Category Archives: Psoriasis Blog

PSORIASIS SHOUT OUT 2016

PSORIASIS SHOUT OUT 2016

a7821f03887f0e7fbb64e1e8758bee74I’m up to all sorts during this year’s Psoriasis 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.

More details at the XS Malarkey website.

The Psoriasis Shout Out is 18th-24th June.

 

PSORIASIS VLOG 1

PSORIASIS VLOG 1

Screen Shot 2015-11-20 at 15.14.13I 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.

 

Psoriasis Awareness Week Videos

PSORIASIS AWARENESS WEEK

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.

SSLD_logo_smallEvery 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 look here 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.

World Psoriasis Day

WORLD PSORIASIS DAY

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).

PSORIASIS BLOG : PUTTING PSORIASIS CENTRE STAGE

PUTTING PSORIASIS CENTRE STAGE

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…)

PSORIASIS BLOG: Nurse Training And Not Complaining

CATCH UP

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.

My arm, yesterday. File under:  Clever, Not Looking Too.
My arm, yesterday. File under:
Clever, Not Looking Too.

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.