It’s Psoriasis Awareness Week (28th October – 3rd November 2019).
I haven’t updated my Psoriasis Blog for a while because there’s not been much change – the usual ups and downs but generally I’m doing well thanks to my treatment regime of biologics. I’m seeing my consultant every six months just to monitor things – my blood sugar is a bit high but that’s because I have started eating biscuits and sweets now that I’m off the booze, and my Vitamin D is low because I’m a hermit who sits in darkened rooms watching Doctor Who. So I need to kick the sweets into touch and gambol in a sunny field if I want to reach peak health but it’s generally an improvement (see previous entries for the up-and-down journey unto this destination)
So I’ll just give the headlines for now :
If the creams aren’t working ask your GP to refer you to a consultant – or certainly to explore other medications.
There isn’t a cure for psoriasis but it’s certainly more a manageable than anyone ever told me in my first 20 years with the condition.
Boringly , things like diet and exercise do make a difference. That said, there’s no clinical proof that avoiding certain foods etc, makes a huge difference (although there are lots of individual anecdotal examples so don’t sniff at it if something works). What is certain though is that keeping healthy lessens the condition’s ability to get a hold of you.
The mental health ramifications of this are huge. Do not be afraid or ashamed of this, and maybe try getting some hep. Being aware that you can trace dark feelings back to your psoriasis is helpful in the management of both.
This year’s Psoriasis Awareness Week is all about its connections with childbirth and pregnancy, so not exactly in my area of expertise. But The Psoriasis Association have produced some useful information, which you can read and download here.
I participated in a video in order to spread a bit of understanding about psoriasis. It covers such subjects as life impact, prospects for clear skin, and what level of discomfort it is acceptable to live with. It’s very well put together I think, and was filmed on a Wednesday recently at the 99 Club in Leicester Square. I also look a bit scruffy for which I apologise: it had been a long day which started with me oversleeping…
(The video is for an international market so apologies for the US spelling…)
I’ve been a bit quiet on the old psoriasis front lately but it’s still there, lingering. I actually noticed that my arms aren’t in the greatest of shape yesterday when I went to Maidstone and the offices of Abbvie in order to talk to some nurses from all over the country about being a self-medicator. It was a 9 hour round trip but worth it I hope, even if the lady at reception was one of those people who regularly occur on my life who sees fit to correct me when I tell them my name: “Hadoke” I said, pronouncing it accurately. “Haddokey,” she replied as she read from her list, presumably thinking that I’ve got to 41 without knowing what I’m actually called. I mean, I know it’s a silly name and one that doesn’t sound how it is spelt but you’d think if anyone had the key that unlocked the secrets to its pronunciation it’d be me.
Anyway, the disparate group of nurses were speaking to patients with various ailments and I was there to explain my injections, how I administer them, how I feel about them, how I remember to do them, and my thoughts in general about my condition. All of those things have been well rehearsed here so I won’t repeat myself but an analogy that I came up with went down well and seemed useful. I emphasised that psoriasis isn’t so much a skin condition as an auto- immune problem and that when I get a sore throat it is a bit like a building detecting smoke – the alarms and sprinklers and everything go off everywhere no matter where the fire is. This is a similar reaction to when my skin goes into overdrive when my throat has a problem – my immune system isn’t targeting the throats, so my skin over repairs itself necessarily. Those of you with properly functioning immune systems get a more efficient response.
As for my progress, I’m still on Adalimumab every two weeks, with a vitamin D booster and the usual mixture of shampoos and scalp application for my head (still dusty unless I’m really on it) and Pro-Topic for my face (which is keeping it in check very nicely). I have been exercising and trying to limit alcohol with varying degrees of success (“Yay, I’ve had two weeks off the booze – why don’t I celebrate with a swimming pool full of wine and a bucket of gin?”). My arms are a bit itchy and slightly worrying even though my last check up (and bloods) were very positive. It never quite lets you relax this thing, but I’m not letting it get in my way.
