I left! I got distracted by Birthdays and jobs and sleeping and all those things that get in the way of the VITAL job of telling a small group of people online about my skin condition.

I was 27 this week, I mean I was 26, now I am 27 – I feel like I’ve crossed some kind of bracket into another checkbox whenever I fill in a form. ’27-30′ oh dear.

Anyway, skin. Things have been okay ish, I’ve been avoiding gluten since I’ve decided that’s what makes me worse – I always kind of avoid most things being vegan, so I expect my liver is like some kind of palace – but yes, gluten-free, although my skin took a weird turn this week and I had to scrabble around to find some gluten to blame, it could have been in the malt vinegar crisps I ate but didn’t check:\, or excitingly, it could be in the Aveeno I apply all over me every day! 

so yes, that happened, it hasn’t been terrible but I have caved in a couple of times and turned the shower up SUPER hot, I know it hurts afterwards and it sucks all the moisture out of me, but for those 7 minutes of scalding my whole body at once it feels incredible! Please don’t do it! But my god. I need to work on stopping that habit – its particularly easy to do on my legs – since they dont twist and articulate as much as my arms/torso I can get away with abusing them much more. Sorry legs.

ALSO, this week I finally got to see a dermatologist, she took a bloody test, was totally cool and helpful and sympathetic, and in the end recommended I buy industrial size Aveeno with a special voucher for cheapness – and I use steroids once a week, for a bit. To clear me up. I got booked in for a patch test too but that’s not until Sept. Sigh.

I really don’t want to go ahead with the steroids so I think I’m going to bail out on them and keep on with this long-term unproven TSW thing, and hope that come Sept the skin test says i’m allergic to a thing, and if i stop eating the thing, I will improve. I just need to know, you know? No progress picture this time because I am nursing an unusually awful graze I scratched into me in my sleep, doesn’t feel like progress! but apart from that month 3 has been the easiest so far!

So I’m aware this blog has *almost* become a permanently sad voyage into my self-esteem, well guess what! Yesterday good stuff happened. Take that, pessimism. 

 

For what I can only describe as no-reason-at-all, my skin turned a corner yesterday. The day before was probably its peak of itchy/redness for about 4 weeks, but after this day of sulking and sitting still, i woke up on Saturday to find it was less red, less itchy, more supple and seemingly mended – I didn’t really think about my skin all day at work, and even snuck in some cake (wheat! bad!) and a giant Costa Coffee (sugar! bad!) with seemingly no consequences.

I was able to work out at the gym (read: my bedroom, with a different lighting setting), and spend the evening watching Nicholas Cage movies with wine and my fiance (this is the most profound leap, I would not normally be able to sit through ten second of his long boring face, but maybe that was the wine).

My point is that for all the sulking and feeling sorry for myself and feeling not worth the effort, days like this are fucking amazing, the sun was a little brighter, music sounded a little better, I got a cake! These are the days that make me feel like it will all be worth it in the end, I read a post on ITSAN about the positives TSW can give you, and this grateful positive outlook on the simple things is definitely one of them. I can’t wait until every day is like this. I’m only two months in but I’m just going to enjoy this moment in the sun.

 

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I went on holiday! I was able to hide in plain sight! Last year was quite insane business-wise so I took my fiance to Marrakech for a week to relax – it was amazing! No one questions why the white guy has gone red, not in the 30deg African sun! Sunburn is my alibi.

Now on week 7 of TSW I wondered if anyone could tell me what to expect? In terms of flare ups (and flare downs?) so far it seems pretty consistently terrible, so hoping it will abate soon.

With regards to the sun I learned some things – the organic hemp/geranium oil my fiance has been making (she has no idea how grateful I am) that gives me so much relief at home was too sticky and thick in Morocco – I had to abandon it and switch to good old Aveeno. My skin was pretty terrible but I still put that down to what I think is a mild wheat allergy. Being vegan is hard on holiday so I had to bite the bullet and eat some bread sometimes when there was nothing else – anyway, assuming this wheat caused my skin to become bad – sitting outside in the sun with no suntan cream on for around 45 minutes a day seemed to help SO much, like almost immediately my skin was softer, moister, more supple and free from the bright pink sleeves I have been trying to escape from. I don’t think it was co-incidence, which is a worry, since it’s currently May in London and looks like it’s about to snow. Considering looking into some kind of UV therapy or something, a sunbed once a month would do wonders for me, apart from the inevitable skin cancer, obviously.
 

But anyway! I went away, my skin got awesome, I came back, it got bad. Thems the breaks. I don’t mean to end this on a negative note, but I’m not sure how long I can do this. My whole life is being flipped around and I dont feel like me anymore – no jewellerly, no shirts to work, no zest for anything – I got so much happier when my skin improved, I’d give anything to be that person all the time. I know my girlfriend would too. If the only cure is time then I’ll do it, but i absolutely won’t enjoy it – and maybe the sacrifices that will have to be made over the next two years are too important to lose? What then? She is beautiful and she is perfect, but her patience can’t last forever.

