My top tips for going through Topical Steroid Withdrawal

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.

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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.

*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.

– 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).

– Meditation – 
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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Skin Food: Chicken & tomato warming winter bowl

I promise that not every recipe I post will involve being served in a bowl, and I don't know if this is just me here, but in winter I want hot bowls of food opposed to anything on a plate. Everything is just so much better in a curved bit of crockery.

This is my mum's recipe and one we now have every Thursday (yay for routine!) and back when I was living in London and I'd visit Mum, she'd cook this just before I left as it always set me up for the rest of the day.

The ingredients are all natural and oh so good for you and the end result is absolutely delicious and so comforting for this time of the year.

Enjoy!

Chicken & tomato warming winter bowl

Serves 2
Cooking/prep time: 35 minutes
Price per portion - £2.50 (or under, depending where the ingredients were bought)

Ingredients needed:
- 2 Whole chicken breast fillets, chopped into cubes
- 1 Tin of peeled plum tomatoes (You can use chopped but Mum found that you get lots of bits like that)
- 150g Brown rice
- 1 Courgette
- 6 Medium sized mushrooms (closed cup)
- 1 Medium onion, finely chopped
- 1-2 Cloves of garlic, chopped or crushed

Method:
1) Boil a large pan with water for the rice.
2) While the water is boiling up, chop your onion then gently cook in the oil of your choice (we use about a tablespoon of olive oil) then wash, slice and quarter your courgette (so it cooks quicker).
3) While the onions are cooking, and your other pan has come to the boil, add your rice and bring it back to the boil then simmer for however long your rice takes (ours is done in 28 minutes).
4) When the onions have softened, add the courgettes and stir thoroughly. After that you want to wipe then peel your mushrooms and trim the end of the stalks before slicing. *Remember to keep stirring your onion and courgette mixture.* After preparing your mushrooms, chop/crush the garlic.
5) When the courgettes have slightly softened, add the mushrooms and after mixing them thoroughly together, chop your chicken. Add the garlic to the courgettes/mushrooms and leave it to cook for a couple of minutes.
6) Cook chicken in a separate pan (only a small amount of oil needed) for 7 minutes.
7) Add tinned tomatoes to the courgette/mushroom mix and when they are in the pan, cut off the stalky ends of each plum tomato and with the end of your spoon, chop the tomatoes roughly into the mixture and stir. Let it simmer for about 8 minutes.
8) About five minutes after the tomatoes have gone in, add the chicken from the other pan and stir thoroughly before letting it simmer for a few minutes until the rice is cooked.
9) SERVE IN A BOWL and enjoy :)

*Waits patiently for it to be Thursday so I can eat this again*
Cara xxxx

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TSW tears on Valentine's Day

If my memory serves me correctly, I cried three times during topical steroid withdrawal. Don't get me wrong, I cried many times through that period, and I'm still recovering from watching the film War Horse, but I'm talking more specifically about TSW being the cause, and in that case, I can only think of three occasions where I really let the tears fall.

The first time I cried I think I was well over a month into withdrawal – more like two – so we are talking about a time where I was full body flaring. On that particular day, I also experienced nerve pain and the feeling of bugs crawling all over my skin – plus, I was just so tired from the sheer lack of sleep and completely confused and scared that I burst into tears of futility. The second time I cried was a few months later and was once more down to a mix of tiredness, pain and fear. I even remember where I was sitting when I cried. Strange the details you remember sometimes.

The third time was on Valentine's Day two years ago. For a while up to that point I'd not been doing so well. My hands seemed to want to outdo themselves on how bad they could get, I was SO uncomfortable and I had really started to let doubt in. No matter how positive your approach to withdrawal is, chances are you are going to feel a little scared/doubtful/worried from time to time.

Before I elaborate any further, I'll attach some photos so you can see exactly what my skin was like around that time:

Well anyway, as the day wore on, all I seemed to see online were girls excited to get ready to go out that night – they were getting their hair done, putting make-up on and wearing fabulous clothes. There wasn't a specific image or person that sent me over the edge, but all of a sudden I was crying – really crying. I wept for the life that had been taken away from me. I wept for not being able to do the same as those girls. I wept for not knowing when (or if) I'd get better. I wept hard. I hasten to add this had pretty much nothing to do with the man/date itself – more knowing that I couldn’t do anything I wanted to. At this point I couldn't even leave the house or, let's be real, change out of my pyjamas. Ultimately, I just wanted to be a woman again and didn't care whether it was going out with a group of girlfriends for the night or just having the choice, but I think that was definitely the lowest day of my withdrawal. When I then add that only a mere six months later my skin suddenly transformed, I think it says a lot. Even now, I am learning to be more open-minded about anything that comes my way as even the smallest rash can still be the catalyst to a breakdown ... but after all these experiences and years of having to second guess what my skin is going to do, I am trying to retain some faith that everything is going to be ok – and so far, it is. I sit here with skin I never dreamed I'd have in my life – no topical steroids, no immunosuppressants ... the list goes on.

This year I'm most likely watching Gilmore Girls (my new favourite thing) then Sex and the City with my mum, who I live with, which might not sound like a twenty-something woman (nearing thirty – I'm in denial) living life to the full, but it's my choice. The reason quite simply is that I have not met a man I want to date and since going through TSW, my standards have pretty much skyrocketed. I feel like I deserve more now and know what I want. In reality, that means I am holding out for an exact replica of Tom Selleck. If you have read my trichotillomania diary, you'll know I've been single for a long time and I can most definitely already hear the pitter-patter of tiny feet (I'm talking about the cats, naturally) waiting for me to welcome them into their new home as I more than likely enter my thirties single ... en route to the convent.

