Some TSW-related thoughts

Since I've started writing a book about my experience of going through TSW (which I announced *here*), it has forced me to think about a lot of things I've tried to forget but seeing as I am very close to reaching four years of topical steroid withdrawal, I thought I'd share some thoughts that have been on my mind lately.

One thing in particular that has amazed me is how TSW, which was such a huge part of my life for so long, now feels like some kind of dream and it is only in the moments where I get a rash and my anxiety goes into overdrive, or I really force myself to think about the experience, do I remember what I have been through – the scratching, the sleepless nights, the oozing ... all of it. Now, it all feels like it happened to someone else … but how can something that was my life now feel like it never existed?

I suppose it's a pretty fortunate question to find myself pondering but still, I'm stunned how easily I've been able to forget just how hard those two plus years were. I suppose pain is like that though, isn't it? I remember years ago when I'd just had two wisdom teeth out and got an infection, the pain was unlike anything I'd ever experienced in my life, and as I sat in A&E feeling like I would never be comfortable again, I made a solemn vow that I would never take my health for granted ... but of course, I forgot all about that and carried on with my life – or perhaps you have a particularly bad period pain that is severe enough to make you never want to have children ... until you feel better and get all broody. Pain is temporary and to anyone reading this, there will be a time where you’ll forget all this discomfort and pain you are going through and be able to appreciate the present. Don't get me wrong though, I am still healing from TSW mentally but physically, I think I've moved on and soon, I know my mind will follow.

Over time, as my hands have gone from strength to strength, I find myself looking at them almost in awe, completely baffled that the skin has healed the way it has. I have said this before but looking at my hands at certain points during the second year of withdrawal especially was as if I was looking at someone else's hands. Now, I can't for the life of me remember exactly how it felt to not be able to move them properly or the pain of scratching them until they bled.

Even though I have forgotten so much of the pain I went through during TSW, one thing is for certain: I will NEVER take anything for granted again – whether it’s my health, just feeling comfortable or knowing what a pleasure it is to do something as simple as feeling the sun on my skin. The small moments are precious to me, and I will do everything in my power to hold onto them.

I don't know if there was much point in posting this, but I feel like it has been bubbling up inside me for a while now and I hope it at least helped someone out there remember that one day, TSW will be a part of their past too.

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

Hand-some

I have wanted to do this post for AGES but every time I have gone to write it, I've held off, for fear of tempting fate. Out of every part of my body through withdrawal, I would say my hands and I have been on the most turbulent journey together, but after months where I haven't really had a single issue with them, bar a miniscule rash last month which went quickly, I feel the time has come to take the plunge and finally do this post. For my own sanity, and in a bid not to jinx anything, I'm going to acknowledge that the current condition of my skin might only be temporary and as you probably know by now, I will never utter the H word (healed) because that feels like it would be courting bloody DISASTER.

I suppose our hands tend to take longer to get better as we use them so much in our everyday lives and they take the brunt of everything we do and for me at least, their recovery has certainly not been linear. Over my three, nearly four, years of withdrawal, there have been many ups and downs and we have definitely come a long way together. 

Recently, I've noticed a lot of people who are much further on in their withdrawals talk about experiencing a lot of trouble with their hands, just like I did, so this post is for you. If you are suffering right now, I want you to remember that with each day that passes, you are one day closer to getting better and those tough days (more like weeks and months) are only temporary. 

I have broken down the journey my hands have been on by year with pictures and a general overview of what they were like. The photos don't really show just how bad things got but they do offer some insight which I hope you find helpful ... or you could say, handy. Please forgive me.  

YEAR ONE

*June 6th 2013 - June 5th 2014*

In the first year my hands were bad with some weeping, a lot of redness and some swelling and irritation but they weren't as severe as other areas of my body and I didn't really experience that bone-deep itch.

Here are some photos of my hands/wrists taken over the first year:

YEAR TWO

*June 6th 2014 - June 5th 2015*

I can safely say that it wasn't until the second year that my hands really took a turn for the worse. At this point, I still believed my 'healing' was going to be linear, so when certain areas like my hands started getting MUCH worse, that was when a lot of my doubt, fear and anxiety really kicked in. I noticed my hands and wrists start to get really bad around the time of my anniversary flare in June/July 2014 and as the months wore on, all they seemed to be doing was getting worse. It was hell - the itching was intense, they were so swollen and would weep intermittently. There were also lots of deep cracks in the skin and I have to say, looking back, it's a miracle I never got an infection in the months where they were that bad.

For a long time I couldn't really move my hands much at all and it wasn't long before my mum, on top of doing so much else for me, started having to wash my hair and do other things like wash my hands when I couldn't cup the soap - and even times where she had to put my shoes on for me as I couldn't bring my fingers together to tie my laces. I remember moments during the second year where I'd look at my hands as if they belonged to another person - they felt completely alien to me. I think by this point I had accepted my skin was bad generally, but for some reason I couldn't seem to get it in my head that these were MY hands.

