Category Archives: Psoriasis Blog

Psoriasis Blog – Updates, Links, Articles and Events

Updates, Links, Articles and Events

 

I have been a bit quiet online of late: apologies, but the outside world needs laughter and no one else in the universe could possibly help (apart from all the other comedians out there, some films, telly programmes and the odd feather).

 

OK then, I’ve been sloppy because frankly time has been flying by. It used to be – when I was a lad (Spangles, Kajagoogoo, affordable housing etc etc) – that Christmas seemed an age away and days at school were yawning chasms until the weekend and fun. Now all of a sudden my infant firstborn is 14 in a month, has hairy armpits and probably swears. What happened there? (That was your life mate, you should have been paying attention).

 

When Worlds Collide... Me With peter Mandleson At The Dermatrust Launch.
When Worlds Collide… Me With Peter Mandleson At The Dermatrust Launch.

So apologies for the brevity but here are some links that are quite useful, I hope. First up – on February 25th I attended this year’s launch of Dermatrust, a vitally important charity which is looking to raise money to help with the treatment of people with skin conditions. At the moment there is a target of £3.4 million to be gathered which will help to fund important research and implement initiatives which could lead to drastic improvements in the lives of dermatology patients. I zipped to London and arrived with minutes to spare in order to be (and I never thought I’d feature this on my CV) Peter Mandleson’s Warm-Up Man!! I hadn’t quite realised that there were many illustrious potential donors there, so sort of bumbled my way through an ill-prepared bit of blather before the man himself gave a much more measured and intelligent talk designed to get them to part with their cash. Did he do a joke about hoovering up dead skin though? I don’t bally well think so!! Eat that House Of Lords! Though not unaware of the faults of our political system I nonetheless think it is quite exciting to rub shoulders with someone present at key decision making and world defining moments in modern history. And to tell more jokes than they did. And he seemed very nice – and having someone heavyweight lending their support to such fund-raising ventures is not to be underestimated. I suspect there wouldn’t have been quite such a turnout had the only non-medical speaker been a man (me) who was once in an episode of Holby City (albeit a man who was once in an episode of Holby City who tells more jokes than everyone else). There is lots to read on the Dermatrust website, and details of the efforts of some non sufferers who have been kind enough to run the marathon in order to raise money (running a marathon is one thing, but can they tell jokes about itchy skin? I think not!).

 

In addition to that, I have contributed to an article which highlights the benefits of treating the mental health ramifications of this pesky condition. It was published in a paper who’s name I do not care to mention (but imagine a curtain twitcher with more certainty than facts and a dubiousness about anything that has occurred since 1955 mixed with a mean spiritedness combined with an unjustified level of moral outrage and you can probably guess the organ to which I refer). Still its health pages are actually pretty detailed but nonetheless I am happier to link to the article here as it doesn’t involve a hit on that particular website. Some may say it’s hypocritical of me to feature in a paper I despise – I disagree. I didn’t profit from the piece in any way, I am simply trying to spread awareness, even if that awareness stretches into a place I wouldn’t want to go myself. There is so much ignorance about (not least in that newspaper) that I am happy to combat it anywhere. Plus Grace, the freelancer who wrote the piece, was very nice and worked hard to do a good job. I was amused that when requested for the photoshoot I was told that the paper had certain rules for their subjects: apparently readers of that paper aren’t to be subjected to people wearing black (it’s a news paper that doesn’t like black – who’d have thunk it?). I also couldn’t be entirely black and white (unlike their reporting). And finally, apparently no-one in that newspaper’s universe wears jeans, so jeans were forbidden on the photoshoot. I wore jeans*. The article (and offending photos – which didn’t make the printed paper itself) is here in case you missed the link earlier in the paragraph because you were still trying to work out which paper I was being oblique about (in which case, you probably read it).

 

Finally, next week there are a load of events in the North between 28th April and 2nd May as past of the Manchester Psoriasis Shout Out. I am taking part in some, you can take part in others. Info, links, videos and a timetable of events can be found here.

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* I know, you’re thinking “What a maverick – he don’t play by no rules. He sticks it to da man”. Indeed I do. Especially when I accidentally lock myself out of my flat and have no choice but to go to the shot in what I’d be wearing all day.

 

PSORIASIS AND MENTAL HEALTH

PSORIASIS AND MENTAL HEALTH

February 28th 2014

I have been banging on about Dr Mizara and derma-psychology without much context, so here are a few words about psoriasis and mental health. Opening this world up to me has been a revelation, and after a lengthy spell under her guidance, I think I have made improvements which help to alleviate the stress and black feelings that often accompany this otherwise marvellous and hilarious condition.

