To some I may seem dramatic, others I may seem mental, and others just an extremely tolerant, patient and hopeful human being. Probably all of the above have played a part in the Topical Steroid Withdrawal journey I've taken.
I want to begin by saying that I fully believe all 'TSW Warriors' (as we are called on the Facebook group), all have a some what similar experience, however what I have come to realise is that each one of us is unique. We have different strengths, reaction types, flare patterns, and choice of moisturiser - if you want to be specific.
I feel as though my journey has been tough, a hell of a lot tougher than I could have ever realised or imagined. I began this with thinking 'Well this has the worst its got in 4 weeks, surely I can tolerate longer, there are people that look burnt all over and I'm just wearing bandages on my arms at the moment..' but boy, did my skin deteriorate the longer I - you could say, tortured myself. Since my last blog post I have had to take anti histamines twice a day, two courses of anti biotics due to potential skin infections, and been bandaged on both arms and legs with viscopaste bandages.
Over the past 3 months I have done everything you would expect a body to appreciate, tonnes of bottled water, fresh and 'safe' foods, trying to keep a healthy mind by leaving the house. However, for me, enough became enough.
Its been a week and 2 days since my 6 day hospital stay at the BRI in Bristol. Never did I expect to 'surrender', you could say, to the care of professionals and start a course of treatment that is considered 'moderately dangerous'.
A week and 2 days ago I couldn't have been more frightened, at absolute despair, and not even myself anymore. Looking back I can KIND OF laugh a little, at how tragic everything was - but really, its not funny. Not funny at all. Sitting on the toilet seat waiting for my third bath of the day to run, I looked over my body realising really HOW red raw I was. From my forehead to the tips of my toes, I was swollen and on fire. I would itch from head to foot, not just an itch that you could rub and it would go away, one that felt like your BONES were itching. Every scratch feeling like a tiny orgasm (wish I was joking), that would spread and spread until suddenly my whole body would feel like I could just rip my skin off. With my arms and legs covered in bandages, scratches all over me, blood and ooze pouring from my pours, I cried and cried, panicked and panicked, screamed, cried some more, and when I found myself physically pulling at my hair and shouting 'I need someone to help me' to my mum. I knew I needed this to stop.
Although this post is somewhat depressing and quite shocking, I don't want people to be put off by quitting steroids, I would just seek HIGH QUALITY, professional guidance, first. I was feeling very down about myself when I quit steroids, I had just gone through a breakup, life as I knew it was coming to an end (uni), I just wasn't a happy human, and I wanted change. Never did I expect things to get so bad - would I do it all over again? Possibly. The drug I'm currently taking - Ciclosporin, is given to people with severe skin conditions - something I would have never been offered while I was slathering steroid cream over my body every other day. I would never really look like I had eczema at all - I was hiding under baggy cotton clothes and a drug that was suppressing my blood vessels - of course nobody would consider me a 'severe case'. Ciclosporin is taken under strict supervision. My dermatologists at the BRI are AMAZING and have guided me through this process without a single flaw, making me feel some what reassured and that I'm making the right decision - at least for me. At the moment my skin is 90% white again, I'm not using steroid creams, and I feel the best I have done for a long long while. I have to have blood tests and a blood pressure check every week for a month, (its been 2 weeks already), and then it drops down to every month. My consultant is pleased with how my body has reacted to the drug so far, all bloods have been normal and I have had no noticeable side effects so far (other than I burp loads after I take it - lol, and my skin looks bloody fantastic compared to 2 weeks ago).
This was around week 5, when I had my first panic attack. I don't think I've ever actually had a panic attack before, but my gosh it was bloody awful. Everything was out of my control, my breathing, even my eye sight, NOTHING could calm me down. I would sit on my bed, that was covered in towels to capture the fluid that was just constantly pouring of my skin, and rest my head on my knees - exhausted and in pain. At this point its easy to imagine how hopeless my mum felt, meaning she called an ambulance. I remember the fear I felt being naked and wrapped in a towel awaiting what was next - would they slather me in steroid cream? pump me full of an injection form of steroids. I can't express how completely and utterly scared I was. Anyway the ambulance men arrived, and OBVIOUSLY they had to be my age. (great) They were lovely, and after promising no steroids would go near me and I was given a strong anti histamine through IV, I finally started to calm down. I still had to go to hospital this night, to my utter shock resulted in a 12am-5am wait, and a complete shambles of service. Before I was even SEEN by the on call doctor, she had told the nurse to give me a course of steroids. After the long wait (of which I ended up needing a bed made up for me as I was so shaky/upset/just a general mess), we saw the doctor. She was rude, obnoxious and patronising. Telling me 'I give my 2 year old steroids to keep his condition at bay, if theres a treatment why wouldn't you take it', 'things you read online are not accurate'. Oh right so, all the people that have the same reaction after stopping topical steroids are all lying and painting themselves red? All the people 40+ who have been using steroids there whole lives, now have to take the strongest one on the market every day just to keep themselves comfortable? She was a dick. I didn't take the steroids and went home. Exhausted.
Maybe around week 6-7? By this point I was walking around hunched over, my body temperature was shot away, I would shake then sweat, sting all over then sweat some more. After visiting the doctor what seemed like once a week, she became so worried about my condition, as well as my mental health, she referred me to an emergency dermatologist appointment at which I was seen in the same afternoon. People thought I was mental for not taking 'my medicine', but to me I felt as though steroids weren't the answer anymore, they were a temporary fix that I had to keep coming back to, my skin was thinning and felt generally weak while using steroids - I wasn't wearing the clothes I wanted and could barley be touched without feeling annoyed that my skin felt nigly (thus resulting in more cream. I was trapped in a vicious circle while using the creams, hence why I wanted this process to work SO MUCH (TSW)). Anyway after this I was given anti biotics, an antiseptic wash for the shower, and of course - a course of steroids. That I still refused to take.
