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.
Despite advice from a media savvy friend that one should do so, I’m not the type of person who reTweets anything that praises me. I just reply and say thank you. I am not sure what is to be achieved by yelling out to cyberspace that someone likes your work. It comes across as either needy or narcissistic and I don’t want to be either of those. You wouldn’t go up to somebody in a pub and say “Look, John from Doncaster thinks I rock and @twinkletoes says I’m hot and funny”.*
(*in the interests of full disclosure, those were made up names and comments – NO-ONE has ever Tweeted that I’m hot and funny).
So with that in mind, I post the words below NOT because they say once things about me but because the Manchester Psoriasis Shout Out was designed to highlight to people with this condition that they are not alone and that there are resources and methods that help. From the feedback below, it seems we did our job. So if anyone reading this does feel isolated or at the end of their tether with this horrible condition than please have a look. And then maybe drop me – or some of the groups I will link to underneath -a line.
I present it unedited…
Here’s how I feel about the psoriasis shout out and how it’s effected me since.
I first heard about the shout out back in April through Helen the Flaky Fashionista and Tony [sic] Hadoke. They both had reached out to me some weeks before via twitter when I was at a very low point with my psoriasis. I had searched the hash tag #psoriasis and came across Helen first. We started to chat about various treatments etc, and then she introduced Toby to the conversation. At that point, knowing there were two separate people outside of my family who knew and also suffered from the disease was somewhat comforting. It truly gave me hope, and actually brightened my day. After a few conversations, they both mentioned about the ‘Shout Out’ campaign being run. I knew I had to be a part of it, even by just attending. I was also asked to take part in Helens fashion show and initially I agreed, but soon bottled it as I was scared of standing there and people staring. Looking back, I truly wished I did take part as I’ve since learnt to embrace my P and no be embarrassed any longer. I came to the event at Salford Royal, just as the flash dance started. I immediately felt myself welling up, I couldn’t believe that all these people were getting up and dancing for psoriasis – it was amazing. I went over to the van and spoke to some amazing people. I was slightly overwhelmed, and had a lump in my throat the majority of the afternoon. At this point my P wasn’t as bad as it had been on my arms so I was able to wear short sleeves, but my whole mental state was a mess. I felt low, ugly, angry and quite hateful. All of which slowly went as the afternoon went on. I was introduced to Helen and Toby, and I was slightly nervous. I was nervous because in the few weeks id had spoken to them on twitter, I’d become slightly in awe of their work for raising awareness and the like. I couldn’t get my head round how accepting they both were (to a point) of the P. We sat down and had a chat, and it was nice to just be truly honest about how you feel etc. We also made a few jokes about P and leaving skin around. Which, if you’ve ever suffered from P, you’ll know you need to maintain some level of humour to keep you sane.
Complimentary massages were on offer, Which I heard were fab. But one of the things I was keen to see was the mindfulness session and the talks about the future for P. I went into the mindfulness session with a very open mind – I know my limits and I know sitting there nice and quiet is beyond me. But I did it, and initially I thought this isn’t for me at all. But the weeks after I would say I utilised some parts every now and again. It was wonderful to hear the talks from everyone, it’s lovely that people actually look at P and think I’m going to do something about this. It’s not the most glamorous disease there is after all.
A real highlight of my day was meeting another sufferer called Russ. He’s amazing. He has both P and PSA, but he was still smiling. He read me his poem, I can’t explain how I felt but he hit the nail right on it’s head. Again, I turned into a girl and started crying. It was at that point I told myself to wind my neck in and just accept what is and move on. When I left, I called my mum right away who is also a P sufferer. And she was gutted she couldn’t get the time off work to come. She said that she could hear a change in my voice and said I sounded more brighter then I had in months.
Unfortunately, I’ve since had a flare up and was admitted to the ward. I was on there for two weeks, and it felt like therapy. The nurses ask you upon admittance what’s most important to you? I looked round and most people had put things like go home or get better. Mine was to wear shorts – I’m a girl, and I’ve pretty good legs apart from the scabs. I felt that the admission was the ending I needed to finally accept my P and embrace it as part of me. With the help of all the wonderful staff and patients I feel I’ve done just that. I’ve been out of hospital two weeks now, and the weather is scorching, perfect time to get my legs out in a pair of shorts. Yes I’m flake free for the first time in over 10 years, and it feels amazing.
I truly believe that the Helen, Toby and the shoutout were my turning point and is love to be able to help others out. So sign me up for next years shout out xxx
My thanks to Rebecca for letting me share her feedback.
