I detoured on the way home at work to buy a candle tonight because I had a sudden craving for one. I have a freelance brief I’ve been putting off, a complicated page for a busy, info heavy website. I’m exhausted. I think, maybe a nice candle will help me sit down and tackle this son of a bitch. Nup, now I just wanna take my candle with me and go have a long hot bath.
My skin has been intensely itchy the last few nights and I haven’t been sleeping much. It’s not too broken, just bone dry and ferociously itchy. It’s almost worse when it’s not broken, because I feel like I can scratch harder without doing damage, and that just perpetuates the scratching cycle.
I toss from 1 til 5, trying to sate the itching behind my knees, my ankles, my shoulders, my neck, my elbows, it taunts me and moves every time I think I’ve gotten rid of it. I check the clock when I can’t bear it anymore, surely it’s 7 and I have to get up. But the hours drag, even an antihistamine does nothing anymore. I can’t take any more than one Phenergan because I have to drive to work in the morning. I pass out somewhere around 5 and wake up to my alarm at 6:45. I snooze three times for five minutes each and drag myself out of bed at 7.
I’m dying for summer. I need to get into the ocean and let the salt water and sun burn away my eczema. It stings like fuck but it works every time, better skin from a single day at the beach, healed by the end of summer. I’m too pussy to go when it’s cold so I put up with this shitty, crusty excuse for skin.
I’m tired. I need my skin to stop being so motherfucking attention seeking so I can sleep and do work and have a life. Maybe I’ll just stay up til 5 doing this freelance job, it’s not like I’ll be sleeping anyway.
Whiny post is whiny. I know I don’t even have it that bad , a lot of you guys going through TSW are going through hell. I should shut up and be grateful.
TSW Month 27. Part 2.
What living with eczema / tsw looks and feels like. I would call myself body confident but when it comes to my skin I spend most of my time hiding it. It’s not just the stares and comments, it’s living with a skin barrier so compromised that you are constantly aware of it. Minute temperature change? You’re suddenly itchy. Label in the back of your shirt is scratchy? You scratch your neck til it’s bleeding. Absentmindedly scratched your elbow? Collection of dead skin all over your keyboard at work. Washed your hands with soap? Tight dry itchy skin until you get moisturiser on them.
Thank you for sharing these beautiful photos San. I don’t think I could do it. More people need to know what living with eczema and tsw is like.
I’m obsessed with Vinyl by Angel Haze. Well, her whole album really, but this song has been on repeat a lot. That line is just.. delicious and so fucking true. That moment when you press play on a favourite song, close your eyes and let it wash over you is so similar to that moment you peel the shirt off your favourite person and feel their skin on yours. It’s about the smell too, and that release as you come back to something familiar and amazing.
It was an emotional day for me today. There wasn’t a particular stimulus, but it was just a thought or realization that overwhelmed me.
YES YES YES. When you tell someone you have eczema, they’ll immediately sprout a magic cure all method that worked for their sister’s best friend’s cousin’s baby. Have you tried aloe vera? Have you tried oatmeal? Have you tried Burt’s Bees? Aveeno? Pinetarsol? Dermaveen? QV? Salt baths? Bleach baths? Vitamin E? Jojoba oil? Coconut oil? Tamanu oil? Eating better? Sleeping earlier? Praying to God? Dancing in a circle and chanting please fuck off eczema?
Please, I would pray to Kanye if it worked.
THINK before you tell me these magic methods. Unless I ask for your thoughts and suggestions, please don’t think you’re doing me a favour by suggesting every brand you’ve seen at the chemist before. I’ve seen them too. I know you think you’re being all nice and helpful but look at my skin. LOOK AT IT. Do you think I want to look like this? Do you think I haven’t tried everything? I. Have. Tried. Everything. Now please, don’t be all offended when I change the topic. Let’s just talk about something else ok?
NYC-based photographer Ariana Page Russell has a skin condition called Dermatographia, which causes her skin to be hypersensitive to touch.
In her Skin series, Ariana lightly scratches her skin in intricate patterns and photographs the results.
via Feature Shoot
may be interesting to you waywrd
Something beautiful from what must be a frustrating condition sometimes. Thanks for thinking of me mckensei :) Skin is such a weird thing.
I’m really struggling. My skin is killing me. Mentally and emotionally drained and just really desperate to go home and find some normality. Rents offered to change my plane ticket to leave on Thursday instead of Saturday but I feel bad.. I know some of my relatives will be like oh she didn’t wanna see us. And it would cost $250.
I don’t know. I just want my skin to be normal again. I just want it to be summer so I can go to the beach every weekend and have clear skin. I want a doctor who believes in TSW to take care of me and write me scripts for whatever I need and look at my wounds properly instead of trying to talk me into steroids. I want to sleep through the night without lying awake and itching. I want to stop ripping my skin up and bleeding on everything. I want to not wake up in a sandpit of my own dead skin. I want to wake up not in pain. I want to wake up and wear whatever I want, not just whatever clothes are the least painful. I want to stop choking up when I look at myself in the mirror. I want to stop mentally bracing myself for a shower. I want to stop checking my clothes for flakes of dead skin every 5 minutes.
Is it too much to ask for? I just want my life back. Fuck you steroids. Fuck you eczema.
June already. I’m in Hong Kong for my cousin’s wedding and I am struggling.
My skin was already a bit shit before I left, a combination of dry Aussie winter weather outside and too warm clothes the rest of the time that made me overheat and itch like crazy. I was dry, flaking like snowfall and could barely keep any moisture in my skin.
