The (T)SW doctor

Imagine a doctor looked at your skin and said, “Well, patient X, you have a dependency to the medication that doctors like myself have prescribed you. Even though you used the medication exactly as directed, I’m afraid that you have developed an iatrogenic condition.

“But don’t worry, you’re going to be OK, what you are going through is totally normal and, most importantly, temporary. Therefore, I am prescribing you Netflix, to be taken visually, and 100g of chocolate, to be taken orally. Take baths as needed, take no baths as needed. Use moisturiser as needed, use no moisturiser as needed, because I’m afraid this part is down to you. You might not realise this, and it’s something we rarely acknowledge, but one size in medicine doesn’t fit all, and I can’t get inside your body to know what will work for you. But know that I am here for you, I will never gaslight you, and I will never call what you have eczema, because an iatrogenic condition and a skin condition are two separate things. 

“I believe that a number of my colleagues have called you ‘steroid phobic’, and I can only apologise on their behalf for choosing to ignore symptoms which are as clear as day. I fear that my colleagues need to get their heads out of medical textbooks and instead use their intuition.

“Please do contact me if you are concerned about anything, like a suspected infection, but if not, come back and see me in one month, and if you haven’t made an improvement by then … I wouldn’t expect you to because healing isn’t linear. 

“Find joy where you can, seek distractions, not cures, and get off that bloody phone because you shouldn’t compare yourself to anyone else.

“I wish you well, patient X, and I am here for you, I believe you and, most importantly, you are not alone … and the doubt you are likely feeling is unfortunately part of this process.”

* * *

I might not be a doctor, but I am someone who went through what you’re going through and got better, and this is what I’d say to anyone going through withdrawal right now. 

Withdrawal is awful. It’s one of the worst things most of us will ever have to go through in our life, but it is temporary.

Sending love and healing, always,

Cara x

Me and my little black cloud

For over four years I had a little black cloud that would sometimes hover over me peacefully then at other times storm. This cloud was my anxiety, which came into my life during TSW and was shaped by PTSD.

I know I say this a lot but I think we all need to appreciate just how much of a terrible toll this process can take on us mentally. The worst thing about having to go through any kind of mental health problem is that we can't see it, we can only choose to believe it. Physical trauma gives us proof that we actually suffered, we have scars. Mental scars are there, but they are invisible. The good news is that our scars can fade – mine have.

Now, when people ask how long it took for me to recover from TSA (...still not using that H word...*coughs: healed*), I say it took two years physically and another two for the mental symptoms to catch up. Just after I had recovered physically, I may have looked better and felt happier than ever, but really, I was a wreck. For over two years, I had been to hell and back and when it was over, I thought I would be able to walk away unscathed, but our minds soak up everything. We are sponges.

TSW is a trauma, never forget that, made all the worse by the fact that we shouldn't have to go through it in the first place. You can be the strongest person on earth and yet still suffer from mental health problems – and don't think for a moment that to suffer mentally makes you a weaker person. It only makes you human.

I would like to tell you something positive now. I can safely say that I no longer suffer from anxiety as a result of TSW. Last year, after filming with Nina and Laura as part of Briana's Preventable documentary, I knew something had suddenly changed and I wouldn't suffer from TSW-induced anxiety anymore ... although I wasn't able to really put it to the test till now. Two years ago, around June 2016, I suffered from mild urticaria, which is essentially a kind of skin rash with hives. A couple of weeks ago, due to the heat wave we've been experiencing in the UK, it came back. Two years ago, when I got urticaria, my anxiety was through the roof, to the point where I suffered from panic attacks. I was in a very dark place. This time, I was able to accept it for what it was; a heat rash, and I knew that it would go, just like it did before. I embraced it. Everything was ok. It was only temporary. Just like before, I couldn't even take pictures of it it was so faint and guess what? It did go, and much quicker than the last time. Remember our skin is always fighting for us.

Just like my anxiety, there will always be clouds, but for now at least, my little cloud is white and fluffy and warmed by the sun, which has broken through after four years of darkness.

Never beat yourself up if this process gets too much for you. TSA is an horrific skin condition and one not to be taken lightly. We are all victims of a flawed system which has to change.

I will never regret going through withdrawal. It changed me for the better and gave me so much more than it took, because every cloud has a silver lining.

Cara x
SaveSave

And so another adventure begins...

