PSORIASIS BLOG – Sunny Misposition

9th October 2012 Part Two

Slightly out of date but I’ve dithered.

DISCLAIMER: If you here for laughs (of which I only aim to provide the mildest), maybe check out some of the earlier entries before this one.

At my last appointment, and in the interests of full disclosure, I had to share with Dr McBride (and therefore do so now with the half dozen of you that read this) that my spirits have not been especially high recently. I do this not for sympathy but because I am trying to fully understand the link between mental health and my condition, and as I am part of an initiative to raise awareness of this (the See Psoriasis: Look Deeper campaign) I will have to be honest about it. There’s a possibility that acitretin can cause depression, but without going into specifics, I think that that is unlikely in my case. We talked about the mental framework of psoriasis patients. Apparently, that subconscious fear that the condition might break out at any moment affects the way we anticipate things. It is not unusual for a psoriasis sufferer to have higher states of anxiety than other, less mottled people. Dr McBride couches this state as an “anticipation of doom”. The way in which we psoriasis sufferers think is different due to the fact that we internalise our fears about a recurrence of the disease (for we are never truly free of it – the dermatological equivalent of the Daleks, it can only ever be kept at bay, not wholly defeated). Much of this is down to learnt emotion: the things we fear are thoughts not actuality. You know the sort of thing – worrying that you’ve left the oven on, fearing you will die on your arse at every gig (maybe that’s specific to me), abject terror that Boris Johnson will end up as Prime Minister (alright, I’m not alone in that one, and it also may have nothing to do with psoriasis and everything to do with having the scantest interest in a positive future for mankind). But anticipatory fear – with which I wrack myself all too consistently – can be traced to my mental attitude to my disease.

 

There you go – clowns are funny. Take a break, smile at the clown, and then dive back in to the angst-ridden text.

I fret about simple things like train journeys and am terrified of phoning people lest I be calling at an inconvenient time or they simply want me to fuck off. Now, these psychological somersaults aren’t the sole province of psoriasis sufferers, but they are examples of behaviour and the cognitive dysfunction of those of us in the cult of the crusty.

One of the reasons I am seeing Dr Mazara is to try to come to terms with the fact that much of what I worry about is abstraction rather than reality. I also need reassurance that the fact that I do fret and worry and suffer from depression isn’t simply self-indulgence (my biggest fear of them all – being thought self-indulgent; a trait I despise). The entire approach being taken to my condition by the experts is to establish that there are sound medical reasons for the way that I feel. It’s a frustrating area: my worry about a recurrence of psoriasis leads to stress, stress exacerbates the psoriasis, the resurgence of the rash exacerbates stress, and so I have two insatiable beasts feeding themselves off each other and having the discourtesy to do so in my brain and body, the inconsiderate sods.

Physically though, I’m in as good shape as I have been since I scored the winning runs for England at Lords’. Sadly, that was in a dream, but I was pretty fit in it, and got comparably so in reality thanks to the physical regimen I stuck to in Edinburgh. Compared to the shambolic, overweight, blotchy man who first shuffled into Dr McBride’s view I am now in a sustained period of remission from those stubborn body-wide plaques and am at a pretty steady 12 stone (could do with losing another half stone to be totally perky, but as a default it’s a hell of a lot better than I am used to). Largely thanks to my wife’s encouragement in such matters I eat better, have a genuinely more positive and proactive attitude to my physical well-being and spent the first half of the year totally alcohol free. To the naked eye I have a healthier colour and more sparkle. “If you were a dog you’d have a nice wet nose,” is how Dr McBride puts it.  I’d also bite children and dry hump a kitchen table leg, but I didn’t tell her that.

But … I am still not well.

The fact that my arms are a little more affected than they were six weeks ago is explicable and not too alarming, and I even came out of my hospital visit feeling much better about the fact that … the fact that I don’t feel much better. And I am not a maudlin whinger – as someone who spends most of his time amongst, and attempting to generate, laughter I think I get a pass on the whole “oh, poor me” brush that depressives can be tarred with. As I type this I’m in two minds about whether to publish it or not, because I am wary of the cult of narcissism that the internet promotes, of self indulgence, and of people who think that things get them down more than they do anybody else. I don’t know how I feel compared to everybody else because I have no idea how everybody else feels. But I know when the blackness descends it is very difficult to motivate myself to do anything. I know I shut down a bit when contemplating awkward situations. I know I stay up to the early hours drinking just so that I get access to those emotions that I generally keep under wraps because I – like most psoriasis sufferers – am used to internalising misery (and physical pain) just so that I can function of a day to day basis. I know that I find myself mired in indolence. I know I feel unable to get enthused about anything and in a state of anxiety about the simplest things like anticipating a train journey. I know I replay conversations, fretting that the way that person X said “hello”/”goodbye”/”when’s the bus due” means that they hate me and think I am an idiot.

