like loyal friends in how they kept pace with us, waited at the door of the restaurant we ate at and walked us back to our hotel. I never saw such friendly street dogs in my life. We wanted to do a mafia tour but lacked time, unfortunately. I did see some spots which I thought I had seen in the Godfather movies :)

 In Corleone we stayed at Leon D'Oro's restaurant/hotel. He was slightly grumpy initially and we had to laugh when we found out that Corleone was literally plastered in promotion and road signs for his condo. We joked that he must be the wise guy from Corleone, with so much publication :) The place was nice however. He also hosts a lot of weddings in the lovely gardens at his place. We had a nice room, all red velvet on the bed and for the curtains, pictures of Christ and Maria and crosses etc. Just as you’d expect there. Breakfast was nice too, we sat with an elder Israeli couple and the lady of the house had prepared lots of homemade pies and pastries, they also love ricotta cheese in their croissants. Very heavy breakfasting, I muffled a part of it in handkerchiefs for lunchtime lol, Dutch style (Dutch are said to be cheap asses, not me btw).
 In Corleone we spent the evening wandering around and eating in a nice local place called "Al Capriccio". It was a very old fashioned restaurant, difficult to find but we asked a local where to best go eating and he directed us there. Good choice, it was full with local families and youngsters, the food was delicious and very cheap. I had the best mixed mozzarella salad ever.  The others had pizza.
They had great food for a small price and it was packed with local families and youngsters. We had delicious Sicilian dessert, called cannoli Its filled with a sort of cream and ricotta and so fabulously delicious. I had them in the classical dessert shape and for breakfast in a more donut like bun, hmmmmm. Another great dessert we tried was Cassata siciliana and of course tiramisu. I also snacked on roasted chestnuts, which they still sell on the street in Sicily. It was great weather, sunny and around 24 degrees, warm enough to not wear a coat and not very touristy, the tourist season ends here usually late October. 
 


On day 3 we drove past Caltanissetta to Ragusa. A wonderful baroque town, one of my favorite this week. We stayed in a lovely place in the center called hotel affittacamere Bertini. In Caltanissetta we walked around and bought some nice food for lunch at the local market. Ragusa was a wonderful, beautiful place, situated on a stunning hill and with a very old town center and a slightly less old town center (but still a good hundred years old I reckon). We stayed with the most endearing host Guiseppe, who was so enthusiastic, so friendly, so chatty and so helpful. he made us spectacular ricotta croissants in the morning which made you not crave any more food for at least 5 hours.
In Caltanissetta we walked around and bought some nice food for lunch at the local market. Ragusa was a wonderful, beautiful place, situated on a stunning hill and with a very old town center and a slightly less old town center (but still a good hundred years old I reckon). We stayed with the most endearing host Guiseppe, who was so enthusiastic, so friendly, so chatty and so helpful. he made us spectacular ricotta croissants in the morning which made you not crave any more food for at least 5 hours.

We made more day trips, staying 2 nights in Ragusa and visiting Notto and a beautiful church procession for Don Bosco, with a cathedral full of locals and children singing for him. I’m not religious but do like the atmos in churches and the chanting. It was a really nice thing to encounter and felt very ‘non touristy’ and ‘real’, for lack of better words. 

We had started pre booking from the second day onwards, as I couldn't stand the stress of finding a place on the spot, then looking for all different places to compare prices and to lose so much time there. And then to not have any cold packs on top of it all. Palermo we loved. There was a bit of drama however when we found our hotel (pre booked). 
I wrote about it in a diary:

And now an awful bad day in Palermo. The city is fantastic by the way. Last night we arrived and in the hotel we stayed they just painted stuff and everything smelled of paint and glue and I get extremely flared up from it as always for some reason. So after being on fire massively we decided to find another hotel. 100 euro's down the drain as they wouldn't refund, and we are now in a chemical free hotel. But I´m still really flared and red and burning. I felt so miserable, having to move, putting my friend through the stress of getting all our stuff out the hotel while I waited outside. Me then acting erratically because I felt so frustrated over this and when he offered to find another hotel (before we decided on that) I was angry and upset even though he made the right suggestion, so at 11 pm we were dragging all luggage through town to a new place. He is so understanding yet I felt such a pain in the ass. Then today bright red through Palermo together. The first hours I was such a right jerk but it takes so much from you to keep going when you have a burning and super duper red face. Later in the day the burning subsided and I got a bit less red and then my mood is a lot better again as well. It can be a horrible condition for sure :( 

Overall however, my rosacea has not been a real problem, apart from the very bad first day. Its odd, but I tend to always do better on holidays :) I know of a few other bad flushers who experience the same thing when they are on holidays. It might be the mild temperatures, the relaxation, the distraction. The night and morning after the chemical pain exposure, I was really uncomfortable however, with deep red inner cheeks and sensations of burning and heat constantly. Its mainly the pain and burning that bother me most, a bit of redness is not something people see as a problem I noticed over the years. Heck, I was in Palermo that next morning, bright red and I looked so horrific, but an older woman stood in line with us at the pharmacy turned to us, looked at me with a big smile and said "Bella bella", and smiled. I was so surprised..Now that I am back in cold weather, I started developing seb derm within days and am a lot more red and flushed again..

Here are some pics, and I also made quite a few of my rosacea-face. More updated on the last days to come.

Palermo is really awesome; it is what I expected Marseille to be (was a bit disappointed with it); it’s a harbor city, lots of old small streets, little markets, its smelly and rough, washing is hanging all over the streets, people are rough looking but very friendly, you hear music from open windows or from shops, people on scotters everywhere, beautiful old statues and buildings but it all has a bit of a raunchiness to it because of the air pollution and because the city is basically well lived in. Some riches and expensive streets and shops but a lot of proletarian style area’s, with students and hand workers and it just oozed an old Mediterranean atmosphere to me. Very pleasant to walk there and very surprising every time you turn into another street and find out what you will find. We loved the area we were in, the student quarter and despite being kept awake both nights by live music that went on till 3 am, we loved it. The harbor promenades are far from fancy, Marseille is way more beautiful in that respect, but it still felt really nice to sit there and have a breeze and a coffee (water for me) and see people passing by with ice creams in their hand. They don’t look as polished and glamorous and thin as the French, but a bit more rough, dark, poor I guess. Loved it a lot more than the Rivièra. We had great food at a small restaurant around the corner of the hotel, with a very handsome but grumpy owner who remembered us after one time and also waht we liked to drink. We saw very little tourists and liked that as well. Palermo had its own china town, but it seemed to consist of one street lol. Lots of nuns walking the streets. Two days was too short, we will try to come back some day, Sicily was fantastic and we missed the whole north east part and south west.  


Update
the friend emailed me this week and was very nice: 
"U may find it stupid but I was feeling guilty about the rows we went through. I didn't take your illness enough in consideration. Sometimes I'm too focused on myself, I finally understand now how life is difficult for you and why you will prefer not to mingle with people." 
Its nice when people finally understand how rosacea affects your life and your personality. 


 













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