Treatment Update 10

22/1/2013 – 5/2/2013 (2 visits)

“It’s all my fault,” said the evil but deliciously oozing cheese and cholesterol level alarmist.

OK numbers fans – my cholesterol is down to 6.8. Still higher than it should be, but nowhere near the alarming levels it was at just after Christmas. Good news for my blood, bad news for whisky and Camembert fans (both of which I consumed in abundance over Christmas).  My liver is totally back to normal (even I can’t deny that not having a drink since January 5^th might have contributed to this in some small way).

According to Dr McBride lots of psoriasis patients drink a lot, and even those that don’t can get a fatty liver common amongst boozers, which is something that we have been monitoring. That said, I don’t have to have any bloods taken next time – the reason for my regular donation of plasma recently is to see if the ciclosporin is up to no good in my system. It raises cholesterol amongst other things: another reason to wean me off it. Further impetus comes from the fact that when dosage drops between a certain point (a different place, dependent upon the reactions of each individual patient) it stops working altogether and is fairly pointless. Down to 50g morning and night then, with a view to getting rid of it completely. As a result my arms are a bit sore and red, particularly the underside just around the elbow.

As all these psoriasis drugs seem to have some kind of side effect I ask Dr McBride what I might expect if I react badly to adalimumab. She rather coyly says that she’s not telling me, which is quite alarming: what could she be alluding to? Might I become Dr Hadoke and Mr Hyde: by day a bumbling, slightly grumpy man who can never find his Oyster card, and by night a rather bumbling, grumpy man who can never find his Oyster card and so kills people? Watch this space. What she does tell me is that it can leave on open to infection, hence the rapid reduction of the immuno suppressing ciclosporin. The combination of the two could leave me as open to infection as (insert name of crap football team here)’s  goal is to, um, letting in a goal.

Science-wise, I had some stuff written down about adalimumab and TNFs.  I wasn’t sure I had quite grasped what the latter was, even though I knew they were something that I had unusually high levels of, so I have asked Doctor McBride to tell me in her own words. “It’s TNF Alpha, which is Tumecrosis Factor Alpha which is raised in psoriasis. It’s an inflammatory mediator which is raised in psoriasis but also raised in depression. Sometimes when we treat people who are depressed with anti TNFs  then their mood lifts but it’s not across the board and occasionally when people take anti TNFs they can get depression. “ So there you go.

“What’s that?”
“The rest of your life mate.”
“Looks a bit dull – can’t I add anything nice to it?”
“Nope”
“Oh.”

So, to the layman, in treating the skin adalimumab also has an impact on reducing levels of anxiety. This helps with suppressing the desire to use alcohol as an escape – not just alcohol actually. We use anything:  psoriasis suffers tend to eat a lot, smoke, drink and not talk about our emotions. We’re a dermatological jigsaw with many fractured pieces that need putting back together rather carefully.

February appointment – addendum. Good and bad news by my latest visit – cholesterol back up (7.9 – I have not been looking after myself; not Camembert but Fish and Chips and Curry) but I am now off the ciclosporin. My arms are still not looking too clever and my face and scalp need constant attention, but the rest of me is pretty good (relatively speaking). Upon my return to the hospital I will be subjected to my 16 week assessment with both Dr McBride and adalimumab wrangler Nurse Annie to see how well I am responding. Hopefully it’ll be good (though I won’t be allowed Fish and Chips to celebrate – maybe a pint of salad or a shot of cous cous .. Oh, I love being old and ill).

Treatment Update Nine

Mid-January 2013 (various dates)

This is a summary of various visits which might be a bit jumbled as I didn’t keep especially good notes and have been in nearly every week.…

The Royal Free Hospital ; not so named because Prince Charles and the Queen aren’t allowed in.

Before going in to see Dr McBride there are various things I have to do. I don’t know what they test my urine for but they didn’t rush me into hospital so it must have been quite splendid wee. They also check my weight (a tad over what I’d like to be) and blood pressure (no idea why, but I don’t like having it taken; it feels like my veins are about to burst).

