Wednesday, 24 October 2012
Take me for example (I can only speak from my own experience), I've had psoriasis since the age of 4. I'm now almost 36, so that's almost 32 years of having dry, flaky, red, inflamed, itchy skin but I never let it get to me these days. Why? I figure that there are stages of psoriasis, like the stages of grief... You have denial, anger, bargaining (to an extent), depression and acceptance. Like grieving, dealing with any physical "abnormality" comes with these emotions. These take time to work through and not everyone manages to get past the depression stage to acceptance.
Looking back on my life I can't honestly say I was ever in denial about having psoriasis (I was too young to understand really) but I know a few with the condition who for years maintained they just had "dry skin" before they were eventually diagnosed. Then again, I hear daily from patients with psoriasis who still think they can be cured, that somehow their psoriasis will miraculously disappear overnight when they try the umpteenth treatment, only to be disappointed again. I can say with 100% certainty that I have had phases in my life where I got VERY angry about having psoriasis... The "Why me?" question has passed my lips many, many times over the years. I've bargained... Not to any deity in particular, just any one who happened to be listening, obviously that didn't cure my skin!!
Depression seems to be the point where people get stuck... they switch between hope that a treatment will work, and when that fails they become depressed and disheartened. As I said before, I did the angry and sad thing not really the depression.... I never really hid myself away, although I did cover up most of the time.
It's acceptance that has me scratching my head (not literally or there would be white flakes everywhere) about how you get to this state of being. It would seem that the younger you are when diagnosed the more likely you are to reach this stage. I know a few psoriasis survivors who have been diagnosed as adults who have achieved acceptance of their condition but the majority of people I know at this stage are, like me, those diagnosed as young children. Those diagnosed as adults or teens seem less likely to accept their condition and are the ones who need the support of mental health professionals and support groups. It would be interesting to see if there are any papers out there on research into age of onset vs. acceptance of psoriasis. If not maybe I should re-train and do a study on it.
I don't know how many people actually read this blog, or if anyone is actually on the same wavelength as me. Most other blogs I have read have been quite negative regarding psoriasis and psoriatic arthritis but I guess had I written this maybe a decade or two ago I would have been where they are now.
Sunday, 14 October 2012
This time last year I was running round like a blue arsed fly finalising my wedding preparations. I was also beginning to struggle with stiffness and pain in my hand and wrists. I put it down to stress and lack of sleep on the build up to our wedding day and carried on taking my Naproxen and the occassional paracetamol while working my butt off in the lab.
I figured the stiffness would ease off after the stress of the wedding was over but gradually the pain and stiffness got worse. By February this year (2012) I couldn't go on. I went into work one morning with the intention of getting an early start in the lab and setting up a very urgent experiment only to find that I couldn't grip a pen without being in excruciating pain. My neck, back, wrists and fingers were screaming in agony at the slightest movement. In tears I told my boss I had to go home and left.
My GP was great, I got an emergency appointment and he signed me off work for the week with instructions to rest my hands and wrists and he also sent a letter to the local rheumatology department to get me an appointment.
I followed the instructions of my GP and felt I was well enough to return to work after a week off. How wrong was I?? After 2/3 weeks I was in so much pain it wasn't funny. I struggled to hold a mug of tea or a pen, let alone cell culture flasks, pipettes and microbiological cultures. I went back to my GP and he decided it would be best to sign me off until I saw the Rheumatologist.... IN MAY!!
March onwards is still a blur to me... I was on such strong painkillers that I sat in my pj's most of the time and stared at the tv like a zombie. I tried my hardest to keep up with the housework, cook meals and keep myself busy but it was all too much. I was exhausted all the time, the Tramadol that I had to take every 4 hours made me flaky, gave me horrendous constipation, brought my skin out in spots, and generally wiped me out. As if all this wasn't bad enough I was also dealing with pending redundancy. Guess a lesser person would have been depressed and maybe even suicidal but not me. I took up jewellery making to keep my hands active in an effort to stop them from seizing, I went for long walks (in my lucid moments) with my dogs and I generally tried to keep everything as normal as possible.
