New video: My Topical Steroid Withdrawal Journey (Part 2)

Wishing you all a warm welcome to my blog that has had a bit of a makeover! It's been in the works for a while now and finally it's all coming together rather nicely. I couldn't be happier with the new look and it's all thanks to the fabulous www.pipdig.co for the template. There are been some teething troubles with photo sizing etc but fingers crossed, it's nearly sorted and I hope you like the changes.

I had a wonderful Christmas but apart from the day itself, I've been working flat out on this blog and other things in an effort to get a head start on 2017! I was meant to be away visiting family for a few days but thanks to a poorly-timed Southeastern Trains strike, I wasn't able to go so decided instead to work on a video that I hope you'll all like. It's the second part of my TSW journey in photos taking you from month 27 all the way through to month 42 and even though the photos are obviously on this blog already, it's interesting to see them one after the other and like this, I realise just how much my hands have improved over the last sixteen months.

Enjoy the last few hours of this very strange year we are in and prepare yourself for a brand new and exciting year where absolutely anything is possible.

Love & hugs
Cara xxxx

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Tips & Advice for Trich and Derma

Since admitting on my Instagram account and blog back in November 2016 that I suffer from both Trichotillomania and Dermatillomania, I have received a lot of comments and messages from others asking me for tips that might help them, too.

I have thought a lot about this and realised there isn’t one clear-cut answer – more a collection of things I’ve applied to my life that together have really helped me. In the past, I’d seen people dishing out advice to use toys and such to play with, so you keep your hands busy, but tips like that always felt like a disaster waiting to happen. I mean, there were times where I used to fantasise about being put in a straightjacket to physically restrain myself from getting to my skin, so when you throw in the suggestion of a damn toy, it ain’t going to cut it … let’s be real though, if I had been given the wonderful opportunity to wear a straightjacket for a period of time, but also knew there was a hair I needed to get out, somehow, I would have acquired superhuman strength and ripped the jacket off to pull the offending hair out. This is to say really that it takes a lot to deter someone from picking or pulling when they are in the zone, and if you suffer from Trich and/or Derma, you’ll know exactly what I’m talking about.

Before I continue, I think you need to understand that these tips aren’t a miraculous cure and your days of Trichotillomania and Dermatillomania are numbered – they are simply a group of suggestions that have helped me reach a point where I have been pretty much scab free for a number of months now and have AN ACTUAL BEAUTY ROUTINE where I can freely shave my legs. Trust me, even saying something like that still feels pretty surreal. It is something I had wanted very badly for a number of years, and the freedom of knowing there are no wounds on my body and only a few scars is just wonderful. I shall continue to apply these tips to my life so that I can hopefully continue to stand victorious over Trich and Derma. Yes, this is something I’ll have to work at for a long time, but think of it like a diet – you do all these things to lose weight, but that doesn’t mean at the end of it you can go back to eating ALL the food. You need to find some kind of balance that you can maintain and live with for the rest of your life.

These tips are with my own journey and problem areas in mind, which is pretty much everywhere but the hair on my head, and I have split the tips up into two categories: PHYSICAL & MENTAL. There are fewer physical tips than mental ones as I truly believe the real work, like most things, is done in your mind. At the end, I have also included a list of things that on the surface might appear to be obvious, but to anyone dealing with either Trichotillomania or Dermatillomania (or both like me) are philosophies that must be truly learned and might save you a bit more time than me – over sixteen years to be exact.

To anyone reading this, I really hope these tips help, but trust me when I say that I understand how hard it can be to stop. Having Trichotillomania and/or Dermatillomania is not an indulgent, trivial thing – it can be this all-consuming monster that feels like it is drowning you.

 

PHYSICAL 

Wear cotton gloves. Normally my Trichotillomania and Dermatillomania would start more out of habit than anything and I’d do it without thinking, then by the time I realised what I’d done, it would usually be too late and I would have inevitably found something that I wanted to get out, whether it be a lump on my skin that I needed to investigate further or a thick, stubbly hair that was really annoying me. With that being said, the first port of call for me was to keep my hands covered as much as possible as my weakness is the feeling of something under my fingertips and the jarring against my skin of a spot or hair. I found cotton gloves immensely beneficial as it meant I could touch my skin but wouldn’t be able to feel anything as I had this barrier of thick material covering my Trich/Derma-hungry fingers. They are hard to keep on all the time if you are using a computer or laptop though as they tend to get in the way, but I find them helpful when I’m watching something and my hands aren’t busy.

Wear clothes that make it impossible to get to your skin. One of the worst places I have attacked my skin over the years is my legs that have taken such a bashing, I am amazed I only have a handful of faded scars left. I knew when I was serious about stopping that I needed to find a way of making it impossible for me to get to my legs as in the past I’d tend to pull the leg of my pyjamas/trousers up easily – again, more without thinking – and my eyes/fingers would get to work. When I am at home, I usually wear pyjamas, but as they all have loose bottoms (pardon me), I take some sticky tape and wrap it around the bottom of each leg so it means I can’t roll the material up easily and my laziness overrides the impulse. Tights are also the biggest faff and work just as well, making it harder for you to get to your skin and over time, you just won’t bother trying in the first place. Polo necks are great, too, if you have an issue with your breasts – basically try wearing clothes that are a lot of bother to take off.

Watch videos of others with Trichotillomania and Dermatillomania. I may not have joined any forums or online Trich/Derma communities, but I did watch a fair few videos of others that had Trichotillomania and found them immensely helpful.

Create a photo album of people with clear skin as a sort of goal. Regardless of whether it was a film, magazine, or TV show, I’d always feel such a concentrated sense of sadness and regret if I saw another woman with lovely skin, then sometimes, if I felt bad enough, it would temporarily stop me from doing any damage. Back in October, when I decided I was serious about stopping, I created a little album on my laptop filled with photos of women with fabulous skin, and when I really struggled, and just wanted to pick or pull something, I’d look at this folder and it would sometimes stop me from doing any damage to myself.

