March. That was quick.
I had a good weekend, it was full of delicious food that was bad for me, good places I hadn’t been for a few years, and people I love.
Work has been good. Getting my hands dirty on a range of projects, some of which were using software I had no idea how to use. Half the time I was really just trying out whichever buttons looked the most like what I wanted. Despite that they turned out ok and I learnt a few tricks via googling while I worked.
It’s a quieter week in freelance work and I’m grateful. Coming home from work and facing another few hours nutting out problems is rewarding but exhausting.
Having said that I spent my entire last freelance pay on two pairs of shoes, completely forgetting that the $US to $AUD conversion was now so shit. I thought I would have to fork out $40 bucks on top of the pay, but it turned out to be more like $80. Still, that’s almost like paying $80 for two pairs of shoes which is quite reasonable. Freelance money doesn’t feel like real money and I am completely ok with spending it all immediately.
My skin is not so great. It’s a constant battle of temperature, moisturiser and self control. I wake up dry and flaky every morning. I have to oil my skin down just to move without feeling like I’m stuck in a body suit 2 sizes too small for me. I drive east facing the sun for an hour and a half to get to work and my arms and chest warm up and itch and I resist until I can’t, then I’m ripping my arms to shreds with my nails. I turn the air con up and slather on a heavy emollient but within minutes I’m scratching them again. Through the day at work if I’m not completely focused on something I’ll start scratching again. My legs are the worst at the moment, rashy, broken skin all over my shins and behind my knees, my thighs. I scratch through my jeans so hard my nails are splitting. When I get home the first thing I do is get out of my jeans and scratch myself into a trance. If you don’t have eczema/tsw you have no idea how good it feels. I don’t know if it’s a response to the pain with endorphins or whatever but it’s fucking orgasmic - and I regret it every time. Every night I do it my skin gets a little worse, and I’ve easily had terrible skin on my legs for over a month now. I’m trying to stop. I’m trying to moisturise and cover my legs as soon as I get home. I’m trying to ice them and keep my hands busy and go and do something, eat something, make something instead. It’s not working.
I don’t know why it took me so long but I realised a few weeks ago that I have a high pain tolerance because of my skin. I was always the kid in school that thought needles were ok, and back in my going out days I was always the one still in my heels at 3am. I don’t think piercings hurt too much, I don’t know about tattoos yet. Despite that I still procrastinate about taking a shower now. Showers hurt. Any sort of water on my skin stings like fuck. I mentally prepare myself as I get in the shower and it still makes me bite my lip as the water hits my skin.
I don’t even have it that bad. All you people doing TSW out there in the rough stages of broken burning skin are amazing. Fuck this tsw shit. I hope you’re all doing better.
Sigmacort. Egocort. Elocon. Diprosone. I’ve been using these brands of topical steroids since I was a kid. By early 2013 I had only been using a small amount of steroids on my face and my fingers where I sometimes had cracked and broken skin. I was using it less and less often, so when my prescription ran out and my skin was pretty good, I thought huh, maybe for the first time in my life I can go without a refill.
A few weeks later I was getting this bright red, burning rash on my neck that I tore through over and over again with my nails. I iced it, I took antihistamines, I slathered it in moisturiser to no avail. Similar patches came up on the insides of my elbows, behind my knees, on my stomach and on my forehead. I couldn’t make any sense of it, my body had been clear of eczema for years, the only areas I had struggled with were my fingers and eyelids. I racked my brain for anything I’d changed in my lifestyle since the rash started, I hadn’t been exposed to grass or pollen, I hadn’t changed any of my skin care, shampoo, conditioner, make up, I hadn’t changed my laundry detergent, I hadn’t suddenly started eating any new foods. Those things might sound minor to you, but to an atopic they can be all the difference between good skin and a burning itching nightmare. I finally realised the only thing I had changed was that I hadn’t refilled my steroid prescription.
Say what you will about online medical research, (everything is cancer) but I started to research the effects of discontinuing steroids as an eczema treatment and found a lot of references to massive flaring and a fairly horrible time in your life while your skin tried to adjust to not being slathered in drugs. Drugs that work by constricting the blood vessels in the application area, reducing inflammation and the itching sensation. A drug that makes your skin bearable, but causes dependance.
You might be thinking, yeah but you’re meant to use steroids one week on, one week off! That will prevent dependance! Let me tell you what eczema does to you - it makes you desperate. Someone hands you a tube of cream that means you’re not itching every five seconds. That means you can have a shower without wincing in pain, that means you can wake up without blood on the sheets, that means you can do exercise and sweat without wanting to rip your skin to shreds afterwards, that means you can wear make up. I could go on. They hand you that cream then they’re like, oh just use this stuff for one week, then stop a week, and repeat that ok? When it doesn’t really work like that, you go back and they’re like oh don’t worry then, just use it whenever you need it. In fact, here’s a prescription for 3 more refills. Begin steroid abuse cycle.