I was made redundant just 2 weeks before seeing the rheumatologist.
Since June (took a while for letter from rheumy to get to my GP) I have been taking 10 mg of Methotrexate on a weekly basis. That's 4 months under my belt now. Initially I noticed a decrease in the stiffness in my joints after a couple of weeks. There was still some pain there but that began to ease off by the 1 month point. At this time I was still taking 500 mg of Naproxen twice a day and on my review appointment with my GP I told her I would rather take the NSAIDs than increase the dose of MTX unless I really had to. She agreed, MTX can have some particularly bad side effects and we would both rather minimise those risks.
In September I did something I haven't done in a long time... I forgot to take my NSAIDs for a day... Imagine my surprise when I realised that although I hadn't taken them I had no pain or inflammation in my hands and wrists. That was the day I decided to just let the MTX go it alone. One month on and I feel as if there has never been an issue with my joints. I have full motion in my hands with no pain, swelling or stiffness.
My blood tests are all coming back clear... No drop in RBC count, no elevated White cell count and no Liver enzyme issues. The only side effects I appear to be having with the MTX is that I now contantly run warm (was always cold before) and, because I take it on a Friday, generally feel quite tired on a Sunday.... When that's all said and done though I can live with those side effects!
Tuesday, 14 August 2012
Social isolation, low self esteem and poor body image can have shattering consequences for those who suffer with psoriasis. It is well known that social isolation leads to depression, self harm and in the worst cases, suicide.
Over my lifetime with psoriasis I can't say I've had an easy time of it but I am mature enough now to realise and appreciate that if I hadn't been bullied at a child for my skin condition it would have been because I was smart, my social class or any number of other factors that was different. The skin was the most obvious, visual, thing about me.
When I read articles and blogs about the psychological effects of psoriasis I can't help but wonder a few things... Firstly, how long have these people had psoriasis? If not long the I can understand the anger and depression process. Secondly, how old are they? Teens and sub 50's with psoriasis seem to struggle more psychologically with psoriasis. Thirdly, what sex are they? Females are bombarded with images of the "perfect" body every day so I guess that has to play a major part in the development of low self-esteem.
Finally... And this is the biggie... Am I just a freak in that I have never been negatively impacted psychologically by having psoriasis... I never say I suffer, I live with it. I don't hide it away from anyone and wear what I like when I like... Does this relate to the length of time I have lived with psoriasis? It's been all I have ever really known.....
I often think of passing these thoughts and opinions on to the psoriasis association here in the UK but my story is not the kind of story they are looking for.
Friday, 22 June 2012
It started off fairly innocent enough. I began to find that after doing my skating, martial arts or running that my hips and knees seemed stiff and slightly swollen... I just thought that I had been overdoing everything and that I needed to slow the pace a little. I cut back on the skating and the running but kept up with my Tukido classes. This seemed to help and the joint stiffness in my legs eased off, for a while...
On and off over the next few years my hips and knees would become stiff, painful and swollen... At first I just took some pain killers and ibuprofen for the pain and got on with it. When I reached the age of 19 I spoke to my GP who suggested it was just growing pains....
After having my daughter at 23 I began to get the swelling and pain more often. By this time I had been taking ibuprofen daily to help control inflammation and paracetamol to control the jarring pain... My knees had started to grind when I was walking and my hips would sometimes lock into position causing the most horrendous stabbing pain when I moved. I had just moved GP's and made an appointment to see if they could help.
This time the GP took a look at my notes and suggested I had psoriatic arthritis. I was immediately put on relifex and headed home. The side effects of the relifex were awful... I started suffering the most horrendous IBS, was tired all the time and felt nauseous at the slightest mention of food. Back to the GP and onto diclofenac... He also referred me to the rheumatology clinic at the local hospital. The Diclofenac helped for a while, but my body seemed to adapt to it and it stopped being of any use. After speaking to my GP we decided to go back to Ibuprofen.
