I realised a while ago that after all these 5 QUESTIONS WITH I have posted now, the tall forgetful redhead who runs this blog has never actually answered any of these questions herself and even though my skin journey is on here in various posts, it's rather disjointed and you might not actually be aware of my own eczema/topical steroid history ... but let's be real, all I want to do is sum up my own withdrawal in five words. Even though this blog is essentially all about my own skin journey, it feels oddly narcissistic doing this but I thought it might be helpful so I hope you enjoy it!
1) Tell us a little bit about yourself and your skin journey.
Hello! My name is Cara, I'm 29 years old and I live in the UK. My skin story began as a 6 month old baby when I developed a rash on my wrist. My mum went to the doctors and was told it was eczema and I was prescribed Hydrocortisone and moisturisers to 'manage' the condition. Thankfully my mum only used topical steroids very sparingly and in my early childhood my eczema was bad but it never had a negative impact on my life. From the age of about seven to eleven, my eczema cleared up on its own and my skin was fantastic ... until I started secondary school and it came back with a vengeance. It was here that my wild teenage years truly began filled with hospital appointments and trips galore to the doctors who all (bar one wonderful nurse I saw called Jeanine) followed the same protocol: prescribe a plethora of moisturisers, emollients, bath oils, oat sachets, lotions, potions, topical steroids and immunosuppressants to 'manage' my eczema.
There was a dermatologist I saw at the hospital for an extended period of time in my teens (who shall remain nameless) who was most insistent I use Protopic and various topical steroids heavily to treat my 'incurable' eczema - both my mum and I remember that he would get very annoyed if my skin hadn't improved since I'd last seen him. My mum is also convinced he gave me a course of oral steroids in my teens to teach me a lesson for not using the creams as instructed. I took the oral steroids, much to my regret, and from this point on, it's a little sketchy as to when everything happened because like most things, they gradually occur over time and you never think to yourself 'I'm going to write down this random thing in my life because one day I'm going to go through a horrific 2+ year withdrawal and want as much information about it as possible' - I didn't have a clue what was going to happen! A little memory has just popped into my head of a cupboard in my kitchen stuffed with so many unused prescriptions that I could have run my own pharmacy. I have to say both my mum and I found those hospital visits pretty bleak to be honest and all the time I saw that particular dermatologist, not once did he say to me 'You know Cara, you should try a few things like diet eliminations and natural remedies to see if it helps.' Instead, he would suggest Protopic (oh he loved that stuff $$$) and topical steroids and was quite aggressive in his approach of wanting me to take them but it finally took my mum saying to him that I was being bullied at school and didn't need to be bullied by him too for him to concede that maybe stress could be making my eczema worse. From (I think) the age of 15/16 I was using a mixture of topical steroids and Protopic to 'manage' my eczema and very quickly it got to the point where I was using them every day. I stopped using Protopic as I had developed a worrying amount of freckles on my skin, to the point I had to get photos taken at the hospital - as we now know, it has since been given a black box warning due to it being a possible cancer risk. Fabulous.
I know near the beginning of my dependency, I was using stronger topical steroids - things like Betnovate etc but somehow, over time, I managed to wean myself down to using only Eumovate. Morning and night, I would squirt roughly half a fingertip onto the back of my hand and rub it over both hands and wrists then a little bit under my chin. That way it meant I never had to touch the stuff as I found when I did I'd get this awful tingling in my fingers. I can't explain it but I know for certain that the tingling feeling, along with the smell of steroid cream, will never leave me. For some reason, if I just used that small amount on my hands, wrists and chin, it controlled my entire body and kept my 'eczema' away. For years that was my routine that worked for me and after a while, I was able to wean myself down to using 1% Hydrocortisone. Even though everything was 'ok' and my skin was under control, I was very aware of how bad topical steroids were - I knew their dangers, and I tried countless times to stop using them only to have my 'eczema' come back instantly, angrier than ever. I'd go to the doctors every time that happened but all they would do was prescribe stronger steroids, along with a greasier, heavy-duty moisturiser and maybe biannually throw in some ridiculous treatment for the bloody bath. Instead of using the more potent topical steroids they had suggested, which I knew was only a slippery slope until I was using stronger and stronger ones, I'd just go back to my routine of using Eumovate or Hydrocortisone under my chin and wrists/hands as to me it seemed like the lesser of two evils.
A few years before I gave them up completely, I started noticing more and more side effects from using topical steroids - my skin was thinning badly, to the point where you could clearly see a worrying amount of veins especially through the skin on my face and in the creases of my arms. Another issue I started to experience was excess facial/body hair. My mum was scared, and so was I, but I felt completely trapped because I already knew from experience over the years that if I stopped using topical steroids, my 'eczema' would just come back straight away. In my head, I think part of me had resigned myself to the fact that topical steroids were always going to be a part of my life and I'd just have to accept the consequences and not think too much about the future.
In July 2012 (just under a year before I started TSW), I went away to Greece and after only a couple of days, I had a terrible reaction to the sun. Up to that point, I'd experienced some issues when I went in the sun but as I hadn't left the UK in years, I'd never really put my skin to the test, if that makes sense. In the past when I had eczema, and my skin wasn't reliant on topical steroids, my skin ADORED the sun and any eczema I had would clear up - so this new reaction in Greece didn't make any sense to me. Suddenly the sun hated me and I was coming up in hives and my skin was burning. I had some steroid cream with me but I was scared to use it up before the trip was over and for the rest of my holiday, I tried to keep myself covered up with only short bursts in sun but I didn't go in the pool any more and I certainly didn't wear anything like a bikini. I remember a few days before we left and we went for a trip into town, I found the nearest pharmacy, bought some Eumovate and literally that night I smothered myself in the stuff. It didn't make any difference but when I got back to the UK, my skin calmed down and I returned to my normal routine of using Hydrocortisone under my chin and on my wrists/hands.
