Month 1 – here it comes

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.

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6 thoughts on “Month 1 – here it comes”

  1. I am the mother of Elizabeth Jones. She is now in week 4 of TSW and her skin looks just like yours at this stage. I don’t know the best way to support her. Is there anything I should do/say to help. Thanks Linda Murphy

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  2. HI Laura,

    Please can you give me the details of the organic pharmacy and doctor you got the test results from? I am about to start the withdrawal and i live in London.

    Thank you!

    Jess

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    1. Hi Jess, the organic pharmacy is on Great Marlborough St (opposite Liberty), and the doctor I saw was Dr. Adam Friedmann, he was on the NHS at the time but I believe he has just gone private now. I recommend joining the TSW London Network Facebook group and coming to some of the meet ups, will be a great source of support for you! Keep me posted x

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      1. Thank you! I work next to liberty so very useful! I have started taking lots of supplements and vit e oil is saving my life. So far it is not as bad as i thought it would be!! I am sure the worst is yet to come but im so glad i came off them. Really happy for you that your skin is now happy and healthy. Going to join those fb groups now xxx

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  3. You are very welcome, there is a meet up happening on the 25th June – great for support. If you join the TSW London network you’ll find the info in there, I really recommend coming as it takes away the loneliness of this condition. Wishing you speedy healing!! xxx

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