If you are going to be indoors tonight in your pyjamas because you are not well enough, or, you are better like me but choosing to stay indoors, let's make a pact regardless that the person we say we love this year is ourselves. The love of Yourself is by far the hardest partner you will ever have to woo. So, from one friend to another, I want you to look in the mirror and say, 'I love you' today because you are SO worth it.

Wishing you the happiest of Valentine's Days <3
Cara x

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My Topical Steroid Withdrawal update – Month 44

It's time for my monthly update post. I was planning on making this the last one but after an interesting skin month (don't worry, I've not flared at all!), it would be a very odd place to leave it but next month will definitely be the last one ... I think. As per, here is what has happened with my skin over the last month:

• On the evening of Friday 6th January 2017 my cold got worse and as a result, my lips were drier. My skin also felt really crappy (dry and sore) and I kept expecting to see redness when I looked in the mirror but there was nothing. My lips recovered very quickly, along with the sore/dry feeling.
• On the evening of Monday 9th January 2017 my skin felt irritated and the rash on my forehead came up a little. I took an antihistamine and very quickly everything calmed down.
• On Saturday 14th January 2017 I decided to cut out refined sugar (along with things like honey etc, only having fruit sugars or food that turns into sugar) for a while as I had not been feeling too great and when I did it in August 2015 for about four months, the difference in my skin and body shape was crazy. After a few days of not eating sugar and having a really healthy diet, on Monday 16th January 2017 a couple of rashes came up on my face - the good ol' reliable one that has made many a cameo appearance on my forehead for the last few months returned (and was a little bigger this time) and another to the righthand side of my chin - plus I also had very dry lips. I think my skin came up not only because I took out sugar but also due to my period, lots of stress and very cold weather. I don't believe those factors on their own do much but if the timing is right, and they all happen at once, they have the ability to produce a small reaction on my skin. When the rashes first came up, I thought I was totally cool with them, until I woke up in the middle of the night and had an almighty panic attack. Not pleasant. I think I am only really dealing with TSW now and for the last few months I have experienced more anxiety than I ever have before. I could lie to you and just glaze over these things but I do feel you need to be prepared - TSW is tough in every imaginable way. Still the most rewarding experience of my life but that doesn't mean it's been easy. I really wish the mental symptoms were talked about a little more within our community as they are just as debilitating as the physical ones. Back on the subject of sugar, I feel SO MUCH better now - the quality of my skin has just been amazing recently, the rashes have gone, my lips aren't dry, the keratosis pilaris that I occasionally used to get on the tops of my arms (but had been much better since I started dry body brushing) has completely gone and the skin is so smooth and lovely again. I'm not talking specifically about TSW symptoms here but I do believe for me at least that not having sugar makes a massive difference. In a few months I'll relax the no sugar thing but I think I just need some proper time away from it again.
• I also want to add that even though the rashes have gone for now, I have a feeling the rash on my forehead isn't done with and there is still life in the old girl yet and it'll be making a few more appearances until it goes for good. Only a hunch though.
• On Friday 27th January 2017 the skin on my face felt so hot. I kept looking in the mirror and nothing showed but it felt like my skin was hot enough to fry a damn egg on it. Not the best feeling in the world and I'm wondering if it's just my skin adjusting ... again. Ah, the many symptoms of TSW!
• On Tuesday 31st January 2017 I spent the entirety of the day in front of the computer - I mean from seven in the morning until nine in the evening - and at the end of the day my skin felt irritated. The rashes on my face, even though you couldn't see them, felt irritated and my hands too. I definitely think sitting in front of a computer all day is terrible for my skin but unfortunately that is going to be my life for the next few months so we'll see how that goes. I'm going to try and find my old illusive friend balance to see if that will help me keep my skin calm.
• On and off over the month I've had the odd hive on my hands and arms - always ridiculously too small and faint to take a photo of though. I'm trying to find the website where I heard this but apparently hives are the last stage of withdrawal ... I'll take that. If anyone heard this too, please let me know. *Thanks to a lovely reader who sent me a link where it is mentioned (here).*

Hugs

Cara xxxx  

Next, is a video I posted via my Instagram Stories (broken up into two parts due to size) along with a couple of pictures from the evening of Monday 16th January 2017 where a few rashes etc came up on my face.

Next, are a few photos from another FABULOUS TSW London meetup that took place on Saturday 21st January 2017. Starting life as a picnic for three on the floor of the British Museum last summer to a twelve-strong group today, the meetups have come a long way. We went to a vegetarian & vegan restaurant called Mildreds in Kings Cross (here). It's always such a pleasure to speak to a group of people who truly get it and what a lovely bunch! If you live in or are willing to travel to London and would like to hear about future meetups, join the TSW London Network on Facebook (here). As always, thanks to the lovely Steph for organising it!

I thought I'd include another #TransformationTuesday post that I put up on my Instagram account (here). For reference, the photo on the left is from Saturday 24th January 2015 and the photo on the right is exactly two years later on Tuesday 24th January 2017. I have to say out of every part of me through withdrawal, looking at my hands back then was like an out-of-body experience - they felt totally alien to me, I almost couldn't understand what I was looking at, and could not for the life of me imagine them ever getting better BUT somehow the skin repairs itself so try to remember that absolutely anything is possible with this.

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