This is a little post to simply mark another milestone. Today, I'm moving back to London and this time I think I am doing it right. Not only am I in the best place mentally but I am also moving in with my best friend and starting a new job in a week's time that I am SO excited about - plus the hours are good enough that I can still work on writing and my books in my spare time. When I last moved to London towards the end of 2015, I'd only just recovered from TSW and was thrown in at the deep end with a job that was just too intense, not giving myself any time to deal with what I had been through for the last two years.

I also realised something rather strange the other day. Last summer was a really bad time for me - not only was my anxiety at an all-time high but personally there was a lot going on in my life. I started doing a lot of thinking and I very quickly realised that how I was feeling and how I reacted to things all pointed back to my experience at secondary school. Secondary school was a place that changed who I was as a person and left me with pretty much next to no self-esteem - I became a shell of my former self. I also developed Trichotillomania and Dermatillomania and my original (non-steroid induced) eczema was so bad that I now believe it was down to all the stress I was under at school.

A year ago on Friday 8th July 2016, I decided to visit my old secondary school and write it a letter in a bid to try and find some kind of closure, which I then threw in the bin of one of my old common rooms and walked away without looking back (I wrote an Instagram post all about it *here*). Exactly one year later, I am moving to London and in that time I have not only got to the best place with my Trichotillomania and Dermatillomania but written and self-published a book about my experience, written another 100,000+ word draft of a potential novel I'm excited about, started work on a book about my TSW experience, handed in my notice to my old job, moved back home and learnt so much about myself as a person.

In the last two years of my journey I have dealt with, at times, crippling anxiety and a definite case of PTSD but I think through a mix of meeting others going through TSW, tackling issues head on instead of burying them and a lot of deep thinking, I am truly healing.

Right, my next post will be coming to you from London so bye bye beautiful countryside and hello to pollution and overcrowding ... I can't wait!
Cara xxxx

Mental healing & the TSW documentary

Still from Preventable: Protecting our Largest Organ on Friday 23rd July 2017.

I apologise for my blog absence over the last few weeks but I think it's safe to say that life has been insane - I've been up at 5.30 a.m. commuting into London every day temping, job hunting then after work, going for interviews. In between all that I've been trying to catch up with everything else that has been neglected, along with moving madness (I move back to London in under a week!!!) but as I had an hour to spare this morning, I just knew I had to write a post that it would have been an absolute sin not to cover as it had such an impact on me and my TSW journey.

Many months ago Briana Banos, who I have featured on my blog before (here) & (here), contacted me to ask if I would like to be part of the documentary she was making about the dangers of topical steroids: Preventable: Protecting out Largest Organ. The decision to be involved was a no-brainer and so on Friday 23rd June 2017, I made the trip to Kent where filming was to take place. I was welcomed into the home of the parents of Kelly, a fellow TSW suffer, who had been hosting Briana since she arrived in the UK - Kelly and her family are simply wonderful <3. I met Briana along with Nina (here) and Laura (here), who I would be filming with and I can safely say I had the most incredible day. Nina, Laura and I filmed a segment together then after a short break, filmed separately and I would be lying if I said I didn't get emotional talking about it all. I don't know why exactly but when I spoke about my withdrawal this time, I felt like something had shifted - a weight had been taken off my shoulders, I felt a total sense of peace. I have written thousands of words on this blog, my Instagram and the internet about my TSW experience but something about saying it out loud in a situation like that - and being with two other women who had come through it and recovered fully - had a profound effect on me. There was also something rather extraordinary (and totally surreal) for me to be able to meet someone I had watched when I was suffering. If you haven't seen Nina's YouTube channel (here), she is such an inspiration and definitely kept me going on the dark days so it was quite a moment to be able to sit down next to her and simply say thank you. Nina also brought her parents along with her, who were just amazing. I left with this wonderful, warm glow and the most incredible sense that everything was ok. Truly the loveliest day with the loveliest group of people <3

Here is a teaser from our day filming for the documentary on Friday 23rd June 2017.

Clockwise from left to right: Laura, me, Kelly, Nina and Briana <3 

As if I that wasn't fabulous enough, I got the cherry on top of a rather calorific cake on Sunday 25th June 2017 when Briana hosted a TSW London meetup. I have said this many times on my blog now but to actually talk face-to-face with those who truly get it - know exactly how it feels - is something that cannot be bought and more effective than any drug on the market.