The mental health side effects of psoriasis can be quite profound, but treatment is there if you want it. Talk to your GP about it. The post below is extremely anecdotal and subjective because psoriasis treatment is so bespoke. I share it not because I am drawn to the idea of bearing some of my inner frailties because actually the opposite is true. In fact, it scares me a bit – part of me wants to post this but not Tweet about it because then no-one would come here and read it. But that would be to miss the point rather, wouldn’t it? So here you go, have a butcher’s at this. There is more about these issues at the See Psoriasis: Look Deeper website. There is much useful information there.
I have been discharged!
I have been seeing the derma-psychologist Dr Mizara for over four years. I was introduced to her when I was hospitalised with a painful and widespread outbreak of psoriasis after a throat infection. I was on immunosuppressants at the time so instead of a standard flare up I was knocked for six: psoriasis was Chris Gayle and my emotional and physical make up were the hapless and ill-equipped Zimbabwean World Cup cricket XI. Physically I was in a parlous state but mentally I was smacked straight out of the ground. Prior to that I had been doing so well: the medication had meant I’d been bump and crack and flake free for the first time since I was about 20. No pain, no ointments – my surface was flat and my sheets were clean.
(Alright – I’ll stop the cricket analogy now in case you decide to stick your bat into my crease).
I have always been rather dubious of psychoanalysis – not because I judged those who underwent it: whatever helps you, of course. Actually, I am lying. I did judge people. I judge people who share their medical and emotional woes on the internet too. I know! What a hypocrite. I don’t want to be one of those comfortable, middle class people who nods earnestly and bangs on about my councillor helping me through the latest hardships undergone by a relatively healthy white man with a home, a loving family and every episode of Doctor Who on DVD. Pass the bloody tissues.
And you know, I don’t have mental problems. Everybody who knows me would say that I’m a fairly jolly chap – yes, I get grumpy about ridiculous little things but only on stage or in dressing rooms and to hilarious (and sometimes “quite funny – three stars”) effect.
So it was with some trepidation that I went to see Dr Mizara. I’d never been very good in drama classes at that “opening up” stuff. You know, when we have to tap into our emotions and cry about something that happened to us. I’ve cried on stage, sure, found it easy, but crucially, because I was pretending to be someone else. I’m not one for bearing my soul in public (well, unless it is hidden behind the conceit of stand-up comedy – and perhaps we don’t need to get too complicated to work out the implications of that).
The first time I went we just talked – she was assessing me as I was getting acclimatised to the process. I was trying it out though – for it’d been suggested to me that it would help by a consultant whom I respect and I would give anything a go to control this scaly beast. If Dr McBride had told me to daub myself in marmalade and sing the Sailor’s Hornpipe on the roof of St Paul’s Cathedral every third Wednesday of the month I’d have had a crack. I have, in the past, spent a year taking Chinese medicine which is only marginally less ridiculous.
It’s difficult to describe Dr Mizara – considered without being distant, empathic without being touchy-feely, pragmatic without being cold.I guess the thing is, you don’t get to know your psychoanalyst : they’re doing a job, part of which is to know you. I decided early on that there’s no point in lying – a Doctor can’t fix you if you don’t tell them all of the symptoms. So of course when she asks that question “Anything else?” all those little niggles – things that have annoyed you, things that you feel guilty about, things that you don’t understand … come flying out. Total disclosure, even if it seems like it’s something irrelevant (which of course it isn’t).
That process alone has been extremely helpful. It’s a pattern of behaviour common in psoriasis patients – to bottle things up, to feel guilty about being angry about certain things because in the greater scheme they are minor. This is tied into the condition. It’s not life threatening nor is it cancer so we feel a bit burdensome complaining. The psychology of this condition is complex and it manifests itself into all other areas of our lives whether we realise it or not.