Cue my first appointment with rheumatology.... The specialist had a chat with me, looked at and manipulated my joints and pronounced there was nothing wrong with them!!
Between that appointment and 2009 I dealt solely with my GP. He was fantastic. He was annoyed that the specialist hadn't confirmed that I had arthritis and worked with me to go through the different anti-inflammatory medications and pain relief medications I could try to give me some relief. Once we had tried them all he sent me back to rheumatology... Guess what?? Yup!! Once again the conclusion was that there was nothing wrong with my joints!
In 2010 I had had some UVB therapy for my psoriasis which was great... my skin cleared up completely for 3 months... I went from almost 80% skin coverage to <1% coverage in 12 weeks of treatments.... That's when things started to get really weird... I was finding that I had a lot of pain and swelling in two of the toes on my right foot.. It was difficult to walk but I would struggle through. The swelling caused problems in that my shoes were all quite tight on my foot and there would be a lot of rubbing against the roof of my shoe.
By the end of 2010 my toes had deformed and could not be straightened even when forced... The joint nearest the knuckle was completely fused...
2011 was a huge year... I moved to a new home and had a wedding to prepare.. my dermatologist recommended a second course of UVB for my skin so that it was clear for my wedding day... I jumped at the chance.
As I progressed with the UVB I noticed that I was starting to get the feelings that I had had in my feet in both of my hands and wrists... I found I had reduced mobility and lifting was becoming uncomfortable. By the end of 2011 I was in constant pain and my hands were horribly swollen. Over the next 2 - 3 months I was put on every anti-inflammatory possible and every pain killer my GP could prescribe. I was signed off work for 2.5 months as I dealt with the side effects from the drugs and from the pain, things that I believe worked against me when there were project cuts at my place of work.
After spending 3 months feeling like a zombie I finally got another rheumatology appointment. This time I was seen by the consultant specialist.. He took my history, looked at my joints and performed an ultrasound on my hands and wrists. Both he and the trainee doctor were horrified at the amount of inflammation and fluid surrounding not only my joints but also my tendons. His reaction was immediate!!
A couple of steroid injections to help until I could start taking Methotrexate (after liver function & full blood count tests and a barrage of xrays) and I had a confirmed diagnosis of Psoriatic Arthritis... Only 20 years after first having symptoms!!
The injections helped long enough for me to function until the all clear came through and I started my first dose of MTX. I still take my naproxen but after the initial dose of MTX I find they kick in sooner.
The rapid deterioration of my joints got me wondering, did having the UVB therapy in some way contribute to a worsening of my arthritis? After all, Psoriasis/Psoriatic arthritis are caused by an auto-immune response where the TH-1 cells do not recognise cells of our own bodies as friendly and attack them... Did the reduction in my inflammatory skin condition cause the internalisation of the auto-immune disease? They had no skin patches to attack but the joints were free from the UVB radiation and therefore cytokine storm involved in inflammation would have been stronger there.
Something for me to research I think... Would love to hear about the experiences of others out there.
So, in a nutshell, after 20 years a 10 minute appointment has changed my life.. Sadly most laboratories will not employ someone who is classed as "immunocompromised" due to an increased infection risk so I have had to re-evaluate my career... I have decided to head back to my prior career in accounts and study towards becoming a chartered accountant. I'll still keep up to date with scientific breakthroughs and research, just not from the inside!!
Wednesday, 30 May 2012
As an adult I have been lucky to be confident enough in my extra skin to have never felt depressed or socially isolated because of it. Growing up with the condition and having a very supportive family have helped me to realise that, even when I was being bullied, it was because of the lack of education that others had about psoriasis rather than anything I had done. I know there are many other people out there who do deal with depression and feelings of isolation on a daily basis because of their psoriasis and I wish there wasn't. Not everyone feels comfortable showing off their extra layers of skin to the world and I can completely understand that but I can say from the bottom of my heart that doing so doesn't really make much difference to most adults out there.
