TSW. Trichotillomania. Books. Life.

Tuesday, 28 March 2017

Preventing the Preventable


I am going to keep this short so the facts don't get lost within my usual plethora of words.

I have wanted to do a whole post about this for a while now after only briefly mentioning it in one of my 5 QUESTIONS WITH interviews (here).

In a few months time, Briana Banos, a fellow TSA sufferer that I interviewed via the link above, is hoping to start filming the FIRST EVER documentary about our condition. Preventable: Protecting Our Largest Organ, wants to shed light on the overprescription of topical steroids with the hope of spreading awareness and educating others on their effects. Some of the goals of the documentary are to:

  • Unveil the suffering of victims.
  • Expose the lack of education on the subject of steroids.
  • Open a dialogue with doctors and researchers about Topical Steroid Addiction.
  • Create an avenue towards prevention.
  • Give hope to those who are enduring Topical Steroid Addiction.
  • Show genuine facts and studies that have been conducted on steroids.

I am one of many people who will be featured in the documentary and so far, Briana has raised only part of what is required to make this documentary happen and she needs our help!

There are many ways in which you can raise money for this project, whether it is through fundraising, donations or even just word of mouth - regardless, it all adds up.

Click (here) to donate (which is tax deductible) or alternatively, you can now donate via Paypal: preventable.doc@gmail.com (not tax deductible).

To find out more about the documentary and for other ways of getting involved, visit https://preventabledoc.com.

You can also follow Preventable: Protecting Our Largest Organ online here:
Instagram - https://www.instagram.com/preventable_doc
Facebook - https://www.facebook.com/preventabledoc
Twitter - https://twitter.com/Preventable_Doc

If you don't have time to fundraise or have any extra money to spare, let's do everything we can to spread awareness for our condition in the hope that one day our collective voices will be heard.

Cara xxxx
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Friday, 24 March 2017

Changing faces


I have just uploaded a video which I thought I would share with you on here today. The idea for it came to me a while ago after flicking through some photos of my face during withdrawal and being curious what would happen if I put them together in a little video with a quick turnaround.

There are some brilliant videos like this already on YouTube (although none of them to my knowledge are of anyone going through TSW and are more 'a photo a day' projects) which are much better because the photos have been planned and taken in the exact same position - unlike mine that are all over the place - but I think they still show the MASSIVE journey I have been on to get to the place I am today.

What I find crazy, especially in the photos of my face around the first six months of withdrawal, is that you can actually see my hairline gradually receding and eyes getting less puffy over time.


Time heals.

Big hugs
Cara xxxx
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Thursday, 16 March 2017

My four week meditation challenge


The clue is in the title what this blog post is about. It's something I had wanted to do for a while but I find meditation is one of those activities that is easily pushed out of your day in favour of things that on the surface appear to be more important. In my opinion though, meditation couldn't be more important. Most of us try to eat better and exercise when we can to live a longer and healthier life, but why do we overlook our mind as something that needs to be loved and cared for too? Our minds are precious. They shape who we are, how we feel and with the increase of stress in our daily lives, surely we should be making our mental health a priority too?

Pre-TSW, I thought meditation was just 'New Age' nonsense and I wasn't interested in the slightest - and besides, I was 'fine', I didn't need it. Post-TSW and the way I think about everything has changed. Before I talk about my mental health in a little more detail, I'd like to say that I am not a mental health professional and I'm not offering advice - this is just my experience with meditation. It's very tricky to talk about my mental health as I am essentially a happy person and have always appreciated how lucky I am just to be alive but I will say there have been a fair few tough times in my twenty-nine years, that I won't be going into here, that have definitely had a pretty major impact on how I view myself and other things.