1. You are born atopic. You have rashes that seemingly have no cause.
2. Cue food/allergy/environment tests, no real results. You’ll probably be told you’re allergic to dust mites and pollen, to have lukewarm showers, to use moisturiser, to give up pets and rip up the carpet. You do these things. Nothing changes.
2. Your doc writes you a prescription for topical steroids, starting with a weak one
3. You apply the steroids. The rash goes away.
4. The rash comes back.
5. Repeat 3 and 4 over and over again until tachyphylaxis sets in, the magic tube of steroids doesn’t work anymore.
6. Return to doctor, receive prescription for stronger steroid.
7. Repeat 6 until you’re on a Class IV steroid. Use that until it stops working too.
8. You’re pretty fucked. Your skin has acclimatised to a topical steroid 600 times more potent than hydrocortisone. You keep applying it but it doesn’t seem to have any effect, you have raw, broken, intensely itchy skin. In more serious cases you might be moved onto oral steroids or even steroid injections. They work as long as you keep using them. As soon as you stop, you’re back to square one. You can get addicted to these too if you keep using them long enough.
Topical steroids cause dependance. Yeah, it’s a thing. I don’t know why most doctors avoid the topic, but it’s a fucking proven fact that tachyphylaxis occurs with topical steroids. No doctor I’ve ever been to seemed to care about that, they just moved me onto a different strength or brand and pretended it was all ok. The other day a friend sent me a link that showed that finally, finally the NEA is acknowledging that topical steroid addiction exists, and that they are carrying out research on it. You can find it here. Maybe if doctors and organisations can finally recognise that something that’s been touted as a solution for so long is actually harmful, we can move in the right direction. On the other hand, some of the NEA’s biggest financial contributors are large pharmaceutical companies - companies that obviously know what their products do and don’t give a shit. Don’t tell me I’m being a cynic, we all know the cases where pharmaceuticals have ignored the side effects of their drugs. I have quiet hopes that this massively delayed research will finally acknowledge that steroids are addictive.
In the meantime, what do you do? You have to quit. Prepare yourself for 6 to 24 months of struggle street. The research shows that before the advent of topical steroids, nearly all sufferers grew out of eczema in their teenage years. Not to say some people don’t these days, but now the majority of people suffer from some effects of “eczema” their whole lives. What they actually have is a topical steroid addiction. If you’re thinking about quitting I strongly suggest you do your own research and take some time to prepare yourself before actually stopping. It will take over your life, I’m not even kidding.
Here are some resources to start off with:
ITSAN, National Library of Medicine, Dr Fukaya, Dr Fukaya again, AAFP, Dr Bailey, International Journal of Dermatology, Indian Journal of Dermatology, National Library of Medicine, another one from the National Library of Medicine, Health Matters, and the NEA link again.
Forums and blogs of people who have been through/are going through topical steroid withdrawal:
ITSAN forum, Louise, Lesley, Kiera and her mum, Tomatoskingirl, Leizel, Eczema Excellence, Healing the Red, Miss Kitty, Jenny, TSWEczema, Eczema Healing, This Itchy Life, Anti Steroid, 35 Years of Hell, Skin of Rose, Bye Bye Steroids.
A link to all my tagged posts here.
It’s worth noting that whatever these blogs are called/whatever treatments they describe, the only real change they have made is that they have stopped using topical steroids. There is no “cure” for eczema, your body just needs time to get off them.
No amount of sensible voices in my head can make want to give up buying a leather bra for a festival I’m going to soon. It’s impractical! It will probably be 30+ deg that day! You will never wear it again!
I still fucking want it.
It’s 2:45 am. I could sleep but I don’t want to.
The start of the year has been good, I’ve been hitting my tiny goal of half an hour a day working on something on my to do list this year. Work has been slow, was stuck doing retouching for the majority of the last two weeks and it was fucking killing me. Finally moving on to some design and it was like a breath of fresh air. Finally being able to use my brain to solve something instead of being a pair of hands that masked out images and dragged sliders back and forth.
Haven’t started my poster for January yet. I’ve got the sketch but just getting onto creating it seems like a huge hurdle. I just need to start then I’ll get into it.
I’ve been sitting here scrolling through the personal tag on tumblr for nearly two hours. With all the posts jumbled together it’s like strolling past people’s lives all lined up and peeking through the windows. There is some beautiful writing hidden under that tag, writing that spans the whole spectrum of human emotion.
I still have those three posts sitting in my drafts folder. My writing is rustier than I thought, I can’t seem to get them to a state that I’m happy with. Another filler post.