A photo from the meetup, taken on Sunday 25th June 2017.

Briana and I <3

I truly feel like last weekend healed a part of me that was taking longer than any of the physical symptoms to mend. TSW takes time but I promise you that it is time well spent - you might not understand exactly how this experience could ever be a good thing but looking back now, I am amazed that my life is fuller - richer - for the experience.

The people I have met on this journey have nothing short of amazed me. Briana is doing something as a community we should all be very proud of - AND ENTIRELY ON HER OWN. It is only a matter of time now before our forgotten condition is recognised for what it is - like topical steroids, you can only suppress the truth for so long.

So much love to my TSW family <3
Cara xxxx

Mind Medicine

I am excited to share this post with you as it relates to something that has had a big effect on me: therapy.

If you had told me five years ago that I would be saying that I would have thought you were joking because for most of my life, I found the notion of therapy, and psychiatry in general, a total waste of time – besides, I was 'fine', I didn't need it ... Then along came TSW which changed my perspective on everything. Suddenly, I was more open-minded and willing to see things a little differently.

Earlier this month I was offered a complimentary session at The Blue Tree Clinic in Wimpole Street, London, and it was like a weight had been lifted off my shoulders as I felt, for some reason, relieved. I think the idea of therapy had been building up inside me for many months so the timing couldn't have been more perfect.

I have discussed my battle with anxiety and panic attacks in the past and the fact that I definitely think I have some kind of PTSD from going through withdrawal. I have also discussed how meditation has been beneficial for my symptoms, but the problem with meditation, even though it is wonderful, is that it acts like a balm, masking problems, making everything appear to be better, but not actually getting to the root cause. I suppose it works a bit like topical steroids – suppressing symptoms instead of treating them then when you stop, BAM! Hello anxiety, how I've missed you, old friend ...

When I am in the throes of anxiety, it feels like I am in a caught in a tornado, trapped in the centre, my thoughts twisted, and you cannot understand what is happening as it is all moving so fast – but then suddenly, it's gone again, leaving you shaken and confused. It can come out of nowhere, too, leaving you no time to process your thoughts as your mind is spinning at such an alarming rate, and you try to think, to gain perspective, but you can't as you are already swept away by it.

At The Blue Tree Clinic, I first spoke with psychiatrist Dr Mark Silvert who then referred me to Dr Hadassah Lipszyc, a Cognitive Behaviour Therapist. We had our session on Thursday 25th May 2017 and I thought it might be helpful to blog about my experience. 

The session started with us talking about my background and everything I had been through with my skin. Going into it, I had this fear I would find it hard talking to essentially a stranger about things I wouldn't even share with some of my friends, but it didn't take long before I was at ease and comfortable enough to say exactly how I was feeling.  

I will obviously not be going into any detail about what was said, but we discussed many ways I could potentially manage my anxiety when it strikes, and also come to terms with some of the events that have shaped my life. She made me see things from another perspective and gave me some tools to help me combat my anxiety through a mixture of breathing techniques and shifting my way of thinking, turning the tables on how I view my anxiety.

What surprised me was how much we were able to cover in one forty-five-minute session. Her advice and understanding about the way our minds rationalise things was spot on and afterwards, I started doing a lot of thinking. Suddenly, I had all these feelings bubbling up inside me, almost as if they were coming to the surface, and I felt like I had opened wounds that wouldn't close until I found a way to heal them. I cannot begin to comprehend how beneficial regular therapy would be, and even though my session was complementary, it's certainly not my last. In the last four years, I feel like I have tackled all these huge personal milestones, like TSW and Trichotillomania, but there is still this gaping hole left by anxiety that needs to be addressed.

What I think the biggest gift of therapy is is that it truly makes you realise that you are not alone – all these terrible feelings you experience manifest in others, too. We are all so different, but at the same time, so very similar. We should take comfort in the fact that everyone is going through something and there is nothing wrong with you as you are only human.

I would like to thank Dr Mark Silvert and Dr Hadassah Lipszyc at The Blue Tree Clinic for this wonderful opportunity.

I hope you have found this post helpful, and for more information on The Blue Tree Clinic, you can visit their website, www.thebluetreeclinic.com.