When I recovered from TSW in August 2015, I came out of that whole experience a totally different person. Suddenly, I was more open-minded and questioned everything I had ever thought previously and as I was absolutely desperate to keep my skin healthy and my anxiety at bay, I tried lots of different things like diet and exercise but also extended an olive branch to meditation. I had been reading a lot of articles that said it lowered cortisol levels in the body and with everything I had been through with my skin, it seemed like a no-brainer to at least give it a go. I found a great 15 minute mindfulness meditation on YouTube (here) and very quickly discovered that when I did it, I was much less anxious and generally more relaxed and it wasn't long before I was a fan. When I moved to London a few months later, I had a job that was mad to say the least and found it almost impossible to clear my mind enough to do meditation and really focus on the words. It didn't help that I soon realised my skin wouldn't flare if I didn't do it and as a result, I lost my primary reason for meditating and gradually, over time, it went out of the window.

As my job took its toll, I found myself becoming increasingly stressed out and anxious. More time passed, still not doing any kind of meditation, opting instead to pack in as much as I could and leaving me so tired at the end of the day that I'd fall asleep before I could even think about doing it. I survived like this for months but towards the end of 2016, my mental health really came to a head as I pushed myself to work harder and forgot to look after myself whatsoever. It's best I list all the mental health issues I faced in the months leading up to my meditation challenge:

  • I was getting anxious very easily over absolutely everything - but primarily my skin.
  • I started getting really scared about the future - worrying and imagining all these things that could happen (but in reality, were absurd).
  • I was getting irritated very easily, and also frustrated and completely irrational over small things.
  • I was having nightmares almost every night.
  • I was thinking negatively and for someone who is pretty positive most of the time, I found that hard to deal with.
  • I developed social anxiety. I am/was a pretty social person but around this time, if I was in a large group or talking to someone one-on-one, there were moments where I'd start to get panicky and rather be on my own and times where I didn't feel like talking at all. I think this partially stems from the fact that my life is very isolated and cut off at the moment because of where I live and opting to work in lieu of going out and socialising.
  • I started getting quite OCD - making up all these pointless routines that HAD to be done.
  • I was getting increasingly paranoid about everything. What I found strange though was that it would mostly strike when I was feeling happy or excited, as if I wanted to unintentionally ruin my own happiness.
  • I think I need to add that after I left my job late last year and had a few months away from things to really think, I found I finally had real time to come to terms with what I had been through with my skin and TSW. I couldn't do that before because straight after I recovered in August 2015, I suddenly had this mad life, leaving no time to take it all in and try and find some closure. I think I'm getting there now but it's an ongoing journey to heal completely. Pardon the pun but TSW is definitely not just skin-deep.

Because of all this, I knew I wanted to start meditating again but it wasn't until Wednesday 2nd February 2017 when my anxiety/paranoia reached unparalleled heights that I knew I needed to act fast. The anxiety/paranoia was absolutely nothing to do with my skin this time - more an irrational thought that rapidly got out of hand in my head. As is my way though, for about a week, I kept putting it off as I was just too 'busy' and kept running out of time until Wednesday 8th February 2017 when I realised I just had to make time. So without further ado, here is how I got on:


DAY ONE *Wednesday 8th February 2017
I used the mediation I've already mentioned (here) and for half of it, I was really in the zone and loving it but the rest of the time was spent thinking about what I'd eat the following day (welcome to my brain). When I had finished though, I almost felt like I had been given a massage - and that was after only paying attention to half of it! I felt glowing. Something unexpected happened afterwards too: as I've already mentioned, one of the problems I had been experiencing was some OCD where I'd make up these ridiculous routines that I had to do. One of these apparently necessary routines was that every night, before I turned my phone onto airplane mode, I had an order of things I must do to make sure I didn't 'like' someone or something on some random Facebook or Instagram account (how I could have done this, I don't know). I have no idea why (and when) I started doing it, and literally came out of nowhere a few months ago, BUT this evening after meditating and I started my little OCD routine, I actually said in my head 'bugger it' and turned my phone onto airplane mode - SANS DOING MY OCD/ANXIETY/PARANOIA ROUTINE.

