I have dusted off the cobwebs of this blog to bring you something rather exciting.For a little while I have been thinking about writing an update of sorts for my book Curing my Incurable Eczema all about my journey with TSW, and after reading it again last week for the first time since publishing it in 2017, I thought the time had come to do exactly that.
This will also mark my return to blogging, and I have a lot planned! I will be bringing back the series 5 QUESTIONS WITH where I interview some of the very inspiring people within our beautiful community. There will also be articles and, even though it might kill me, I plan on collating every single website, blog, Facebook group and Instagram account on our condition to create some kind of database - a little hub for all things TSW for anyone who is struggling to navigate the barrage of information out there and doesn't know where to begin. I will be sharing more details soon, so watch this space. It's going to take a lot of work, but I'm so excited to get started.
So back to the whole point of this blog post ... I have added a brand new chapter to my book, but I would hate for anyone to think they have to buy it again in order to read it, so I have included the chapter below for free. It's an honest account of everything that has happened in the last year and a half which I hope you find interesting.
Much love always,
Cara x
CURING MY INCURABLE ECZEMA: AN UPDATE
Written on Saturday 27th July 2019
This week, after reading through my book for the first time since publishing it in December 2017, I thought the time had come to write some kind of follow-up – an update of sorts – because a lot can happen in a year and a half, and I think it’s only right, due to the nature of the book and my particular skin story for there to be total transparency.
This probably sounds a little strange, but I was almost scared to read through it again because, quite simply, I’d forgotten what I had written. Apart from jotting down a few rough chapters at the beginning of 2017, the main body of the book was done over seven rather intense weeks leading up to publication. When I finally read through it again this week, I got a bit of a shock, because all I could think was, did that really happen to me? Suddenly, all these suppressed (appropriate word under the circumstances) memories came flooding back, and I’m not going to lie to you, it was tough. Of course, I’m so happy I wrote it, and to have such an important piece of my life in one place, but it’s quite hard to be suddenly transported back to that time. Since writing the book, a lot has changed, but some things have stayed the same.
I have just passed my six-year TSW anniversary, and in keeping with my love of celebrating the milestones, Mum and I put on some pretty outfits and had a rather wonderful afternoon tea together at Sketch in London (the place with the Instagrammable toilets …). It was amazing, and whilst I’ll always feel something every 6th June, as time passes, I forget a little bit more of what I went through for over two years because essentially TSW is no longer a part of my life.
A lot of people ask me how I am able to be so present in the TSW community and answer questions on a daily basis about such a harrowing time, and I do it for two reasons:
- More than anything, I understand the importance of being there – showing that there is light at the end of the tunnel. The mind through TSW is a fragile thing, and to have something solid to hold onto and keep you going through the darkness is vital. I needed that so badly through my own withdrawal at a time where there wasn’t much of it available.
- Quite simply, over time, I have found a way to disconnect – like there is a chip in my head which enables me to go into autopilot because now it’s as if someone else went through withdrawal and not me. I talked in the book about how fickle humans can be when it comes to pain, and it’s true. Our mind can be so tough on us, but sometimes, it can be kind too and soften the sharp edges of whatever trauma we went through – comfort us, tell us it wasn’t so bad. This week, when my mum and I read through certain sections of the book, we turned towards each other in shock, suddenly remembering just how hard TSW was, because she was just as much a part of my withdrawal as I was. We might be the ones in physical pain, but our loved ones are in pain too, just in a totally different way, so be kind to them, always.
You’re probably wondering how my skin is now, and quite simply, I don’t remember the last time I had a rash. Really. Over time, the skin on my face has gone from strength to strength and it’s only really my hands that have had any kind of reaction; getting slightly chapped when the temperature suddenly takes a nosedive, but that’s like most people in the world really, regardless of whether they have a skin condition or not. Even my flatmate who has no issues said last winter that he struggled to wash his hands once as they were so sore from the cold. After withdrawal, we aren’t little china dolls with perfect skin – we have skin that will react to the elements because we are human.
In the book, I discussed some symptoms that I was still experiencing after withdrawal that are now non-existent, including:
- Nerve pain and the feeling of thousands of bugs crawling over my body. To be honest, I forgot all about this until I read through the book this week. Thank GOD I wrote it all down because it appears I have no memory ...
- Hot/burning skin. Absolutely nothing like this has happened since publication.
- I mentioned that I used to get dry lips if I had cold/flu symptoms or ate too much sugar – not anymore, and when you hear about my diet in the last few months, you will know I have certainly not shied away from the sweet stuff ...
The only thing I still suffer from is anxiety, but it is a different beast entirely to what it once was and is now absolutely nothing to do with TSW. I mean, it might be the case that withdrawal made me anxious and it just decided to stick around because Pandora’s box had already been opened and there was no way of closing it again, but regardless, I no longer have a fear of flaring and instead, it is now triggered by a lack of sleep and pushing myself too hard. I have social anxiety too, born from the isolation of TSW, but I know that will go in time, and in a way, I prefer who I am now. I may have been louder before TSW, but all that noise was only silencing how I really felt about myself, and it wasn’t good. If I’m being completely honest, my anxiety is actually worse now, but I know I don’t help myself. If you suffer with it too, then you will probably agree that there are warning signs you tend to ignore till it’s too late and you are stuck on the hamster wheel and can’t get off, with your thoughts spiralling dangerously out of control. I have also been told it’s likely I have anxiety-induced IBS too, as now, when I’m anxious, I bloat like a goat who has eaten bread. After a couple of really bad bouts of anxiety this year, I had to take a step back, forced myself to not do anything but my full-time job and waited till it calmed down again. Meditation helps, along with not eating as much sugar which seems to exacerbate it – but have I actually done either of those things? Of course not.