Since I left home at the age of 17 to go to university I have never once hidden the fact that I have psoriasis. At times my skin has been so bad that I had maybe about 20% of my total body surface free of plaques but I would still get my splotchy "milk bottle" arms and legs out in the summer sun. The sun is good for treating psoriasis so covering up is not only uncomfortable on really hot sunny days but also the wrong thing to do. It took me being in a completely different area of the country to find this confidence and it all stemmed from a conversation with a really cute male student in my halls of residence... He later became a boyfriend but we lost touch when he left to go to another university.
The conversation revolved around why I was always in cardigans and jumpers on what were really unusually warm autumn days in the north of Scotland. When I said it was because I was embarrassed to show my arms because of my psoriasis his first request was to see them and then his first question after that was "What causes it?"... That very first conversation with someone about why my skin looks patchy, red and flaky was a real eye opener. Almost overnight my attitude changed. I had spent so long being ridiculed for having psoriasis that this first encounter with someone who wanted to learn more changed my outlook and attitude completely. That was the day I started wearing my patches with pride.
All these years later I have had a few relationships and now have a loving husband and a darling daughter who never notice my skin is different from theirs... My daughter thought it strange that people didn't have psoriasis when she was younger, my skin being what she had always thought was "normal". I have many close friends who don't seem to notice either, or if they have they have asked me to educate them about it.
I won't lie, I have had many treatments over the years to try to clear my skin and make it less painful. I still use dovonex and also dovobet but I have had pUVA and UVB therapy and more coal tar treatments in hospital over the past few years. The UVB worked amazingly, my skin cleared completely but sadly 3 months post treatment it came back. The second round was not as effective as the first and now I have lovely, densely freckled areas on my arms and legs where the largest patches of psoriasis were.
The UVB therapy helped me in that it reduced the coverage of my psoriasis to a level that is manageable with topical ointments. At one point I was having to use dovonex every 2 days so as not to use more than 100g in a week my skin was so badly covered. Now 60g of dovonex will last me up to 4 or 5 weeks.
Studying for a degree in Microbiology has given me great background to read through scientific papers that cover research being carried out into the causes and treatments of psoriasis and psoriatic arthritis and I use this to help educate my friends and family (or anyone else who happens to ask me about my skin) about the condition. I would truly love to be able to educate people more, I know that there are still young kids out there who are going through the kind of childhood I had and teenagers struggling with socially defined beauty standards set to unattainable levels by magazines, pop stars and movie stars and while I am no model I'd love to do a "How to look good naked" type event with Gok Wan, just to show people that there's nothing wrong with having psoriasis.
I have one more blog entry to write about my life (so far) with Pso and PsA and that's about my 20 year battle to get diagnosis and treatment for psoriatic arthritis. After that I plan on going into some depth about the underlying causes and biological processes that lead to both of these conditions. The research for this will take quite a bit of time but I am aiming to have at least 2 posts a month on here.
Tuesday, 15 May 2012
A couple of weeks later I couldn't stop scratching at the area I had bumped and my mum noticed that my clothes seemed to have dandruff flakes on them. She had a look at my scalp and decided to make a doctors appointment for me. My mum was well aware of psoriasis, my maternal grandmother had the condition, so she knew what she was seeing instantly.
My GP was really good. It was confirmed that I had scalp psoriasis and he gave me special shampoo and lotions to use on my scalp and hopefully keep it relatively calm. The shampoo and lotions smelled absolutely vile.. they were all coal tar based and I swear you could smell me coming way before you could see me but they helped to keep the flakiness and itching under control, for a while.
