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Summer is officially over and yet I am still walking round screaming in agony with massive sunburn.
And I don't even sunbathe.
I've had eczema ever since I was 3 years old. It varies from a minor irritation to an all-over layer of agony paint, making me scream if I do something stupid like move, or attempt to wear clothing, or brush up against a dust mote. This past year has been one of the bad phases, resulting in a prolonged program of UV treatment: thrice weekly visits to a medically approved NSH sunbed / internationally condemned torture chamber.
Early on in the treatment it's quite fun. Turn up, strip off, thirty seconds of warmth, clothes on, and walk away to hold marvelled philosophical discussions about how you're being cured by light itself, and who would have believed it, and it's medical science gone full circle back to nature, and woooo and wonderous and wow. I'm towards the end of the course now, and finding that yes, five minutes can contain several eternities, especially when you're shut in a small metal box surrounded by strips of artificial sun, trying to balance in the awkward position that seemed like such a good idea when you were only in for thirty seconds but is now dragging every single muscle into cramping agony but you can't move because the whole point of starting with low times and working up is so that the skin gets used to it, but even so some parts get more exposure than others so changing position mid treatment could lead to sudden exposure and severe burning, and it's getting hotter and hotter and you're going to die in here, for real this time... and then one more eternity and the machine pings off and you're free to go.
And there's a rush of cold air and freedom and you have a few hours to enjoy it and try not to think about where the sunburn will strike this time. Because it always does.
In one way it was worse at the height of summer (yes, that week and a half). I'd be walking down the street, covered from head to toe in factor 2 billion sunblock and cotton, every inch of semi-exposed flesh glowing like a nuclear-accident tomato about to start growing rapidly in size and devouring city blocks. I kept fighting off the urge to rush up to people and explain in manic tones that I wasn't some irresponsible sun-worshipper, but that it's a medical condition, damn it! Or at least the treatment for one! Or at least... but I'd see the eyes glaze over as soon as I got to the bit about the tomato.
But now? Not only does the sunburn HURT, but it also keeps making me think of beaches and parks and pubs in the afternoon and ice creams and cut grass and plunging feet into ice cold water and garden parties where you're too drunk to realise this is still the UK and it's still bloody freezing after midnight even in June, and all those things that everybody else is now neatly packing away for another year in the little trunks in their heads maked "summer" but I keep being reminded of every time I feel my cheeks glow.
It feels different from the glow of a sharp autumn wind, you know? I don't know whether that's in my skin or my mind, but it does.
I had a treatment this morning, so right now I am riding a fair amount of hurt and a lot of heat. As tomorrow is not a UV day, I am making the most of it and currently dosing myself up on margarittas, red wine and chocolate biscuits. (Trust me, you don't want to be suffering a red wine hangover when you are perched on a tiny stool in a white-purple-hot industrial microwave ladened coffin. Established drinking patterns therefore bow down to treatment routines, meaning Friday is very definitely a dry night.)
It's worth it. When the pain from the UV exposure dies down, then I have the glorious sensation of being able to treat my skin as just another part of my body. I can actually ignore it and leave it to get on with whatever the hell it's meant to do when it's not torturing me, and not jump at the whim of every itch, twitch and throb. I get to feel normal for up to 24 hours at a time.
Right now, when I have lines of fire from my elbows up to my armpits and back down my sides, and I'm trying to type by moving my fingertips alone, it's good to remember that. And it's this final oh-my-god-I-am-going-to-die-in-here sessions that will hopefully keep the skin claer longterm, so it's worth it. It has to be.
The thing that pisses me off most of all? It's not even like this is a real disease, not in the deadly sense. I know people dealing with death-dealers like cancer, people living with the it'll-kill-you-if-you-slip-up-on the med's of type 1 diabetes and thyroid deficiency. Compared to those eczema is nothing. It's just jumped up dry skin that got too big for its boots. But that's why it can be doubly irritating when it makes my life a pain-ridden hell and leaves me drugged up and bed-ridden. I just wish it would remember how bloody insignificant it should be, and sod off and leave me in peace for a bit.
(Originally posted on Warren Ellis's Open Mic Night. Because I'm better at performing for celebrities. Some of you lot get famous and make me write more, please...)
And I don't even sunbathe.
I've had eczema ever since I was 3 years old. It varies from a minor irritation to an all-over layer of agony paint, making me scream if I do something stupid like move, or attempt to wear clothing, or brush up against a dust mote. This past year has been one of the bad phases, resulting in a prolonged program of UV treatment: thrice weekly visits to a medically approved NSH sunbed / internationally condemned torture chamber.
Early on in the treatment it's quite fun. Turn up, strip off, thirty seconds of warmth, clothes on, and walk away to hold marvelled philosophical discussions about how you're being cured by light itself, and who would have believed it, and it's medical science gone full circle back to nature, and woooo and wonderous and wow. I'm towards the end of the course now, and finding that yes, five minutes can contain several eternities, especially when you're shut in a small metal box surrounded by strips of artificial sun, trying to balance in the awkward position that seemed like such a good idea when you were only in for thirty seconds but is now dragging every single muscle into cramping agony but you can't move because the whole point of starting with low times and working up is so that the skin gets used to it, but even so some parts get more exposure than others so changing position mid treatment could lead to sudden exposure and severe burning, and it's getting hotter and hotter and you're going to die in here, for real this time... and then one more eternity and the machine pings off and you're free to go.
