Said Simon to the Pieman

I have been meaning to write something about my experience with psoriasis for some time now and, with this being Psoriasis Awareness Week, it seemed like a good reason to do it now. Why do I want to write about it? I guess it’s some kind of release, a way of actually explaining how it has affected me over the years, telling my family and friends the things I have never been able to say in person. Psoriasis makes you want to hide, not just physically, mentally too. Almost as if you’re hiding it from yourself so if you can’t see it, then everything must be okay.

Psoriasis is not a disease or an infection, you can’t catch it from me if I stand too close. It’s a condition where your skin cells grow to quickly. Skin needs moisture and where the skin grows too quickly it becomes dry and this is when it peels and flakes. There are different types of psoriasis and the many sites on the internet can tell you more. It can be a few small patches to full cover of the body.

The first sign of Psoriasis on me came about ten years ago. A small patch appeared on my leg, not much bigger than a 2p coin. MY GP at the time told me to “Put some Savlon on it, there’s not much else we can do”. Thanks Doc that’s really helpful. As it was, not a lot happened, it got a little bigger but hardly noticeably. It used to annoy me, be a bit itchy but I could cope so I dealt with it, shoving some Savlon on it!

About a year passed and I went on a trip to Malta. By this time the psoriasis had spread to both legs with one leg looking fairly bad as the shin area was completely covered. Itching was intense but I was hopeful the sun would do it some good. How wrong was I? The heat was so intense that the sun cream I was using reacted on my skin and sparked off the psoriasis over most of my body. After about the second day I was covering up completely, thinking I had just got burnt at first.

A couple of weeks after getting home I realised this wasn’t sun burn. I stupidly carried on applying savlon though, remembering the words from my previous GP. This is where I started hiding it. Long sleeves at all times, never wearing shorts. I remember I ignored this condition so long it was the following summer before I actually done anything about it. The reason I could take it no longer was that by this time, my arms, legs, back and chest were almost completely covered. The psoriasis had become dry and cracked as I had not been treating it correctly and this also caused it to become infected.

I am not sure how best to describe it. The itching is never ending, so intense that you have to scratch and even when you start to bleed you cannot stop. You feel like you constantly have something crawling over your skin. As my skin became infected it became sore, sore to the point you just want to rip your skin off. The number of times I wished I could be a reptile and just shed my skin! Mind you, it was shedding, every single moment of the day and night. Sleep was nearly impossible by this time and when you’re working long shifts in a bar it makes sleep all the more important.

My moods had become extremely changeable, happy one second and what most people would call depressed the next. I didn’t go out, I would go to work, go home and lay there, trying to sleep, trying not to scratch. I was sure people were looking at me at work. The customers staring at me like I’m some kind of leper. And so paranoia sets in. No more could I take this, I had to do something, especially now my face and scalp were affected so much too. Some of my friends will tell you I am a fairly vain man, not completely, I just like to look good and believe me I didn’t look good at all. It wasn’t just the psoriasis, it was the lack of sleep too.

My self confidence was at it’s lowest, I just wanted to hide away and if I had been weaker I know I would have drunk myself into a stupor every night to just sleep and forget. I can’t remember when I started to talk about it. I know the only people I really talked to were my Mum (funny as an adult, when times are hard, you always need your Mum) and Michala, at the time my fiancé and now my wife. Between them they nagged me into going back to the GP, after all, it wasn’t the same doctor or even the same surgery. So off I went and there couldn’t have been a more different approach and attitude.

Mt GP prescribed penicillin to help with the infection as my skin was not going to get better with any topical treatment until the infection had been removed. Then came the potions, bath oil, extra rich moisturisers, steroid creams. They helped a little, some relief now and then but really I was too far gone for them to have a major effect. I was still peeling at a rate of knots. Oh the peeling, this was horrible, skin just falls off you wherever you are. And waking up each morning is not fun. If you want to know what it’s like, get yourself a large bag of crisps and smash it up, put it in your bed and try to sleep in it. Then there’s the times it’s really bad and I’d been scratching in my sleep so you have little spots of blood on the sheets too. I would almost prefer to have a filling done at the dentist than have to go through that again.