Take a deep breath and put your hands in a Chandler Bing Pac-Man claw. This sounds very odd, I know, but if you aren’t sure what I’m talking about, Google Chandler Bing Pac-Man and you’ll know what I mean – or think of it as if you are holding your fingers like you are Catwoman. I don’t know when I started doing this exactly, but I found that when I put my hands in a claw-like shape and took a deep breath, sometimes, the urge to pick or pull would completely die. Putting my hands like this sends the oddest sensation up my fingers and arms. Very strange indeed, but give it a go to see if it helps you.

Turn the light off in the bathroom. I hasten to say, do not put yourself in any danger as a dark, slippery bathtub or shower cubicle is only courting disaster, but every time I remembered, I would leave the door to the bathroom ajar, so there was enough light to see what I was doing and not run the risk of slipping to my death, but dark enough that I wasn’t able to see anything on my skin. In the past, the bathroom for me was a literal Trich/Derma playground – a place I could lock myself away under a bright light and just go to town.

A healthy diet. This is more of a tip to help scars fade, and might be more down to genetics, but I have always had fast healing skin when it came to things like scabs etc. and I am amazed by how few scars I have for the amount of damage I’ve done. I’m stunned to be honest, and I truly believe it is down to food. Even though my love for pizza and chocolate knows no bounds, I have always had a pretty healthy diet that is high in oily fish, avocados, blueberries and broccoli: skin food. In the last year especially, because of going through TSW, I have made my diet better still and now my scars and scabs heal even faster.

MENTAL 

You have to really want it. This sounds like a bit of a no-brainer, but I think sometimes there is an odd sort of comfort and familiarity where Trich and Derma are concerned – almost a reluctance to stop because of the memories of those blissful moments leading up to picking/pulling that give you purpose, a feeling of being totally in control and so very secure. You then bask in the warm, contented glow of getting something out of your skin. You feel complete … for a moment at least before you realise what you have done and at times the wounds can feel like they have come out of nowhere – you think, how did that happen?! It’s like a drug – you want that satisfaction, that buzz, and you don’t want to come down and have to see the reality of it. There are times where I have spent hours picking and pulling and been left with this absolute emptiness of feeling after I have done it. 

On 7th October 2016, something changed, and I finally really wanted to stop. I had been building up to it for a long time and just felt totally and utterly fed up, bored, frustrated – all of it – and knew that this time I HAD to do it. I didn’t want to spend my life hiding my skin and letting it rule what I could and couldn’t do. I wanted a free life, and I was ready to do anything to stop. Even now, there are moments where I still want to take the easy option and pick or pull something for the sake of it – return to the warmth, comfort and familiarity – but you have just got to push past those feelings and remember why you are doing it. If I wasn’t totally committed to stopping this time, I could have been wearing the thickest cotton gloves known to man that were sewn fast to my skin and nothing would have stopped me if it wasn’t something I wanted with all my heart. I really wanted it, and not only that, I wanted it entirely for myself.

Understanding that Trich and Derma are not your friends. Continuing on from my last point, Trich and Derma were these omnipotent forces that I turned to through the good times, the bad, and even the times in-between where nothing was happening because they were my security blanket. They feel like they are your friends, but on the contrary, Trich and Derma couldn’t care LESS about your feelings. They don’t want to help you, all they want to do is hurt you and make you feel bad about yourself.

Pause. Before you pull a hair out or pick a spot, ask yourself why you are doing it. Think about how you will feel after and what will happen to your skin when you have taken that irrevocable step forward. Visualise the wounds you will create, the red craters on your skin, the total numbness you’ll feel. It’s never worth it.

Don’t suffer in silence. Having Trichotillomania and Dermatillomania are not things to be ashamed of or there to make you feel dirty – they are simply compulsions you suffer from. I believe that Trich and Derma thrive on the secrecy we tend to keep them wrapped in – we are ashamed that we can’t control ourselves, so we keep them as close to our chest as possible, but by getting them out in the open, they are no longer things that fester and grow into something bigger and harder to manage. Trich and Derma are needy, they want you all to themselves, and so by admitting that you have either or both compulsions, you are weakening their hold over you. Neither of them likes exposure much, instead, they want to feast on the darkness. For years, my mum was the only person who really knew that I had Trich and Derma, but when I decided to try and stop, I slowly told more and more people until it was completely out in the open. It was empowering.

Taking control of YOUR skin. Always remember that it is you who is the one in control of your skin – not Trich or Derma, YOU!

Make yourself aware of it every single moment of the day. I tried to be conscious of my compulsions as much as possible in a bid to stop myself from slipping into old habits and touching my skin because if I did that, it’d normally be too late as I had already found something I needed to terminate and nothing in the world would have stopped me from getting it out. I think that was the worst part for me – the habit was so ingrained that I did it without thinking and inadvertently sabotaged my own progress.

We are all human. Finally, I think the most important thing to understand is that everyone has their own demons so NEVER feel like the odd one out. If you were to take anything from these tips it would be to remember that everyone is fighting – some of us just know how to hide it a little better. We live in an age of social media and Photoshopping where everyone looks perfect and appears to lead perfect lives – they are not real, and behind those images lie something very different indeed.

THINGS I SHOULD HAVE KNOWN … BUT DIDN’T

• Ingrown hairs always look better than the wreckage you cause trying to get them out.
• Spots disappear on their own and don’t need to be helped along by greedy fingers.
• Hairs are not the enemy. They are a part of you and are there to protect you.
• It’s OK to leave a hair alone – it doesn’t bite you if it stays where it is for too long. Nothing will happen; it will just continue to grow.
• Everyone has little quirks and there is nothing to be ashamed of.
• Trichotillomania and Dermatillomania are compulsions you don’t magically get cured of. You just have to find a way to live with them and not let them impact your life.
• Getting out just one hair is a bloody myth.
• Keeping your compulsion/s a secret is never a good idea. Like I said earlier, these kind of things feed on isolation.
• Again, you’ve got to realise that Trich and Derma are not your friends – they are not there to comfort you and tell you that everything is going to be OK, they are only there to hurt you.
• Picking or pulling something out is only a setback if you let it be one, and that isolated slip-up is nothing compared to the damage you do through guilt when you think you have blown it. Setbacks aren’t setbacks if you learn from them and not think you have failed.

