Tag Archives: Psoriasis

SHEDDING LIGHT AND SKIN – EPISODE TWO

EPISODE TWO

If new to this blog please check out the disclaimer so you have a bit of context and aren’t tempted to email me suggesting I stop eating cheese.

A Scar Is Born

My unwelcome companion first appeared after a bout of tonsillitis for which I had been given penicillin. The GP diagnosed it as penicillin rash but my mother (who trained as a nurse) was unconvinced. She heaved a hefty medical tome from a bookshelf to double-check her theory and I was duly dispatched back to the GP with a note explaining it was probably psoriasis (guttate psoriasis to be precise, though I’ve never referred to it as that – but I confess that I sometimes substitute the “guttate” for “fucking” in less eloquent or sober moments). The GP had the haunted, pale look of a man who had encountered my mother before and knew it was best not to argue. I’d learnt long ago it was best to do what she said: and it turned out that hallowed professionals in neighbouring villages had as well. I was prescribed a tall, reassuringly old fashioned brown glass bottle full of thick, black tar that smelled of roadworks but looked like that stuff Dr Jekyll drank to stave off Mr Hyde’s increasingly frequent visits. It didn’t smoke, alas, but you can’t have everything. It was to be poured into the bath and this would see off the small, red dots that had spread over my torso and occasionally dried which allowed me to chip off a wafer of detritus with a satisfying pluck.

I was quite self-conscious at school: not just about my skin. It’d be easy to read this blog and think that every minor trauma in my life has been linked to psoriasis but that would be a mistake. I have always been a worrier (which is not unrelated to my condition): couple that with being somewhat weedy, pretty clever and drawn to performance and I was never going to be in the Top Five People Not To Bully At All Costs list. I don’t think I was even in the Top Two Hundred. I had also spent some time at a boarding school – a charity paid for it because my Mum was on her own, and so I didn’t exactly fit in, being cut from a slightly more humble (and probably hand-knitted by my Nan) cloth than my contemporaries. When Mum took me out of that place and I hit the local comprehensive at the age of eleven, my being in the vicinity of poshness for several years had bestowed an accent upon me which meant I didn’t really fit in there either. I say none of this for sympathy – I’m over it and having had both perspectives early in life has given me a more rounded one now – but the resultant emotional buffeting may add a splash of colour to my overall picture. Seeing as it’s believed psoriasis may be linked to one’s emotional state it’s worth mentioning – although often I was a cheerful chap who always liked performing, I was occasionally prone to glum moments and was often anxious about being liked and not getting into trouble.

Being the youngest of four children and wearing the hand-me-down clothes of the eldest of those (with fashions having changed in the interim), helped complete the mosaic of dweebiness that brought me undue attention from the more alpha males of the playground, who regularly zeroed in on the flared trousers I had to wear for school. This being the 80s they were a no-no: after all we were in the midst of a decade now renowned for its superb esoteric fashion styles. I was mocked by 12 years olds with mullets for goodness sake! “They’re not flared,” my Mum instructed me when I pleaded to have the trousers taken in “they’re straight legged.” I told this to the mockers. Of course, such a dazzling assault of logic stopped them in in their tracks immediately (for those with no irony detector, it didn’t stop them in their tracks immediately. Or even at all). In a similarly robust defensive tactic, Mum had told me to tell anyone who queried my seemingly measle-ridden body to explain that it wasn’t contagious, but rather a rash. “Yes,” said Karl Thomson during a school session at the swimming baths one day, “nappy rash”. Thanks Mum.

The tar, however, worked. Pretty quickly and effectively as I recall. And that was that, off it went, no disaster (except I got

Yes, I used to put this in my bath. No, I didn’t get especially clean.

told off a lot for not cleaning the bath properly afterwards). Only my head and my eyelashes stubbornly refused to behave normally. The scalp I’ll deal with in a future blog, whilst the eyelashes used to crust over with what looked like rampant sleep dust and went raw and painful when I (inevitably) picked at them. I thought I was blighted for life by crusty, yellow eyelids, but they’re such a distant memory that I’d forgotten about them until sifting through my memories for this blog. It’s a condition called blepharitis that hung about with me when I was a teenager but, you know, we grew apart and lost touch. I mention that only because I thought I’d never shake it and it caused me all sorts of worry and now it’s a dim, distant memory, consigned to the dustbin of history alongside other ghoulish terrors from my childhood like the imminence of nuclear war, geography homework and Phil Collins.