And there's a rush of cold air and freedom and you have a few hours to enjoy it and try not to think about where the sunburn will strike this time. Because it always does.
In one way it was worse at the height of summer (yes, that week and a half). I'd be walking down the street, covered from head to toe in factor 2 billion sunblock and cotton, every inch of semi-exposed flesh glowing like a nuclear-accident tomato about to start growing rapidly in size and devouring city blocks. I kept fighting off the urge to rush up to people and explain in manic tones that I wasn't some irresponsible sun-worshipper, but that it's a medical condition, damn it! Or at least the treatment for one! Or at least... but I'd see the eyes glaze over as soon as I got to the bit about the tomato.
But now? Not only does the sunburn HURT, but it also keeps making me think of beaches and parks and pubs in the afternoon and ice creams and cut grass and plunging feet into ice cold water and garden parties where you're too drunk to realise this is still the UK and it's still bloody freezing after midnight even in June, and all those things that everybody else is now neatly packing away for another year in the little trunks in their heads maked "summer" but I keep being reminded of every time I feel my cheeks glow.
It feels different from the glow of a sharp autumn wind, you know? I don't know whether that's in my skin or my mind, but it does.
I had a treatment this morning, so right now I am riding a fair amount of hurt and a lot of heat. As tomorrow is not a UV day, I am making the most of it and currently dosing myself up on margarittas, red wine and chocolate biscuits. (Trust me, you don't want to be suffering a red wine hangover when you are perched on a tiny stool in a white-purple-hot industrial microwave ladened coffin. Established drinking patterns therefore bow down to treatment routines, meaning Friday is very definitely a dry night.)
It's worth it. When the pain from the UV exposure dies down, then I have the glorious sensation of being able to treat my skin as just another part of my body. I can actually ignore it and leave it to get on with whatever the hell it's meant to do when it's not torturing me, and not jump at the whim of every itch, twitch and throb. I get to feel normal for up to 24 hours at a time.
Right now, when I have lines of fire from my elbows up to my armpits and back down my sides, and I'm trying to type by moving my fingertips alone, it's good to remember that. And it's this final oh-my-god-I-am-going-to-die-in-here sessions that will hopefully keep the skin claer longterm, so it's worth it. It has to be.
The thing that pisses me off most of all? It's not even like this is a real disease, not in the deadly sense. I know people dealing with death-dealers like cancer, people living with the it'll-kill-you-if-you-slip-up-on the med's of type 1 diabetes and thyroid deficiency. Compared to those eczema is nothing. It's just jumped up dry skin that got too big for its boots. But that's why it can be doubly irritating when it makes my life a pain-ridden hell and leaves me drugged up and bed-ridden. I just wish it would remember how bloody insignificant it should be, and sod off and leave me in peace for a bit.
(Originally posted on Warren Ellis's Open Mic Night. Because I'm better at performing for celebrities. Some of you lot get famous and make me write more, please...)
no subject
If you feel sunburned then you're in there too long! You should tell them and they'd either hold the dose or reduce it.
no subject
Last time, which was a few year ago, the whole thing seemed to be to keep bumping you up as quickly as possible, unless you were actually blistered and peeling. Right up to the point where I felt like things were improving only to be told "Okay, that's enough, stop right here" even though I was only just starting to clear up eczema wise.
It's still mainly the same nurses, I recognise a lot of them, but it's like a whole different clinic... the atmosphere has changed so much. Every session, even the very early ones when I had no problems, I was being asked each time "Are you happy to go up? Or do you want to hold or lower the dose?"
Each time I've had burning, they've listened carefully to what I said, examined the skin, and advised as to whether I want to go up, down or stay the same... and then left it up to me to make the decision. And the doctor has been happy to talk me through what's a safe level of redness afterwards. So the times when I have burned, it's been up to me what I do for the next treatment... and there's been plenty of times when half a day of soreness has been more than worth it for the benefit I received.
I was expecting them to say at the review this time round "That's as clear as we can get you" as I'm mostly okay, but still have bits and pieces of eczema on my inner upper arms and my ankles. But the doctor explaine that with the normal stance, those are the bits that get least UV, so it would be worth standing on a stool and raising my arms for an increasing period each time. The trouble is it;s up to me to time those periods, so I've obviously got it wrong this time.
But they are taking very good care of me - as I said, it's a world of difference from the times before when it felt like the nurses had no say and were just reeling it off by the book, and the doctors barely spoke to you. I feel like I can walk in on Tuesday and tell them what this weekend has been like, and that I'll be able to trust in whatever they advise.
It still hurts right now so I still feel like bitching ;-) But it's at the Universe in general and my skin in particular, not at anyone involved with the treatment - which makes such a difference :-)
no subject