I may have uploaded a video on this very subject the year before last (here) but the problem with
that video, along with others I posted around then, was that I had literally just got better and was understandably so excited that I didn't give myself any real time to think about what the hell I had just been through and it's only since recovering that I have come to terms with what actually happened.
I am not going to recommend any dietary changes, moisturisers or drugs for the simple reason that we are all so different and what might help one person, might not necessarily be right for another. I believe with regard to food etc. that a balanced diet is best, but if you do 'cheat', the guilt you feel over having the offending food/drink item will be far more detrimental to your skin than anything you ate/drank in the first place. These are more universal tips that I believe could help most people going through TSW. I have also included a few things that I wish I had done during my own withdrawal.
***
I would highly recommend keeping a photo diary of your withdrawal because even though you might not feel like you are making any progress, photos will make you realise just how far you have come. Another reason is because when I got better and looked back over photos from my withdrawal, I couldn't believe how bad my skin was. I think your mind as a kindness sometimes blocks out certain tough memories and now those first few months of withdrawal are a blur. I am so grateful that I took photos. You don't need to do anything with them, but just knowing you have a record of what you went through, and survived, is empowering.
Do not feel guilty about scratching your skin. I hear a lot of people berating themselves for doing just that. Guys, it's impossible not to scratch sometimes. Where possible, try not to, but if you have to do it, just do it. This is a bit of a weird theory I have, but I believe you are actually meant to scratch. The body is trying to rid itself of the skin it doesn't want anymore, and the only way it can do that is for it to come off in flakes, or be scratched off. I am not advising you to rip your skin open with joie de vivre, I'm just telling you to give yourself a break from worrying about it so much.
Distract yourself as much as possible by concentrating on the things you love. For me, that was writing, reading Judith McNaught romance novels (I don't care, she is fabulous), rereading Harry Potter, watching Jonathan Creek reruns at one in the morning when I couldn't sleep – anything, just try to take your mind off what you are going through when you can.
Try to keep cool. I started withdrawal when the UK was in the middle of a heatwave and I can't tell you how much that added to my overall discomfort. In an attempt to make me feel more comfortable, my mum bought me an electric fan which made the world of difference. A lot of people also suggest using ice packs to kill the itch, but for those of us who don't have a freezer, what I found effective was filling a glass bottle with water, putting it in the fridge then rolling it over my skin. It was absolute bliss on irritated, hot skin and sometimes stopped me from scratching. Sometimes …
Don't overthink things, overanalyse what is happening to your skin or try to work out how long it will take to get better. Just try to trust the process and accept that time is the only true ‘healer’ of TSA.
Try to stay positive when you can. Knowing I wasn't using topical steroids anymore and was on a path to healing my ‘eczema’ really helped me stay focused.
On the days – months even – when everything feels too much, give in to it. Accept that you can't be positive every single moment of the day and just go with the motions of withdrawal.
Invest in some loose-fitting cotton pyjamas. For a long time, they were about the only thing my skin could tolerate. For UK sufferers, M&S sell reasonably-priced, but well-made, pyjamas that can withstand A LOT of abuse – from being washed constantly, covered in copious amounts of petroleum jelly, ooze, and all manner of fun stuff like that.
Where possible, try to accept any changes to your skin whether they are good or bad. This is something I struggled with until only recently and have had a few bouts of anxiety over small, innocuous rashes where I would panic that I was going to flare again. My rashes have never amounted to anything, but if you do end up flaring, remember that it won't last.
Don't suffer in silence. When I was going through withdrawal, there wasn't much of an online community like there is now – all there appeared to be was a forum, but I found I couldn't go on there much as it depressed me. Now, there are the most wonderful Instagram and Facebook communities that I feel very lucky to be part of. Reach out and make some fabulous new friends who will understand everything you are going through, answer any questions or fears you might have and root for you every step of the way. Send me a comment or message via Instagram (@carasnextchapter) and I'd love to follow your journey back to health.