The rest of my skin was fine. So that teenage impetigo-dalliance was quickly put aside as a phase. It had been curious interlude then, a rather unnerving manifestation but not especially outrageous – I had other friends whose passage into manhood was accompanied by thick, boiling pustules of acne so considered myself a relatively minor casualty in the hormone war. It was soon forgotten and the rest of my teenage years were relatively trouble free (if low self-esteem, paranoia, sexual anxiety and heartbreak can be deemed trouble free: which, of course, they can with the benefit of hindsight and the amnesia thoughtfully supplied by old age and alcohol abuse).

And then it came back. And never left.

NEXT EPISODE: The Skinny Defective.

 

 

SHEDDING LIGHT ON SKIN – Treatment Update 1

So this is how this blog will work. I’ll intersperse the opinion and reminiscence blogs with a diary of the treatment I receive.

Treatment Update No 1

Tuesday 26th June

I am an outpatient at the Royal Free Hospital and have been since 2010. I am seen at least once a month. How this came to be and what progress I have made will be covered in future blogs.

The queue of medicine just waiting to help me upon discharge from hospital last month. As a side issue, note the beigeness of my sofa (not to be under-estimated).

I am bright and early for my Tuesday appointment having been here yesterday to give yet another blood sample. A vampire with a taste for Chateau Neuf de Hadoke would feast indeed should he happen upon the blood banks of this establishment. Between that and the amount of skin I shed, a canny hospital porter could probably rebuild and entirely new Toby if he had the requisite levels of time and insane zeal, and a stockpile of corduroy with which to clothe his hideous doppelganger and thus make it indistinguishable from the original. I’m very sqeamish even though I’m having this procedure regularly. So regularly in fact, I walk in with a swagger only to notice the nice lady taking my blood is being overseen by someone who is clearly supervising her. My needle-wielding novice looks at my paperwork with some unfamiliarity and then cheerily opines that she isn’t as comfortable with the manual cuff that has go be tied (as opposed to the – um – automatic one that has a mechanism which slides it into the correct vein-bulging tightness). As if to reassure me of her lack of comfort, she then fails to apply it. Twice. This only takes a couple of seconds and is done with charm and politeness, with the overseer in total command, so I do not write this as a complaint. I’m really just fishing for pity. In short, I am pathetic and will probably find any reason other than my own cowardice and low pain threshold to explain why this week’s donation of plasma is especially harrowing. Tune in next time when I’ll no doubt blame the curtains or Thatcher.

But it is worth it. My bloods are very good, according to my consultant, Dr McBride, who as you will discover on future updates (set in the past) has already secured her place in Heaven thanks to the expertise, clarity and empathy with which she has dealt with me over the years. It is a disease where the bestowal of kindness and instilling of a positive attitude in the patient are as helpful and important as moisturiser, good health and a hoover. She says, brightly, that my wife will be very pleased with the state of my claret. This is a good thing as my wife is fit and healthy and doesn’t want me to die. Dr McBride says I have a fabulous wife and she isn’t wrong, and her readiness to include and answer Katherine (who poses quastions that I am too dumb to raise) is a further indication of the exemplary manner with which she dispenses care.

My legs, today. If viewing this in public, remember to refrain from pleasuring yourself over this delightful image until you get home.

So much for the humanity though, what about the science bit? Well, my cholesterol levels are at the lowest yet even though I am on Cyclosporin (which traditionally heightens it)  and are at 5.0 on the, erm, Cholesterol Scale. I have been hovering at around 6.5 which is unhealthy (I have a family history of high cholesterol and a personal history of pizza, fags and Chablis). 5 isn’t great, it’s the top recommended level, but this is comparatively good. Statins have been advised (they help with psoriasis too) but are not allowable yet as they and Cyclosporin are the Rudolph Walker and Jack Smethurst of the drug world (they do not get on)*. But good: the cholesterol has seen some improvement since I have started exercising and taking wheatgrass every day. I mention both, but have no proof that the latter and my cholesterol drop are linked, I merely mention it as a possible contributory factor. Indeed, my general diet has been improved: lots more oliy fish and a less carbohydrate and cheese.