I am a few weeks into my biologics treatment, and being monitored as a result of my breakdown, so Dr McBride is seeing me every week (during one check-up we have a very surreal conversation about one’s “inner chimp” … you had to be there*). Dr Mizara was away for a bit but I had a session with her when she came back which was extremely useful. I am being weaned off ciclosporin too (75g morning and night). Early in the month my cholesterol has gone up to an all-time high of 8.9 which really needs addressing. I can’t go on statins until I’m off ciclosporin as they seem to have an Israel/Palestine thing going on. I have to start the ball rolling with my GP though (place your bets now as to whether I have got around to it before the next blog). Also, my liver’s up a bit. Wonder why that could be? (Christmas Time, Mistletoe and Wine … and then some more wine … and perhaps a little more)

The reason that Doctor McBride is seeing me weekly at the moment is, I think, to ensure that I don’t start dribbling or talking to a hat (see previous blog). As ever she takes time to talk and give me insight and understanding. She and her team were fabulous over Christmas when I was in real need of help, and the aftercare is very effective. Anyway, I’ll concentrate on the purely medicinal side for now, as I think regular readers will be pretty clued up as to the gold standard TLC I get from all of the team at the Royal Free Dermatology unit. Their absence from the New Year’s Honours list was notable.

On a later visit my PAASI score is good, which is something. Another positive is that I seem to be responding well to the adalimumab. I only had my blood done before my appointment so we didn’t have the full results but the general analysis is OK. I will have to wait for the specifics. Skin-wise I’m pretty clear and people have commented on the brightness of my face (without prompting). I have had a slight outbreak on my arms around my elbows so that needs monitoring, but as far as my pink body armour goes, this is something of a giant leap. My scalp, as ever, remains incorrectly proportioned as far as the hair:scurf ratio goes. There’s a little patch of dry skin on my back but otherwise my trunk is free not only from plaques but also that reddish discolouration that is usually here reminding me that even when I’m in remission a potential outbreak is never far away.

I’m the human equivalent of this apparently. Twice.

Dr McBride says that I look healthy – if I was a dog I’d have a nice wet nose. Ah. Yes, regular readers, you’re right. She has said that once before. Suddenly I am reminded that though the team here remember our names and are conversant with our history and individual problems, they do not hang on every word spoken during our sessions (we on the other hand, do). I am one patient of many on just one day. They see patients on other days. I generally go once a month, so in addition to my Tuesday there are another three per month where a constant stream of disparate patients occupies my seat. So of course Dr McBride doesn’t know that she’s used that metaphor on me before. I know though, and ruefully note how effective the caring side of this process is because it’s just one tiny, isolated moment where I realise that I am not as special as I like to think. I suspect most patients with most illnesses feel that all the time as they negotiate the medical treadmill. Brilliantly, of course, as I mull this over later Dr McBride e-mails me out of the blue. The full analysis of my bloods is through, and she thought I’d probably like to know now, rather than wait until next time, that they have shown significant improvement since my first visit this year. She didn’t need to do that, but obviously knew I was a bit concerned so took a moment of her own time to reassure me across cyberspace.

I feel all special again, which puts a bit of a spring in my step. My nose feels a little wet too.

*I will blog about this at another time – Dr McBride has been reading a book called The Chimp Paradox which is useful for psoriasis sufferers. It helps us gain some understanding about the mental processes we go through that prevent us from having a stress free life.

Don’t Suffer In Silence

Well I’m becoming quite the scabby media whore am I not? I recently did an interview for the NHS Choices website which may be of interest. Read it here.

Keep smiling.

Guest Post

A nice lady from across the pond called Katie Brind’Amour has been in touch and asked if I would print an article in this blog about her psoriasis-related work. I am not one to deny my – ooh, tens of readers any avenue to psoriasis treatment and and so who am I to say “no”? I do not know Katie and cannot personally endorse her work, but I share the information because … well, because she asked nicely. Here it is (with apologies for the American spellings ):

Making a Move on Your Psoriasis—at Home

Many individuals with psoriasis are no strangers to home remedies or alternative therapies. Others are so desperate for symptom relief that they would bathe in a tub of mashed potatoes and tapioca pudding if someone told them it could clear psoriatic patches of skin. But which at-home treatments really have some evidence behind them?

Slather on Some Homey Goodness

Perhaps one of the most familiar methods for self-treatment of psoriasis is a topical cream or ointment. Instead of searching for the best dye-free, scent-free lotion since sliced bread, opt for a new topical option: oils. To be sure that none of your new home-based therapies for psoriasis interfere with other medications or ointments you may be using, check with your healthcare provider before making changes.