This all may well be a very complex and self-absorbed way of saying I’m so lazy my brain has to come up with all sorts of reasons for not doing anything, so that I can then justify them to myself in medical terms rather than admit that I am just a boring, apathetic narcissist. I don’t know, but the two medical professionals I see haven’t laughed me out of the room (I’ve never actually be laughed out of a room – I have been un-laughed out of a room, and that’s bad enough). In fact, the major breakthrough with all of this is that everything I don’t like about my behaviour has been identified and explained by Dr Mazara, and that knowledge brings understanding, understanding brings strength, and strength creates the ability to do something about it. Let’s see eh? I’m game. And if any of this sounds like awful motivational speak then yes, I probably would have thought the same 12 months ago – but it has helped. It really has.

So there we go, that’s how I am today. I am very lucky that my consultant is someone who has made it her mission to create bespoke treatment for psoriasis that takes the patient’s emotions and personality into account as much as their genes and cells. And that I feel able to speak to her about it. So I thought I’d tell you too, just in case it helps. It may just be that you’ll think I’m a dick, but do you know what, my personality is such that I’d assume that’s what you were thinking anyway, so what have I got to lose?

There we go – that blog was awkward, potentially embarrassing and quite painful to endure, but what the hell, I’ve done Christmas gigs at Opus …

8 thoughts on “PSORIASIS BLOG – Sunny Misposition”

  1. Sometimes half the battle, perhaps the whole battle, is just having the guts to say this sort of thing ‘out loud’. That way you face it and, after it fails to kill you, never seems quite so scary again.

  2. Wonderful, brave post. It brings back memories of twenty years ago when I suffered from acute (and very weepy) eczema on my face, particularly around my eyes. Similarly, I wasn’t in a good place in myself generally and I’ve no doubt that it became a vicious circle, with the self-consciousness of how awful it looked perpetuating the condition. It’s great that you’re sharing your experiences and it’ll be a great help to others in a similar position.

  3. I found this post, which I came to via Paul Scoones’ Twitter account, very interesting and thought-provoking.

    Thank you for posting it.

  4. The fact that you expressed these surprisingly widespread feelings and fears in your blog is thoroughly commendable.

    The fact that you expressed them so well is a small part of the reason why I, for one, am always so delighted to hear from you via any medium and at any time of the day. I suspect I’m part of an overwhelming majority in that.

  5. I involved with psoriasis from 1961 when I met my future wife. She had plaque p in seriouse form from her 9 yo to her 34 yo. It is not depends that we have slightly more then 20 yo and without any experience, we understood all useless to go at that exclusive circle: doctors, clinics, pharmacies. Blind alley! We began to seek medicine ourselves and that took us many yrs of our life. In 1977 (35!! yrs ago)we cured my wife finally and from those time disease never renew. Write at my carpencopiter@gmail.com please

  6. Mental health and the chronic psoriatic is a long standing issue, one not often openly or bravely discussed. Cudos. In my own journey, this year one half of my face is completely covered by plaque, even while getting excellent regular medical care ( Duke ). Being female, I can try to cover it up with cosmetics, but that only ends up adding to the problem. Personal observation: Dude, anyone with a big ugly red patch on their face knows it is there, promise! Staring/commenting not required.

  7. Google found you for me, and reading this post I am amazed that you are writing lots of the things in my head. Now I don’t feel quite so mental, just sad again. I too suffer from Psoriasis, severely for the last 25 years. It haunted me through my childhood and has finally made me feel like its too much to deal with. Your post has given me hope that there ARE some doctors that actually care about how badly it effects us. Back to waiting for my derm appt, which should be here sometime in the next 13 weeks.

    All the best, may you have a flake free xmas.

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