I’m up to all sorts during this year’sPsoriasis Shout Out. I’ll be giving short talks at a couple of seminars in Manchester and London where people far more qualified than I will be on hand to provide credible testimony and scientific insight. I’ll be giving the patient perspective which is basically “Ow. Itch. Bloody Hell.” I might tell a joke though. There’s even talk of me taking part in a fashion show which I seem to have agreed to do without actually agreeing to do it.
I will definitely be doing that on June 19th at an extra XS Malarkey night– it’s a charity gig to coincide with the shout out and all profits will go to the Psoriasis Association. The line-up is damn good – Ben Lawes returns to the club for the first time in a while, and he is joined by John Cooper, the brilliant Newcastle comic who did a one-man show at the Edinburgh Fringe about our sister skin condition, eczema. Topping the bill is simply the best one-liner merchant in the business, the critically acclaimed Gary Delaney who has appeared on 8 Out Of 10 Cats and Mock The Week among many others.
The Shout Out was very successful last time: I got feedback from lots of people who – until they attended – didn’t know (a) much about the condition’s links to mental health problems (b) that there was more treatment available than time consuming and relatively ineffective creams, and (c) that They Are Not Alone. So if you know someone who has it who wants some proper insight into the condition (or wants to demonstrate such insight to their friends and loved ones – equally important) then point them in the direction of the Psoriasis Shout Out website (linked in the first paragraph of this post) for details of what’s going on.
Tickets for the comedy night are £5 and £3 and are only available on the door one the night. The show starts at 8pm.
I fear I am becoming the Psoriasis You Tube Video equivalent of Ian Hyland on talking heads clip shows – ubiquitous, tiresome and not actually that clued up on what I am talking about. But because I have psoriasis and can walk and talk in a straight line I am a useful (and mottled) idiot and of course I am happy to spread awareness as readily as I shed skin.
So I have done three vlogs (blogs on video, geddit?) in order to highlight how psoriasis impacts upon my everyday life. The first one is here. Enjoy.
Hot on the heels of World Psoriasis Day is Psoriasis Awareness Week for those of you for whom a mere 24 hours mulling over the ramifications of dermatological issues is simply child’s play.
Every year at this time the See Psoriasis, Look Deeper campaign looks to highlight a particular aspect of the condition.This year we are trying to spread the word about psoriasis-related arthritis which a lot of people are affected by without them necessarily realising it. If you are a psoriasis patient who has an ache or a pain it could well be related to your condition and there is a lot of help and support out there to enable you to combat it.
Please have a lookhere for a page which has a couple of videos (one with me stuttering my way through it, the other with the far more qualified Dr Sandy McBride who regular readers of this blog will know has had a massively beneficial impact on my understanding of my condition). There is also an animation which is full of useful pointers.
Please pass this information on to anyone you know who might find it useful.
I participated in a video in order to spread a bit of understanding about psoriasis. It covers such subjects as life impact, prospects for clear skin, and what level of discomfort it is acceptable to live with. It’s very well put together I think, and was filmed on a Wednesday recently at the 99 Club in Leicester Square. I also look a bit scruffy for which I apologise: it had been a long day which started with me oversleeping…
(The video is for an international market so apologies for the US spelling…)
The mental health side effects of psoriasis can be quite profound, but treatment is there if you want it. Talk to your GP about it. The post below is extremely anecdotal and subjective because psoriasis treatment is so bespoke. I share it not because I am drawn to the idea of bearing some of my inner frailties because actually the opposite is true. In fact, it scares me a bit – part of me wants to post this but not Tweet about it because then no-one would come here and read it. But that would be to miss the point rather, wouldn’t it? So here you go, have a butcher’s at this. There is more about these issues at the See Psoriasis: Look Deeper website. There is much useful information there.
I have been discharged!
I have been seeing the derma-psychologist Dr Mizara for over four years. I was introduced to her when I was hospitalised with a painful and widespread outbreak of psoriasis after a throat infection. I was on immunosuppressants at the time so instead of a standard flare up I was knocked for six: psoriasis was Chris Gayle and my emotional and physical make up were the hapless and ill-equipped Zimbabwean World Cup cricket XI. Physically I was in a parlous state but mentally I was smacked straight out of the ground. Prior to that I had been doing so well: the medication had meant I’d been bump and crack and flake free for the first time since I was about 20. No pain, no ointments – my surface was flat and my sheets were clean.
(Alright – I’ll stop the cricket analogy now in case you decide to stick your bat into my crease).
I have always been rather dubious of psychoanalysis – not because I judged those who underwent it: whatever helps you, of course. Actually, I am lying. I did judge people. I judge people who share their medical and emotional woes on the internet too. I know! What a hypocrite. I don’t want to be one of those comfortable, middle class people who nods earnestly and bangs on about my councillor helping me through the latest hardships undergone by a relatively healthy white man with a home, a loving family and every episode of Doctor Who on DVD. Pass the bloody tissues.
