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.
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.
It was World Psoriasis Day on Thursday 29th October. I was supposed to be in London helping my dear friend Peter to move house. The least I could do after he gave me sanctuary for a very long time. At the last minute, however, I was asked if I could wend my way back to Manchester in order to feast with the dawn chorus and appear on BBC Breakfast to give the patient’s perspective on the condition. Dr Christine Bundy with whom I sit on the See Psoriasis, Look Deeper campaign was there to say all the clever stuff, thankfully. She is a senior lecturer on Behavioural Medicine at the University of Manchester (and, as it happens, was on Any Answers this week too, as I discovered when I listened to the podcast a couple of days later) .
I do look a little tired (and bloated) from over-indulging on white bread and white wine in Germany the previous weekend but hopefully I provide some reasonable insight. Our chat is preceded by a very interesting and candid film which I also include in the video below:
Thanks to Dom Robinson for recording the piece and to Peter Crocker for forgiving my last minute withdrawal of labour (another thing to go on a very long list).
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…)
I’ve been a bit quiet on the old psoriasis front lately but it’s still there, lingering. I actually noticed that my arms aren’t in the greatest of shape yesterday when I went to Maidstone and the offices of Abbvie in order to talk to some nurses from all over the country about being a self-medicator. It was a 9 hour round trip but worth it I hope, even if the lady at reception was one of those people who regularly occur on my life who sees fit to correct me when I tell them my name: “Hadoke” I said, pronouncing it accurately. “Haddokey,” she replied as she read from her list, presumably thinking that I’ve got to 41 without knowing what I’m actually called. I mean, I know it’s a silly name and one that doesn’t sound how it is spelt but you’d think if anyone had the key that unlocked the secrets to its pronunciation it’d be me.
Anyway, the disparate group of nurses were speaking to patients with various ailments and I was there to explain my injections, how I administer them, how I feel about them, how I remember to do them, and my thoughts in general about my condition. All of those things have been well rehearsed here so I won’t repeat myself but an analogy that I came up with went down well and seemed useful. I emphasised that psoriasis isn’t so much a skin condition as an auto- immune problem and that when I get a sore throat it is a bit like a building detecting smoke – the alarms and sprinklers and everything go off everywhere no matter where the fire is. This is a similar reaction to when my skin goes into overdrive when my throat has a problem – my immune system isn’t targeting the throats, so my skin over repairs itself necessarily. Those of you with properly functioning immune systems get a more efficient response.
As for my progress, I’m still on Adalimumab every two weeks, with a vitamin D booster and the usual mixture of shampoos and scalp application for my head (still dusty unless I’m really on it) and Pro-Topic for my face (which is keeping it in check very nicely). I have been exercising and trying to limit alcohol with varying degrees of success (“Yay, I’ve had two weeks off the booze – why don’t I celebrate with a swimming pool full of wine and a bucket of gin?”). My arms are a bit itchy and slightly worrying even though my last check up (and bloods) were very positive. It never quite lets you relax this thing, but I’m not letting it get in my way.
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!