DAY TWO *Thursday 9th February 2017
On my YouTube homepage, as I'd listened to my go-to meditation the day before, they suggested I try another video by the same speaker, Vicki Panagotacos (here). I went into it open minded and came out of it in another world. It was incredible. There is something about Vicki's voice and her choice of words that is so comforting. I loved this meditation and I can't recommend it enough. For the rest of the evening, I felt so relaxed and slept soundly, nightmare free.

DAY THREE *Friday 10th February 2017
I used the same meditation as yesterday (here) and again it was just wonderful. For a meditation that's over seventeen minutes in length, it sure does go quickly. There were times where I had the most amazing feeling of freedom and lightness in my limbs, as if all my anxiety was losing its grip on my body.

DAY FOUR *Saturday 11th February 2017
I used the same meditation as the previous two days because I couldn't help myself but tonight I went into it already wanting it to be over as I had a lot to do. As a result, I found it hard to really switch off but halfway in, something changed and I felt my body relax and my head fall forwards - it truly is the loveliest feeling to let yourself go and just be sometimes.

DAY FIVE *Sunday 12th February 2017
*Same mediation as yesterday ... and the day before that ... and the day before that ...* Even though the meditation itself was great, I just wasn't in the zone and this time I'm blaming a desire to get back to watching the TV series House of Cards.

DAY SIX *Monday 13th February 2017
*Same meditation...* After a long day out, I was blooming exhausted and really didn't feel like meditating but I pushed myself to do it and was so glad I did. Even though I was a little too tired to really take it in, it was so relaxing and at times I felt like I was floating.

DAY SEVEN *Tuesday 14th February 2017
I decided to try a new meditation (here) and it was a bit of a fail. In true Zen spirit though, I will start with what I did like about it: the words the woman were saying were exactly what I needed and wanted to hear ... but that's about it. I really didn't like the music that I would describe if I was being kind as threatening and the tone of the woman's voice was borderline hostile. It made me realise just how important the music and speaker's voice is for a meditation. I'm glad I tried it though as it really forced me to concentrate on the words, but I wouldn't use it again.

DAY EIGHT *Wednesday 15th February 2017
I had a hormonally-charged bad day but instead of really wallowing in how I felt, I was able to acknowledge it as just a bad day and keep going. I didn't give up and in the end, it turned out to be pretty good. With regards to how the meditation itself went, I used my good ol' reliable one (here) but this time, found it so hard to concentrate. Because I know it so well now, I was able to anticipate exactly what was coming next and it meant that I didn't listen as hard to the words. I think I need to keep on my toes so I can really take in what the speaker has to say. I'm going to keep mixing it up from now on to see if it helps my concentration levels.

DAY NINE *Thursday 16th February 2017
For the last few days I have found myself naturally taking things at a less punishing pace. I'm still working hard but not pushing myself as much and oddly, I'm still getting the same amount of work done - I just have a different attitude to how I'm approaching it. Onto the meditation itself, I tried one called 'Living Carefree - A Meditation with Deepak Chopra' (here). The reason I went for this one is because I had heard a lot about Deepak and was curious. I loved this meditation. The first half or so was Deepak talking and the words he spoke were beautiful - very soothing with soft river and nature sounds in the background. His voice stops roughly halfway through and all you are left with is the background noise which almost makes you feel as if you are really there, within nature. I felt completely relaxed afterwards and I highly recommend it.

DAY TEN *Friday 17th February 2017
Ok, this is very random but as I was hoovering in the afternoon, suddenly this wonderful feeling that everything was going to be ok came over me ... it didn't last but I hadn't really felt that way for a while and was able to appreciate it while it lasted. The meditation in the evening was surprising too. It took me about a minute to take it seriously as the voice that came on was exactly that what I imagine Owen Wilson's father to sound like but soon, the meditation, which was only his voice, got me. So much so that at one point he said something like 'release all the tension from your shoulders' and my shoulders felt like they had bloody collapsed and by the end of it I had such little tension in my body, my back was completely curved forwards in a C shape. A subtle but rather wonderful meditation that can be found (here).