Now then, my dear old booze. When I was suckling at the breast of Bacchus pretty fastidiously, my liver enzymes were high. Too high (157 on the Bad Liver Enzyme Scale – they recommend around 50-60 I think, but mine goes up to 157!). Having had a bit of time off the vine-teat, I am back to a safe level of 51! It’s almost as if that when doctors tell you to drink less alcohol and exercise more, they might be onto something. I never said life was fair.

I wasn’t on Cyclosporin before my recent, hospitalising outbreak, I was having great success with Femeric Acid Esters. A high dosage, but I tolerated the pills and they really made my outbreaks retreat. They could not, however, do anything about the recent impetigo napalm that erupted over my body after a bout of streptococcal throat infection. This is because psoriasis is not so much a complaint of the skin as a furious epistle from a disgusted immune system of Tunbridge Wells. When most people get a throat infection their immune system arms itself and heads off to the tonsils. Mine adopts a more scattergun approach and decides that regenerating the skin at 8 times the usual rate would be the best approach. It’s like an emergency happening and the wrong alarm being flicked. Part of the investigation into this outbreak of mine has led to the discovery that I have low Mannose Binding Lectins. These are part of the innate immune system and should be at about 4 or 5 on the, erm, Mannose Binding Lectin Scale. Mine weigh in at an England-at –Eurovision score of 0.5. This, apparently, is interesting, and warrants further investigation from the immunologist. We await his summons.

Cyclosporin has been introduced into my diet to knock my recent outbreak on the head, but should only be taken for up to two years. Dr McBride really only wants me on it for three months maximum, for various reasons that are both medical and forgotten by me. There are options for new treatment – including biologics which are fortnightly injections I’d have to self-administer. This would mean that the side effects of psoriasis would not only be flaky arms, itchy scalp and inflamed skin, but also crying like a baby.

Back in a fortnight: a 25g increase in my Cyclosporin dosage in the meantime (taking it up to 125g in the morning and 150g at night). Fasting bloods to be done again beforehand, plus a more visits to the derma-psychologist, which is basically me being allowed to moan and self-flagellate to someone who has spent years getting qualified and clever and empathic just to listen to a corduroy flavoured litany of self-indulgence.

These people should be canonised.

*this is a relatively obscure TV reference (the men bickered in much maligned sitcom Love Thy Neighbour). There will be the odd obscure TV reference in this blog. For whilst it is a blog about psoriasis and its inherent difficulties, it is my blog about psoriasis and its inherent difficulties, so there.

SHEDDING LIGHT AND SKIN – EPISODE ONE

EPISODE ONE : INTRODUCTION

A blog about psoriasis.

Please read the disclaimer for what this is and isn’t, if you haven’t already.

I Have This Thing …

I have recently come out of hospital. Actually, it was the first time I have been in one overnight. Whilst I have lived with this thing since I was about eleven, and whilst it has often broken out quite spectacularly and certainly caused me upset, physical pain and impairment, this latest occasion, but eight weeks ago, was the worst I can remember.

Maybe it was because I had been doing so well. I have an excellent consultant and am a regular outpatient of a Centre Of Excellence for the study and treatment of psoriasis. Thanks to the kind cajoling of my wife, I have timetabled regular treatment around my itinerant lifestyle. For too long I had simply lived with it: lived with large red patches on either side of my nose, with leaving a dusty layer of powdery skin imprinted on anything I sat or lay on, or looked in the mirror with a resigned sense of shame and self-pity. So a couple of years ago I went on the offensive, and have been given excellent care and, more importantly, time to ask questions and be appraised of the nature of the disease and the treatment I have been given. Prior to then, I had tried various herbs, needles and unguents, which, like my current regime, will be given plenty of coverage in future instalments of this blog.

This is what I was like when I came out of hospital. Those aren't my shoes.