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My Trichotillomania & Dermatillomania Journey

I am at a loss to know exactly where to start with something like this. I mean, I could start at the very beginning … but I don’t exactly know when that is. I am thirty-four years old and think I was roughly twelve or thirteen when it all began, but like most things, they tend to creep up on you and before you know it, they are stuck to you like glue without any knowledge of how they came to be there in the first place. One thing I can say most assuredly is that Trichotillomania and, to a lesser extent, Dermatillomania, had been there, for better or worse, for well over half of my life – at least sixteen years I would say. I will try and give you an overview of my Trichotillomania and Dermatillomania history as best I can, and even though the timeline is a bit hazy, I think it’s about right.

I’ve heard recently that most cases of Trichotillomania and/or Dermatillomania develop in puberty, like me. I remember I had just started getting hair under my arms and my mum innocently let me use her electric shaver to get rid of it. I think my problems began when I noticed there was a hair the shaver had missed and thought I might as well pull it out. That small action started a chain of events which led to the compulsions I had for a very long time. At first, it was contained to under my arms, and I would pull out as many hairs as I could, but sometimes, I would have to resort to using all manner of implements to achieve my goal, especially if there were any that were ingrown. Picking and pulling became my primary source of comfort – a way of dealing with my very unhappy school life – and when I came home, I would spend so much time hiding out in the bathroom pulling until there was nothing left, then scratching and poking away at the skin, searching for anything else I could get. I would smuggle cuticle clippers and tweezers into the bathroom and have these long, epic baths that would always leave a rim of hairs around the edge, and to get an idea of how much I’ve pulled, over the years I have turned my naturally light brown hair under my arms black.

After a few years, as I think I must have got bored with only picking and pulling under my arms, I moved onto my eyebrows to the point where I looked perpetually startled and have photos in my teens where I am the proud owner of a pair of over-plucked eyebrows. I tried to restrain myself as much as possible though so no one would ever find out about my dirty little secret. I then decided to give my legs some attention they didn’t need or want – first with a random spot just above my right knee before the problem trickled down to the front of my shins. Over the years I would say my legs have taken the biggest bashing and there have been some really dark times where my skin has been covered in deep red welts after hours sometimes picking them to pieces. I wish I could tell you that I was over-exaggerating.

In my early twenties, I began attacking any stray hairs on my body that were growing, and not long after that, I had a job that I not only hated, but bored me half to death, and there was a short period of time where I pulled out my eyelashes. It started off ‘innocently’ enough with me trying to get the clumps out of my mascara. That would have been OK, but I was also pulling the odd eyelash out, too, here and there, until my eyelashes started looking a little thin on the ground. For the first time though, I was able to see things for how they really were and knew that if I continued to do it, it would turn into a MUCH bigger problem, so I gritted my teeth and forced myself to stop before it was too late and luckily I was able to kill the fledgling compulsion relatively quickly. There have been other smaller problem areas, although to be honest, I’ve always been drawn to any random spot or errant irregular hair on my skin – especially my face. With that being said, what I find odd is that after all this time, I have never once felt the urge to pull out the hair on my head.

When I was suffering from Trichotillomania and Dermatillomania, I had OK times and very, very bad times, but even in the better periods, I would never have been able to go more than a day without picking or pulling something out of my skin, and in the bad times it completely took over my life and stopped me from doing so much. 

On Friday 7th October 2016 at 2.24 pm, after years spent making desperate but broken promises to stop, I’d finally had enough, I was done with it, and I wasn’t giving up until both compulsions were out of my life. Well, that notion might have been a tad idealistic, but after nearly seven weeks, a few slip-ups, and some unexpected life lessons, I finally managed to get to the best place I’ve ever been with them. During that time, I wrote a diary which I shared on my blog before self-publishing it in mid-2017 under the name My Date with a Razor. The following year it was republished with Trigger under the name Every Trich in the Book. In 2022, I was able to get my rights back and ended up self-publishing the book again under the name, My Date with a Shaver, which is available to buy as an ebook and paperback now (for more information, click *here*). My Date with a Shaver is a very raw and honest account as I believe it is important to share compulsions like Trichotillomania and Dermatillomania openly so those who also suffer don't feel so alone.

Like everything to do with Topical Steroid Withdrawal on this blog, I’ve tried to make my Trichotillomania and Dermatillomania journey as detailed as possible, and so I have included some tips that have helped me, plus a few other things which I hope you find useful.

Sending all my love,
Cara xxx

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My Skin Story

I suppose my skin story started when I was six months old when my mum noticed a tiny rash on my right wrist. Like any other parent would do, she took me to the doctor where I was very swiftly given the diagnosis that I had eczema, a condition as illusive and confusing as the treatment of it. I was prescribed hydrocortisone, a mild topical steroid cream, and soon that little patch blossomed and grew into something larger. Thanks to a mother who was naturally very cautious when it came to using any drugs, she applied them very sparingly and even though I did have eczema back then, it was never serious enough to impact my life – but I do believe that initial use of topical steroids when I was a baby turned the condition from a tiny patch into something much bigger. From about the age of seven my eczema wasn’t a problem, until I went to secondary school. I am not going to go into that period of my life, but I will say that it was a very bad time for me; it shaped me, changed me from a happy child into a teenager who didn’t like herself very much, and those changes showed in my skin with eczema rearing its ugly head. Now, when I look back, I would tell my young, teenage self that my eczema was probably caused by stress, but at the time, all I seemed to be told was that eczema was incurable and I had to find a way of ‘managing’ my condition which meant using emollients, moisturisers, steroids, immunosuppressants, bath preparations and lotions instead of looking for a reason why my eczema was coming up in the first place. 