I’m my own harshest criticso it was always easy to deliver a litany of Things I’d Done wrong whenever I crossed the threshold of her small office on the first floor of the Royal Free Hospital in Hampstead. And I invariably went out feeling clearer about things : better. On some occasions I simply unburdened myself – on others I had an insight into why I had felt certain things at certain times or why I had reacted to others (and they to me) in certain ways. I cried. I got angry. But largely I tried to work out how to get less upset by this thing, or how to respond better to that one. This may sound daft to you – maybe you don’t spend hours going over conversations you had the night before, trying to spot the moments where you’d given the nice person you were talking to a reason to hate you (they didn’t give any sign they’d hated you, of course, but they still might have done). Maybe you don’t still get really upset about that stranger who said something cruel and thoughtless about the dry patches of skin on your face in 1996. Maybe you think doing that is a colossal waste of time and energy and a very silly thing to do. And you’re right: good on you and carry on not doing it. That’s probably why you’ve never been sent to a psychologist and I have.
I had a terrible year in 2013 – you don’t need to know the exact reasons why. There’s a difference between sharing one’s experiences and doing a humiliating dance dressed only in your dirty laundry. Just take it from me, it was terrible. Worse than the ending of “Lost”. I was a burden then, I know: to friends, to family. And I was in a parlous state. I went to see Dr McBride after one horrible day and she called Dr Mizara immediately and I was given a last minute session with her (she kindly flexed her schedule to accommodate me). When you are at your lowest ebb you expect friends to tell you that you are worth something but you don’t really believe it. When a medical professional tells you this and gives you coping strategies and insights it enables you to take bigger and bolder steps when all you feel like doing is curling up into a ball or drinking all the whisky in England (which I’m aware is probably not the best stuff but weepers aren’t inclined to be choosers). I am indebted to some very good friends for getting me through this period: but without the commendable empathy of those practitioners at the Royal Free I think I would have leant on my long-suffering chums to an even greater and more tedious extent than I did (so Peter, Caimh, Shauno, Dig, Susie, Mum and the rest, I think Dr Mizara and the dermatology team should be top of your list of People You Owe A Drink To For Saving You From Even More Nights Of Repetition And Tears With A Lachrymose Doctor Who Fan).
I have been seeing Dr Mizara less frequently recently.So much in my life has changed. I think when someone works so hard with you there is almost a childlike, puppy dog need to tell them what you have achieved – and in doing so you see how far you have come. “I’ve been going to the gym”, “I haven’t had a drink”, “I’ve written a play!” I’d pant, dropping each metaphorical ball at her feet and waiting to be told I was a good boy. I mean, just as needy but so much better than “Why does nobody love me?”.
Last Thursday’s appointment was a formality – just to see how I was doing. I hadn’t been in for a while. To coin the correct phrase, I have coping strategies in place, for many of those things that used to (and still do) give me grief. I have made progress. Life will still never be easy (it isn’t for anybody), but so long as I can continue to not fixate on the past, to look at things from other people’s perspective and realise that not everything they do is about me, to take less destructive paths, and essentially just chill the fuck out (OK, that last one is mine, but it’s pretty much the gist of it) then maybe I can make this journey tough life – the only one we get folks – a bit less of a perilous ride. It would be ridiculous to go to my grave having spent far more of my time worrying about the bad things that might happen (another psoriasis patient meme) than enjoying the good ones that do.
When she told me that I didn’t need to come back I was a little scared but the biggest emotion I felt was one of massive gratitude. I know it’s her job but what a profession to choose. It’s the equivalent of seeking out that maudlin git in the corner of the pub who keeps whining about the bad things that keep happening to them when it’s clear to you that they just need to stop doing what they are currently doing and then maybe they’d be alright. But I needed help that I never would have asked for and I got it. And when she said goodbye I felt tears leaping from my eyes, and I wasn’t even on stage. Nor was I being someone else.
I was being Toby and, crucially, I actually didn’t mind.
There are patient testimonies about seeing Dr Mizara for a number of skin conditions here.
Dr Mizara talks to the Telegraph about the relationship between the mind and the skin here.
