This is what it is...

UPDATE - 30. December 2017

Hi everyone.

First of all, many, many thanks for all the comments and wishes! It really meant a lot and helped me stay mentally strong to go through the hell... Immediately as I posted the article, I felt a relieve, sort of breaking some mental barrier. Couple of weeks later, I managed to finally see a dermatologist, still in Cardiff, as part of doing patch-testing. This time, I have to say, it was much more professional (perhaps cause the condition was so serious) but also I gained a feeling the doctors really want to help (which is not always the case, yet it is so vital). Similarly, my new GP was now more helpful too.

Right after the patch-testing week, I also finally went to Slovakia to see doctors there, including immunologist, dermatologist and for some complex tests on oncology. Lots of testing was carried out with minimal results - the only thing that came out was a "decreased cell immunity" and some indicators that I am "allergic". "To what" or "why" was not really answered, though lots of things were tested for and found negative (e.g. Histamine intolerance). I took a "blind" (i.e. without prior tests) anti-parasite and anti-fungal treatment as parasites or fungus can aggravate things + a similar "blind" treatment for Scabies. I increased antihistamine dosage (Fexofenadine twice daily, later Dasselta 4x day), got an immuno-suppresive ointment (Protopic 0.1%) as well as a drug to improve immunity (ironic, isn't it? :-) ), lots of creams and lotions (Excipial Lipo-lotio, Indulona, creams from Bioderma...), supplements (probiotics, vitamin D), cosmetics (Bioderma shower oil, Nizoral shampoo) and few other things. Just to give you an idea, all the stuff I got from pharmacy was round 300 pounds and all in all my health-care expenses were round 1300 pounds in November and December, despite getting last-minute a health-care cover in Slovakia through e106. I would not like to see the bill otherwise. Yep, better keep healthy these days!

 

Stuff from the pharmacy (first batch only).

The treatment had a good kick-in - I think Protopic worked quite fast, though I felt the condition was improving by then already (e.g. lymph nodes were getting smaller). I would spend hours a day applying different creams all over body, then waiting for them to dry up, so that I can apply another one. I would take baths with Oilatum (moisturising additive) and Potassium permanganate (anti-bacterial) almost every day. I ate (and still do) lots of garlic, ginger, turmeric, cider vinegar... And I tried to have loads of rest and as little stress as possible. All in all, with a couple smaller set-backs, the condition was slowly improving, which is why I eventually did not go for a hospitalisation that I was referred to by a Slovak dermatologist.

Right now, I am back home in Slovakia, where I've been for the past 2 and half weeks. I feel quite normal, like a human, which is amazing feeling, although something still itches here and there every day. It is incomparable with what was there before, but you can imagine I am now wary of anything.

I guess I have concerns over the future - what will happen when I come back to UK and its climate (tomorrow) and how this will work long term (e.g. Protopic shouldn't be used long-term). But again, to sum it up for now: I feel better and I'm gonna do my best not to fall back into the hell of the past. And I still haven't tried most of the many advises and recommendations all of you gave me! :-)

Thank you
Fero

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I don't like to complain or put myself in a position of someone who needs attention. But I feel I have to write this post for two very important reasons. First, simply because I really - and I mean it, really -  need help and perhaps one of you reading this will be able to help. I desperately want my life back and enjoy it again, as I used to... And second, because I want the people in my life to know that this is simply how I feel. I've rejected hanging out, hikes, parties and even calls - not because I wouldn't like to hang out, hike, party or chat, but because in my current situation, many things get just way too difficult.

So what's going on? In short, I suffer from extreme itching and I've been fighting this now for over 7 months. It's all over the body, it's almost incessant and it's the most debilitating thing that I've ever experienced in my life. On average day, I would spend literally over an hour doing nothing else then just scratching that abnormally itchy skin. Nails, rough towel, edge of the table... Anything to rub the skin. It's madness. By the time the itching subsides, the skin is often sore or damaged, meaning that even in the rare times of no itch, there's discomfort instead.

October 2017. Rash is literally everywhere

The itch comes often strong in the morning. That moment when I get out of bed has become a dreadful part of the day. The skin is incredibly dry, it's a challenge to move neck and quite often the itch would wake up with me. Another thing I dread is sweat, for this often brings another insatiable itch. So I stopped playing football or running, fear doing more of my beloved hiking, or even fear dressing up too warm in the cold, in case I'd start sweating under the clothes... And sometimes, lately, there is this weird itching seizure. I cannot describe it anything else then "pure madness". When it comes, I itch like crazy but scratching does not help as I feel like it's coming somewhere from within. I don't know if this is an allergic reaction (never had that before) but I can imagine this is how it feels. Once it's gone, I just lay in exhaustion with destroyed skin...

April 2017 - this is when the whole thing spread

Then there is the incessant itch. Not extremely strong, but strong enough, stinging and tingling here and there, every few seconds and breaking my concentration or attempts to sleep. It's frustrating, exhausting and completely debilitating. I can't count how many hours I lost this way, trying to do work but failing due to the itch, or waking up tired for lack of proper sleep. My productivity in work has gone down and even now, writing this post, it is a challenge. The itching is simply completely destroying me, both physically and mentally...

Other than itching I often literally shake from being cold. This is especially weird, considering that most colleagues around me complain it's "too hot" and turn on fans on them. I am not really sure what's going on, whether this is an extremely severe case of Eczema, or something else. The only thing I know if that something is seriously wrong with me.