Oh sugar … Sugar and I have been in a very turbulent and passionate love affair over the last five or six months, and I can safely say my diet has never been so bad. Ready for my excuse, and it’s a good one … recently, I realised that since I was a little girl with eczema, I have had to think about everything I ate, as if some omnipresent being was always there, ready to judge my food choices and how it might affect my skin. But I think it dawned on me at some point this year that whatever I ate didn’t appear to affect my skin, and so for the first time in over thirty years I have had TOTAL FOOD FREEDOM, and I’ve gone feral. My addiction to sugar has got to the point where I’ve started calling it my boyfriend. Make of that what you will and is probably a story for another day …
I still love healthy food and couldn’t live without it, but I have certainly padded out my diet with far more junk than I ever have before, and whilst my skin has been fine, I feel crappy. Now, sometimes I think I’m infallible because I feel so strong after withdrawal, but it’s taken these recent bouts of anxiety, teamed with a poor diet, to remind me I am human and can only push myself so far. I am attempting to eat better again because I want to, and that’s pretty lovely – not doing something because of my skin, but for me. How novel.
Diet is such a controversial subject within our community and as far I’m concerned, I don’t believe there is much of a link between food and flaring. I think a lot of people forget whilst going through TSW that it is essentially a DRUG WITHDRAWAL and not a regular skin condition. I still believe that certain foods can exacerbate symptoms, but not cure them, and I have yet to see anyone prove me wrong, although I am over the moon for those who think a radical diet change has helped them. We are one community who all want the same thing: skin freedom, and so we should stick together and support each other, no matter what route we take to get there.
My beauty routine is pretty much the same as it was before, apart from finding the hair care brand Kérastase, which has been a game changer for my Hagrid-prone hair – although I still use the Head & Shoulders shampoo because it is just brilliant. I also wear sunscreen now. I said in the book that in the past I had reacted to every one I had tried – that was until I found Sunsense. Sunsense is an Australian brand that a wonderful blog reader recommended to me last summer. Now, I use their Ultra 500 SPF50+ Sun Screen which is lightweight and so gentle, and since I’ve used it, I haven’t had any kind of reaction. I wear it every day, even in winter, and I’ll never be without it. Although, with that being said, part of me still feels it’s wrong using one at all … but as a freckled redhead, I can’t take the risk that my (probably crazy) theory is wrong.
On the whole, my views have not changed – give it time and don’t give up. Time. That is all it boils down to really – and I mean real time, not a handful of months. TSW is a marathon, not a sprint, so try not to listen to the voices telling you you’ll never get better and to just give up. When something gets uncomfortable, no matter how much we want it, we all have a tendency to want to run – forget about the reason which led us to take a particular path in the first place. I have to tell myself that all the time with writing now. I am working full-time whilst also trying to make writing my career, but I’m so tired. I get anxious as a result of pushing myself too hard and there have been mornings where I’ve already been writing for a few hours then have to force myself out of the door to begin a whole day at work. It’s lucky as I really like my day job, but that doesn’t mean it’s been easy, balancing the two, and sometimes that familiar voice I heard all the time during withdrawal will come back and ask me, is it all worth it? But because of what I went through, now, I grit my teeth and keep going because not giving up through TSW turned out to be the best decision I ever made and I ended up with skin I had been desperate for my entire life.
Something that has upset me since recovering is doctors’ disinterest in TSW. There have been times where I’ve seen the doctor for something unrelated to my skin, then after asking if a particular treatment they have prescribed has any kind of topical steroid in it and I start to tell them about TSW, I see their eyes glaze over. They just aren’t interested. I totally understand how hard their job is, and I have so much respect for all that they do, but it does upset me that they aren’t ever just a little bit curious to hear me out – and that kind of response is why we have a problem in the first place. It is imperative that there is a better understanding and education on the dangers of these drugs so no one has to suffer as we have. Although saying that, the opinion within the medical community as a whole seems to be changing for the better. Awareness is spreading, and on Instagram alone there are now twenty-five THOUSAND photos on the hashtag #topicalsteroidwithdrawal. It’s wonderful, as it means word is getting out there, but it also means that more people are having to go through something they should never have to go through in the first place. Maybe one day people will know the dangers of these drugs and never become addicted, but just like TSW, it’s going to take time.
Something very exciting that I wanted to talk about is the documentary on topical steroid addiction, Preventable: Protecting our Largest Organ, which was released this March and is absolutely wonderful. So far, it has had over 37,000 views on YouTube, with the National Eczema Association even putting a link to the documentary on their website. Our condition is finally being taken seriously, and, even better, now, we have not only one, but TWO documentaries on TSW, with another one in the works which I was lucky enough to be a part of last year.
I wanted to end this chapter by saying thank you. When I wrote the book, I had no idea what would happen after I published it. This was always a passion project for me – a way to finally say goodbye to TSW and close a door on that ‘chapter’ of my life. I thought at least my mum would buy a copy, but what I wasn’t expecting was the extraordinary response from the skin community who made the whole experience so incredibly special. I have been stunned by the reviews and posts about the book, the kind messages ... from the bottom of my heart, thank you.
And so all that leaves me to say is goodbye to an old foe – or friend, you decide.
TSW, you changed me. I grew, I made mistakes, I learned from them, I fought, and I won.
Love,
Cara x
If you are interested in buying my book, here are the links to get it:
UK
eBook (here)
Paperback (here)
US
eBook (here)
Paperback (here)
Canada
eBook (here)
Australia
eBook (here)
Germany
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