DAY ELEVEN *Saturday 18th February 2017
I'm finding as time passes that I am managing negativity and anxiety much better and taking it for what it really is, which is something that isn't real and not worth worrying about. The meditation in the evening was meh. I used one (here) that I wouldn't recommend. This guy with an inoffensive voice chats for a few minutes, and that was alright, but then he goes away and all you are left with for the rest of it is this underwhelming, repetitive music. It was so boring and after a while I found my mind wondering. There was also the added distraction that under the recording of the music, I could hear what sounded like an old school internet dial-up in the background. All in all a fail but I still came out of it feeling relatively relaxed.

DAY TWELVE *Sunday 19th February 2017
I was so tired tonight that I thought it would be pointless doing meditation as I would have just fallen asleep. Interestingly though, I saw my friend today and felt zero social anxiety - I really felt like my old self and was so relaxed and calm. An improvement over the last few months.

DAY THIRTEEN *Monday 20th February 2017
I used this meditation (here) and it wasn't too great. It didn't help that a YouTube advert went off a few minutes into it. Still managed to relax and get something from it though.

DAY FOURTEEN *Tuesday 21st February 2017
Even though I'm meant to be switching it up, I used a meditation I've done many times this month (here) because it was exactly what I felt like doing ... and so I did it ... and it was fabulous.

DAY FIFTEEN *Wednesday 22nd February 2017
I know it's terrible but I didn't meditate today for the simple reason that I had sugar after thirty-nine days and felt like I was flying so the idea of meditating was a bit of a joke as I was already in another place.

DAY SIXTEEN *Thursday 23rd February 2017
I used this rather underwhelming meditation (here) but regardless, I was still very relaxed and was able to lose myself in it. I am finding it so much easier to switch off now - granted, there are still moments where my mind wonders but I'm so much better than I was and am really feeling the benefits of it. I'm generally so much calmer about everything too and any negative thoughts are accepted then forced out of my mind. I am really feeling positive again.

DAY SEVENTEEN *Friday 24th February 2017
I can't explain it but today I felt as if a massive weight had been lifted off my shoulders. Anxious thoughts still lingered in my periphery but I didn't let them in. Another quite big thing, my skin has been looking fantastic recently and I'm wondering if it's partially to do with the meditation? It was probably a bad idea to concurrently do a no sugar challenge around the same time as a meditation challenge so we'll never know the root cause. Maybe a mixture of the two? Tonight I used this meditation (here) which was fantastic. It's called 'Morning Guided Meditation for a Positive & Productive Day' and even though I did it in the evening, I still got a lot from it but it would definitely (as it very clearly states) be better in the morning and would give you such a fantastic and positive start to the day. It was very inspiring too and the music was lovely, which started off very Braveheart-esque then turned into something you'd hear in a film like Mulan. FABULOUS.

DAY EIGHTEEN *Saturday 25th February 2017
I didn't meditate as in the afternoon, I felt really under the weather and by the evening, my head was killing me - that does not make the best foundation to be mindful.

DAY NINETEEN *Sunday 26th February 2017
I did something unprecedented today: I took the whole day off in which I didn't worry about what needed to be done or think about book marketing or anything on the back of my mind. I just chilled out - I had a Gilmore Girls marathon and I LOVED it. I am taking away guilt and slowly my perspective is changing about priorities as I need to remember this is my one and only life. In the evening I used this meditation (here) which was fine but there are better ones around.

DAY TWENTY *Monday 27th February 2017
I am finding that I react to things differently. I am calmer, more rational - things aren't affecting me as much. Something happened the night before that came as a rather big shock in my personal life - it wasn't something sad per se, although it did shock me, but my reaction to it was more reasoned, I accepted what it was and dealt with it calmly in my head. I used another meditation from the same YouTube channel as last night (here) and this one was a little gem. Beautiful words amidst a backdrop of calming waves. Very simple but perfect nonetheless. Going to do it again tomorrow and I'm already excited.

DAY TWENTY-ONE *Tuesday 28th February 2017
I used the same meditation as last night like I said I would (here) and loved it even more than I did the first time around.