Week 8-10. This was probably when I started to get to my lowest point. Everything just started to get worse and worse. I was doing everything right - good food, supplements, water, occasional sunlight. Why wasn't I improving at least a little? I became a shell of my former self these weeks. I would cry a lot, not see friends, wake up at 2pm, not really do anything other than bath, stare into space, and scratch. Depression was definitely hitting me, something I've never felt before. I was terrified. Places started to crack that had never cracked before (fingers, toes, neck). Places began to become raised, purple, & raw. After bathing my whole body would POUR with a yellowy ooze that would smell horrific and could only be managed by bandages (so. gross.) Looking back I'm not sure how on earth I managed with myself this bad. I would wake up every morning covered in sweat, ooze, crust and skin. I just didn't want the morning to come. Considering I'm always a very happy, 'I'm fine' and upbeat kind of person, saying things like 'I want to die', and meaning it, was just horrific.
Week 12 - the three month mark, the month where most people say things start to get easier. Could I see them getting easier? Nope. After my experience over the last 12 weeks, I knew for myself, and my family and friends, that it was time to put myself in the hands of the medical profession. For weeks before I would feel very strong in my head - NOPE, I'm fine, I'll be fine, everything will be okay and I'll heal just like other people taking the TSW have without using medication. However week 12 was when I realised my mental health was SO much more important than the risks of any drug. Before I felt that if I took steroids or other drugs to control my skin again, I would have just wasted my time, suffered for nothing and in the long run, my skin would be worse again. Then I realised - could it get much worse than this? I felt helpless, frightened, but also hopeful when I was emitted to ward C808 as an emergency case. Some people still don't understand why I didn't just 'keep using the steroids', but those people aren't me, they aren't eczema sufferers and they haven't witnessed the research, videos, and success stories I have seen from people withdrawing from steroids, not the mention the damage and long term health risks of applying topical steroids as much as I was. I actually had a great time while in hospital - as far as hospital stays go.. I made friends with the old ladies in my four bed room, the student nurses that DEFINITELY saw me naked at some point.. and of course the on duty nurses. Everyone was brilliant. I probably laughed at least once a day in hospital. A fabulous night shift nurse named Lisa would sit next to me while I bathed, talking to me about everything from boys, night shifts, going out in town, etc. She kept me hopeful about everything, cuddled me when I cried and would check to see if I was sleeping comfortably every hour or so. (I can't really say the same for the food.. although they did give me double portions of everything, considering I was and still am SO HUNGRY all the time due to my immune system fighting too hard.)
Today. Things are going great again. I can finally sit comfortable, stretch my body without it hurting, not need to itch every 5 seconds, not cry (yayyy!!), sleep relatively well, wear pretty things again (YAYYY!!), I can get ready in an hour as apposed to three, I can chat to my mum about career goals, shopping, etc as apposed to 'I feel like shit' every 5 seconds. I CAN DRIVE MY CAR AGAIN!! My mental health has taken a good battering but I finally feel like Madeleine Grace Webb is creeping back on the scene. I am yet to tackle my other love (partnered with clothes), my makeup, but I'm sure that will come in time. I mainly wanted to write this post to show people what happened to me when I quit using my steroid cream, that I'd been using for just 4 years (as apposed to a lifetime, like some other people). How it made my skin react etc. I have NEVER EVER had eczema as bad as it was in my LIFE, never on my feet or hands, etc. I really wish doctors would stop prescribing steroids so freely, they are so dangerous and I was using them as if they were some magical potion that allowed me to be a normal teenager. Steroids are supposed to be used for TWO WEEKS - 'and if the problem persists, see your doctor', WHY WAS I NEVER TOLD THIS???? Why did the A&E DOCTOR tell the NURSE to give me steroids before she had even SEEN ME?! Oh my gosh it makes me livid, ha. I am now on Ciclosporin, an immune suppresent drug which is ALSO dangerous, and I am aware of that, however I feel confident in the fact that I will be on these tablets no longer than a year, I will be weaned off them onto weaker drugs, or even no drugs at all. My dermatologists at the BRI (Dr Dunnill & Dr Wordsworth) have given me great hope in that they have had successful results from the drug tonnes of times, and it is more common than not that people get a huge relief and quality of life during and after the treatment. I have a skin condition, some people have a heart condition, or a kidney condition, which they take drugs for the stabilise. I just need to accept that I just wasn't okay to carry on the way I was going. I know a lot of people doing what I did who still seek no medical help, your skin is an organ. An organ that can lead to MULTIPLE ORGAN FAILURE. I didn't realise this at the time, but I do now. I realise how ill I really was and I feel glad that I'm helping myself, almost like I'm giving myself a cuddle and saying sorry. I can only hope that these drugs are the answer for now, eczema is so unpredictable its hard to tell if I will ever be in the position I was 2 weeks ago, again. However for now, I am SO happy and SO relieved. Heres to getting back to seeing my friends, being sociable again, taking NOTHING for granted and living life to the fullest, once again :)
If you are unaware of what made me start my Topical Steroid Withdrawal journey, heres an informative website - http://itsan.org/
If anyone has any personal questions, email me! Madiwebb8@gmail.com