Do not feel guilty about scratching your skin. I hear a lot of people berating themselves for doing just that. Guys, it's impossible not to scratch sometimes. Where possible, try not to, but if you have to do it, just do it. This is a bit of a weird theory I have, but I believe you are actually meant to scratch. The body is trying to rid itself of the skin it doesn't want anymore, and the only way it can do that is for it to come off in flakes, or be scratched off. I am not advising you to rip your skin open with joie de vivre, I'm just telling you to give yourself a break from worrying about it so much.
Distract yourself as much as possible by concentrating on the things you love. For me, that was writing, reading Judith McNaught romance novels (I don't care, she is fabulous), rereading Harry Potter, watching Jonathan Creek reruns at one in the morning when I couldn't sleep – anything, just try to take your mind off what you are going through when you can.
Try to keep cool. I started withdrawal when the UK was in the middle of a heatwave and I can't tell you how much that added to my overall discomfort. In an attempt to make me feel more comfortable, my mum bought me an electric fan which made the world of difference. A lot of people also suggest using ice packs to kill the itch, but for those of us who don't have a freezer, what I found effective was filling a glass bottle with water, putting it in the fridge then rolling it over my skin. It was absolute bliss on irritated, hot skin and sometimes stopped me from scratching. Sometimes …
Don't overthink things, overanalyse what is happening to your skin or try to work out how long it will take to get better. Just try to trust the process and accept that time is the only true ‘healer’ of TSA.
Try to stay positive when you can. Knowing I wasn't using topical steroids anymore and was on a path to healing my ‘eczema’ really helped me stay focused.
On the days – months even – when everything feels too much, give in to it. Accept that you can't be positive every single moment of the day and just go with the motions of withdrawal.
Invest in some loose-fitting cotton pyjamas. For a long time, they were about the only thing my skin could tolerate. For UK sufferers, M&S sell reasonably-priced, but well-made, pyjamas that can withstand A LOT of abuse – from being washed constantly, covered in copious amounts of petroleum jelly, ooze, and all manner of fun stuff like that.
Where possible, try to accept any changes to your skin whether they are good or bad. This is something I struggled with until only recently and have had a few bouts of anxiety over small, innocuous rashes where I would panic that I was going to flare again. My rashes have never amounted to anything, but if you do end up flaring, remember that it won't last.
Don't suffer in silence. When I was going through withdrawal, there wasn't much of an online community like there is now – all there appeared to be was a forum, but I found I couldn't go on there much as it depressed me. Now, there are the most wonderful Instagram and Facebook communities that I feel very lucky to be part of. Reach out and make some fabulous new friends who will understand everything you are going through, answer any questions or fears you might have and root for you every step of the way. Send me a comment or message via Instagram (@carasnextchapter) and I'd love to follow your journey back to health.
*And now, for a few things I wish I had done through my own withdrawal*
– Doubt –
I wish I had saved myself a fair few sleepless nights by always keeping the faith that I would get better. Doubt is a symptom of TSW that is not widely talked about which I find deeply sad as I think it can be one of the most destructive. Due to the nature of our condition we are fighting, on the whole, against a body of people we have been conditioned to listen to and trust implicitly: doctors. It is not their fault per se, and I have immense respect for their profession, but there must be a better understanding and education on the dangers of topical steroids to save others from having to go through a totally unnecessary process. Or, in the worst-case scenario where the person’s skin is already addicted, having much-needed medical support for sufferers, because we are having to go through this traumatic period of our lives mostly on our own with only blind faith, and a handful of testimonials, to fall back on that we do actually get better.