And you know, I don’t have mental problems. Everybody who knows me would say that I’m a fairly jolly chap – yes, I get grumpy about ridiculous little things but only on stage or in dressing rooms and to hilarious (and sometimes “quite funny – three stars”) effect.
So it was with some trepidation that I went to see Dr Mizara. I’d never been very good in drama classes at that “opening up” stuff. You know, when we have to tap into our emotions and cry about something that happened to us. I’ve cried on stage, sure, found it easy, but crucially, because I was pretending to be someone else. I’m not one for bearing my soul in public (well, unless it is hidden behind the conceit of stand-up comedy – and perhaps we don’t need to get too complicated to work out the implications of that).
The first time I went we just talked – she was assessing me as I was getting acclimatised to the process. I was trying it out though – for it’d been suggested to me that it would help by a consultant whom I respect and I would give anything a go to control this scaly beast. If Dr McBride had told me to daub myself in marmalade and sing the Sailor’s Hornpipe on the roof of St Paul’s Cathedral every third Wednesday of the month I’d have had a crack. I have, in the past, spent a year taking Chinese medicine which is only marginally less ridiculous.
It’s difficult to describe Dr Mizara – considered without being distant, empathic without being touchy-feely, pragmatic without being cold.I guess the thing is, you don’t get to know your psychoanalyst : they’re doing a job, part of which is to know you. I decided early on that there’s no point in lying – a Doctor can’t fix you if you don’t tell them all of the symptoms. So of course when she asks that question “Anything else?” all those little niggles – things that have annoyed you, things that you feel guilty about, things that you don’t understand … come flying out. Total disclosure, even if it seems like it’s something irrelevant (which of course it isn’t).
That process alone has been extremely helpful. It’s a pattern of behaviour common in psoriasis patients – to bottle things up, to feel guilty about being angry about certain things because in the greater scheme they are minor. This is tied into the condition. It’s not life threatening nor is it cancer so we feel a bit burdensome complaining. The psychology of this condition is complex and it manifests itself into all other areas of our lives whether we realise it or not.
I’m my own harshest criticso it was always easy to deliver a litany of Things I’d Done wrong whenever I crossed the threshold of her small office on the first floor of the Royal Free Hospital in Hampstead. And I invariably went out feeling clearer about things : better. On some occasions I simply unburdened myself – on others I had an insight into why I had felt certain things at certain times or why I had reacted to others (and they to me) in certain ways. I cried. I got angry. But largely I tried to work out how to get less upset by this thing, or how to respond better to that one. This may sound daft to you – maybe you don’t spend hours going over conversations you had the night before, trying to spot the moments where you’d given the nice person you were talking to a reason to hate you (they didn’t give any sign they’d hated you, of course, but they still might have done). Maybe you don’t still get really upset about that stranger who said something cruel and thoughtless about the dry patches of skin on your face in 1996. Maybe you think doing that is a colossal waste of time and energy and a very silly thing to do. And you’re right: good on you and carry on not doing it. That’s probably why you’ve never been sent to a psychologist and I have.
I had a terrible year in 2013 – you don’t need to know the exact reasons why. There’s a difference between sharing one’s experiences and doing a humiliating dance dressed only in your dirty laundry. Just take it from me, it was terrible. Worse than the ending of “Lost”. I was a burden then, I know: to friends, to family. And I was in a parlous state. I went to see Dr McBride after one horrible day and she called Dr Mizara immediately and I was given a last minute session with her (she kindly flexed her schedule to accommodate me). When you are at your lowest ebb you expect friends to tell you that you are worth something but you don’t really believe it. When a medical professional tells you this and gives you coping strategies and insights it enables you to take bigger and bolder steps when all you feel like doing is curling up into a ball or drinking all the whisky in England (which I’m aware is probably not the best stuff but weepers aren’t inclined to be choosers). I am indebted to some very good friends for getting me through this period: but without the commendable empathy of those practitioners at the Royal Free I think I would have leant on my long-suffering chums to an even greater and more tedious extent than I did (so Peter, Caimh, Shauno, Dig, Susie, Mum and the rest, I think Dr Mizara and the dermatology team should be top of your list of People You Owe A Drink To For Saving You From Even More Nights Of Repetition And Tears With A Lachrymose Doctor Who Fan).
I have been seeing Dr Mizara less frequently recently.So much in my life has changed. I think when someone works so hard with you there is almost a childlike, puppy dog need to tell them what you have achieved – and in doing so you see how far you have come. “I’ve been going to the gym”, “I haven’t had a drink”, “I’ve written a play!” I’d pant, dropping each metaphorical ball at her feet and waiting to be told I was a good boy. I mean, just as needy but so much better than “Why does nobody love me?”.
