TSW. Trichotillomania. Books. Life.

Tuesday, 29 March 2016

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
SHARE:

Monday, 7 March 2016

My Topical Steroid Withdrawal update – Month 33


Somehow another month has gone by (HOW IS IT MARCH ALREADY?!?!) and yesterday I hit 33 months since I stopped using all topical steroids. In the last month I have celebrated two huge TSW milestones - the first one being that I reached 6 months since my skin suddenly got better (post talking about that here) then last week when I hit my 1,000th day of Topical Steroid Withdrawal (post all about that here).

I haven't really got much to say this month bar my perpetual 'I'M SO GRATEFUL I DID THIS!' spiel. The only place I've had any rashes etc have been my hands but nothing that's caused me any problems whatsoever. I should also quickly say that it has been absolutely FREEZING recently but amazingly, I have had no reaction at all. I honestly can't believe it. Over the month I have marked down a few minor issues and things that I thought I'd mention quickly:

  • On the weekend of the 6th & 7th February 2016 I had a slightly itchy scalp and weird nerve tingles on my head plus some tingling on my face. It was a disconcerting feeling but nothing showed on my skin at all. 
  • From the 13th-21st February I ate a lot of bad food. My basic diet was very healthy but I added on a lot of extras that were exceptionally naughty. It had absolutely no effect on my skin though :)
  • I had a slightly lumpy chest on 26th & 27th February 2016 that is totally fine now.
  • On the evening of the 26th February 2016 my skin felt very dry - nothing showed on my skin though and the next day it was completely back to normal again.

Big hugs to you all
Cara xxx










I thought I'd add in the next photo as it was quite a big moment for me. On Saturday 5th March 2016, I went out shopping and bought both items pictured - while I was in the changing room, it hit me that they would be the first items of clothing etc that I would buy for myself where I wasn't motivated by comfort or 'I can't wear black because I will shed a layer of skin on it' or work. I simply bought clothes because I liked them and didn't have to think about why (I have no idea where I am going to wear that blasted dress though). It made me realise how much I had missed that, just being a girl. I had the most incredible weekend with my mum for Mother's Day and to be able to take her out for the day and go out together again was truly wonderful. Moments after TSW like this I will treasure forever. Everything has more meaning. Oh TSW how you have changed me!




SHARE:

Wednesday, 2 March 2016

One thousand days of TSW ... 'nuff said


Gosh, I have hit so many personal TSW milestones recently that I can't quite believe it! Today marks one THOUSAND days since I started Topical Steroid Withdrawal. One thousand of anything is so big and to think for over two thirds of the time I was suffering so badly, I just can't believe it.

In celebration of this milestone, I thought I'd include photos of all the before and afters I have posted of my skin most Tuesdays on Instagram (here) as part of the hashtag #transformationtuesday which I have been doing since last year. I don't think it will ever sink in that I was the girl on the left - it feels like another life completely. I am BEYOND grateful that I have these photos otherwise I know I would have forgotten just how bad it was at times.

Seeing the photos all together in this blog post really hits home what my skin has been through. How did it ever get that bad? And more importantly, how have we been ignored by the people who should be helping us?

Through TSW you lose your identity but end the end of it you bloom into a whole new person who is stronger, happier and much, much wiser than before. These photos show just how much things have changed for me physically but they truly don't show how much I have changed as a person.

I will be forever grateful.
Cara xxx

Tuesday 5th May 2015 (Left) & Tuesday 13th October 2015
Sunday 28th July 2013 (Left) & Tuesday 20th October 2015 (Right)
Wednesday 18th February 2015 (Left) & Tuesday 27th October 2015 (Right)
Monday 11th November 2013 (Left) & Tuesday 3rd November 2015 (Right)
Monday 29th July 2013 (Left) & Tuesday 10th November 2015 (Right)
(From left to right) 24th, 26th & 30th November 2015
*Photo of one of the the small flareups I experienced over a week on my 

right hand and how quickly it took to get better again.
Tuesday 2nd December 2014 (Left) & Tuesday 8th December 2015 (Right)
Tuesday 23rd December 2014 (Left) & Tuesday 22nd December 2015 (Right)
Sunday 28th December 2014 (Left) & Tuesday 29th December 2015 (Right)
Thursday 17th October 2013 & (Left) & Tuesday 19th January 2016 (Right)
Shoulder: Sunday 28th July 2013 (Left) & Sunday 8th November 2015 (Right)
Knees: Thursday 3rd April 2014 (Left) & Sunday 8th November 2015 (Right)
Saturday 24th January 2015 (Left) & Sunday 31st January 2016 (Right)
Saturday 27th July 2013 (Left) & Monday 8th February 2016 (Right)
Sunday 15th February 2015 (Left) & Tuesday 16th February 2016 (Right)
Tuesday 23rd July 2013 (Left) & Tuesday 23rd February 2016 (Right)
Sunday 28th July 2013 (Left) & Tuesday 1st March 2016 (Right)
SHARE:
Blog Design by pipdig | © TSW Cara