For the majority of my childhood years the psoriasis was confined mainly to my scalp. Thankfully it was hidden by my hair and only really became an issue when it was itchy or flaky. Then around age 10 things began to change. My body began to undergo the early stages of puberty and my hormones started to kick in... sadly this was the last time I ever remember having completely psoriasis free skin. The scalp psoriasis started to creep forward past my hair line, appearing on my upper forehead, behind my ears and at the nape of my neck. I could hide this by keeping my hair down and having a fringe but I couldn't quite do the same when it started to appear on my body.
By age 11 I had patches of psoriasis on my arms, stomach and back. They were fairly small patches but they were there and very noticeable, not only to me but also to the kids I went to school with. Queue the name calling and nasty comments... The most common names I was called were flake, scabby, scar, and snowflake.... As hard as my GP and I tried there just seemed to be no way to make the patches smaller, less red, less flaky or to go away... I worked my way through creams, lotions, bath and shower emollients and moisturisers but nothing seemed to have any effect. I spent every night coated in coal tar creams, my pyjamas lasting a month or two before they had to be thrown out and replaced because they had become so badly stained and coated with coal tar. I walked around in a cloud of coal tar, not only from the creams but also the shampoo and bath emollients that I had to use daily. My skin took on a brownish colour from the treatments and I looked like I was constantly filthy. Hospital treatment came next and despite being covered in coal tar, wrapped in clingfilm and many other unpleasant smelling and uncomfortable treatments absolutely nothing helped to clear up my skin.
The name calling got more common. I was treated as if I had a contagious disease by most of my classmates, even people who had been considered some of my best friends started to treat me differently. Thankfully I had a couple of very good friends who didn't change their attitudes to me and I am happy to say they are still friends to this day (thanks Vicky and Davina). I even began to notice that adults would look at me with repulsion when I wore t-shirts or tied my hair back on summer days. This is when I started to become more insular and less outgoing. I took to reading books and spending time playing alone in my garden and on the street I lived in. I would try to avoid situations where I had to mix with people I didn't know and I would try to avoid the looks of disgust and pity from those around me. One thing I couldn't avoid though was school and the nasty, spiteful comments that were made about and to me on a daily basis.
Looking back I am surprised I survived those last couple of years of primary school. I learned a very valuable lesson back then that I only acknowledged when I grew up.. The kids at school were mean to me, that is something that could not be denied, but they didn't know any better... they had no comprehension of the hurt they were causing with the name calling and the way they excluded me socially but the adults were a different matter all together. They may not have called me names but the way they acted towards me at what was a very vulnerable and important stage in my social development was disgusting. They should have known what effects their attitude would have on a young child, but then again, unless you have a disfigurement you have no idea what it feels like to be different so I suppose they can't be blamed for their inability to show compassion or to show their kids how not to behave.
These early years were instrumental in my becoming the person I am today. My love of reading stems from those times where I wanted to escape the ridicule, this is where my love of role play gaming came from because for a small period of time I could be someone, anyone else and live for a while with perfect skin and perfect looks.... These years are also the reason I became so involved in amateur theatre as a teenager, again I could be someone else and not myself.
Without the bullying and name calling I wouldn't have the interests I have, I spent time reading and learning rather than out playing with other kids and as a result I have grown up to become an intelligent woman. I concentrated on being the best I could be at everything I did so that my looks wouldn't get in the way of my career/employment and I have the bullies to thank for helping me get where I am today. Had they not treated me with the contempt that they did I would not have worked so hard to "show them" and would probably be stuck in the same dead end hole a lot of them are still in to this day.
I know there are many people out there who have just embarked on their journey with psoriasis, they are where I was at age 4 - 11, afraid to socialise, hiding their skin condition away under long sleeves and trousers, and my heart goes out to them. I know how hard it can be to be a teenager and to try and fit in while being so different from everyone else. I know how hard it is to be an adult in the workplace and trying to not have your skin condition noticed by colleagues. I also know that each individual has to make the journey to acceptance of their condition on their own but I would like to offer support from one who has accepted their lot to many others who are working on it and hope that my writing about my experiences will give hope to others who are struggling to live and survive with psoriasis.