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Still fairly grumpy, today is Tuesday and my skin is surprisingly supple. Yesterday was the hottest day of the year so far and I basked outside in the garden like a weird pink snake. shedding dead skin and absorbing delicious vitamin D. I was skeptical about the benefits, but I’m heading to Morocco for a week tomorrow, so I wanted to test if the sun would be nice to me or melt all my skin off like that bit in Terminator 2. It was nice to me.

There’s something about TSW that keeps me constantly on edge, I am grateful for every day that I wake up and can turn my head to talk to my fiance without turning my whole body like an invalid, for every time I go hours without feeling uncomfortable, for the days when my posture and my self esteem aren’t affected by my skin. I haven’t styled my hair for months because I don’t see the point, no one is looking at my hair with a face like this.

But yeah, today was good! Who knows if tomorrow will be, but I’m a completely different person each day, like being bi-polar. I wanted to end this self-indulgent post with a short list of stuff I’ve found helps me out in the bad days.

Socks. On your hands, at night. I didn’t know how bad it was at night but my fiance says I wake her up sometimes with the amount of noise coming from me scratching – putting socks on my hands just before I sleep helps me to not wake up with exciting new cuts and open sores.

Keeping my nails ridiculously short – itching is fine, I can deal with itching, but the soreness that comes from an open wound on a crease in my elbow, or the discomfort caused by red raw shoulders and chest sucks, so if I keep my nails super short it helps keep the effects of scratching down.

Exfoliate.

Wearing softer material – I have this one Sepultura band shirt made from ‘combed cotton’ thats too big for me and been washed a heap of times until its become really soft – the boost I get from finding it clean in my drawer at the start of a day is so good. I’ve cried sometimes at the fact that, as a fully grown male human, I can’t even wear a T-shirt normally. What kind of man am I.

Realising why I itch. I watched some videos (at the recommendation of ITSAN) of some doctors talking about the lymph system and how it works. and speculating that the reason I itch is because my skin is asking to be stimulated to help the development of oils and get the bad out of me – realising this has helped me to conciously ‘tickle’ rather than rake at my skin.

Drink water. A lot of water.

Eat like a cave man – seriously. I figured my body is having a hard enough time fighting the withdrawals, the last thing I should do is give it other things to filter out of me – so (as a vegan) I already don’t eat meat, fish, dairy etc – but during a flare up I also stop eating wheat and sugar and basically live off raw vegetables – our bodies haven’t had enough time to evolve to tolerate sugar and wheat and gluten, but have been fueled by vegetables for millions of years. Give it a go, it’s hard but good.

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Okay, so having a bit of an itchy time shouldn’t be compared to hell..I agree.

Because hell isn’t real, and my itchy skin is.

I’m 26, I live in London, England, I have a full time job, a fiance, and a skin condition. It’s taken me over a quarter of a century to find out what’s wrong with my body, and I think it’s TSW, and this post is it the start of me documenting how coming off them works. I figured it might help some people to read, but most importantly; it’d help me to write. 

To put this in context (briefly!): I’ve had eczema since I was a kid, and brilliantly learned in my early teens, that splashing on a little Betnovate, Eumovate, Hydrocortisone etc. would keep my skin looking sparkly and nice. Not doing this made my face and inside elbows (inbows?) awful and rank. I diligently applied this, with encouragement and praise form my Doctor/s, for about ten years. and everything was fine. Up until two years ago I was still doing it – if I knew I had a date coming up or a time where people would be around I would buy a tube and use it the week before to clear my skin up. 

Anyway, like everyone else the steroids slowly stopped working – my whole body got bad, the doctor’s told me to use more, and I refused. so as it stands right now (and as I start this blog) I’ve been off steroids for about a month, I’ve been vegan for about 2 years, and I’m due to see a doctor in June for a skin allergy test.

My theory is that if the allergy test says i’m allergic to wheat or sugar (pretty much the only things left to cut out) then awesome, i’ll cut them out, but my skin doesn’t feel like an allergy is causing it – like everyone else I have the same red torso/white hands, and the same weeping hot skin, the same constant sadness at how terrible I look, I haven’t been to the gym for about 6 months and my appearance is making me desperately sad. 

I’m hoping my journey won’t last too long, and I’m hoping TSW is real and that it will fix my skin, because its affecting every part of my life, i’m a lot less productive at work, at lot less patient with stuff, a LOT more anti-social, and a lot less attentive in my relationship – which is the most important thing in the world, and neglecting the girl I want to marry because I can’t function normally due to relentless sore discomfort is killing me.Image