Apart from a nurse I spoke to in my teenage years called Jeanine who will forever be the best person I have talked to about my skin, I’ve been treated to a plethora of simply delightful doctors and dermatologists. Notable mentions go to the antiquated doctor (for some reason I remember he had a rather spectacular dent in his head) who looked directly at me, pointed his (in)experienced finger in my direction and told me, as if he was offering me words of profound wisdom, ‘don’t scratch’; or the doctors who would get their massive encyclopaedia of drugs and ailments out of a drawer to look for an appropriate cream, as if one size fits all. And last but not least, lest we forget, those who would be almost insistent upon me using steroids, immunosuppressants and the like before again reminding me that there is no cure for eczema. 


I was fed this way of thinking for a very long time, and I believed it because you are conditioned to trust everything doctors tell you. I feel I need to say again that I am not blaming doctors and have immense respect for their profession, but in my lifetime, I have been treated by enough of them to feel justified to question the way in which eczema is treated by the medical community as a whole. You could tell me I’m wrong, but this is based on my experience and what I as an individual believe after having to go through the system for well over twenty years. 


As a teenager my eczema was bad and at the time the only real treatments available to me were steroids, thick emollients, and all manner of fun stuff like that. It was around this time that I was referred to the hospital and started seeing dermatologists. I had skin tests which told me I was allergic to things that didn’t make sense, and I remember a period where my skin was constantly infected and I had to keep taking antibiotics. I was seen by dermatologists at the hospital who would offer the same old treatments, but it wasn’t until I was seen by a new dermatologist that things really went downhill. He was insistent I use steroids and would get angry if my skin hadn’t improved. He was a big fan of Protopic, which at the time was being branded as a miracle cure, and his behaviour was so bad that it got to the point where my mum had to say to him that I was being bullied at school and didn’t need to be bullied by a doctor as well. He did apologise for that, but things didn’t change. 

What happened next, I suspect, was the beginning of my addiction to steroids and the birth of Topical Steroid Addiction: I was prescribed (and ended up taking) a course of oral steroids which I am pretty certain was Prednisone. I was about fourteen at the time and as my poor immune system must have been pretty weak from all the drugs and antibiotics I had used, I really didn’t stand a chance. Of course, we’ll never know now what caused the condition to manifest and why – and I’m not here to name the doctors and dermatologists I’ve seen over the years as I think that is not going to help anyone. 


Even as a teenager I knew steroids were bad and that if I continued to use the stronger creams I was prescribed I would only be asking for trouble, but at this point my skin was too bad not to use them so I tried to make the best of my situation and over time, gradually weaned myself down from Betnovate to Eumovate. After a while, I realised that for some reason, if I only put a bit of steroid cream on my hands and on a patch under my chin, it would control my whole body – I never touched the stuff as I hated the tingling sensation on my fingertips, so I would squeeze a pea-sized amount onto the back of my hand and use the back of both hands to rub it in. I would then swipe one of my steroid-covered hands over a small area under my chin. Even though I used Eumovate twice a day for years, it still felt like a better alternative to using something stronger. A few years before I began withdrawal, I was able to wean myself down to hydrocortisone 1%, applying it to the same areas. I thought maybe if I did it gradually, I might stand a chance of not having such a bad reaction when I stopped using them completely … how wrong I was. This is why I don’t believe in tapering. 


I tried many times over the years to stop using steroids, each time hoping that perhaps my eczema would get better, but straight away, I’d get this awful reaction that I always assumed was my eczema coming back with a vengeance. I’d then book an appointment to see a doctor, but all they’d tell me was to use a stronger topical steroid or Protopic then throw in a new emollient for me to try. Even though I hated Protopic every time I used it, I was desperate to come off topical steroids, but it didn’t take long for me to go back to them as I detested the side effects of Protopic, which for me included a painful burning each time I got in the shower or bath, a worrying increase in the amount of freckles I had even though I kept well out of the sun (I had to go to the hospital to get photos taken as there were so many), my face would flush red and the smell made me feel nauseous. Now, Protopic has been given a ‘Black Box’ warning because of its possible links to cancer. 


Every time I went back to topical steroids, it was like reigniting a wonderfully familiar but toxic relationship – I knew it wasn’t good for me, but my skin craved it. I had almost resigned myself to the fact that this was my life now and that steroid creams and immunosuppressants were always going to be a part of it. Over the years, along with other symptoms, I noticed my skin thinning badly, but I felt trapped – without these creams, my ‘eczema’ was only getting worse. 


It wasn’t until the summer of 2012 (a year before I started Topical Steroid Withdrawal) that things really started to change. Back when I had normal eczema and my skin wasn’t addicted to steroids, my skin LOVED the sun, but now when it got hot, I would break out in hives and very strange rashes. As the UK never stays very hot for more than a few days at a time, my skin would calm down quickly, but when I went to Greece in July 2012, I found after a couple of days in the sun that my skin (especially on my legs and thighs) was coming up badly and I ended up spending the rest of the holiday covered up in the shade. I remember a few days before heading back to the UK when my supply of steroid cream was running dangerously low, frantically searching for it in Greek pharmacies, and when I was able to find some (I think it was Eumovate), I got back to my room and for the first time in years, literally slathered my entire body in it, desperate for the hives and rashes to die down. The cream did nothing though and it was only when I got back to the UK that my skin calmed down again. 


For a few months, I was able to return to my normal routine of using hydrocortisone twice a day on the backs of my hands and under my chin, but over time, I found it increasingly hard to ignore just how thin my skin was. I wish I had taken photos as, especially on my face and the creases of my arms, you could see blue veins through my skin – it was really quite scary. I wore thick foundation which covered them, but it didn’t stop the fear. But what could I do? I had severe eczema, which I was told was incurable, so had to find a way of ‘managing’ my condition. 

In April 2013, I remember I was meant to sing at a friend’s wedding which I was looking forward to, but had to cancel as an audition came up that could have been great for my career (at the time, I was making a rather half-hearted attempt at becoming a singer/actress) which I then had to cancel as the skin around my eyes suddenly swelled up really badly. Whilst all this was happening, I noticed a few rashes coming up on my arms and legs and I put hydrocortisone on the patches of ‘eczema’, but it had absolutely no effect. I went back to the doctors hoping they might have an answer, but all they suggested was to use the topical steroid Betnovate. My mum was also getting increasingly concerned about how thin my skin was. I think it was all coming to a bit of a head really and I remember feeling completely and utterly confused. At this point, I felt like I had two options: 


1. Use stronger and stronger steroids until one day they would inevitably stop working or … 

2. … I had no idea what my second option was, but knew I had to do something. 