Fish oil (from over-the-counter supplement capsules or bottles) applied directly to the skin may help reduce inflammation and itching for some people. Olive oil or vegetable oil may also be massaged gently into the skin—including the scalp—to try to reduce scaling and improve moisture retention in the skin. Skin and hair products with tea tree oil may also help alleviate scalp psoriasis.

If oil doesn’t provide relief, consider a regular oat, Epsom salt, or Dead Sea salt bath to relieve redness and itchiness. Creams with aloe, capsaicin, or mahonia may also help stop pain and inflammation, although more research is still needed.

In addition to non-irritating lotions and oils, opt for cleansers, body washes, shampoos, and other hygiene products with as few added colors, scents, and chemicals as possible. Some individuals with psoriasis are sensitive to additives in topical products, especially during outbreaks. The natural minerals found in hard water may be helpful for skin integrity, as well, so avoid using a water softener if you have one.

Eat, Drink, and Feel Merry

Oral supplements and a psoriasis-friendly diet also provide some people considerable relief from the woes of psoriasis.  In addition to some of the topical treatments mentioned above, oral option for psoriasis treatment do exist outside of the pharmacy.

Consider a few simple supplement options. Popular helpers include omega-3 fatty acids, turmeric, milk thistle, and vitamin D. Some of these may relieve inflammation, calm redness, and reduce the frequency of outbreaks, but the effects vary from person to person. Always check with a physician before adding an oral supplement to your care plan.

If you’ve got the gumption to go beyond a daily pill, think about a more holistic change. Revising your diet to be a customized home-based treatment for psoriasis may be your literal “meal ticket” to a healthier you. Be patient, however—it can take up to three months for dietary changes to really work through your system and create a significant change in your psoriasis symptoms.

Firstly, have your doctor check you for food allergies and sensitivities. According to the National Psoriasis Foundation, as many as 1 in 4 people with psoriasis may also have a gluten sensitivity or allergy. If you have an undiagnosed problem with a specific food or food group (like dairy), some of your psoriasis symptoms may be a direct result of repeated exposure to the food. Immediately eliminate any allergens; observe changes in your symptoms over the next three months. If nothing seems to improve, try reintroducing them one by one to your diet to see whether they make your symptoms worse.

If you would rather focus on what you can eat instead of what you can’t, opt for a balanced diet rich in vegetables, fruits, lean protein, and whole grains. Depending on your other health needs, consider targeting a heart healthy, anti-inflammatory, or low-fat diet. No matter your choice, consider finding a regular place in your diet for cranberries, fish, nuts, chocolate, soy, leafy greens, mangoes, squash, and other foods that are naturally rich in antioxidants and valuable nutrients.

Building Your Own Treatment Regimen

After you have identified the most effective topical treatments and diet for your individual symptoms, consider upping the ante (without spending money). Exercise therapy can be highly effective for some people with psoriasis. In addition to increasing your sun exposure and offering a wealth of benefits to your entire body, exercise can promote range of motion and relieve swelling and pain for those with psoriatic arthritis.

Regular exercise (aim for five times each week) can come in a variety of forms. Find the most enjoyable option and make it fit into your schedule—no excuses. Great options for beginners include walking, swimming, stationary cycling, yoga, tai chi, and badminton. Stretch before and after each workout as well as throughout the day, particularly if you have arthritis. If your psoriasis limits the activities that are comfortable for you, ask a health professional or trainer for advice on finding a safe activity for you.

Collectively, a home treatment plan that you maintain and alter as necessary may be your ticket to clearer skin and fewer attacks. Home-based therapies can be at least as important to your health and recovery as pharmaceuticals, and may even enable you to use fewer pharmaceuticals in the long run. Pay attention to your symptoms, track your progress, and make your at-home therapies the answer you’ve been searching for!

Katie Brind’Amour, MS, is a Certified Health Education Specialist and freelance health and wellness writer. She enjoys writing about the importance of diet and lifestyle in management of chronic health conditions and is slowly chipping away at her PhD in Health Services Management. Katie also blogs for Women’s Healthcare Topics and loves finding excuses for sneaking dark chocolate into her daily diet.

FRUIT OF THE LOON

Christmas 2012 … (cue clanging chimes of doom)

OK, I may as well get this out of the way early on. I had a few mental health issues over the Christmas period. It was horrible, but I suppose at least it will enable us to examine the links between mental health and psoriasis, which I am coming to realise have a very intimate relationship. It’s one not many people know about and those who do don’t really acknowledge it:  like a staff room affair or the Catholic Church and paedophilia. Of course, this was the whole impetus behind the much needed See Psoriasis, Look Deeper campaign, so my breakdown has been rather timely. Come to think of it, too timely. Perhaps they put something in my Horlicks to set me off in order to draw attention to their scheme? Like a piece of psychologically primed product placement.