My moods were still changeable, I needed moments of solitude, I was still blocking people out and I knew it. So many times I’d come home from work, run a bath and just sit in it for an hour, not wanting to get out as it was the only relief. My face started to clear though from the medication the GP gave me which make work easier but, looking back, I can see I was in a very dark place. I fully understand how so many people with psoriasis fall into depression. Something I think I only ever told my wife is that those nights, I would sit there, holding my head in my hands, holding back tears of frustration and anger, yes anger. More than anything I was angry that this was happening to me. Sometimes those tears couldn’t be held back. Does that make me less of a man admitting that? Do you know what, back then I would never have admitted it, now I don’t give a damn.

The treatments you get are mostly topical, thick creams, ointments, all very greasy and themselves, very uncomfortable. At times it’s almost a toss up between whether to suffer a day of itching for the relief of not putting any of the gunk and goo on. Slather your body with lard and put some clothes over the top and you may get an idea of how it feels.

It was clear that I needed something more and I was referred to a consultant. Immediately I’m referred again onto the light treatment. If I remember correctly, this is 2 years now since my condition had spread to most of my body. I was still very reclusive though and still didn’t really open up about the distress I was in. The treatment helped although it was tough to start with. Annoyingly, I’m quite sensitive to light so the treatment, at time, was extremely uncomfortable. There were days I had reacted so badly it would make me feel physically sick. The staffs were so good though and made sure I was not burning. I was just getting hot and a few rashes. As the treatment went on, it got better, I could see clear patches of skin again.

8 weeks later I am almost totally clear. Wow, what a feeling, no itching, no scratching, I even wore t-shirt and shorts in public for the first time in over two years. I can brush my hair without bits of skin falling out, I can look in a mirror and not be repelled by my own face, I can go to a friend’s house and not worry about the pile of skin I’m leaving on their carpet.

Since then I have had two more courses of light treatment. It is again uncomfortable but so worth it for the relief I get after. I’ve learned a lot in the years I have lived with this. I’ve learned to fight, stay positive, not to give in. I’ve never had it so bad again as that initial time so whenever I have a bad day I can think back to then and be grateful it’s not as bad. Also I know now it can be relieved, I can do something about it even if not have it cured completely. So everyday, well almost, I still have a routine, creams, moisturisers, bath soak. It’s never ending and I wish,  like most sufferers I’m sure, for the day a permanent cure will be found for this condition.

Ten years ago, psoriasis controlled my life. I’ve taken my life back and I will never let it do that to me again. I have also learned I couldn’t do it alone, I need help, support and, most of all, understanding. There are several people I get that from that I have to mention, my wife, Michala, my Mum and Dad, the GP’s at my local surgery and my consultant and the nurses in the Dermatology department of Broomfield Hospital in Chelmsford. Without their support I truly feel I would not have found my way out of that dark place and psoriasis wouldn’t be the only think I would be suffering from now. My wife had to cope with the worst, like facing my moods head on, cleaning the bedding, having to sleep with this irritable greasy man and the times when I felt so uncomfortable if we were out, I would just say “we have to go now” and she always accepted it without argument.

I am going to give a last mention also to my friends. The people who never said a word, never commented and never stared. The depression, anger and paranoia were all things in my mind and still so clear. Should I forget those feelings? I think not. I want to remember so I make sure I don’t go there again. I have even learnt to laugh about it now. My favourite quite is “Everywhere I go, I leave a bit of me behind.” So Psoriaisis, you don’t scare me anymore and, if you’ll excuse me, I’m off for a scratch.

Addendum 22/10/12: I now have a blog dedicated to my life with Psoriasis and if you’d like to read more, it’s called My Skin and I. Please visit www.myskinandi.wordpress.com

If you want to know more about the condition, maybe you have psoriasis, you know someone with it, you could do a lot worse than to talk to these guys:

 Psoriasis Association www.psoriasis-association.org.uk – A charity that can give you advice and support to people with psoriasis and to their friends and families. A good resource for possible treatments and ways to control your condition.

 Psoriasis Facebook page – A group for people with psoriasis run by people with psoriasis, no doctors, no experts, somewhere to let off steam. Have made some good friends through this group. http://www.facebook.com/home.php?#!/group.php?gid=2204404890

Psoriasis Club – A place where you can talk to other people with psoriasis without getting the usual adverts for wonder cures. Again this is a place for you to talk and discuss, let out some steam when needed and also get tips and advice for free. www.psoriasisclub.org

 Your GP – Talk to your GP and insist on referral if you think it’s needed.