For a while my skin was ok but the side effects like the thinning skin were getting worse and in roughly April 2013, out of nowhere, I got a terrible allergic reaction where the skin around my eyes blew up and I also developed a few patches of 'eczema' on my skin (I think on my arms and legs). My eyes calmed down quickly but they never returned to normal and for the next couple of months (just before withdrawal), they were continually irritated and dry and the Hydrocortisone was doing absolutely nothing for the new rashes that were appearing. Around this time I went to the doctor and told them what was happening but of course, all they did was tell me that I just needed to use stronger topical steroids .... and so they prescribed me Betnovate. At this point I felt like I had two choices: use the Betnovate then one day use a stronger topical steroid, and so on, until they all stopped working ... or stop using topical steroids completely - but I couldn't see how I could do that as my 'eczema' was just too bad and I wouldn't have any kind of life. I felt completely confused and helpless.
2) How did you find out about TSW?
On the evening of Thursday 6th June 2013, in an act of desperation, I Googled something like 'addicted to steroid cream' and all this information came up, leading me to ITSAN and some blogs of people who were going through TSW. Like others, it was a total lightbulb moment for me and from that day forward, I never used them again. When I found out about TSA it was almost as if the answer was obvious - of course
I just need to stop using them. It all made complete sense to me that this
was what I had to do and oh my goodness, the RELIEF at finally finding the simplest but hardest of answers to cure my 'incurable' eczema.
3) Did you find that anything aided your healing?
Time, and lots of it. I do believe that a healthy, balanced diet along with looking after yourself where possible helps but in my opinion, you get better when you're meant to get better.
4) Sum up TSW in five words.
Best thing I've ever done.
5) What positives, if any, have you found from going through TSW?
I know without a shadow of doubt that I will never take my health for granted again, and to live without pain or discomfort is something to be treasured and is not necessarily a guarantee. TSW may have presented me with some of the most challenging times of my life but the positives from the whole experience by far outweigh the negatives. Pre-TSW I was going down a path in life that was destructive. I had very little self-belief, I was dating the wrong men, I was in a job I hated that was going absolutely nowhere, I let opportunities pass me by because I was too scared to follow my dreams, I let people treat me badly... Going through TSW forced me to think about my choices, gave me precious time to take a step back and think about what I truly wanted. It made me realise just how lucky I am - I had this wonderful Mum who looked after me, held my hand through the dark days and let me stay at home and recover without having to worry about money, and I had friends who made sure I never felt like I was missing out - they would send me care packages and call me regularly to make sure I was ok. I also discovered a love of writing (something I had been thinking about for a long time but was too scared to try) and over the course of my withdrawal, I wrote two full length books (one which I self-published), a book of short stories, a novelette and a short story (all of which I self-published too). I also discovered what the root of so many of my problems were and I found something that I thought was long gone: a little bit of fledgling self-belief in myself that is still a work in progress, but I'm getting there.
I remember what I wanted more than anything when I was suffering was to be able to put on some clothes and walk down the street - just feel like myself again - and when I got better and was able to do that, I realised just how extraordinary it is to feel comfortable. How amazing it is just to live and breathe and be able to move freely without pain. Simple things like feeling the sun on my skin, the exquisite purity of it, is what life is really about. Those small moments we all miss because our heads are consumed with our busy lives and problems.
Last year, when I first got better, I set up my YouTube channel, Instagram account and this blog in the hope they would help people going through TSW but I wasn't expecting such a lovely reaction or the fact that over time, my blog especially has grown so much and become a total passion project of mine. My blog is now like my baby and my little corner of the internet in which I can talk freely about my experience, it's totally cathartic, laying myself bare. Lastly, it is through these online channels that I have got to know so many people within our skin community that inspire me every day. Whether it be on Instagram or people who send me messages or comments. The kindness and support within our community is unlike anything I have ever seen.
I will be forever grateful for going through TSW. In every way possible I shed an old skin and was given a new one that has made me stronger, happier, healthier.
Thank you TSW.
To follow my Instagram, click (
here) and for my youtube channel with videos on TSW, click (
here).
Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (
here)
Alice @healthy_healer (
here)
Maleeha @TSWHealed (
here)
Nina Sloan (
here)
Nick @Eczemacism (
here)
Stephanie & Isaiah Quinn (
here)
Stephanie @TheItchyConundrum (
here)
Josh @Redskinrecoverydiary (
here)
Briana @PREVENTABLE (
here)
Melanie Lynch (
here)
Stephanie Miller (
here)
Holly Dillon @GetYourSkinOut (
here)
Love & hugs
Cara xxxx
I have now posted FIFTEEN (!!!) interviews as part of my 5 QUESTIONS WITH series and I've absolutely loved working on them. I find the similarities we all share absolutely fascinating but I have also learned so much from every single person I have featured on my blog. Over time, what has intrigued me the most is what people will answer for the question Sum up TSW in five words. The answers never fail to amaze me and show that even though withdrawal itself is tough, it's all worth it in the end. Alice and Stephanie's stories are slightly different as they suffered from severe eczema and not TSW and Holly has psoriasis but even so, no matter what condition we have gone through, or are currently dealing with, we share so much. These conditions build you as a person, strengthen you, so you are better able to deal with anything that life throws at you. You understand what is truly important and that a bad situation can actually be something extraordinary.