DAY TWENTY-TWO *Wednesday 1st March 2017
I used a rather meh meditation (here).

DAY TWENTY-THREE *Thursday 2nd March 2017
Another meh meditation (here) which I had high hopes for as it was by the same people that did the meditation I absolutely LOVED a few night's ago. It wasn't a complete waste though and I still came out of it feeling relaxed.

DAY TWENTY-FOUR *Friday 3rd March 2017
I quite simply ran out of time to meditate today.

DAY TWENTY-FIVE *Saturday 4th March 2017
I am finding that I am happier generally and feel much more laid back. I'm appreciating everything. I used this meditation (here) which was good - it did everything I needed it to and the ten minutes went SO fast!

DAY TWENTY-SIX *Sunday 5th March 2017
I used another Deepak Chopra meditation (here) and I wasn't as keen on it, much preferring the other one of his I tried but still rather lovely.

DAY TWENTY-SEVEN *Monday 6th March 2017
I used a meditation for anxiety tonight (here) and it would have been good if the music didn't overpower the woman's voice. I also had the feeling she needed to swallow or clear her throat or something. Still nice though and lovely words. Things really do feel better.

DAY TWENTY-EIGHT *Tuesday 7th March 2017
It might have had something to do with the sun shining and the sky being so blue but today, everything was wonderful and I haven't thought like that in ages. I just felt so light after a few months feeling as if the world was on my shoulders. Problems don't seem so big and my anxiety is muted. I used a meditation in the evening (here) which was great - the speaker's voice was calm and waves were crashing. FABULOUS.

THE WEEK AFTER FINISHING
As is my way, straight after I had finished my four week challenge, I let meditation slide, once more prioritising things that I thought were more important ... and what happened? Slowly I started feeling anxious again and not only that, but other symptoms started to rear their ugly head. I began meditating every day again and very quickly felt MUCH better.


CONCLUSION
This probably sounds a tad dramatic but meditating has had a profound effect on me. There is something almost magical about the act, the simplicity of it, that has the ability and power over a period of time to dramatically change the way you think and react to things, whether they be big or small. Now, I find I am able to compartmentalise negative thoughts and fears for what they are and accept that they are not real problems and issues. I am more relaxed, I haven't felt paranoid and have only had a couple of nightmares over the entire challenge. I feel so positive again and have experienced much less anxiety than I have in LONG time. Life is good.

I think I'd call that a successful experiment, wouldn't you? If you have been thinking about giving meditation a go - DO IT! Give it time, invest in your mental health, just as much as your physical health, and see what changes you can make. Even now, I find it hard to make meditation a priority but after looking back over this challenge, it makes me excited to see what would happen if I kept it up for a few months...

Cara xxxx
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Monday, 6 March 2017

My Topical Steroid Withdrawal update – Month 45 (Last one!)


It's time for my last monthly update post. I will definitely be doing other updates in the future but in a more relaxed way and certainly not every month - more like every quarter or something. I think it's definitely the right thing to do and I am really looking forward to not thinking as much about my skin. I've had to do that in one way or another my whole life - first with my eczema, then with TSW but now as there is nothing really to talk about, I want to celebrate that and take a step back. So for the last time, here is what has happened with my skin over the last month:

