Tag: the itchy and scratchy show

Dear Diary. I thought you might like an Eczema Update. It’s what we’re all here for, right?

I no longer claw at myself like a thing deranged. I’m not germy. I’m not bleedy. I’m not sleeping all day. I’m not confined to the house. I am much, much, much, much better.

And yet it continues.

The NHS have a “clinical pathway” for eczema. It goes steroids > phototherapy > immunosuppressant > biologics.

Today I arrive at biologics, meaning that my eczema is finally understood by medical practitioners as “completely bananas” and that nothing else really works. If the biologics don’t work, there’s nothing science can do for me.

But I have faith.

Despite everything.

Steroids were what made me properly ill last year. They sort-of work on eczema (but not really) and the side effects of long-term ‘roid use are appalling. Most doctors don’t advise anything beyond the steroid step of the clinical pathway for some reason. No idea why. All steroid creams and pills come with an information leaflet that tells you not to use it for longer than a week; pharmacists make the same dire warning when you buy it over the counter. They give you a stern look, knowing full well you’ll do what the fuck you like with it as soon as you get in the door, forbidding you to use it on your face ever and nowhere on your body for longer than a week. GPs don’t seem to give a shit about any of that. They’ll have you on it for years. Decades! Which is how I ended up disabled for five months last year. Cheers lads.

Phototherapy means reporting to hospital thrice weekly to stand naked but for a posing poch in stand-up sunbed thing to be blasted with light rays. It took ages for this treatment to have any effect on my eczema and I had to pause the treatment halfway for sunburn. I went through this shit twice. It sort-of worked, but only for a few weeks. The eczema just came back and you can’t keep getting the phototherapy lest it give you superpowers or cancer. Well, at least they heed the warnings on this one.

The immunosuppressant — a self-injected concoction that tells your immune system to stop freaking out over nothing — actually worked. I was largely eczema-free while I took it. It just made me poorly in other ways. I found myself nauseous to the point of collapse for at least one day a week. Don’t get me wrong, it’s better than debilitating eczema, but I can live without it. I’ve been off the treatment for two weeks now and the eczema is coming back. I’ve had some very satisfying scratching sessions.

So now it’s biologics time. So far as I can tell, it’s basically nanotechnology.

The injections are hand-delivered by a special company with a refrigerated van and must be placed directly in the fridge next to the yoghurts as soon as they arrive. Which I have dutifully done. The meds come with a huge wad of literature, a plastic sharps bin, and an app to download. I think it’s all supposed to make me feel less nervous about taking the injections, but it really serves to have the opposite effect.

Ah well, bottoms up.

Dear Diary, I am well again. Thought you should know.

Friend J sends me this Limmy video. I think he’s implying that it’s is what most of my outgoing email sounds like at the moment. He is right.

In bed with eczema today and reading science fiction.

I may not have escaped my certain fate after all.

Gah! Just as I’m trying to find some distraction in this world, here’s some very good eczema writing by Rebecca Gisler in About Uncle.

My brother and I have the same flaws, and the first of those flaws is that we have eczema, which is to say that, rather than protecting us from external aggressions, our skin itches endlessly, and it goes rough and dry like old crocodile leather, and it cracks and it fissures and it furrows, because over the years raking that defective skin has become as natural and unconscious as breathing, and some people say our skin is too fine for this world, that we’re allergic to it.

and

from the emptiness deep down inside us, from the stirring and throbbing of the emptiness inside us, and that’s what turns us into these louse-infested beasts, these fleabags, these bundles of nerves that no balm can soothe, but enough whining because it’s also true that scratching when you have an itch, even if it’s all the time, where you have an itch, even ifs everywhere, brings an intense pleasure and deep satisfaction, and we could easily devote our days and weeks to it, reducing ourselves to sawdust and shavings with fingernails and rasps and anything else we might find at hand, never thinking of the consequences, not thinking of anything, thinking of nothing, the very nothing than binds my brother and me, the reason we’re never at peace.

Still unwell with the old eczema, I’m starting to worry about a trip to London I have to make on the 29th.

It’s an overnight trip for the film and I found a hostel ten minutes from where we’ll be working. As well as providing a bed for the night, I could use the hostel during the daytime (after 3pm anyway) to dip out of the shoot for some sudocrem and a lie down if things become overwhelming.