You are not alone.
Cara xxxx

The many symptoms of withdrawal: Your Mental Health

After talking a lot recently about the mental symptoms of TSW, I realised I hadn't dedicated a whole post to it like I'd done for some of the physical ones. I've said many times now that the mental symptoms are tough and it's only in the months since recovering that I've realised just how deep those particular wounds go. Our mental health is sometimes overlooked in lieu of the physical symptoms you can see but why is our brain, such a vital organ in our body, not given more attention? I have talked about a few of my TSW-related mental health struggles before but I wanted to delve further into the issues I've experienced over my withdrawal. I have already written articles about doubt (here) & fear (here) that you might find helpful but I hope these other points I'll highlight today make you feel a little less scared.


–ANXIETY & PANIC ATTACKS–
Ah, anxiety... You can feel totally fine one moment then the next, BAM! You're so blinded with anxiety that you lose all sense of what is real anymore. There is a sinking in your stomach as you rapidly think ahead and start to see things that aren't there. You have a running commentary going inside your head spewing all these irrational thoughts: 'Wait, is my skin THICKER?!' 'Is my skin WEEPING again!?!' 'Is that ANOTHER rash?!?'

My anxiety was bad through withdrawal and it was only when I first got better and began meditating that I was able to manage my anxiety but a few months later, I started working in London and gradually the meditation went out of the window as I was too busy. Last summer I noticed my anxiety starting to come back again after developing an odd rash that I'd never had before and even though it was MINOR, soon I was spending nights crying over it. I mean, I couldn't even take photos of it as it was so faint but I just didn't know what was going to happen next - around that time I was planning to spend the night at my friend's house but had to leave early as I'd worked myself up so much. Last December I got a rash on my forehead. At first I was fine with it but suddenly, as I watched Home Alone with my mum, all of a sudden I was panicking that I was going to flare. I started over-analysing my skin, seeing changes to it that weren't even there. Recently, I got a few rashes on my face that I've talked about in previous posts and I thought I was ok, until I woke up in the middle of the night with an almighty panic attack. It was horrible - my mouth was dry, my heart felt like it was pushing through my chest and I had some of the most terrifying thoughts going around my head about my life and skin. None of the rashes I've mentioned above developed into anything but it didn't stop me from getting anxious. I'm working through my anxiety again with meditation and also trying to find some balance which I am terrible at and I'm hoping over time I can really say goodbye to it.

–DEVELOPING A TEMPORARY PHOBIA–
A few months into TSW I got a sudden and quite intense phobia of something. I am not going to tell you what as it wasn't pleasant and there is a strong chance it would affect you as it did me and send you into a scratching frenzy. It seems so strange but it really was the case that one day I suddenly had a phobia. It was so bad that I couldn't even think about it as it would make me start scratching FURIOUSLY. It sent shivers up my spine and made my skin prickle. There were times I would watch YouTube videos of it in a bid to overcome my fear but all it did was freak me out even more. Now, if I watched those same videos, I wouldn't have a problem with it at all. Absolutely bizarre.

–DOUBT, FEAR & WORRY THAT I'D NEVER GET BETTER–
With the 'slight' inconvenience of having most of the medical profession - those we are meant to trust - telling us that our condition doesn't even exist, it naturally leads to moments, days, MONTHS even, of doubt that you are either the only one that just has 'incurable' eczema etc or you will never get better, your skin is just too damaged and you are simply doing the wrong thing. As the title of this post suggests, these are all just symptoms of a very nasty, ignored, condition we have to deal with for the most part on our own.

–PTSD–

I have talked about this before but I do believe I have some kind of PTSD from going through TSW that I have only really come to terms with since getting better. You can't expect to go through something like TSW for all those months/years and come out of it scot-free. TSW will always be the best thing I've ever done for myself on so many levels but that doesn't mean it's been a piece of cake. The quote 'Nothing worth having comes easy' pretty much hits the nail on the head. 

It might sound like TSW turned me into this broken woman but it couldn't be further from the truth. TSW transformed not only how I see the world, but also my opinion of myself. It helped me FINALLY deal with two compulsions I had been struggling with for a very long time: Trichotillomania and Dermatillomania because I knew that if I could get through TSW, I could do anything. The anxiety might still pay me a visit once in a while but I'd gladly invite it over to stay the night if I could keep my new skin and the way I feel right now.

