I was shocked at how quickly my skin started reacting to stopping steroids. Within days I was getting red, sore patches all over, mostly starting on my neck and chest first. It’s one of those quickly spreading, painful skin conditions and I remember thinking each day, ‘ok this is it, this is the worst it’s going to get’, yet every day it exceeds all expectations of pain and gets uncontrollable before you know it and your whole body has been taken over.
I’m self employed, so I had no intention of quitting work when this all started at all. I considered myself too tough to be brought down by anything, and if I had survived working with chronic eczema up until now, surely I would be fine through this. Ha.
I would go to work for the first 4 weeks and focus all my energy on working, just to distract myself from what was going on with my body. The symptoms started appearing rapidly at first. My neck, chest and face started getting red and rashy, then my back and arms before my whole body was saturated in a rash like I’d never seen before. Quickly this skin started splitting and before I knew it, I was a bleeding, oozing mess all over. It would take me hours to get ready for work each day as I screamed and screamed just putting clothes on my body. Looking back now, I’m not sure how I managed it.
Sleep was non existent, firstly the bone deep itch is totally all consuming, you’re wet all over from the ooze and getting comfortable isn’t an option. The skin shedding is INSANE, my bed on average had to be hoovered 3 times a night and bedding changed daily because of all the yellow, smelly (that metal smell!!!), sticky ooze that was weeping out of every crevice. There is nothing dignified about TSW – you are a mess. A total, stinky, shedding, bleeding, moaning, exhausted mess.
It was August / early September when I was working, and we were having a nice summer…although I would never had known it, the chills that I had were so extreme – I couldn’t physically stop myself from shaking, ever. I’d sit at work in summer in 2 jumpers, my winter coat AND a blanket, and still shiver. And no, we didn’t have air conditioning!!
Despite the lack of sleep, you are insanely exhausted – skin is an organ, your largest organ and it is FAILING. The amount of stress your body goes through is immense. I remember one Sunday 2 weeks in to TSW, my boyfriend and I went to take our dog for a walk in the country – I was doing my best to hold it together at this stage. We stopped off for a pub lunch along the way, as soon as I had finished eating, I had to lay there, head on table and fall asleep. I just couldn’t stay awake – my body was in shut down mode, it couldn’t handle life without steroids. But it had no choice – it was going to have to learn how to live without them – and I was determined to do what was possible to get over this and make sure my body healed from these nasty, poisonous drugs that are handed out to us like sweets.
Here are some pictures from the first month – I am going to do separate posts on what I did to help me get better and to soothe and comfort.