It wasn’t until many weeks later on the evening of Thursday 6th June 2013 that I found an answer that would change my life forever. Earlier in the day, I remember my mum having a serious chat with me about how thin my skin was, but all I could say to her at the time was that I didn’t know what to do as steroids were the only thing keeping my skin under control. Unable to shake off my mum’s concerns though, I knew the time had finally come to sort out my skin once and for all so on a whim, that night, I typed into Google something along the lines of ‘addicted to topical steroids’ and instantly, I was given the answer I had waited over ten years to find – I didn’t have eczema any more, but something called Topical Steroid Addiction. It was a total lightbulb moment, and I knew instantly that I would never use steroids again. That same evening, I started Topical Steroid Withdrawal and haven’t looked back since. That was nearly five years ago now … and what a five years it has been.


I think what saved me in a way was going into withdrawal blindly as I had no idea what was going to happen, but if I could sum it all up in one sentence, it would be to say that TSW was the best decision I have ever made for myself and my skin. 

This blog documents exactly what I went through during TSW – the good, the bad and the very, very ugly. This is not written by a medical professional with any kind of degree, but a woman who went through something life-changing. I am sharing my story in the hope that it can help others, but whatever I say, the decision of whether TSW is right for you must be yours and yours alone.

I am wishing you the best of luck on your journey,

Cara xxx

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Merry Christmas!

This is just a little post to wish you all a very Merry Christmas. This is my second Yuletide not in the throes of TSW and that is still the best gift I could ever ask for. It's going to be a quiet one for me this year and I'm actually planning on working for a lot of it - expanding this blog and making some changes that I think you will like and also working on other things that I hope will make 2017 wonderful. I'll be taking some time away from my emails and all social media though which I'm looking forward to, along with spending some time with my mum as even though we live together now, we don't see each other much as we are constantly working! We will definitely be fitting in some walks in the frosty countryside, festive films and lots of delicious, nutritious food - I'll be eating pretty much the same as I did last year (see post here) in part, because I really want to look after myself but mostly, because I want to.

If you are suffering this Christmas, try to remember that they won't always be like this and you'll have a lifetime of mince pies when it's all over to make up for the few uncomfortable years where you put yourself first.

Mistletoe kisses
Cara xxxx

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5 QUESTIONS WITH: Stephanie Miller

Another week, another 5 QUESTIONS WITH this time featuring Stephanie Miller. Stephanie and I have been Instagram friends for months now but as her account is about her life generally and not focused on her TSW experience, I wasn't aware of what she had been through, until recently, when she emailed me her skin story and after reading it, I just knew I had to interview her.

I don't think there will ever be a time where I am not amazed by how similar all our experiences are and it again hits home just how much things need to change. I'll get down off my soapbox now and hand it over to Stephanie:

1) Tell us a little bit about yourself and your skin journey.

Well, my name is Stephanie :) I grew in the Bay Area, California, and I've been living in NYC for 5 years. I'm an actor and teaching artist and babysitter and all of those artsy things us actors do to survive ;) I love theater, yoga, independent movies, cozy coffee shops, and a good pun. 
My skin issues all started when I was about 6. I was definitely in elementary school at the time. I developed regular eczema when I started a new school, and my parents took me to the dermatologist. That's when they started to give me 'rash medicine' as my family always called it. I never went to bed without putting "medicine" on my skin. They eventually stopped working, and the doctor kept prescribing more potent ones as my body became 'immune' to the less potent ones. That's what the doctors always said was happening...*eye roll*. I remember having tubes of all types of steroids all over the house, especially the tiny tester ones. Doctors would always give me handfuls of those. I used every topical steroid under the sun until they prescribed Clobetasol when I was 14. 

During the summer before high school, my family moved to a new town, and I remember my skin getting better. Between high school and college, eczema was never an issue. I may have put dabs of steroids on my skin every now and then, but it definitely burned out as doctors said it would. However, during the summers between college, I started working at a summer camp in my old hometown. Within 3 weeks, my eczema came back. But then, when I would fly back to Massachusetts where I went to school, the eczema would go away. By my fourth summer at the summer camp, my eczema returned ferociously. I went to the dermatologist where they immediately gave me Clobetasol and Protopic. They said use the Protopic regularly, and the Clobetasol occasionally. Well, the Protopic didn't work...so I used Clobetasol...and boy did that work wonders. I am pretty positive that's when my addiction started.

After that summer, I moved to NYC. It was September 2011. My skin was still a major struggle, but I didn't let it stop me. I had my tube of Clobetasol just in case. For the record, I used it as prescribed...."twice a day (morning and night) for 2 weeks". Usually I would only need it for a week, then my skin would clear up! But, as the story goes, when that week or 2 weeks of using the cream ended, my "eczema" would come back with a vengeance within 2 to 4 weeks. I thought I was allergic to the city, but I loved it too much to leave. From 2011 to the beginning of 2015, that was my struggle. My right palm suffered the most, but I would also get small patches on my arms, my torso, and legs. I knew I shouldn't be using steroids long term, so I tried to avoid it. I would only use it when my skin became unbearable. The relief was always worth it even if it only lasted a month, 2 weeks, or less. 

2) How did you find out about TSW?

Back in January 2015, I used topical steroids for the last time, and my "eczema" came back within a week and started to spread to places I had never seen it before... and it was spreading fast---the backs of my hands, big patches on my legs and arms, my left palm. That was a huge wake up call. I decided to take control of my "eczema", and went on the autoimmune protocol diet for 6 weeks. I was promised that I would see great healing after a month, but my skin only got worse and worse. As I was doing research on ways to heal eczema naturally, I kept coming across ITSAN. When I initially learned about it, I was in denial. I was convinced that if I kept up with my diet, I would heal. Well that didn't work. I stayed on a pretty strict diet for 5 months, and my skin only got worse. When I was about 2 months in or so, I began to look at pictures of other sufferers. That was when my gut told me what was happening. I felt like I was looking in the mirror when I saw those pictures. I also watched the educational videos that ITSAN has on their site, and those videos changed my life. 

