Monday, 4 July 2016

Psoriasis - painful and embarrassing

Psoriasis and other chronic skin conditions - coping is so difficult
Coping with a chronic skin condition is incredibly difficult
In my newsletters for the members of my Tarot VIP Club, I have been talking about the 4 main chronic health conditions that affect me.  This time the topic was Psoriasis.

I expect a lot of you know about this - whether you have it or know someone who does.  It affects around 3% of the world population (so even with the small number of people who follow this blog, there is probably at least one other person with Psoriasis).
This auto-immune condition has many different forms, but basically is patches of abnormal skin.  I will not go into great detail on here (read HERE if you would like to know more about the different types and treatment etc), but mainly talk about how it has affected my life in a practical and emotional way (and continues to do so today).

It first flared up with me when I was about 3.  We were living near Cambridge at the time and I was sent to see a dermatologist at Addenbrookes Hospital.  Some of my first memories were having to take my clothes off and a nurse coming into vacuum the floor (as my entire body was covered and it flaked a lot), and also my dad having to carry me around the house, as I was unable to walk due to the pain.

It has varied throughout my life - from periods such as now when I 'only' have it on my scalp and occasional patches on my eyelids (plus the very dry skin on my hands and feet), to several periods when my entire body has been affected and I have been hospitalised.

Some of the worse times were during my teenage years when other girls were wearing bikinis and being confident in the swimming pool, whilst I sat on the sidelines keeping long sleeves and trousers on (the chlorine and cold water was painful for me - and, of course, now I realise that I also had Fibromyalgia and cannot cope with cold temperatures).

I also had a few years of extreme pain/flaking from 1990.  I was hospitalised in Whipps Cross Hospital in East London for 2 weeks with the most severe and dangerous form of the condition.  I was hardly able to walk, as my joints would also swell up, and could never get comfortable.  My whole body was fighting infection and it was just lucky that I was otherwise young and fit.

That followed with a few years where I was having to cope with this horrible skin condition and start a busy career.  Commuting on the bus in hot weather having to wear polo necks and trousers ... only being able to wear trainers, as my feet were so sore ... my eyes being almost shut due to the swelling.  Not a good time for me in many ways.

It did gradually clear up over the years, but around 2001/2001 I did get another flare up.  This time I was referred to the Birmingham Skin Clinic, which was literally just up the road from where I worked.  I was prescribed light treatment - similar to a very powerful sunbed, which I could only be exposed to for less than a minute at a time.  This had an almost magical effect on my skin and I got a fantastic tan!

I have not had to have any significant treatment since then - just managing it myself, except when it gets really sore on my scalp and then I get something stronger from the doctor.

However, I know that it is still there and could flare up at any time (in fact last night when I undressed I discovered an angry red patch on my inner left arm near my armpit - this can be a sign of my body fighting infection, and I have to be careful as it could lead to a full body flare).  There are various theories about what causes it and why flares happen, but there has been no pattern with me at all.  Stress, diet, other infections, lack of sunlight ...  These do not guarantee that my skin will be flaring or in a settled state.  I now obviously try to keep my stress levels down and eat a fairly healthy/balanced diet due to my other health issues, so hopefully I am enabling my whole body to keep itself as comfortable as possible.

So many people think that Psoriasis is 'just' dry skin, nothing to worry about - but it can be fatal in the extreme cases.  I admire the mostly men who can walk around in the summer exposing their legs/arms and not bothered by showing the world they have Psoriasis.  I am not that confident.  I hide mine away if at all possible, and when it has been really extreme only doctors/nurses really knew how bad my skin was.  You become very good at putting a smile on your face, dressing to hide what is underneath and only having a good cry when noone else is around.

Here are two useful articles - The Emotional Toll of Psoriasis and The Emotional Impact of Skin Problems 

Having a skin condition affects so much of your life, and how you are treated by others too.  I was bullied at school a lot, and strangers in shops/on public transport have moved away from me in horror/accused me of having Leprosy/will not take money from me when they see my hands etc.  Sadly these are often elderly women - the very worse offenders of being judgmental and basically rude.

A recent survey showed that - ... 84% of people with moderate-to-severe psoriasis suffer discrimination and humiliation, with many being stared at in public (40%) as a result of their medical condition. In addition, the results from more than 8,300 participants show that people with psoriasis have very low treatment expectations of achieving clear skin ...  (Read the full article HERE)

One positive thing about having so many chronic health conditions is that I do not take for granted my 'good' days or having mainly healthy skin now.  Our bodies are truly amazing and we really need to take better care of them.

I would love to hear from anyone who is a sufferer of Psoriasis or another skin condition.  It is always good to feel that we are not alone.

Ali x

1 comment:

  1. Ali, thank you for sharing so frankly about your psoriasis. This sort of blog post is extremely useful - there needs to be more awareness of many conditions like this. (My goddaughter has had bouts of it, particularly during times of stress in her life.) They do say that if you suffer from one auto-immune condition you are likely to suffer from others - auto-immune diseases tend to hunt in packs!! I have M.E. (somewhat similar to fibromyalgia) and had ulcerative colitis (another auto-immune disease) until colon cancer necessitated the removal of the entire large bowel - today I was diagnosed with adhesive capsulitis (frozen shoulder) which I have just discovered is - surprise, surprise - an auto-immune condition! I have had a steriod injection into the joint and am now on prescription NSAIDs and am awaiting a physio appointment. It is extremely tedious, isn't it, being diagnosed with yet another medical problem - I was just starting to get my life and independence back after the cancer and now I cannot even propell my own wheelchair!

    Thanks for your visit, and I look forward to seeing more about your hand-made books. On the subject of cutting machines, you are right in saying that the Silver Bullet is the upgraded version of the Cougar (which I have got). Yes, these machines are expensive, but they really are the best, and if you buy through Thyme Graphics you get access to the best after-sales service and advice I've ever come across via their owners' forum (also a lot of fun and friendship). I haven't used mine to its full potential but it is truly amazing what you can do with these machines! I would recommend them without hesitation. My Cougar is the smallest one (13 in) which is more than adequate for my needs and takes up less space in the studio, too.

    I have got so many things I want to be doing at the moment but am currently severely limited with this agonising shoulder and even need help from my hubby to dress - I've got a tea party coming up at the end of this week that I wanted to bake for so I won't go empty handed but with my arm in a sling, not sure how that's going to work!! I've been told this condition is long-term and may not clear up for a couple of years but there's no way I'm submitting to being incapacitated that long - I'm just going to have to learn new ways of doing things!!

    We've got to be feisty, haven't we, and face these things head on and try and get on with life.

    Shoshi

    ReplyDelete

Thank you lots and lots for your fab comments. I read and treasure them all. Ali x