Anyway, if I may my candour on this will stop there. I have friends and family for whom this period was difficult and whilst I don’t mind breaching my own privacy it’s not acceptable to do so with theirs, so I’ll be scant on the detail if I may. But let’s put it like this, it was quite serious: it wasn’t a sadface-put-on-my-Facebook-profile-because-I’m-feeling-a-bit-needy sort of crisis; it was a wearing-underpants-on-my-head-and-sticking-two-pencils-up-my-nose-I’m-just-off-to-Hartlepool-to-buy-some-exploding-trousers kind of discombobulation. I’m alright now, mending slowly, and received great support from people very dear to me. I have been taken off acitretin which doesn’t help lighten one’s mood apprently. The dermatology department at the Royal Free, who have cared for me so well, dropped everything to facilitate my stabilisation. The psychiatric care I received however (mostly at a different hospital), was a real eye-opener to how mental illness is treated in this country, and will be something I blog about in detail when … when I’m a bit further away from it all. I’m still a trifle raw and also don’t want to give the impression that I am currently incapable of rationality, because that couldn’t be further from the truth. Some distance is necessary before I address this very serious issue though. Suffice to say for now then, that the whole system for dealing with a psychological crisis seems designed to ensure that if you aren’t mental when you go in, you sure are by the time you come out. Fortunately I had a wife at home who could rescue me; many others aren’t so fortunate.

Skin-wise this relates, as obviously a lot of one’s deep seated frustration and self-esteem issues are related to the fact that one has spent much of one’s life looking in the mirror at a scaly red flake monster. When I say one, by the way, I mean me, but I’m trying to be all professional and distant because that’s sexier (referring to myself as “one” is fine and sane – it’s when I start describing myself as “both of us” you’ll know that I’ve flipped). In addition, when one’s feelings venture into this kind of territory the temptation is to hit the bottle. Hit? I did a bit more than that. When I wasn’t working I administered Grievous Bottley Harm, nutted a Chablis and kicked the shit out of some very nice malt scotch whisky. Curious how when I am working I manage not to drink at all – when I am on stage I don’t drink till after a show, when I’m doing a telly job I don’t drink during the whole shoot … but when I’m left to my own devices and thoughts, I unleash a torrential downpour of liquor that would kill a horse (and therefore probably add lustre to the flavour of certain burgers on the market until relatively recently).

What the drink did, of course, was to facilitate the outpouring of all sorts of things that need dealing with sensibly rather than splurging out amidst random thoughts and slurred vowels. What I do know, as I write this, several weeks sober, is that what it didn’t do was help. It made things worse. Which is why it is ridiculous that I always turn to it when I want to make things better. So I have stopped.

Watch this space.

I’ve been tentative about publishing this as it all sounds a bit bloody needy, and frankly, could have potentially damaging professional consequences (nobody wants to hire a self-confessed nutcase who drinks too much). Oh well, what the hell: I’m on the mend, I’m working (and therefore, potential employers, distinctly available and able, fear not), I’m dry and have thrown myself into a ridiculous Doctor Who based project to prevent me from staring at my own navel for too long.

Meanwhile, Dr Mizara is being very clever at tying everything together. There are various things that haunt me from the past but they are done and dusted and I really need to get over them. I need to stop concentrating on the things that frustrate and worry me and instead enjoy the very many things that make my life a blessed and fortunate one. The experts tell me I need to love myself as well, but I was always told that that made you go blind. I clearly have a lot of hard work to do, but they say you have to hit rock bottom in order to get yourself straight so maybe it’s good for me even if it’s not particularly enjoyable to experience. It’s like exercise. Or John Craven’s Newsround. Or a Bran Flake.

Onwards, then, and I’ve only got upwards to go …

Treatment Update Seven

11^th Dec 2012

Oh, and if you’ve popped by to tell me to eat hay or give up cheese, please read the  disclaimer here before posting anything. I will publish any replies but not necessarily engage with them ; if you have your own cures or theories I am happy to air them, but won’t be batting opinion back and forth – this is a blog about my personal experience and the medication I am receiving.