3) Did you find that anything aided your healing?
Friends. Being with the people who made me feel like myself and treated me exactly the same. I always felt more alive after hanging out with the people I loved. You begin to feel dead and inhuman during this journey, and being with others always helped (even though I tended to isolate myself). 

Comfort TV. I watched a lot of shows that made me laugh. Laughing has always been a remedy for me and telling myself that it's okay to rewatch all 10 seasons of Friends or The Office was a huge helper. I guess I should say that those shows pushed me through the rough days when getting out of bed was the best I could do. 

I also started taking supplements back in June, and I'm pretty positive that they sped up my healing from then until now. The only frustration I have about the TSW Facebook community is that there's a lot of backlash against supplement recommendations. All I can say is that I am grateful that I took the risk and am happy to offer up any information.

4) Sum up TSW in five words.
Gross, burning, wet sand, endurance, transformative (that's 6!). 

5) What positives, if any, have you found from going through TSW?
There's 100% more positives than negatives. This journey made me realize how brave and resilient I am. TSW is not for the weak hearted, and it takes a brave soul to keep enduring the physical and psychological trauma. This experience is traumatic, and we can't deny that. But once you see how the body heals itself, you can't turn back. I was also hospitalized back in May of this year with a terrible blood infection and breast infection that made me go septic. I am pretty sure it was caused by all of the horrible factors affecting my body at the time. I was in the middle of a horrible anniversary flare, and I pushed my body too far...plus I remember scratching my boobs until they were raw...not a good idea! Fortunately, I made a full recovery...but that was another life lesson that showed me how resilient my body is. When I was in the hospital, they gave me tons of fluids, antibiotics, and a round of cortisone. That was a difficult decision to make. I was already 15 months into my withdrawal, and I didn't want to erase all of my hard work. However, I knew my life was in danger, and in those situations, you have to make serious sacrifices. My skin cleared up in the hospital. Woohoo! But within a week, my body started to withdraw again, and I was in a nasty withdrawal for a good 6 months after my discharge. Nevertheless, now, I'm doing really really well, and I can only trust that my body is getting stronger and softer by the day. 

To follow her fabulous *non-TSW* Instagram account, click (here).

Thank you so much for sharing your story with me Stephanie <3

And so that is my last 5 QUESTIONS WITH of the year. I hope you have enjoyed them as much as I have loved working on them and I will be returning in 2017 with many more, so watch this space!

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)

Stay strong guys <3
Cara xxxx

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Don't be rash: some reminders from a friend who has been there in case you are struggling today

On Instagram, I follow a lot of people who are in the throes of withdrawal and over time I have noticed the same worries and fears come up that hang over our condition like a pall until we are not only fighting the truly awful physical symptoms of withdrawal, but also battling the demons inside our head that are constantly telling us we are doing the wrong thing. With that being said, I thought I would put together a few reminders for anyone who is struggling right now in the hope that it acts as a little tonic to help keep the monsters in your head at bay.

I suppose in a way I am writing this to the me of a few years ago in the midst of withdrawal – the girl who was scared at times that maybe she did just have eczema and all the doctors and dermatologists were right; the only answer was to use stronger topical steroids and immunosuppressants for life to have any semblance of normality. I know this path can feel like the wrong one but in reality, it is the best thing you will ever do for you and your skin, and I believe that overcoming the symptoms in your mind is the real challenge of TSW ... not convinced? Well just take a moment to think about what would happen if you took away all those doubts and fears ...

***

There is no such thing as backwards, only forwards, and even though it may not feel like it, every day that passes brings you one day closer to recovery.

You WILL get better and are not the anomaly who just has eczema. If you are on this journey, you are on it because you have TSA. The decision to go through something like TSW is not normally made because of some arbitrary whim you had – if you are on this journey, you are on it for a pretty concrete reason.

Remember why you started TSW – the desperation you felt followed by the relief when you realised you had found the answer you had been waiting for. In the moments where you feel like giving up and just want to go back to using topical steroids, think about what compelled you to stop using them in the first place – why did you stop?

Anxiety, doubt and fear are the worst symptoms of TSW.

Recovery is not linear. There will be ups and downs and most will not gradually get better. There might be a long period of calm followed by a flare that takes your breath away, or you might be in what feels like a perpetual flare, but whatever you do, don't be discouraged because at any given time you are always one day closer to getting better.

Elephant skin goes. Just like the oedema, weeping skin and bone-deep itching, elephant skin is a symptom of TSW and only temporary. 

Feeling guilty for scratching is like feeling guilty for breathing. Scratching is inevitable.

This process takes time, and lots of it. Time is the only true ‘healer’ of TSW.

Give yourself a pat on the back – you're doing the best you can.

Never feel guilty. Period.

Do not compare your withdrawal to another person's as it will only lead to disappointment and anxiety. How long it takes to recover differs from person to person.  

Eat the damn cake if you want to.

You are not alone.

I thought I would finish by posting this picture I put up on my Instagram account recently. The photo on the left is from Friday 9th August 2013, just over 2 months into withdrawal. The middle photo is from Wednesday 18th February 2015, over 20 months into withdrawal. The photo on the right is from Sunday 13th March 2016, 33 months into withdrawal. Having a wrist like the middle photo after twenty months of withdrawal was disheartening to say the least - I couldn't even wash my own hair because it was too painful and I was unable to walk around too much because my left ankle was so swollen it would crack open if I put too much pressure on it. It was a pretty grim period and to make matters worse, I'd see others who were recovering quicker than I was and from time to time, I'd question if I was doing the right thing - but even in the most desperate of times, the alternative of using topical steroids again was never an option, only ever a daydream when I was really suffering and just wanted a day where I wasn't uncomfortable. I knew topical steroids weren't the answer as they would only mask the real issue. Even though my blog may come across as if I'm anti topical steroids, I'm not - they are a wonder drug - but I truly believe they are never the answer to treat severe eczema and neither do I believe that masking a problem, opposed to treating the root cause, is a good idea. Something must change.