I wanted to to an update in September entitled “Oh f*ck…” because after a year of being pretty clear I went on holiday, to the sun.By the time I came back, I knew that the tiny little flecks of colour on my skin, and the fact that I felt a bit itchy and uncomfortable, meant that my psoriasis was on the march again. I thought it might be useful to chronicle its unwelcome return to my too too unsullied flesh as it happened. But in a way, I felt that might aid it in its campaign to take root on my body again – plus I was a bit depressed about it – so I didn’t. Now, however, I have an approaching deadline for a play I am meant to be writing, so what better time to give you all an update…?
As we know, the sun can really help clear up the skin, so a week of Verona’s beautiful Vitamin E flavoured illumination, plus the resultant relaxation, would only be good.
I had been a bit worried by all the stuff I read in the papers about Doctors prescribing too many antibiotics and how bad that can be.So I asked Dr McBride if perhaps I should give my body a rest. She didn’t really think I should but said that if I was going to it would be safer over the summer when my likelihood of picking up a throat infection would be minimised. What she didn’t tell me to do was give up taking them just before gong on an aeroplane with all its recycled air and close proximity to other people’s germs. But I did. And so I picked up a bit of a streptococcal throat infection and despite the success I have had with my biologics, my arms – and gradually the rest of my body – started showing the tell tales signs of an outbreak. My body temperature also fluctuated and I was extremely agitated by the itchiness that dominoed with goose bumps all over my frame. At one point I thought that these metamorphoses would lead to a spell in hospital, as the last time I’d had a similar resurgence it didn’t abate until it totally wiped me out. I’m used to the odd period where the back of my arms or my elbows and knees have discolouration and dryness, but when the softer skin of the torso or that hardier suff on the back of the hands start showing signs of plaques I know I am in a bit of trouble.
This has been a bit of a bind.Just as there’s an argument that loving and losing is a hell of a lot more painful than never having loved at all, I was perhaps knocked sideways a little because I had started to take a pain free, smooth outer shell for granted. It looked like I was about to be plunged into a revisitation of the dark old days and so I got not a little distressed (which, of course, helps the condition to wage its war). Fortunatley, Doctor McBride wasn’t too concerned, reassuring me as ever that this was normal and that even if it turns out that the biologics aren’t strong enough to help me then there are other options and I mustn’t despair. For now though, the blame is firmly on the sore throat – so back on those antibiotics – and I’m continuing my treatment as before, but with a greater attention to the application of creams and lotions in order to manage this upsurge in plaques.
A couple of months later and I am still covered – but it is not as widespread nor painful as previous major outbreaks.It is a disappointment after such a period of fantastic progress, but it is certainly not as bad as it has been in the past. Everything is relative. I’m mostly stricken on the back of my arms, my knees and the back of my ankles, but it is not too flaky nor is is cracked and raw. I didn’t have to do to hospital and the itching has abated. So while I don’t especially like what I see, I know all too well that I could be feeling a hell of a lot worse.
In the meantime, the other side effect of the holiday is a massive rise in my cholesterol (8.5 having been at a brilliant – for me – 5.2)which is cause for serious concern so I have had to employ the services of a personal trainer and am actively eating and supplementing myself with things specifically designed to make this high figure drop. My blood tests in Decemeber will indicate just how happy a Christmas I will be allowed to have.
Lessons learned– (i) Don’t stop taking prophylactic antibiotics before getting on a plane and (ii) the Italians may well have a relaxed attitude to the consumption of wine and ice cream, but you are not an Italian (iii) it could have been a lot worse.
I had a lovely holiday though. Sun, sea, sand … the scabs didn’t come till later!
Despite advice from a media savvy friend that one should do so, I’m not the type of person who reTweets anything that praises me. I just reply and say thank you. I am not sure what is to be achieved by yelling out to cyberspace that someone likes your work. It comes across as either needy or narcissistic and I don’t want to be either of those. You wouldn’t go up to somebody in a pub and say “Look, John from Doncaster thinks I rock and @twinkletoes says I’m hot and funny”.*
(*in the interests of full disclosure, those were made up names and comments – NO-ONE has ever Tweeted that I’m hot and funny).