You might well cry Mr Bond, but try having psoriasis. Dr No-Can’t-Do-Anything-About-That! Moonflaker! Skinfall (et cetera)…

I cried during Skyfall. I should have known something was amiss then. And I didn’t just cry at the emotional -oh-no-someone’s-dead bits. I got teary when anything with the vague whiff of a fan pleasing nod occurred or if Daniel Craig did something quintessentially Bond-esque. Shaken Martini (weep!), cool old skool car gets revealed (unleash the waterworks!), Miss Moneypenny (lachrymosity alert!).

I alluded to various personal and work issues in my last blog too, and yet even those now seem as if they are related to my somewhat discombobulated state. I usually take such things in my stride and frankly my profession is riddled with frustrations and disappointments, so why have I been feeling different lately? Well, I found out last night …

I had an appointment on Tuesday and saw a very charming locum doctor (Dr McBride was indisposed) who was rigorous in his examination, had a gently probing questioning style and was rather regretful when the time came to inform me of my cholesterol levels. I’d predicted a slight rise from the alarming 6.7 I was at but even I was bowled over when a colossal 8.8 had registered from my latest blood sample. That won’t do. One of the reasons is that I am currently on two medications – ciclosporin and acitretin. I am supposed to be reducing the ciclosporin and increasing the acitretin, but because my skin hasn’t been great, I haven’t reduced the ciclosporin at the speed I should be. Each medicine has a cholesterol raising side effect. Taking both at pretty optimum levels (I’m on 25mg of acitretin – the maximum dose is 35mg – and 200mg of ciclosporin) raises my cholesterol twice! The fact that I’ve been eating American food and staying away from the gym probably doesn’t help but let’s ignore that for now and lay the blame squarely at the feet of my drugs!

I have also had an X-Ray to see if the pain in the three fingers of my left hand is psoriasis related arthropathy or something else. If it is it’ll be a relief to know precisely what it is that’s causing the often intense discomfort, but that relief will be sullied by the fact that I have arthritis. So let’s see. I would rather I didn’t have something else wrong with me to be honest. I’m only 38 and I feel like a laptop that’s just this second passed its warranty period – annoying things seem to have suddenly stopped working for no apparently good reason.

And so, last night, I did a turn at a medical do, where it’s safe to say that my comedic musings went down resoundingly adequately. Both Doctors McBride and Mizara (yes, Mizara, I’ve been spelling her name wrong!) were there and spent much of a precious night off talking to one of their annoying patients. Me. During our chats I learned that acitretin can cause upsets in one’s emotional state and can increase anxiety. Suddenly everything fell into place. I’ve been worried about work, money, life, but more so than usual and occasionally quite alarmingly (I have felt like I’ve been teetering on a precipice). And so it’s a relief to discover that it’s not me being weird (I really did think I was going a bit nuts). It’s the bloody pills. So as of today I am off the acitretin, and hopefully this’ll restore me to my usual calm, cheerful, emotionally repressed, buttoned up, grumpy self! It’s a relief as I’m not massively comfortable dropping industrial amounts of pillage down my neck morning and night, and my stomach has always felt a bit dicky since I have been taking all of this stuff.

It probably won’t look like this but I wanted a scary looking injection picture to elicit maximum sympathy

I now have to consider – in consultation with my wife – whether I want to chance biologics; those A List, expensive drugs which are self-administered by injection. Frightening but with a reassuringly lofty, industrious aura about them. They’re injections for goodness’ sake; they are bound to work, surely, because you have to stab yourself to administer them. What would be the point in doing something so intensely medical, so brave, so … dare I say it, manly, if it just made me feel a tiny bit better? That’d be like trying to wipe a sniffle with a baseball bat studded with nails. Just sounding a note of warning, by the way, Dr McBride said that one in one hundred patients has an adverse reaction to biologics. With characteristic self-pity I remarked that that would probably be me then, and she said that that is what all psoriasis sufferers think and say. Bugger. Not only am I self-centred and paranoid, I am predictably so. Never mind – I am enjoying this because it turns out that I can blame the hallmarks of my disease for every twattish thing I do, say, think or feel now. That’s kind of reassuring. There are side effects to the biologics, but she won’t tell me about those in detail until I’ve decided whether to take them or not. I am to come back in a couple of weeks with my decision.

Crikey, that’s a first for this blog. A cliffhanger ending …

Toby Hadoke will return …

Someone has been nice about this blog again!