Don't suffer in silence as we are all fighting in one way or another.
Cara xxxx

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My Topical Steroid Withdrawal update – Month 42

Yet another month has passed without incident and as per, there are only a few MINOR issues I want to discuss. It's been another great month for me personally with one hurdle in particular I've managed to overcome *I talk about that in more detail (here)* ... but I shall cut the ramble before it grows roots and just get on with talking about my skin:

• From the beginning of the November it was absolutely freezing and as a result, the heating was on a lot - and sometimes even when we probably didn't need it. I also decided to indulge in a guilty pleasure of mine: standing over the electric heater ... I know, I may as well baste myself in coconut oil and pop myself in the oven. Well, a few days after the influx of artificial heat, my skin started feeling rather parched and a little ashy in places - what a shocker. I mean, you couldn't really see anything, it was more how I felt. When I realised how much it was affecting my skin, my mum and I made sure to put the heating on as little as possible and very quickly the dry/ashy skin disappeared. We still had the heating on when we really needed it though, it's just amazing that by implementing a small change you can make a world of difference.
• On Tuesday 8th November 2016, the area on my right hand that I talked about in last month's update post (here) changed texture and was a little red again. By Saturday 12th November 2016 the skin had dried up and was nearly back to normal (see photo below).
• On the evening of Tuesday 15th November 2016, I noticed there was an area on my right wrist that was rashy and there were also a few spots just below where the original rash on my right hand was, so the entire area affected made a line that ran from my right knuckle below my thumb down to a small patch on my wrist - I tried to take a photo of it but it wasn't coming out. The next day it had all vanished but I could still *feel* it there, if that makes sense, lurking under the skin. That evening (16th), my wrist got really irritated and I noticed a few small patches of red and a couple of spots with heads on that I squeezed and made the area even more irritated. Even though it was pretty itchy, I was able to resist scratching it and instead put something cold on my skin that completely killed the itch. I also decided to take an antihistamine (hadn't taken one in months) and within half an hour, the itch had gone and by the next morning, my skin was completely calm again. It was exactly like this last month with the other rash on my right hand. Also, this could have nothing to do with it but on the 16th, I'd been working on my laptop since about 6 a.m. and it was roughly 8 p.m when the rash started to get irritated. The following day I made an effort to get off my laptop as much as possible and that weekend, I took a proper break away from it and by Monday morning the skin was completely back to normal.
• On Friday 25th November 2016 I had slightly dry lips and by the evening I got into the habit of licking them. The following day I had a crack in my bottom lip that was very sore but over the next few days the skin slowly recovered until it was back to normal on Tuesday 29th November 2016.
• I also wanted to mention that on Friday 11th November 2016 I started dry body brushing and the difference in my skin since then has been amazing. I've been brushing every two days just before I get in the shower and the areas I've targeted are my legs, the tops of my arms and elbows. The dry spots on my legs that I talked about last month have VANISHED and some little spots I used to get occasionally on the tops of my arms (called Keratosis Pilaris) have not returned since I started. I am going to try it out for another month before I talk about it in any more detail, and I certainly wouldn't recommend it to anyone with broken skin, but one of the benefits of dry body brushing apparently is that it stimulates the lymphatic system ... hmm... Anyway I'm going to take it slow, continue to use only a soft bristled brush and not attack my skin with it like there's no tomorrow. I'll keep you posted on how it's going. 
• At the end of November the weather turned ICY cold and as a result, the heating was back on a little too much ... and I said hello to a small rash on my forehead on Wednesday 1st December 2016. I was totally cool with it being there at first but on Friday evening, something suddenly changed and its mere presence made my anxiety go into overdrive. I started panicking that I was going to flare and I even found myself analysing my skin obsessively for any other signs that a major flare was about to happen. Even though there was absolutely nothing wrong, my mind distorted reality and I was almost seeing changes to my skin in certain areas. Not pleasant. Anxiety is a very real and scary symptom of TSW. Never feel alone with it because you're not. I have attached a little video below (broken into two parts) that I posted on my Instagram account the morning after it happened. Ending on a high, after the rash appeared we were again very careful with how much we put the heating on, instead opting to wear approximately eight thousand layers and over the next few days, the rash slowly died down, along with my anxiety.
• I should also mention that I think the heating has been more of an issue this year as I'm living with my Mum again and she has electric heaters opposed to radiators so they basically sprew out this extremely dry, hot air into the atmosphere. I think radiators are a little gentler on the skin - well, it's my theory anyway and I could easily be wrong. Another theory I have at the moment is that if I feel like I'm coming down with a cold, my skin starts to feel slightly irritated. There was a woman who came to the house in late November with a really bad cold and she was coughing like crazy - a day later, I had a few cold symptoms so wondering if that contributed to the rash on my forehead. Ah, theories, theories, theories...

To anyone suffering, and I know I have been saying this on a loop since I got better last year, but I cannot stress enough how grateful I am to have gone through this process. TSW will test you in every imaginable way - and it doesn't help that it takes approximately one million years to recover from - but I never dreamed in my life there would be a time where my skin could ever be this good.

Love and hugs <3
Cara xxxx

Earlier, I mentioned that I had overcome a personal hurdle *that I talk about in a post (here)*. In a nutshell, I've suffered with the conditions Trichotillomania and Dermatillomania for a very long time but on Thursday 24th November 2016 I turned a corner and was able to shave my legs with a razor for the first time in years. It's hard to explain to someone who hasn't suffered with either condition the true significance of such a simple act, but to me it's something I wanted for a very long time and to finally be able to do it was extraordinary. I'm not cured, but I'm getting there and I couldn't be happier.

