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