So with that in mind, I post the words below NOT because they say once things about me but because the Manchester Psoriasis Shout Out was designed to highlight to people with this condition that they are not alone and that there are resources and methods that help. From the feedback below, it seems we did our job. So if anyone reading this does feel isolated or at the end of their tether with this horrible condition than please have a look. And then maybe drop me – or some of the groups I will link to underneath -a line.
I present it unedited…
Here’s how I feel about the psoriasis shout out and how it’s effected me since.
I first heard about the shout out back in April through Helen the Flaky Fashionista and Tony [sic] Hadoke. They both had reached out to me some weeks before via twitter when I was at a very low point with my psoriasis. I had searched the hash tag #psoriasis and came across Helen first. We started to chat about various treatments etc, and then she introduced Toby to the conversation. At that point, knowing there were two separate people outside of my family who knew and also suffered from the disease was somewhat comforting. It truly gave me hope, and actually brightened my day. After a few conversations, they both mentioned about the ‘Shout Out’ campaign being run. I knew I had to be a part of it, even by just attending. I was also asked to take part in Helens fashion show and initially I agreed, but soon bottled it as I was scared of standing there and people staring. Looking back, I truly wished I did take part as I’ve since learnt to embrace my P and no be embarrassed any longer. I came to the event at Salford Royal, just as the flash dance started. I immediately felt myself welling up, I couldn’t believe that all these people were getting up and dancing for psoriasis – it was amazing. I went over to the van and spoke to some amazing people. I was slightly overwhelmed, and had a lump in my throat the majority of the afternoon. At this point my P wasn’t as bad as it had been on my arms so I was able to wear short sleeves, but my whole mental state was a mess. I felt low, ugly, angry and quite hateful. All of which slowly went as the afternoon went on. I was introduced to Helen and Toby, and I was slightly nervous. I was nervous because in the few weeks id had spoken to them on twitter, I’d become slightly in awe of their work for raising awareness and the like. I couldn’t get my head round how accepting they both were (to a point) of the P. We sat down and had a chat, and it was nice to just be truly honest about how you feel etc. We also made a few jokes about P and leaving skin around. Which, if you’ve ever suffered from P, you’ll know you need to maintain some level of humour to keep you sane.
Complimentary massages were on offer, Which I heard were fab. But one of the things I was keen to see was the mindfulness session and the talks about the future for P. I went into the mindfulness session with a very open mind – I know my limits and I know sitting there nice and quiet is beyond me. But I did it, and initially I thought this isn’t for me at all. But the weeks after I would say I utilised some parts every now and again. It was wonderful to hear the talks from everyone, it’s lovely that people actually look at P and think I’m going to do something about this. It’s not the most glamorous disease there is after all.
A real highlight of my day was meeting another sufferer called Russ. He’s amazing. He has both P and PSA, but he was still smiling. He read me his poem, I can’t explain how I felt but he hit the nail right on it’s head. Again, I turned into a girl and started crying. It was at that point I told myself to wind my neck in and just accept what is and move on. When I left, I called my mum right away who is also a P sufferer. And she was gutted she couldn’t get the time off work to come. She said that she could hear a change in my voice and said I sounded more brighter then I had in months.
Unfortunately, I’ve since had a flare up and was admitted to the ward. I was on there for two weeks, and it felt like therapy. The nurses ask you upon admittance what’s most important to you? I looked round and most people had put things like go home or get better. Mine was to wear shorts – I’m a girl, and I’ve pretty good legs apart from the scabs. I felt that the admission was the ending I needed to finally accept my P and embrace it as part of me. With the help of all the wonderful staff and patients I feel I’ve done just that. I’ve been out of hospital two weeks now, and the weather is scorching, perfect time to get my legs out in a pair of shorts. Yes I’m flake free for the first time in over 10 years, and it feels amazing.
I truly believe that the Helen, Toby and the shoutout were my turning point and is love to be able to help others out. So sign me up for next years shout out xxx
My thanks to Rebecca for letting me share her feedback.