Close up on the rash on the chest

Of course, I am trying to solve this. I've seen my UK GPs probably 20 times. I've even changed to another GP. I've seen a dermatologist in NHS. I will soon fly to Slovakia, just to see more specialists there. I've tried acupuncture. I've tried dozen of different creams, even made my own. I've tried diets, went 4 days without food drinking just bone broth or 7 days eating just rice (yes, only rice). Gluten free, dairy free, sugar free diets, low-histamine diet, you name it... I've tried antihistamines, doing meditations, I'm taking loads of supplements. There's a few things that somewhat sometimes seem to work to relieve the symptoms. But most of this just takes enormous amount of energy, time, and money and often results in frustration and more stress. With days filled with searching Internet for new options, seeing doctors, looking for special food, cooking special foods, and, worst of all, scratching, I am glad I am simply still able to come to work...

The problem here in UK is that, let's be honest, the health care just does not work. The GPs are often a pure joke (though there are rare exceptions). In my old surgery (Canna surgery), I've seen all the doctors there several times. None of them really helped and none of them really knew how to help. They would literally ask me "so what should I do", like a child who discovers their father for the first time with a high fever lying on a couch. The only thing they were able to do is prescribe tons of moisturizers and steroid creams, and, of course, write referral to a dermatologist. But this is where it gets tricky - I've seen a dermatologist here in UK once - and only once, even though I was referred to them more than year and half ago. The waiting lists are simply ridiculously long, leaving a huge gap of almost a year when "you're on your own" . And then, when you finally get your turn, you better be quick cause your slot is usually just 15-20 minutes long - for me not enough to even explain what's happening, yet alone get a diagnosis or some proper help...

Of course, you can go "see dermatologist privately" . Then you "only" wait few weeks and pay "just" 160 pounds for that "15 minute consultation". Any tests? Hundreds of pounds on top. Hm, so I decided to rather make a trip to Slovakia every now and then and see the doctors there...

You may say I should keep optimistic but I just don't know how. Nothing seems to work. Even strong antihistamines (Fexofenadine) work only occasionally and only few hours, and sometimes not at all. Some doctors will also keep saying "there's no cure" and "you just have to manage it", and I read horror stories of people who are "maintained" in semi-normal state using corticosteroids, antibiotics, in the worse case systemic steroids... I don't want to go down that route...

Dermographism - gentle stroke brings up a white line for about 2 minutes

One annoying thing is that people don't take this seriously. If you have a cold, fever and a chesty cough - that's obvious - you're being sick! But telling people you don't feel well because of itching may come hard to understand without the context. But people don't have time for a context in a everyday conversation, especially in UK, where every conversation starts with an absolutely superficial "you're all right?" . What should I say to that? "No, I'm scratching myself to death, how about you"? I guess I'm better off saying "yeah, surviving" - which is still true and takes care of it - and writing this blog post for the honest answer.

Perhaps one reason why people don't think it's serious is because I used to call it "eczema", a condition which is often associated with that small, "occasional rash and itch on hand". I used to have that kind of eczema. From my current point of view, I LOVED that eczema. Perhaps what I have now is still some sort of eczema, a super-upgraded version with add-ons and power packs. But when people say "eczema", they simply think of the first light version. Like the other day at lunch - I mentioned "problems with eczema" as a reason for my at-the-time weird diet, after which a chap next to me promptly leaned towards me, pointing at his super-minor barely visible eczema patch on a hand, saying something like "is it like this?", raising the eyebrows, the tone of his voice clearly indicating "don't worry bro, we're in this together". I guess next time I won't say "eczema", but rather "slow death by scratching", as Juro suggested when I told him this story.

Needless to say, my whole life has completely changed. I stopped doing sports as the sweat would bring strong itches. I ditched wearing all the clothes that's not cotton as not to irritate the skin. I've rejected holidays I'd otherwise look forward the whole year and even planning the rest of them is centered around having access to creams, special food and avoiding hot weather (and even then, most of the holidays this year were just too much suffering). I stopped doing Toastmasters speeches or recording music as I simply don't have the time and energy. And I certainly don't see or communicate with my friends and family as much as I'd like to.

Random picture from holiday in Wales where I scratch

Another random picture from holiday in Wales where I scratch

I think for many of you, this post will come as quite a surprise. Obviously, I try my best to hold myself together in a company of other people. Also, there are few better days and this is when I'd try to take advantage and be social. But there are also way too many shitty days and moments, which I just need to go through, one way or another. And I keep asking that typical "why me" thinking when will this terror end...

Yes, I am desperate and I'd like to ask for your help. Here's a link to a google document where I wrote up all my symptoms, history, things I've tried, put pictures. There is also a section around "how I can I help", mainly asking few questions (mainly aimed at "what the hell is going on with me"). .You may have a relative who's a doctor or a friend who had similar issues. Please share it with them. It has my contact details, I'd be very happy to hear from them. There's also a short version in Slovak and a short version in English, listing just the main facts.

And if you can't help medically - I understand,. I guess I'd just like to let you know: this is what it is. It may be a while before I play football with you, join you on an adventurous holiday or perhaps even before I meet you. Right now I need to sort this out and get a manageable life again. I used to have one, just a year ago. Now I am hitting the "publish" button with the hope that somewhere, there's someone who will be able to help.

In the midst of this hell I'd like to thank everyone who stands by me, cares and provide support and understanding - you know who you are. It may come difficult to imagine what amount of suffering this is, both physical and mental. It's easy to lose faith and sanity and It's just nice to know there's someone here for me.

Thank you