I post this only because the link may be useful as it leads to another 21 blogs that you may prefer to mine (he said magnanimously whilst posting something praising him). Top 22 eh? A strange number to choose. Please, don’t bother writing in to point out that there are actually only 22 psoriasis blogs on the whole of the internet: I don’t want to know, thanks.

This year, our specialist panel of judges have reviewed hundreds of different sites from across the internet before hand-picking the very best for each category. http://tobyhadoke.com is among the elite selection of awardees that our judges felt made a real contribution to the eczema and skin condition category and you can see your site in lights here:

http://www.kwikmed.org/22-eczema-psoriasis-support-sites/

Please accept my warmest congratulations, as well as our appreciation of your continued hard work and excellent quality editorial. I hope it continues for many years to come! We’re rolling the awards out fully with our members soon and hopefully it will bring some deserving attention your way.

There are some great winners on the list, including some sites that have less exposure than your site does, and were selected by our judging panel for their unique perspective and contribution. It would be great for all if you let your readers know where they can find some great resources on eczema and skin condition by linking to the awards. Either way it would be great to hear from you.

Once again, I would to send you my congratulations for your well-deserved recognition.

Treatment Update Six

November/December 2012

Oh, and a timely reminder to read the disclaimer here – please don’t post a reponse to anything here until you have had a look.

All that is lodged in my memory from Doctor McBride’s session in early November (I’ve been away having fun … I mean working, since) is that my progress has regressed at tad. And I have regressed further since then I am afraid to say. That’s obvious from the physical side: then, I had a few light patches on my arms, and now (at the time of writing I’m seeing her again in just a few hours) there are shadows on my arms and sides. Shadows with a dusty surface and a reddish tinge. Let’s be fair, I’ve not looked after myself as much as I did when I was at the Edinburgh Fringe; wheatgrass shots and fruit/veg smoothies each morning, a strict exercise regime that had me in the gym nearly every day, no alcohol, pretty early nights. Since then I’ve let myself go a little bit, so surprise, surprise my Cholesterol is at a whopping 6.7 (I had it down to 4.5!!) which is not good, whilst my Triglycerides (fat in the blood) are at 3.6. I can’t remember if that is good or bad but it’ll be interesting to see how they compare to the blood I gave yesterday. “Gave”? I make it sound like I am benevolently donating something as opposed to having my plasma sucked from me so that it can be broken down into numbers in order to discover what level of the Unhealthy Scale I have ascended this month. I asked Dr McBride if we could hold off with statins and so keep my daily intake of pills below the hundred mark and in return I would endeavour to get as healthy as before; I am convinced that self-discipline might be a better long term option than pill popping.

Well, I think I have probably failed.

“Can you tell what it is yet?” It’s my arm, with a creeping barrage of mild psoriasis doing its best to ruin an otherwise perfect and robust limb.

I went to a Doctor Who convention (don’t snigger at the back) in Chicago (see, I got to go to Chicago for free, oh ye sniggerers) at Thanksgiving, where I ate American food and drank American drink. The latter is like English drink but weaker, not as nice or three times more expensive, but not especially better or worse for you. The former is like English food but with added dollops of fat, syrup, sugar and insanity. Like sweet potatoes? Not until they’re topped with marshmallow you won’t! So I have put on weight and developed very, very dry(but not red, sore or painful – I’m dusty rather than crusty) patches on my arms and sides. My scalp could single-handedly provide the snow for the world’s entire collection of nativity displays. So bad has it been that I have adopted an entirely beige clothing policy in order to minimise the embarrassment and camouflage the cascade of detritus. My lips have also been drier than a sarcastic Martini but that is because of the acitretin (which, coupled with ubiquitous Stateside air conditioning has left my gob like the lunar surface but with slightly fewer golf balls).

Now, of course, we don’t know if food is a trigger (probably not) but general physical well-being is definitely important. However, my visit to Doctor Mazara yesterday (2^nd December) indicates that various personal and professional stresses are responsible for my mild flare up. I don’t need to go into the whys and the wherefores (especially not after my last, rather maudlin, blog), but the fun times in Chicago have been karmically balanced by some less joyous developments. As ever I have tried to greet each unwelcome visitor with a smile and Dr Mazara helps me to do this by offering good advice; only control what you can, life isn’t always easy, and accept the fact that one has to work to keep one’s personal life happy and that the profession I’ve chosen generates frustration and upheaval. Irrespective of what is happening, we are responsible for our own moods; dwelling on the uncontrollable gets us nowhere and taking life by the scruff of the neck and staying positive can work wonders. So that’s the prescription – open the advent calendar doors and make sure there are only happy scenes behind them.