One Tuesday morning, I went to see my consultant and as she perused my unusually smooth outer shell (knees and ankles excepted) she was pleased. I like it when my consultant is pleased, especially as I credited myself with the progress I had made: maybe I had thought positively, or was looking after myself, or had swallowed my medication in an especially effective manner. Consultants are clever people and I felt like I had handed some genius professor a splendid piece of homework when actually all I’d done was take off my shirt and trousers. Her verdict:  I was to go outside and not come back for quite some time … three months.

Extraordinary. I had been coming in pretty much every month since I had first thrown myself upon her mercy. I had remembered saying to the doctor who assessed me on my initial visit that it wasn’t “looking that great today”. When she examined me she gave me the impression that I was somewhat underestimating the severity of my condition. Either that or she just thought I had an especially horrible body irrespective of the flaky blight that covered about 65% of it. But that was then, this was “come back in three months, you’re doing very well, have a star on the blackboard and a flump.” OK, not those last two, but I bet the NHS would have a higher approval rating if they introduced a flump-based reward system for good health.

Anyway. I looked forward to three months of not having to pop across town before hiking all the way to Manchester, thus leaving the house at 7.30am with overnight bags and my laptop and lots of other annoying, luggable stuff, bedecked in extra layers anticipating the stiff northern inclemency but wholly unsuited to tube travel. The discomfort of psoriasis is active and palpable, and one has to consider what clothes one wears for reasons of comfort and visuals: a too dark jacket can lead those around you to think it’s snowing. The pain is a constant presence that we may become inured to, like engine noise is by slumberers under the Heathrow flight path, but it sours, distracts and tires us insidiously, and most of us resign ourselves to levels of physical and mental stress that many people would find unacceptable and probably only experience when punching the telly because Baroness Warsi is saying something thick on Question Time.

Three months. Gone! No, not so much, as it turns out, not three. Nor two. In fact, two weeks later I was back in, and this time I was admitted to hospital for a relatively lengthy spell, in order to control an onslaught perpetrated without prejudice or undue subtlety. And what had set off such a total (about 80% of the surface area of my skin) outbreak of this nasty affliction; a tarnish raw and sore, yet dry, cracked and painfully parched? A sore throat, that’s what. A little sore throat.

Next Episode: A Scar Is Born

SHEDDING LIGHT AND SKIN – DISCLAIMER

A personal blog about psoriasis.

DISCLAIMER

This is a personal blog by someone with no medical skills, knowledge or aptitude whatsoever (although I was once in an episode of Holby City, and I survived so, you know, just sayin’…). I am simply recounting my experiences as a sufferer of a disease I see discussed very rarely. I know that in the search to tackle this dreadful blight, there are all sorts of debates about homeopathy, diet, traditional medicine et cetera: I’ve explored various avenues and had my fair share of successes and failures. No-one has yet managed to wrest me from its grip, and I’m not especially interested in debating the merits or otherwise of refraining from cheese or bathing in tar. This isn’t a place for such arguments, so I’m unlikely to publish any feedback strongly advocating one approach over another. I don’t want this corner of the Internet to become another battleground between the stethoscope and the hedgerow. Interesting personal stories of triumph, disaster or a slightly embarrassing moment on a bus, however, I will cherish.  Otherwise: it’s just my story. It might be interesting, it might help, or it might have a good joke about The Singing Detective in it. That’s all. I’ll update it as regularly as I can, usually when I have a writing deadline elsewhere that I’m supposed to be meeting.

For those who have stumbled here by mistake, allow me to introduce myself, I am Toby, I am an actor and comedian, and I have suffered from psoriasis for the past 26 years. I don’t know if talking and writing about this unsightly and often irritating condition helps, but it’s so desperate for attention it seems rather churlish to deny it. It is such an individual disease though, that I can’t stress enough that anything I say or try here is purely subjective and unscientific and is in no way intended to be advisory. And I know it’s not as bad as cancer or amputation, but on its own terms and in isolation, it’s bad enough.

My leg, generally.

Psoriasis is a dermatological condition caused by the immune system reproducing skin cells at 8 times the rate that they should. It manifests as red, sometimes scaly patches on the skin (commonly on the elbows, knees and scalp), and afflicts about 4% of the population. I am one of the 4%, and these are my experiences. They will take the form of an on-going commentary on my treatment mixed with memories from the past and no small amount of trite wordplay.