On Saturday 26th November 2016, I had the absolute pleasure of meeting up with a group of girls going through TSW (bar Stephanie that has suffered with severe eczema *to read her interview about her skin battle, click here*). I have so much love and respect for our community that continues to amaze and inspire me <3

I never normally post these pictures on here but I thought I'd make an exception. Most Tuesdays on Instagram I try to put up a #TransformationTuesday picture from my own withdrawal. In all honesty, I can't actually remember ever being the person on the left. I have some flashbacks and memories but it's almost like those first months of withdrawal never happened. You might be feeling like the the person in the left-hand photo right now and can't imagine ever being back to normal again but you do get there and it feels wonderful.

The video I posted on Instagram about my anxiety on Saturday 3rd December 2016 

(broken into two parts due to size).

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5 QUESTIONS WITH: Melanie Lynch

It's Monday morning so that means it's time for another 5 QUESTIONS WITH. This week's interview features Melanie, who in my opinion has had one of the most incredible transformations I've ever seen within our ever-growing (fabulous) skin community. My symptoms were bad, and I suffered greatly, but nothing compared to Melanie and I can only commend her on her extraordinary strength of will to persevere through it all. I hope it will also make you feel that truly anything is possible and that you will get through it. The first question is answered from information I was given and edited by myself.

I'm still a little stunned and to be honest, completely in awe of her so before I go too far and get all gushy again, I'll hand it over to Melanie:

1) Tell us a little bit about yourself and your skin journey.
Melanie Lynch, 37, is a primary school teacher from Birmingham who was first prescribed topical steroid creams as a toddler to treat eczema on the backs of her knees and elbows, but over the next thirty years, her eczema got worse and as a result she was prescribed more potent steroids that she eventually had to use over her entire body. At her worst, Melanie was using a 100g tube of steroid cream every week on top of oral steroids but nothing seemed to relieve her symptoms which included dry skin and a reddened face. Fed up, as nothing seemed to be working, Melaine decided to quit using all topical steroids in 2013 but straight away, she had a terrible reaction. Her face swelled, her hair fell out and her skin turned bright red and was oozing badly followed by excessive amounts of dry, flaking skin - not to mention the months of sleepless nights. 

At times her symptoms were so severe it rendered her housebound for months on end and there were even periods where she would spend all day, and sometimes nights, in the bath in an attempt to get some relief from the agony she was going through. She says 'The whole thing was a living hell and the worst thing I've ever had to do ... I had to sweep around me like it was dust, I would change my bedsheets and pyjamas multiple times a day ... About 95 percent of my skin looked like it had been burned, I couldn't put clothes or even a blanket on because it was so sore. After that it would go very dry and flake everywhere, then it would repeat that cycle over and over for three years.'

She adds, 'In the beginning, I only thought it would take a year for me to overcome this, I never imagined three years later I'd still be battling it ... Thankfully this year has been a lot better, my skin is so much better than it was, I'm finally able to start living a normal life again ... It's definitely a terrible time but worth it now. My skin is stronger, it feels healthier and it's not damaged like it was before ... My skin finally feels smooth, like it never has felt before and is definitely healing.'

2) How did you find out about TSW?
I found out about TSW when I was searching the internet for damage steroids can do after my GP told me I needed to think about coming off them. Then I found ITSAN. On their homepage was a video and that was my lightbulb moment. It described all of my symptoms and I just thought - I've got TSA!!

3) Did you find that anything aided your healing?
The only things that helped me were - salt water baths, Sudocrem, moisturiser, sleep, anti histamines, pain killers.

4) Sum up TSW in five words.
Hell!! Preventable (Briana!!!!), Painful, Horrific, Life-changer.

5) What positives, if any, have you found from going through TSW?
Appreciating the small things - after being housebound for so long, I appreciate simple things like the school run and going to the shops. I value my health more. I vaue time with my children more. I appreciate my husband and my mom for everything they have done for me through this journey. My skin has changed over the last year. Parts of me are completely healed - my legs are amazing - the best they have ever been in my whole life. My skin feels stronger and smoother than ever - I am healing!

Thank you so much Melanie, you are amazing <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)

Much love to you all,
Cara xxxx

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Skin Food: Mackerel, broccoli & brown rice goodness bowl

I thought I'd 'mix' it up a bit and throw in a little recipe for you. This isn't going to be a regular feature or anything but it's one of my favourite meals that I have at least once a week as it's simple, hearty and good for you. I started making this months ago when I was living in London and on a strict budget. It only requires five ingredients that you can get anywhere including mackerel that is PACKED, amongst other things, with high levels of omega-3 fatty acids, and broccoli, which is an excellent source of vitamin K (which is needed for blood clotting, helping wounds to heal properly) and has a MULTITUDE of other health benefits like vitamin C and is also a very good source of dietary fiber. I am pretty sure my intake of oily fish has helped me not have to use moisturiser on my skin for about a year and a half now and *confession time* I am a complete broccoli fiend. It is BY FAR my favourite vegetable and in the last few months alone, I've become borderline obsessed with it to the point that I now have it practically every day. Anyway, I hope you like it and now I'm starving.

Mackerel, broccoli & brown rice goodness bowl
Serves 2
Cooking/prep time: 30 minutes
Price per portion: £1 (or under, depending where the ingredients were bought)

Ingredients needed:
- 150g Brown rice
- 1 Broccoli head
- 2 Tins of mackerel fillets (I use the ones in olive oil but anything you prefer would work)
- 1 Medium onion, finely chopped
- 1-2 Cloves of garlic, chopped or crushed

Method:
1) Heat 2 pans with water ready for the broccoli and rice.
2) Boil the brown rice for 28 minutes (or however long your instructions say to cook it for).
3) About ten minutes before the rice is ready, gently cook the onions in the oil of your choice (I use about a tablespoon of olive oil) and also put the broccoli on to cook (so it's soft to mix in). About a minute or two before the rice is ready, add the garlic to the fried onions (the garlic will burn if you cook it for any longer).
4) When it's done, drain the rice and add it to the onions and garlic. Stir thoroughly.
5) Drain and flake your mackerel in a separate bowl then add to the rice mixture. Stir through before draining your broccoli and adding it to the pan - almost mash it in and stir thoroughly then leave it to heat through for about a minute.
6) Serve in a big, cozy bowl and eat ALL OF IT.

*Voila!*

See, I told you it was easy :)
Cara xxxx

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