In the second year, I never really had any kind of let up and it was only in the summer of 2015, a few months before making a sudden recovery, that things started to slowly improve.

Here are some photos of my hands/wrists taken over the second year:

YEAR THREE

*June 6th 2015 - June 5th 2016*

This was the year that marked my sudden recovery from TSA in mid-August 2015. For the first few months after getting better, my hands were fantastic - I got the occasional minor rash that would go quickly but there was no irritation and certainly no weeping. It was wonderful and such a relief after the previous year of absolute hell. I could wash my hair again and do things for myself. Trust me when I say you don't appreciate how wonderful the small things are until they are taken away from you.

As the weather grew colder, I started to worry. Would I flare again? In the November, I was offered a job in London, which I very nearly didn't take as I was so nervous my skin was going to get bad again. In the end, after telling myself that I should never let fear dictate my life, I took the job. Soon after starting though, I noticed my hands were coming up a little more rashy - I am not sure if it was down to the literally hands-on job or the colder weather but they were definitely reacting to something. Thankfully, they never got bad enough to impact my job or life and would always calm down pretty quickly, unlike the previous year where I seemed to be trapped in this perpetual flare.

At this point, my hands seemed to be in this rashy cycle where they'd come up a bit, then calm down again but as everywhere else was so good, I could deal with it.

As part of my job, I went to Verbier in Switzerland at the end of 2015 and it's safe to say I wasn't there to relax - it was full on from the moment I got there. A few days before going, I noticed my hands (especially my right hand) coming up, but it not enough to concern me. When I arrived in Switzerland though, things very quickly got worse. I was terrified I was going to flare badly and I remember moments frantically thinking of ways I could come back to the UK without getting fired. As the days passed in Switzerland, my hands got more swollen and cracked but as soon as I came back to the UK a week later, they started to calm down and in the subsequent weeks, returned to normal. For the next few months, my hands followed a similar cycle to how they were just before Switzerland, trapped in this rashy cycle, but as the symptoms were minor, they didn't bother me.

In late March, early April, I had to go back to Verbier in Switzerland as part of my job and had a pretty much identical reaction to the first time I went there - the only noticeable difference being in my recovery time, which was a matter of days. I was completely amazed by how fast my hands recovered.

I am still trying to understand exactly why my hands reacted so badly both times I went to Verbier and the only thing I can think of is the high altitude. I think that, teamed with having to use and wash my hands constantly was a total recipe for disaster. Perhaps if I had been in Switzerland on holiday, I might have had a reaction but a minor one ... on a related note, Verbier is absolutely fabulous and well worth the trip :)

What I would like to finish by saying was that even when I experienced any rash or issue with my hands in the third year, I don't think I scratched them once. They were obviously uncomfortable at times, especially when I was in Verbier, but never really itchy. Very, very odd.

As the weather grew warmer again, I noticed a marked improvement in the texture and look of the skin on my hands. I'm not saying they looked bad in earlier parts of the year but as the summer wore on, the skin was more delicate, softer, and over time they just went from strength to strength.

Here are some photos of my hands/wrists taken over the third year:

My hands not long after moving to London:

My hands during my time in Verbier (from Sunday 27th December 2015 - Sunday 3rd January 2016):

My hands when I got back to the UK:

My hands when I went to Verbier again (from Saturday 26th March - Sunday 3rd April 2016):

My hands when I came back to the UK:

YEAR 4

*June 6th 2016 - present day*

In the summer, things continued to improve and at the end of September 2016, I left my job and moved back in with my mum full time. Now, and I am not sure if it was because my lifestyle wasn't as crazy and I didn't have to constantly use my hands and keep washing them for my job, I found that from this point things got even better.

Around mid-November though, I got a bout of hives and some small, irritated rashes on my hands which didn't last long and apart from that, up until now (May 2017), I haven't really had a single issue with them and went through pretty much the entirety of the winter unscathed. I've mentioned this on my blog before but apparently hives are one of the last stages of withdrawal, and I think for me, I'm inclined to agree, let's hope so anyway.

Here are some photos of my hands/wrists taken over the forth year:

The photo on the left is of the hives/small rashes I got that went very quickly:

I feel I need to end this very long post by saying again that I could be very wrong and this might only be temporary but we'll never really know until (IF) it happens ... but I do genuinely feel like my hands are better for good now *TOUCHES ALL THE WOOD*

I hope you have found some comfort from my story and if you are currently struggling with your hands, I truly hope you see a marked improvement very soon as I know how hard it can be.

Time. Heals.
Cara xxxx