All of the following figures have been thoroughly researched and collated and have come my way via the See Psoriasis, Look Deeper* group on which I sit alongside various experts: 

(i) 1.8 million people in this country have psoriasis, and it affects men and women in equal measure. 

(ii) Of those 1.8 million, 20% are on antI-depressants or something similar (in the interests of full disclosure, I will tell you that I am not among that 20%)

(iii) 32% have problems with alcohol (hmm, I may be close personal friends with at least some of that 32% – we might even holiday together occasionally).

(iv) 33% experience depression and anxiety (I belong to all the best clubs). 

(v) 85% feel annoyed by the condition (no surprise there – an itchy, painful, unsightly thing is found to be annoying: what’s next? 85% of people find Jeremy Clarkson to be a boorish git? Shocker!).

(vi) 20% report rejection and stigmatisation as a result of having it (I’m always being rejected and stigmatised but I tend to blame me for that rather than my psoriasis).

(vii) 10% have contemplated suicide (yes).

Psoriasis treatment needs to look at more than the surface manifestation of the condition. No amount of creams will get to its cause – and if you are sent away with a massive prescription but no examination of your emotional welfare then you are being shortchanged. If your GP regards psoriasis as merely a skin ailment then they are wrong. This isn’t to criticise GPs by the way – in training the average GP barely scratches the surface of dermatology, let alone psoriasis: and as we all know, scratching the surface merely irritates it (ho, ho).

Psoriasis Postcard
The See Psoriasis, Look Deeper campaign asked suffers to write a postcard to their condition. The results are very revealing.

The basics of this are obvious. If you have a blemish people notice : they stare, they react, they recoil. This makes the sufferer self-conscious and creates feelings of low self-esteem. Low self-esteem often leads to lifestyle choices (demotivated regarding exercise, recourse to alcohol, eating crap) which mitigate against successfully tackling the skin problem. These choices can also have side-effects which produce other conditions that have been found to be heavily related to psoriasis (like heart disease and diabetes). And it’s not just the lack of kindness from strangers that is problematic: psoriasis can adversely affect everything from family holiday plans to sexual relationships (“Do you wanna come back to my place, but bear in mind that you may have to hoover yourself afterwards,” is never going to be the chat up line of the century). To be frank, it is there all the time.

And this isn’t about people feeling sorry for themselves and needing to buck up: and tackling it would be financially beneficial in the long run. Society would benefit from psoriasis sufferers not taking as much time off work as they do (up to 26 days a year are lost from patients being unable to work – at its worst it hurts like hell) or being unemployable (your options are limited if your appearance is deemed unpleasant or wrongly assumed to be unhygienic). Unemployment is three times more likely for a psoriasis sufferer than for the scab free – a functioning, tax paying patient whose psoriasis is under control is a much more cost effective member of society. Also, getting to the nub of a patient’s mental health issues will save the NHS money in the long term as other, expensive treatments are needed less.

Psoriasis treatment is time consuming and requires a huge investment from the patient: when I was

The postcards allowed people to express themselves in a number of ways.
The postcards allowed people to express themselves in a number of ways.

having light treatment I was having to commit to three days a week in my box of delights. As a self-employed person I was fortunate enough to be able to wangle this but it was still difficult. For someone who isn’t a professional gobshite and has things to do during the day it must be a nightmare.

For more on See Psoriasis, Look Deeper, go here,* but if you are a psoriasis patient you must not feel bad about bringing up any feelings of anxiety or stress that you may have, as they are very likely linked to your condition. Once this is understood and acted upon, coping strategies can be implemented. For years I feared much of my difficulty with seemingly straightforward Life Issues was because I was a useless twat. Actually it turns out that it was because I had psoriasis.

The fact that I am a useless twat has very little to do with it.

 

*Do follow this link – there’s much more information and a lot of pictures.

Psoriasis Blog – Treatment Update 12

Treatment Update 12

General Notes Dec 2013 – Feb 2014

You never write, you never call.

You’re correct, I haven’t been, even though things have being happening for the undoubted Dermatological Disaster About Town that I am. I’ll update about a couple of events I have been to shortly, but if you’re in Manchester towards the end of April there’s going to be quite a lot going on. At the moment it just says “Psoriasis Thing” in my diary – hopefully more enlightening info will make its way out soon.