There’s been quite a build up to the Manchester Psoriasis Shout Out, which is a refreshingly upbeat campaign to get people talking about this most hidden of conditions. For the first time in my life, despite my long association with the city, I set foot inside Manchester town hall on Monday 28th April. I made sure that my larynx was in good shape for this was to be the day that the shout out began.
Earlier there had been a couple of flashmob dances but I absented myself from those of the grounds of an old war wound and the fact that there’s a line (one I won’t be crossing, even with a jig). My contribution to the day (purely verbal, thankfully) came during the Manchester launch of the See Psoriasis, Look Deeper campaign. I have blogged about this before, but since then we have acquired a new tree (the old one fell to bits) upon which to hang the postcards, and this time the Mayor Of Manchester was on hand to add a bit of officially sanctioned bling to proceedings.
Here’s a paraphrased summary of the things that were said and by whom:
Professor Chris Griffiths – Foundation Professor of Dermatology, Faculty of Medical and Human Sciences, Manchester University – This eminent man provided a lot of stats. One in fifty people suffer from psoriasis. You could gather everyone in Manchester with psoriasis and they would fill Old Trafford. On a full tram four people contained within it will have psoriasis (and will therefore be twice as irritable as you are about possibly the least competent transport system since the infamous wax helicopter and jelly bicycle). It affects people’s confidence, employment options, and relationships.
Helen McAteer – Chief Executive, Psoriasis Association – Thanked everyone from the University Of Manchester who had helped with the Shout Out and contributed to research in psoriasis. Research has really developed in recent years. There remains a lack of dedicated services to manage the psychological impact of psoriasis.We need to raise the profile of psoriasis and the impact that it has. We need to listen to patients as they know the impact more than anyone. We are keen to collect people’s experiences. Healthcare has changed since the start of the campaign. We need help building services like those at The Royal Free.
Paul Bristow – Communications Director, Mental Health Foundation – The Mental Health Foundation are a national charity committed to combat mental health issues. They research developing practical solutions to improve mental health services and campaign to reduce stigma and discrimination. We often hear about parity of esteem: it is important that we understand the relationship between mental health and physical health. Psoriasis is a physical health condition but has a major impact on quality of life and thus an inevitable effect on mental health. Plans for the future: continuing to raise awareness, academic research and direct patient support. We wanted to share the evidence from the postcards with doctors, patients and policy makers. Very excited about direct support for patients – helping patients understand their emotions and learn to cope with them better. Booklets documenting this will be released soon.
Dr Sandy McBride – Consultant Dermatologist, Royal Free Hospital – Shared a story about one of her patients who we will call Alan*. Ten years ago Alan checked himself in the mirror once an hour, checked his clothes for detritus, and went to hospital once a week demanding treatment. In terms of socialising he only ever went out to nightclubs because they were dark. His partner was on the verge of leaving him because he was hard to live with (not because of his psoriasis). Last week Alan was happy, he was working, was still with his partner and had an active social life. He still has some psoriasis but he is happy – he underwent 12 sessions with Doctor Mizara and that totally turned his life around. 93% of dermatology units don’t have that level of psychological support under the current system.
Dr Chris Bundy – Senior Lecturer, Behavioural Medicine, University Of Manchester – Is very proud of the campaign. Her research unit are developing a very strong bond with people suffering from psoriasis. In our Western society we overemphasises the importance of physical features. You open any magazine and you see blemish free skin. That is the back drop with which psoriasis patients live their lives. Patients feel judged and people recoil from them thinking that the condition is contagious. These things happen on a daily basis and this affect how patients feel as an individual. Skin conditions rarely escape people’s notice and people make judgements about suffers as a result. People with psoriasis often don’t talk about it and spend time, money and energy hiding their psoriasis. Psoriasis patients talk about shame in a way that those with, say, diabetes do not. There are high levels of anxiety and distress amongst patients. This level of distress is comparable with that found in people with other long term conditions like heart disease and cancer – but people with those get first rate psychological treatment. People with psoriasis have repeatedly not been given access to the treatment they deserve. Those who have had access to these services recover better and quicker and become more productive individuals – back to work quicker and thus contributing to society with labour and tax. Therefore the treatment is cost effective.
Me – Professional Gobshite, No Medical Qualifications Whatsoever – Blah-de-blah, wordplay here, cheap laugh there, self derogatory aside, slight stutter, yaketty-yak. The End.
In relation to some queries about my post about psoriasis and mental health, a couple of you asked how the “1 in 10 psoriasis patients consider suicide” stat compared to that for non-psoriasis sufferers. Well, for those lucky folk it is 1 in 26 or 27 – so quite a marked difference I am sure you would agree.
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).
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.
* 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.
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:
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.
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.
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):