  • I have felt as if the the rash on my forehead over the last month has wanted to come up, and for the first part of the month I could see almost an undercurrent of it lurking there, but it's almost as if something is stopping it from really appearing and I think it's hands down due to my diet which is excellent at the moment - no refined sugar and generally very healthy (my definition of 'healthy' includes still being able to eat gluten & dairy, which you might disagree with me on). On the odd day where the area felt a little irritated, nothing showed, but sometimes, a few days later, there might be a small patch of dry skin. 
  • My lips have not been dry at all this month (bar one time which I will discuss a little later with you in this post) - again, I think it's down to not having sugar.
  • On Sunday 12th February 2017 I noticed identical patches of dry, slightly sore-looking skin on my shins. Very strange as they were in the exact same position and size so I'm wondering if I leaned somewhere and that caused a reaction - I can't think how or what though. I've included a picture of the rash below so you can see for yourself. Around the same time, I also noticed a small rash just above my left knee (that went quickly). Generally, my legs were dry and slightly scaly for a few days before I noticed the rashes. Another issue I've been dealing with is some keratosis pilaris on the back of my thighs which no amount of dry body brushing is changing. I have a feeling the shaving cream I've been using isn't good for my skin and soon I'm going to try coconut oil as an alternative and maybe look into something for the keratosis pilaris and scaly skin as shaving etc is probably drying them out.
  • On Monday 13th February 2017 I spent the day outside - it was very cold and at one point I walked up to the top of The Monument which is 62 metres tall and completely open to the elements. I spent maybe twenty minutes to half an hour up there with extremely STRONG wind hitting my face which is definitely not a normal occurrence. When I woke up the following morning, my skin felt so tight and a little bit sore, plus my eyes were slightly puffy. I stayed wrapped under my quilt, scared to look in the mirror as I was worried I’d see the swollen, weeping face I had at the beginning of my withdrawal. Obviously, when I finally plucked up the courage to look there was NOTHING there – just my mind taking slightly chapped skin and messing with me. For a few days afterwards though, the skin on my face felt so tight and sore. Amazing that nothing showed and my mum even said how good my skin looked. STRANGE. 
  • On and off for about a week leading up to Friday 17th February 2017, there was a small oval area on my right nipple that was slightly more pink than the skin around it and the area was also very itchy (not enough to scratch though). I found it very odd as I haven't had a single issue with my boobs for a VERY long time. I think something must have irritated it. After a while (I didn't keep track of the date), the patch dried up before vanishing.
  • On Wednesday 22nd February 2017, as part of my no sugar challenge, I had some sugar as a test to see what would happen to my skin. After I'd had it, some of the symptoms I experienced were dry lips, an itchy scalp and a couple of hives on my neck. The following day I had an itchy hive on my stomach. The symptoms didn't last but I found the reaction fascinating. On Tuesday 28th February 2017, as part of another experiment for the no sugar challenge where I had some organic chocolate, I got a few small rashes on my face, but they went VERY quickly (when I say quickly, I mean two hours...). I will be blogging about my no sugar challenge in more detail soon and will elaborate more then. 
  • I just wanted to add that I've found this winter generally much harder on my skin than last year. I haven't flared at all and have discussed every single issue I've experienced on this blog but I don't know, there is something about my living situation at the moment, opposed to when I was living London, that's taken it's toll. Now, I have a much more sedentary lifestyle which involves me sitting in front of my laptop all day. Last year my job was very physical and I didn't get much down time. There is also the added issue that at my mum's house, there are electric fan heaters opposed to radiators. I'm trying to pinpoint the exact reason why and of course I'll let you know if I ever find out.
  • Like I said earlier, for the last few months I've noticed that no matter what I do, the keratosis pilaris I get on the tops of my thighs is not budging (not sure if I've ever mentioned before that I get it there sometimes). I have been trying a few things to see if anything works, and it's definitely too early at the moment to say whether it’s helping, but when I've given it enough time, I will write a separate post about all the changes in my routine etc.

Again, because I am not doing these posts anymore, it doesn't mean I'm going to disappear - quite the opposite in fact as I have so many posts lined up! You would think I'd have run out of things to say by now ... apparently not.

Love & hugs, 
Cara xxxx

I thought I would include this next picture as it was a TSW highlight for me. On Tuesday 21st February 2017, I decided to mix up my traditional before and after photos for #TransformationTuesday on Instagram (here) with something a little different and so I created the hashtag #WhatTSWtaughtMe in the hope it could be a place where anyone who wanted to could share their positives of going through TSW. The response was absolutely amazing and others in our fabulous, ever-growing family shared their own positives which were beautifully written and so inspiring. I am blown away daily by the kindness and courage within our community and I would love to see anyone else's #WhatTSWtaughtMe.


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