Anyway – treatment continues. I’m still coming away with a full bag from the chemists (so may I heavily recommend the yearly £104 prescription pre-pay thingy? It’s saved me a fortune). I still have Pro-Topic for that stubborn bit on my face which lurks under the surface and occasionally sprouts up requiring a quick splurge which sends it packing really quickly. Having had awful, livid, stubborn, painful and embarrassing scales on either side of my nose for most of my 20s when I should have been all young and handsome, I really should remind myself now and again of how miraculous a change this simple application has been (and it was only prescribed once I was seen by Dr McBride at the Royal Free – provking a faith in her which I retain to this day).

2014-01-14 21.40.44 HDR
Bandages and hat to stop Sebco messing up the sheets. Who wouldn’t want to go to bed with that? He smells of coal tar too, you say? Sign up the whole of womankind for that heady combination…

My knees are a little red in places but my arms are the worst. They’re nothing like they were though and a consistent regimen of applying Doublebase moisturiser to my face and arms morning and night keeps me flake free even if I am a little pink when you look closely (but if you are, I’ll be certain to ask you why you’re doing it!). I have a tube of SebCo (I’ve done the “it’s the most Olympian of all the psoriasis ointments” joke already, surely?) which requires a bit of discipline – application to my arms and scalp overnight for a week. I had a go at this last month and it really did help – especially with my persistently dusty scalp. But the tube burst and so when I squeezed it came out of both ends – it’s bad enough having tar smelling goo on my body (I have to wear special bandages and headgear to protect the sheets) but I don’t want it all over the carpet. So I have a new tube which I will squeeze more carefully, but that means I need a week at home really. I don’t want it exploding in my bag.

My bloods in december were the best they have ever been – so good in fact, that Dr McBride had to look them up as they hadn’t (as is normally the case) been sent to her due to all the abhorrences and anomalies they usually contain. Liver function (the one affected by booze) was the healthiest since records (i.e. my Royal Free medical notes) began. You’ll be surprised to learn that I celebrated that good news by having a very convivial Christmas and have continued with indulgence and bad habits ever since. So my next ones will probably be awful (I was too close to my appointment with the last lot so won’t get the results till next time). We’ve been here before haven’t we?

If physically I have been found wanting, mentally things are looking a lot better. Dr Mizara has been great a providing perspective and coping mechanisms so we have started to review the progress I have made under her and to stagger our meetings a bit so I am seeing her with less frequency. I will blog separately about psoriasis and mental health as it deserves a bit of proper explanation.

In the meantime, I am still injecting myself with adalimumab, which I make far too big a deal of apparently. I think I am being all big and brave (I’m stabbing myself and I have a big, scary looking industrial bin thing to put my used needle-pens into) but my better half just guffaws. Still I feel big and brave and imagine its the sort of thing Rambo would wince about if he had to do it. I’ve got the double whammy of Nizoral and Coal Tar shampoo which, like everything else, is a good combo if I am disciplined but an itinerant lifestyle and slapdash nature mean that I occasionally get caught out and regret not wearing beige. So I am not, therefore, convinced that the Dovonex Scalp Application is doing me much cop but I am slapping that on, and sometimes the Exorex Coal Tar lotion as well because it’s better to be belt and braces innit (though in my case it’s Belt, Braces, Safety Pins, Piece Of String Tied Round The Waist and Unpleasant Smelling Industrial Trouser Keeper-Uppers That Have To Be Applied Twice Daily And Still Might Not Keep Your Trousers Up Entirely).

I have taken a course of Erithromycin as I was sunning quite throaty and would have been a bit susceptible to streptococcal throat infection from a long flight and a weekend in an LA hotel, and am now back on the preventative Cefalexyn. I am a bit worried about the fact that I have to keep knocking back antibiotics and must as Dr McBride about it next time. It doesn’t seem natural, but of course a strep throat infection is a trigger for a massive outbreak so I want to be avoiding one of those at all costs.

In summary then – General Synopsis: no pain, occasional dry patches, lots of medicine. Forecast: I need to lose a bit of weight, do some exercise, and be more disciplined with my medication.

Cue David Byrne – “Same as it ever was, same as it ever was”.

Living With Psoriasis

 

Living With Psoriasis

Some time ago I was invited to a round table discussion about psoriasis.

It was convened by Forest Laboratories: they produce psoriasis cream Exorex. The chairman was Martin Godfrey: former GP, now journalist. There were other GPs there, and representatives of Forest Laboratories and the PR firm organising the whole thing, but most of the talking was done by patients who for various reasons have some sort of profile in the world of skin (the dermatological A List!). So as well as me,  they’d gathered Kate Shapland, beauty writer for The Telegraph and psoriasis sufferer for 5 years, Helen Hanrahan (aka blogger The Flaky Fashionista, 15 years stricken) and Victoria Fine from Psoriasense, who is lumbered with not only the skin problems that this dreadful blight causes, but the accompanying arthritis too.