Regardless of any doubt I experienced through my own withdrawal, there was no way I would EVER have gone back to using topical steroids again because I knew wholeheartedly they were not the answer and were only masking the real problem – not to mention how dangerous they are to use long-term. I did have some very dark times through withdrawal when I thought that maybe the doctors were right, I just had ‘incurable’ eczema. It didn't help that well over a year into withdrawal I had a long, stagnant phase where it was obvious I had improved, but was still suffering badly and certain areas were actually getting worse. There was also the fear that even though most of the swelling had gone down and I looked more like myself, I was still distorted by thick, irritated elephant skin and was scared that this was how I would look for the rest of my life and at times I'd torture myself by looking at old photos pre-TSW and couldn't imagine being that person again. Now, my skin is better than it EVER was before withdrawal – and that is without having to use anything on it. If I had ignored the doubt I felt and just accepted that I'd get there eventually, it would have made withdrawal SO much easier.
Regardless of any doubt I experienced through my own withdrawal, there was no way I would EVER have gone back to using topical steroids again because I knew wholeheartedly they were not the answer and were only masking the real problem – not to mention how dangerous they are to use long-term. I did have some very dark times through withdrawal when I thought that maybe the doctors were right, I just had ‘incurable’ eczema. It didn't help that well over a year into withdrawal I had a long, stagnant phase where it was obvious I had improved, but was still suffering badly and certain areas were actually getting worse. There was also the fear that even though most of the swelling had gone down and I looked more like myself, I was still distorted by thick, irritated elephant skin and was scared that this was how I would look for the rest of my life and at times I'd torture myself by looking at old photos pre-TSW and couldn't imagine being that person again. Now, my skin is better than it EVER was before withdrawal – and that is without having to use anything on it. If I had ignored the doubt I felt and just accepted that I'd get there eventually, it would have made withdrawal SO much easier.
– Write a diary –
Oh my goodness, I can't tell you how much I regret not keeping a diary and logging everything that happened to me – or better yet, I wish I had started my blog from day one of TSW over four years ago. Now, I receive a lot of emails, messages and comments from others going through withdrawal asking me about various symptoms etc. that I experienced. Like I said earlier, I have forgotten so much of my own withdrawal and some periods are hazy. I am so grateful to my mum who along with keeping a diary from the first month of withdrawal, dug up a lot of emails she sent to my aunt and uncle and a few close friends which read pretty much like diary entries. The full post made up of my mum's pieced-together emails can be found (here).
I strongly believe that stress was the main cause of my original eczema and now the multitude of studies that show just how much of a detrimental impact it can have in all areas speaks volumes. When I first got better, I introduced meditation into my daily routine and it made a huge difference to my appearance and general wellbeing. After a few months of meditating daily and absolutely loving it, life got in the way, and I found I was a lot more anxious without it. I'm not saying it ‘heals’ TSW, but I would like to have seen what impact it could have had on my withdrawal, at least mentally.
– Exercise –
I wish I had exercised a little more than I did instead of setting a new world record for sitting on the sofa. I think this is a little flippant of me to say though as in reality, I was in too much pain most of the time to even consider exercising, but looking back, I wish I had pushed through the pain as I really think it would have helped me.
– Moisturiser –
I wish I hadn't used moisturiser from the beginning of withdrawal, especially petroleum jelly (to read about my moisturiser history and eventual withdrawal from it, click *here*). After a lifetime of using moisturisers, I just assumed when I started withdrawal that I’d need them and at the time, most people's advice for dealing with TSW was to use petroleum jelly, which I did, but was very quickly sucked into this vicious cycle of being totally dependent on it to achieve a certain level of comfort and hating every minute. It was hellish, taking well over an hour to sink in – I have a memory from the first few months of withdrawal when the UK was in the middle of a heatwave and a daddy long-legs flew onto my shoulder and got stuck on my petroleum jelly-slicked skin … I did not enjoy that experience. It also wrecked my mum's washing machine and was an absolute nightmare to get out of my clothes. Use if you must but with caution.
They are all the tips I have for now but over time I will add to this post if I think of anything else that might help.
Love & hugs,
Cara xxxx
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