I went to book it today and – whaaaaa? – there’s an age limit. You can’t stay there if you’re over 36. I’m 42.

I stay in hostels quite a lot these days, but I’ve never seen that before. In fact, one of the things I like about hostels is the diversity of the people staying in them, different age groups being one of the things I’d noticed. When evangelising about hostels as a way to see the world, I’d even told people that “youth hostel” is a misnomer these days.

After abandoning a plan to buy a Central London building to start my own hostel exclusively for the elderly, I managed to find an alternative one. Cheap place to stay in Notting Hill are few and far between though, so the hostel I’ve booked into is a 25-minute walk from the shoot.

Pray for me, everyone. I am itchy and sore and seeping and at my wit’s end.

But I WILL be in London to talk to a man famous for melting ice in the 1980s.

UPDATE: It didn’t happen. I had to cancel.

Soothing my eczema in a Dead Sea salt bath.

I find myself scratching and realise it’s to the rhythm of Samara who, in the kitchen next door, is grating a synagogue’s worth of horseradish for tomorrow’s seder.

It feels very, very Jewish in here.

I’d better open a window.

Today saw my last-but-one phototherapy appointment at the hospital. It was my 25th session and I’m feeling crumbly.

My eczema is much better for the treatment, but it dries me out so much that I sometimes look like Jacob Marley from Scrooged. What do you mean, you don’t get that reference? It’s top-five Bill Murray. Kids today. Fine. Pictured above.

It’s hard work as eczema treatment goes. I have to vaccum the flat every day lest we become ankle-deep in flakes.

Unfortunately, I shed as fast as I can suck so it makes no difference. I’m like that cleaner from the Monsters Inc. factory who leaves a trail of slime as quickly as he mops. That a better reference for you is it? Kids. Honestly, I’ll have to start putting up signs. “Your brow must be this high to ride this ride.”

The best shedding day saw my whole back peeling off in big salty curls. For a morning I knew what it was like to have feathers.

I plucked one off deliciously, saying “thish one’s a keeper.” Any good? Goldmember. 2002. Dividing the room that one, I can tell.

“Don’t pick it,” said Samara don’t-fall-off-you’ll-spoil-the-holiday Leibowitz, “get your creeaaam.”

If I had a penny for every time I got my creeaaam…

Anyway. As I said, today was the last-but-one session. I got in the tube and was blasted with the now-familiar UV rays. Well, I say “now-familiar” but there was a lot of excitment at the hospital this week because, and I quote, “we’ve got a new bulb.”

The dematology nurses have become used to me and I can tell they’re going to miss my Singing Detective references. There’s an end-of-term vibe in the department and they keep asking me what I’m going to do next.

Well, they ask me that every time, but they usually mean in the short term. “Home to get my creeaaam,” is the only answer I can ever give them.

But they mean longer-term now. Travel plans. Career moves. That sort of thing. They’re moving on themselves because the hospital is being demolished. These appointment have been like stepping into a chapter of Swing Hammer Swing! Look, don’t make me tap the sign. Jeff Torrington didn’t die for me to have to tap the sign. This high, I said.

My first walks to the hospital looked like this:

But now they looks like… well, I haven’t taken a picture of how it looks now because it’s not very dramtic, but this shot should do the job:

My final session is on Monday, which is lucky because I’m not sure I can lose any more parts. I’m to feel like Brundlefly. No good? Oh naff orf.

And then, as I told the nurses, I fly to Paris to begin a two-month period of travel. Paris, Utrecht, Amsterdam, Barcelona, Zagreb, Belgrade, Athens, and (assuming they let me in) Montreal. Beat that.

I didn’t say “beat that” to the nurses. While I’m out there, they’ll be stuck here, breathing concrete dust. Mind you, I’ll be still breathing bits of myself wherever I go.

I’ll miss my little chats with the nurses. I’ll never see them again, but, if they want me they can follow the trail of feathers.

*

If you’re affected by cripsy skin, call the National Eczema Society on 020 7281 3553.

Boys, Boys, Boys
Are you looking for a good time?
Boys, Boys, Boys,
You should come and pick my scabs