Last Thursday’s appointment was a formality – just to see how I was doing. I hadn’t been in for a while. To coin the correct phrase, I have coping strategies in place, for many of those things that used to (and still do) give me grief. I have made progress. Life will still never be easy (it isn’t for anybody), but so long as I can continue to not fixate on the past, to look at things from other people’s perspective and realise that not everything they do is about me, to take less destructive paths, and essentially just chill the fuck out (OK, that last one is mine, but it’s pretty much the gist of it) then maybe I can make this journey tough life – the only one we get folks – a bit less of a perilous ride. It would be ridiculous to go to my grave having spent far more of my time worrying about the bad things that might happen (another psoriasis patient meme) than enjoying the good ones that do.
When she told me that I didn’t need to come back I was a little scared but the biggest emotion I felt was one of massive gratitude. I know it’s her job but what a profession to choose. It’s the equivalent of seeking out that maudlin git in the corner of the pub who keeps whining about the bad things that keep happening to them when it’s clear to you that they just need to stop doing what they are currently doing and then maybe they’d be alright. But I needed help that I never would have asked for and I got it. And when she said goodbye I felt tears leaping from my eyes, and I wasn’t even on stage. Nor was I being someone else.
I was being Toby and, crucially, I actually didn’t mind.
There are patient testimonies about seeing Dr Mizara for a number of skin conditions here.
Dr Mizara talks to the Telegraph about the relationship between the mind and the skin here.
I wanted to to an update in September entitled “Oh f*ck…” because after a year of being pretty clear I went on holiday, to the sun.By the time I came back, I knew that the tiny little flecks of colour on my skin, and the fact that I felt a bit itchy and uncomfortable, meant that my psoriasis was on the march again. I thought it might be useful to chronicle its unwelcome return to my too too unsullied flesh as it happened. But in a way, I felt that might aid it in its campaign to take root on my body again – plus I was a bit depressed about it – so I didn’t. Now, however, I have an approaching deadline for a play I am meant to be writing, so what better time to give you all an update…?
As we know, the sun can really help clear up the skin, so a week of Verona’s beautiful Vitamin E flavoured illumination, plus the resultant relaxation, would only be good.
I had been a bit worried by all the stuff I read in the papers about Doctors prescribing too many antibiotics and how bad that can be.So I asked Dr McBride if perhaps I should give my body a rest. She didn’t really think I should but said that if I was going to it would be safer over the summer when my likelihood of picking up a throat infection would be minimised. What she didn’t tell me to do was give up taking them just before gong on an aeroplane with all its recycled air and close proximity to other people’s germs. But I did. And so I picked up a bit of a streptococcal throat infection and despite the success I have had with my biologics, my arms – and gradually the rest of my body – started showing the tell tales signs of an outbreak. My body temperature also fluctuated and I was extremely agitated by the itchiness that dominoed with goose bumps all over my frame. At one point I thought that these metamorphoses would lead to a spell in hospital, as the last time I’d had a similar resurgence it didn’t abate until it totally wiped me out. I’m used to the odd period where the back of my arms or my elbows and knees have discolouration and dryness, but when the softer skin of the torso or that hardier suff on the back of the hands start showing signs of plaques I know I am in a bit of trouble.
This has been a bit of a bind.Just as there’s an argument that loving and losing is a hell of a lot more painful than never having loved at all, I was perhaps knocked sideways a little because I had started to take a pain free, smooth outer shell for granted. It looked like I was about to be plunged into a revisitation of the dark old days and so I got not a little distressed (which, of course, helps the condition to wage its war). Fortunatley, Doctor McBride wasn’t too concerned, reassuring me as ever that this was normal and that even if it turns out that the biologics aren’t strong enough to help me then there are other options and I mustn’t despair. For now though, the blame is firmly on the sore throat – so back on those antibiotics – and I’m continuing my treatment as before, but with a greater attention to the application of creams and lotions in order to manage this upsurge in plaques.
A couple of months later and I am still covered – but it is not as widespread nor painful as previous major outbreaks.It is a disappointment after such a period of fantastic progress, but it is certainly not as bad as it has been in the past. Everything is relative. I’m mostly stricken on the back of my arms, my knees and the back of my ankles, but it is not too flaky nor is is cracked and raw. I didn’t have to do to hospital and the itching has abated. So while I don’t especially like what I see, I know all too well that I could be feeling a hell of a lot worse.
In the meantime, the other side effect of the holiday is a massive rise in my cholesterol (8.5 having been at a brilliant – for me – 5.2)which is cause for serious concern so I have had to employ the services of a personal trainer and am actively eating and supplementing myself with things specifically designed to make this high figure drop. My blood tests in Decemeber will indicate just how happy a Christmas I will be allowed to have.
Lessons learned– (i) Don’t stop taking prophylactic antibiotics before getting on a plane and (ii) the Italians may well have a relaxed attitude to the consumption of wine and ice cream, but you are not an Italian (iii) it could have been a lot worse.
I had a lovely holiday though. Sun, sea, sand … the scabs didn’t come till later!