There are certain things I have to do to change the things that aren’t going so well, and I am working on them. Dr Mazara cites coming to her and getting to grips with the emotional side of the disease as positive steps and examples of why one shouldn’t bottle one’s feelings up. Interesting, having gone to her feeling fairly rotten I reacted well to the idea that just being there and talking openly was a marked improvement on how I would have approached this a year ago. In plucking a positive (and you’ll note, one that put me in a good light) from all the surrounding difficulties she managed to spin me out of my self-indulgent miasma (by indulging me!). My visits to her have made me a little raw when I think about the disease, but she assures me that this is a good thing. Great – crying makes one better apparently. That’s no good if you’re on a bus! Oh well then, there’s no alternative fellow sufferers – never mind the pills, just watch Old Yeller or Bambi once a week and you’ll be fine.

So – let’s see what my physical readings are when Dr McBride goes over my bloods later. I also have agony in the joints of three of the fingers of my left hand. I am worried this may be the result of some kind of related arthritis, but let’s not panic … he said, having been panicking all month. But that’s the point, I don’t know if it is or not until I find out, and the only way to find out is to do something about it. Don’t fret about what might be, only deal with what is (oh no, I sound like Yoda except all my words in the right order are). Accentuate the positive. No humbug this Christmas then …

9^th 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 …

RADIO SCAR

The day after my trip to Parliament  – 18th October – I went to USP Studios to spend a few hours chatting to a number of radio stations about psoriasis and the See Psoriasis, Look Deeper campaign. It wasn’t just me, as they need some people who actually knew what they were talking about to contribute to the discussion, so Helen McAteer from the Psoriasis Association and Simon Lawton-Smith from the Mental Health Foundation were there to lend a factually correct assessment of the condition and its ties to the sufferer’s psychology, whilst I moaned about the disease and repeated the same anecdotes like a boring actor plugging his tedious autobiography.

Helen McAteer of the Psoriasis Association, Simon Lawton-Smith from the Mental Health Foundation and some bloke whose principal skill seems to be the ability to talk about himself a lot.

I was very impressed with how intelligently the subject was handled by our interviewers. Some were live (the interviews that is, as far as I am aware, all of the interviewers were live: the undead are one of the many groups under-represented in today’s hegemonised media) and some were pre-records to go out later: some used all of us, some wisely dispensed with my services and relied solely on Helen, and a couple of foolhardy souls (BBC Radio Manchester and the syndicated Ed Stagg Show which goes out over a number of BBC Midlands services) just used me.

One notable thing that came up was that when we were doing our first interview, the interviewer was asked not to say that people “suffer from” psoriasis, which is what he had written down on his scripted intro. As it happens, during the taped discussion, he did indeed introduce me as someone who “suffers from” psoriasis, and had to do a retake at the end. Simon took the opportunity to ask me what my take on this semantic issue was, and I said quite bluntly that I “couldn’t give a f*** how people describe it” which immediately made me realise how people in my line of work are quicker to swear than people with proper jobs. But it’s true: the interviewer wasn’t being derogatory or pejorative; he was describing a patient with an illness. I didn’t take offence at the implication that I suffer. Why? Because there are issues of import around this disease that are far more pressing than pernickety verbal scrutiny. I know what he meant, and I answered accordingly. If someone says something deliberately hurtful about my physical appearance I will take offence, but not if someone who uses a description without using the vocabulary-de-jour. Who cares? And I know that the people who have decided we must not say “suffer from” have the best of intentions too, but let’s not get diverted by the, frankly, unimportant issue of how exactly it should be described.

I will be linking to a few of the interviews here, but it will take some time as I have to host them on You Tube and doing so involves putting them together on my wife’s Mac which is as slow as an East Coast train from London to Newcastle when there’s a slight breeze and it has rained in the past three hundred and fifty years. The links below will be green when the pieces are ready:

BBC Radio Manchester (me and Heather Stott)

The Wireless on Age UK (me, Helen McAteer and Simon Lawton-Smith)

BBC East Midlands Syndicated (me and Ed Stagg – a long interview this, 21 minutes)