We told the assorted medicos of our experiences and were then asked if we would be interested in sharing our hilarious tales of industrial strength moisturiser, crusty elbows and low self-esteem with the wider public. And the results are up and downloadable as an E-book called living With Psoriasis. It is fascinating to read other people’s experiences, and I think empathy and knowing you are not alone really do give comfort when one feels marooned on a desert island (albeit one where the beach is made of dusty dead skin cells rather than sand). Helen takes a typically gusty, no-nonsense approach and looks at the practicalities of dressing well when cascading detritus does its best to distract from the impressiveness of your wardrobe, whilst Simon Jury’s wife talks about what it is like living with someone who has the condition – something we sufferers could do well to remind ourselves about. There are other chapters too, covering various aspects of the condition through first hand experience.

I recommend this – it comes from a good place and has been put together with great care. Maybe pass it on to someone too shy to talk about their condition but who might like to hear from others:

http://www.exorex.co.uk/ebook/

MISCELLANEOUS UPDATES OF JOY

Miscellaneous Updates Of Joy

13th August 2013

 

A few bits and bobs.

 

My previous entry – which was just letting off steam really – got generally positive repsonses which was a surprise (well, the volume of feedback was anyway). There was the odd person Tweeting who said they had negative experiences of the NHS but didn’t go into detail. I have had similarly grotty encounters, but to me the conclusion from that is that the NHS needs change and support not obliteration. Frustratingly I never ascertained whether the critics had read my blog or just reacted to the positive headline that was being reTweeted. Such necessarily pithy excahnges reward no-one, get nowhere and are ultimately a waste of energy and sadly reflective of the level of discourse we now engage in. “I like the NHS”, “I don’t”, “Oh”. Come back nuance, all is forgiven.

 

2013-07-25 09.38.31
New Publicity Photo Care Of The Exorex Shoot!

Anyway – I am being sent gifts. I have done a consultation for Exorex who have got me to write an E-book chapter for a campaign they are spearheading (I have covered this is previous blogs). They did a photoshoot to publicise this and the results pepper this blog entry. I also got a goody bag of their products. I have not used them yet, because I was also recently contacted online by a lady whose company have launched a cream called Dermalex which she sent me and so I gave that a go as I’d left my other stuff in a different city. Is it any good? No idea, as I am of course taking other things and am not in the habit of making endorsements, but it certainly isn’t uncomfortable and greasy like many creams, and my psoriasis hasn’t exploded nor has my head fallen off, so there are certainly positives (and when someone gives you something it is nice to acknowledge the fact). Fun  though – Hollywood stars get free Rolex wristwatches: I get showerd in unguents and emollients. I’m an A List biological disaster. As well as the chapter, your celebrity leper has also written a piece for a forthcoming Guardian health suppliment : it should be out fairly soon.

 

Which brings me to my latest health check. I am still taking the adalmumab and so have to have regular blood tests … and I resolutely failed the last one. Drinking without due care and attention I think. My liver fat count is at about 147 (it shouldn’t be higher than 61) and my cholesterol is at 8 (highest should be 5). I will have the exact figures later (they’re in a different city along with my creams and, more frustratingly, my headphones!). So this means no more booze till my readings are substantially reduced (which will take a few more months of check-ups and blood tests). The thing is, I have only been drinking at the end of the night (I never do it before work) and I have been going to the gym, exercising at home and dieting. I am a stone overweight and despite laying off cheese and carbs and, oh you know, joy, my belly is still unsighly in its distendedness. I’m even forcing down fruit , vegetable and flaxseed smoothies for breakfast but it isn’t shifitng.

stone
A Stone, Yesterday.
I have one too many of these.

 

Nurse Annie popped in when I was lamenting these various woes and said that abalimumab can slow the metabloism and manifest as a slight paunch in the belly, so that is contributing to my difficulty in getting rid of this stubborn stone. Great: my treatment once again seems to be responsible for something about me that I dislike. So I have to step up the dieting and exercise. And not drink. Remind me, what’s the point in being alive? I’m knocking back a peppermint tea as I type this : oh yeah, feel the buzz. I am at a stage in life where a treat is having a second Ryvita. My disposition therefore, is hardly sunny. I’d kidney punch Bambi for a G & T and a slice of bread (yes, bread, that’s not asking too much is it? Oh, it is). My skin, though, is in pretty good nick.

