Tag Archives: The Flaky Fashionista

PSORIASIS BLOG: Manchester Psoriasis Shout Out 2

Manchester Psoriasis Shout Out 2

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).

 

Lots Of Highly Trained And Skilled Professionals From Salford Royal Hospital Dance Like Loons Just To Raise Awareness About Psoriasis.
Lots Of Highly Trained And Skilled Professionals From Salford Royal Hospital Dance Like Loons Just To Raise Awareness About Psoriasis.

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.

Links: Manchester Psoriasis Shout Out

See Psoriasis, Look Deeper

The Psoriasis Association

Helen Hanrahan – The Flaky Fashionista

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/

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.

PSORIASIS BLOG : Bits And Bobs (Itches And Scratches?)

BITS AND BOBS (ITCHES AND SCRATCHES)

24th June 2013

Twice this week I have struggled to find a building in a posh part of London: despite my having the address both times I was scuppered beacause the edifices in question had no signage indicating that they were where they were supposed to be. The second was a recording studio where I was doing a voice over, but the first was a big old hotel/conference centre beset with lighting that was only permitted at ankle height and set to muted Electricity-Failing-Due-To-Zombie-Apocalypse low levels. The darkened elevators were augmented by TV screens with images of encroaching clouds – as if to say that the best way to comfort people about being indoors is to artificially create the ambiance that one might get rained on at any moment. All very modern, and very avant-garde, and all the result of some overpaid zeitgeist weaver with loads of outside-of-the-box ideas to brainstorm but very little involvement in the real world inhabited by people who are allergic to nonsense.

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Victoria Fine – She Talks Psoriasence

Anyway, I was there for a psoriasis roundtable convened by Forest Laboratories: they produce psoriasis cream Exorex. It’s a product I neither endorse nor disdain by the way, I mention it simply as a statement of fact. In my experience different creams work differently for different people. They laid on nifty sandwiches (no crusts, different coloured bread – it really is another universe) and a selection of teas and coffees. We didn’t so much as have to sing for our elevensies as talk about psoriasis for a bit. It was chaired by Martin Godfrey who had been a GP but then became a journalist, and he was very welcoming and full of enthusiasm. 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 (put that on your CV Toby!). 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 Psoriasence, who is lumbered with not only the skin problems that this dreadful blight causes, but the accompnaying arthritis too.

We told the assorted medicos of our experiences – much of what was said is the sort of stuff I have blogged about (I actually threw some jokes that I’ve written from here into the conversation as if I’d just thought of them – yes, I’m that desperate for approval). The meeting may result in some interesting initiatives – there’s talk of each of us writing a chapter for an e-book for example, and we’re all going to have a session with a professional photographer to get an image to accompany our writings.

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Helen Hanrahan – The Flaky Fashionista

What struck me the most during our discussions was Helen’s very positive attitude to psoriasis. There we were taking about the psychological impact of the condition and the treatments that have failed us and she said that as a sufferer she wouldn’t want to read about that because she knows it all: she lives with the bloody thing. She wants practical tips. Interestingly, Kate said that in terms of make-up and beauty there were very few; it’s an unattractive condition, difficult to cover up, and that’s that. Helen’s fashion blog takes the opposite approach – she writes about what glamorous clothes you can wear with the disease; a brilliant, positive way of writing that flies in the face of the sort of navel gazing often done it articles about living with a skin condition. Well, if she does gaze at her navel it’s only to see what colour garment would show it in the most flattering light.

All this positivity was coming from someone who is treated in Ireland and so not a beneficiary of the NHS. Her treatment costs her personally. And costs a lot. 48euro per Light Treatment I think she said, and the medicines and creams are very expensive. She once just spent a fortune on going alone on a sunny holiday because it cost as much as the creams she was being prescribed and had the same effect with none of the discomfort. When she broke down her expenditure it was eye watering: I couldn’t afford that kind of outlay which means that without the NHS I would be in agony and of no use to society whatsoever (not that I’m much use now, but you get my drift).

Talking to Helen and Victoria afterwards it struck me that the fact that my healthcare is free isn’t the only reason I should count myself lucky. In this image-obsessed and somewhat misogynist society, I think women with psoriasis are judged more harshly than men. Also, both of the ladies endured far more pain than I, I think. I have been very sore when an outbreak has occurred after a streptococcal throat infection, but my every day, vanilla psoriasis is, although unsightly and flaky, not generally especially painful. Helen has had periods of total deafness because the swinish thing can build up in her ears, whilst Victoria was once wheelchair bound with “huge cracks across my hand like someone had slashed it with a knife”.

Victoria is a very impressive young woman who has turned her plight into something positive – she is clearly very single-minded and able, and has built up her Psoriassence profile to the extent that she now has the ear of the drug companies and was recently a consultant on a Channel 4 programme about psoriasis that will be broadcast soon (I turned down the offer to appear in that, for various reasons – not controversial or exciting – I’ll go into another time). She has seized the condition and decided to take control of it to the extent that it has even become part of her livelihood. She had been a model, and psoriasis essentially put paid to that (told you it was harder for women) and yet she is unbowed, determined and very clued up. Impressive.

Mug
I Love This – A Psoriasis Mug From Psoriasence!

The three of us chatted away, united by the condition yet different in our attitudes to it – Victoria says there is barely a moment that she doesn’t think about it. Helen, on the other hand, tries to give it as little time as possible and is much more interested in sticking two fingers up and getting on with life. And both have managed to produce something worthwhile. Obviously I’m not someone who is at home on the catwalk but Helen’s blog is great, and she’s a terrific character. I asked what inspired her to write and she said that she’d looked online and all the writing about psoriasis was utterly miserable. She read that one in ten sufferers contemplate suicide – “it’s no bloody surprise if that’s all they have to read”. Oh, yes, she’s good value.

You’ll notice I have used the word “sufferer” a few times. That old chestnut raised its head again at the meeting. Do we object to being referred to as suffers? “No, we do suffer sometimes” said Helen. And she’s right: we don’t need to be protected from vocabulary. It was good to meet her, and Victoria, and I’d direct you to their sites:

Helen’s fantasticaly fashionable blog is here. She Tweets @FlakyFashnista.

Victoria’s brilliant Psoriasense website (lots of information about the condition – and merchandise too!) can be found here. She Tweets @Psoriasence.

Kate didn’t join us in the (inevitable) pub, but she can be found online writing about psoriasis here.