You know what's funny? Just writing these symptoms down, I feel so much better ... until I see a rash and think the world's going to end.

Whatever it is, you are not alone <3
Cara xxxx

Other posts in the series:

Elephant skin (Before and after) - here
Hair loss (Before and after) - here
Dry & cracked skin - here

Weeping skin - here

Red skin & sleeves - here
Puffy & swollen skin - here

The F word: FEAR

Continuing on from my post about doubt here I wanted to talk about another emotion that plagues Topical Steroid Withdrawal: fear. TSW throws many challenges our way but the toughest ones by far are invisible to the naked eye (and that's saying something). This post has been a long time coming as it's something that has definitely been there, simmering away, since I got better last August. The joy of having great skin for the first time in over two years was immense but for a while I expected that it wouldn't last. It didn't stop me from living life to the full but it was there, the fear that I could flare at any time. I remember when I got a few rashes again after a couple of weeks of clear skin my fear went into overdrive - that sinking feeling in the pit of your stomach that things would go back to the way they were. Then, late one Saturday night when I thought I was going to flare, I cried for hours. The next morning my skin calmed back down but it definitely didn't stop me from feeling scared.

When I moved to London last November, my skin came up slightly on my hands and again this vicious emotion reared it's ugly head - you start working out approximately 1,000 contingency plans of what you can do if you flare and can go from the happiest place on earth to the darkest in the space of seconds. All the memories from when it was bad come to the surface and you could easily sink into a black hole if you let yourself. Yet again, when I went to Switzerland last December, my skin started coming up and in my head I was already planning how I could get out of the country and move back in with my mum. It's a shame as because of that, I truly missed out on the beauty of where I was - I was surrounded by this literal winter wonderland and instead all I could see were dark clouds. Once more, my skin quickly calmed down. I am writing this from Switzerland but this time my mindset is totally different - I feel my skin coming up slightly on my lips and hands but I have decided to embrace this experience and just live for every moment and even though I am here for work, I am loving every minute of it.

(I should quickly say that the skin 'problems' I have experienced since I got better have been minor and not impacted my life - for the most part it's been the best skin of my life!)

For me TSW has been incredibly positive and I couldn't feel more grateful for the experience but I think with this blog I need to cover absolutely everything that I have gone through. I am getting more and more emails from you all about anxiety and I want you to know you are not alone. Also, I feel this is very important to mention: don't feel you have to be 'I'M SO POSITIVE!' every moment of the day - it's impossible to feel like that and sometimes you just need to give in to those emotions and ride with them because they will pass.

We are all in this together.
Cara xxx

The D word: DOUBT

Weeping skin? Grim.
Bone-deep itching? Hideous.
Burning skin? Horrible.
Insomnia? Tough.
Hair loss? Heart breaking.

...Doubt? TORTURE.


The physical side-effects of TSW are there for all to see, keeping us hidden away from the world and scared to leave the safety of our bathtubs ... but the thing that hurt the worst for me? The doubt that crept in to play with my mind. A variant of these statements were never far from my thoughts throughout the bad times of withdrawal:

'Will I ever get better?'
'WHEN will I get better?'
'Am I actually harming my skin more by doing this?'
'Are the doctors right?'
'Have I actually just got chronic eczema?'
'Will I ever socialize again?'
'Will I ever feel comfortable?'
'Will I ever just be a girl again and wear makeup and pretty dresses?'

Answer? You WILL get better. Never forget that.

I am not offering medical advice in this post and anyone who reads this, I cannot possibly tell you what you have but if you are here, I am sure you have at one time in your own withdrawal felt one (or more) of the above statements. It's hard when the world is against you to keep fighting, but the best things in life don't come easy and I have said it a million times, the hardest battle of TSW is your mind.

But it is a battle that is worth the fight.

For me I had no option but to do Topical Steroid Withdrawal. I was at a point where I could either use stronger and stronger steroid creams until there was nothing left or just go cold turkey. I try to keep positive and if you have ever seen any of my YouTube videos, you will already know that but it doesn't mean I didn't struggle with the mental anguish that TSW throws at you.

This post was inspired by a lovely lady who asked me on Facebook today if I had doubts going through my own withdrawal. I hope this helps some of you out there who may have been feeling the same way.

Sending you all BIG virtual hugs.
Cara xxx