Add a nine hour flight and 32 deg weather with 50% humidity. A swift change like that to my skin is torture. I’m a mottled mess of scabs, swelling, oozing and crust, not to mention so fucking itchy I tear up all the scabs every few hours.
Not being able to wear long pants and sleeves means my mum has been seeing all my scabby limbs and has proclaimed tsw to be nonsense, telling me I need urgent medical attention before I do some permanent damage to my skin. Fuck off. Steroids did this permanent damage to my skin. I know she loves me and cares about me etc etc but I’m so sick of being told I’m wrong when it’s my skin we’re talking about. I know how steroids work, I used them for 23 years. What doctors never seem to care about is that steroids only treat the rash. I put them on and you see my rash disappear and you think you’ve done a good job. Well done! You made my rash disappear! What you don’t know is that perfectly clear skin still itches and still makes me scratch. Now I stop using the steroids because my skin is clear, but the itch remains - and watch my rash return within a week. Steroids are not a long term treatment plan for eczema. They do nothing but treat a symptom, and cause dependance by making sure you need a stronger and stronger prescription as time goes on.
I’m so tired. I’m so fucking tired of people staring at me, so tired of every girl who works in retail judging my skin, so tired of strangers offering me business cards to their traditional chinese medicine doctors on the train, so tired of every family member asking me if I’ve tried this cream or that cream or drinking soup with some herb in it or eating some root, so tired of doctors telling me in a serious voice that I just need to go back on steroids. Just fuck off all of you. Fuck off. You don’t think I want a magic cream that makes me look normal in a week? You don’t think I want to sleep at night? Stop itching in public? Wear whatever clothes I want? Have a shower without it hurting? You don’t think I want that magic cream? That’s all I fucking want you morons. But it doesn’t work, that’s why I’m refusing it. If I could have a little respect for my own decisions that would be really fucking nice right now. Fuck.
Now I’m going to squeeze my ugly skin into a pretty dress and go listen to “Oh have you tried this?” for another eight hours.
Almost two weeks since I got back from Vietnam and I’ve only just got myself back into any kind of routine. I’d say the above is a pretty good summary, ten days in ten photos.
The first two photos are of Honoi, where we paid way too much for our first round of drinks in a tiny, third storey bar with a view over this insane intersection. I don’t drink so you can see me with my pineapple juice haha. We learn the only way to cross the road is to give no fucks, just start walking and everyone will go around you. We visited Ho Chi Minh’s mausoleum, trekked down streets full of shoes or ladders or fabric, I got a massage and a manicure for measly $16 AU. We stopped for iced coffee every few hours - sweet baby jesus the Vietnamese know how to do coffee - with syrup and milk. My favourite one came from a cafe named Cong, which blended a shot of coffee with a coconut milk slushy. Mmmm.
The third and fourth photos are from Halong Bay where we spent just 24 hours. The place is overrun with tourist boats just like ours, but still gorgeous. We walk through a couple of caves, hike to the top of one of the formations for this incredible view, kayak to a floating village and play cards on the deck with two fellow Aussies.
Photos five and six are from Hoi An. I really liked the sleepy coastal town feel of the whole place, I think it was my favourite city in Vietnam. We spent two nights in a home stay, where we had our own little stand alone room backing onto an outdoor hut surrounded with palm trees where our breakfast was served. We visit the beach, where local tourists ask my white friends if they can take a photo lol, we have some clothes made up at a tailor, of which my silk shirt turned out very averagely but it was a touristy thing we just had to do. We took a day trip where we visited Hai Van Pass in photo five, and explored the old citadel of Hue in photo six.
Photos seven and eight are from Ho Chi Minh City. We arrived late at night and only had one full day to spend so we didn’t get to explore much. We stayed in a slightly older hotel hidden inside this great alleyway. We visited the war museum which was really confronting, and did a quick tour of the Reunification Palace. Our last drinks in Vietnam were on the rooftop of the Sheraton with this sunset view.
We splash out on the way home via Singapore and stay at Marina Bay Sands for one night, squeezing four people into a three person booking. That left us with only three passes for the infinity pool, but with a bit of fibbing we manage to get all four of us in there haha. The view is pretty insane, and I forced myself to go for a swim even though my skin was killing me. We visit the botanical gardens and have a lazy dinner in a food court. Five minutes from checkout on the day we fly home, my friend slips in the shower and cuts her foot quite deeply.. not deep enough that she decides to wash her hair before telling us to call first aid lol. She gets bandaged up but told not to walk on it, so with five hours left in Singapore we hit up two shopping centres, asking for a wheelchair at each one and complete speed shops of Uniqlo and Muji. Success! I spent more money in a single day in Singapore than a whole eight days in Vietnam.
I feel like we could have easily spent a few more days in each place, but for the time constraints it was a good trip. My skin was horrific for most of it, raw and insanely itchy. I’m still recovering nearly two weeks later, but that’s another post. A great ten days.
I want you to imagine wearing one of those awful uncomfortable sweaters. You know, the ones made of wool or something that are so scratchy and so uncomfortable to wear. Imagine having to go to school or work with it. Imagine having to fall asleep with it on.
Now imagine never being able to take this sweater off.
This is what it means to be uncomfortable in your skin.
This is eczema.
Yes and yes and yes. Fuck eczema. Fuck my skin.
2:15 am and I am ripping my skin up instead of sleeping. I am so awake it’s ridiculous. If i fall asleep right now I can have four and a half hours before I have to get up for work, but that’s not going to happen.
How do you guys deal with the sleeplessness? I’ve never had it so frequently until now and I honestly just don’t know what to do with the hours. Think I might curl my hair before I try to sleep again. At least I’ll wake up with good hair.
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.