 

Which provides a timely reminder about the link between psoriasis and mental health (courtesy of the Psoriasis Association ; follow them on Twitter @Psoriasis UK):

http://www.commissioning.gp/news/article/1080/psychological-impact-of-psoriasis-on-patient-should-be-assessed/17/

And here’s the interview I did with the NHS Choices website that seems to be getting a bit of traffic:

http://www.nhs.uk/Livewell/skin/Pages/Psoriasis-case-study-toby.aspx

2013-07-25 10.01.04
Unused From The Exorex Shoot.
This is what I think of my current health status.

PSORIASIS BLOG – Defending The NHS

Warning: whilst this blog is never especially funny, this entry is especially not especially funny. It does have a slight dig at someone from the telly though, in an attempt to prove how hip and relevant I am.

The NHS is getting a lot of gyp at the moment, from the usual suspects. I am sure it is not perfect and I have had bad experiences at its hands, but the critics are hardly agenda free and so I feel compelled to redress the balance in my own humble corner of the internet.

 

Wayne Deakin - excellent Aussie comic and fellow dermatological disaster area
Wayne Deakin – excellent Aussie comic and fellow dermatological disaster area

Having met psoriasis sufferers from  other countries I’ve benefitted from several reminders of just how damned lucky I am to live in this fair isle. Helen – The Flaky Fashionista – is from Ireland as has hand to fork out for every cream and every UV session. The latter were over 40 quid a time – I had to have it three days a week for about three months. I have to tell a lot of jokes to earn that kind of money. Talking of jokes, my fellow comedian Wayne Deakin and I bonded over our shared assignations with this red mistress of the skin – I worked with him this weekend in Liverpool and we compared patches. In Australia he spends about $240 (about £120) a time on tubes of cream to treat an outbreak. You’ve seen the coverage on my body. In his position I’d need to get a bigger boat on which to tell and awful lot of jokes to a group of lottery winners with money to burn.

The most moving encounter I had in this regard was at a Doctor Who convention in Chicago last year when a gentleman left my show – My Stepson Stole My Sonic Screwdriver – because he hadn’t know about its psoriatic content and it messed with his head a bit. He came to apologise (which wasn’t necessary) and told me his story. His partner clearly loved him but there was a lot of pain there for both of them. Whilst she and my wife shared their experiences I listened as he explained how the condition had led to him losing work and so his medical insurance no longer covered him and so he couldn’t treat his severe condition. The doctors under whose care we was under stopped looking after him when he no longer had the requisite resources. And I thought Leah from The Apprentice was as cold a doctor as you could find. As a result this poor fellow was now scarred physically and emotionally and was not in a position to secure much work. A ridiculous, callous self perpetuating situation which left him feeling helpless and in a huge amount of pain.

 

 

The NHS, like the BBC, is generally envied trhoughout the world: those that seek to dismantle either have an alarming agenda.
The NHS, like the BBC, is generally envied trhoughout the world: those that seek to dismantle either have an alarming agenda.

And me, here in the UK? I pay prescription charges – a fraction of the money paid by anyone above for the huge variety of treatments that I have outlined in this blog. I am a self-emplyed itinerant player, the kind of figure I would need to match what my fellow flakies have to fork out is beyond my reach. The extensive and dogged campaign my condition has waged on my skin for the past 25 years would have required a serious finanacial investment, just so I could not endure excruciating pain and emotional shame every day. I’m surely a better citizen when I’m not like that? Had I had to practically bankrupt myself to maintain my treatment I probably would have given up – not because the condition is bearable, but because psoriasis sufferers allow themselves to go through much more than they actually should because what we have isn’t life threatening. For many years I endured an unecessary level of physical and mental discomfort because I thought that was my lot in life – it was only when the specialists at the Royal Free told me that I absolutely didn’t have to live like that that I was made aware that there was much that could be done and treatments which could have an effect I had hitherto only dreamed of (and that I didn’t have to pay for them).

Had that not happened, and had I neglected my treatment for financial comfort, I almost certainly wouldn’t have been able to work, so would have been a drain in the state rather than a taxpaying contributor to it. And to be perfectly honest, the level of agony that would have resulted from a cessation of my treatment, and the anguish that would have accompanied that … I’d have probably topped myself. And I don’t mean that metaphorically.

And that wouldn’t have made anyone laugh.  I know I don’t contribute much to society, but I like to think that my continued presence on this Earth is worth something to some people.

And if that is the case, I have the NHS to thank.