6 blissful months

This is just a small post to mark that it's been exactly 6 months since I suddenly got better. Really, on Monday 17th August 2015 I looked at my skin and couldn't believe it was mine. It sounds too good to be true but that is how it was for me.

In the 6 months since I have got better, my life has changed in ways I wasn't expecting. Last November I moved to London and started working and even though at times it's been incredibly tough, it's wonderful being completely independent and I get such a thrill out of doing trivial things like washing my hair which I couldn't do for such a long time as my hands were so bad. I am living completely back to normal and in a way, more than I ever did before TSW. As you know if you follow me anywhere online, I get the odd rash/skin issue now but it's always minor and has not impacted my life in any way. This is more than I could ever have hoped for.

I set up my blog, YouTube channel and Instagram etc because there were so few people who had got better. I remember when I was really suffering, the people who got better basically vanished from the internet and it scared the hell out of me. You go into a paranoid 'It's a conspiracy ... I'm never going to get better!' kind of place that makes you question if TSA really exists. I think it's imperative I stick around from both a personal and medical point of view to see what my skin does from this point on - even more so than the time when I was suffering.

I don't know what the future holds for me in terms of my skin. I am feeling immensely positive about it all and so very excited but I think there will always be a part of me that is ready for a flare up at any moment. No matter what happens, I promise I will document it and not just vanish from the internet.

I do look at us all as one big extended family - we are going through something that has so far been, on the whole, ignored by the people that should be doing everything possible to rectify this outrageous situation. One day our voices will be heard but until then, I will continue to highlight this ridiculous, debilitating condition until someone listens. Topical steroid addiction is a real condition and I would love to know now how many people worldwide at this moment think they have 'incurable eczema' when instead they have TSA.

I couldn't feel more proud of all of us - whether you are just about to start your journey or are further into it like me.

We will all get through this and you are stronger than you think.
Cara xxx

Some (more) FAQs

As more and more people find out about TSW and the more my Instagram, blog and YouTube grows, the more questions I get asked. I have already written a frequently asked questions blog post (here) but there are other questions I have been asked about recently that are too important not to cover as well. I hope you find it informative but of course if you have any questions I haven't covered in this or my other post, do not hesitate to contact me.

How long did you use topical steroids for?
I used topical steroids cumulatively for WELL over ten years. This is only a rough estimate, and I am sure it is much longer than that, but it’s the only figure I can be totally sure of. I used a course of oral steroids in my teens then mostly milder steroid creams like Eumovate and hydrocortisone twice a day throughout most of my ‘addiction’. I also used Betnovate and other stronger steroid creams but that was in the earlier stages of my dependency.

How long did it take for you to 'heal'?
I don't think I can ever bring myself to use the word ‘heal’ but I will say that my skin suddenly changed for the better after twenty-six/twenty-seven months of withdrawal and since then, I’ve only experienced mild rashes and two isolated flares on my hands which lasted a matter of days and not months like during withdrawal. 

Were you able to work while going through TSW?
No, not at all. I tried working for the first three weeks of withdrawal but after that, it was actually my mum who stopped me from going and said she would support me. I was pretty much housebound for over two years.

Why do you think you got better when you did?
As time goes on, the more I think that you get better when you're meant to and my withdrawal had simply run its course. I have said many times that I think a healthy diet is important BUT I believe you get better regardless. I also think that things like steroid usage, age, climate etc. play a part … but could someone just research this already and give us some peace of mind.

Do you think there is a link between periods and flaring?
Honestly for me, there hasn’t appeared to be any link. One day I might start to see a pattern forming, but the rashes I get tend to be sporadic.

Did you experience oozing?
Oh my goodness yes. I oozed from my face, neck, chest, arms, back, left ankle and hands. Luckily, it only lasted on the whole for the first three months with more isolated oozing on my hands and left ankle later on. It's a draining part of the process (quite literally) and when it stopped, the relief was immense.

Did you suffer with insomnia?
I didn't sleep much for the first year of withdrawal and during the first six months especially, I barely got more than two hours in one go. This is extremely tough to deal with as you spend your days exhausted and desperate to sleep but can't when you have the chance to. 

Did you suffer with anxiety while going through TSW?
Absolutely.

Do you suffer from asthma?
No.

Have you ever taken oral steroids?
Yes. I took one course of what I believe was Prednisone in my teens and part of me thinks that was when I developed TSA.

Did you sweat excessively through withdrawal?
I certainly did – more like I was a human waterfall. It was in the second year of withdrawal when the sweating started and out of all the symptoms, this was something I found extremely hard to deal with. Without moving much at all, there were times where I would be covered in sweat. I would wake up drenched in it, and if I got excited in any way – even just talking to a friend on the phone – I would sweat profusely. A lot of people say it's a sign that the body is healing and now, looking back, I would tend to agree. My sweating is completely back to normal now and has been since I recovered over two years ago. 

Now that you are better do you still get itchy?
Not really. On the very rare occasions that I ever do get itchy, it’s just a mild irritation that I can ignore and definitely not that bone-deep itch you experience while going through withdrawal – more like a feather gently tickling my skin. 

What do you eat?
I eat a balanced diet which includes gluten and dairy, amongst other things, and regularly indulge. I have what I want but choose to eat well most of the time.


So that is all for now but like I said above, if you have any other questions I haven't covered, do let me know!

And another thing that you might need reminding of today: you WILL get better!

Hugs
Cara xxx

What I eat in a typical day

Out of every single question I get asked about TSW/eczema etc, the most common one (by far) is what I eat in a day/what my diet is like. I am not a nutritionist, and neither do I eat solely from Wholefoods or take more vitamins per day than I have had hot dinners - this is just an honest view of what I eat in a typical day. I believe in real food - food from the source and stuff with as little extras as possible. I do not believe gluten and dairy is the enemy but of course, if you have an intolerance etc that is a different story altogether. In my opinion I have never looked so well and the quality of my skin - regardless of eczema/TSW or otherwise - is to be perfectly honest, wonderful and I know this, for the most part, is down to what I eat.

I am probably eating too much of one thing over the other (YAY for cheese and yogurt!) but now I try to listen to what my body wants over eating for any other reason. I spent years counting calories in a bid to lose weight and amazingly since I have stopped counting calories and actually listened to my body and when it actually wants to eat, I have lost weight and got to a body shape that I have never been happier with. As I am on a very tight budget, I try to walk whenever possible to save on the fare and it's amazing how that has changed the shape of my body too. When I was going through the tough parts of TSW, I sat on the sofa for shocking amounts of time and now I can't tell you how much joy I get from walking around for long periods of time - first off, because I can, and because it doesn't give me any discomfort whatsoever!

So here is what I eat in a typical day:

BREAKFAST

99.999% of the time my go-to breakfast is porridge and blueberries. I just cook porridge oats with semi-skimmed milk then add approximately 100 grams of blueberries when the porridge is cooked. I love it dearly and it really keeps me going until lunch. Something pretty special would have to come along for me to not have this any more. When I am feeling particularly 'wild' at the weekends, I love to add a chopped-up ripe banana into the mix which tastes so indulgent that I can't believe it's actually good for you. 

LUNCH

I tend to have a bigger meal at lunchtime as I don't like anything too heavy before bed - I would definitely try this if you can as it makes a big difference. A meal I love is brown rice pasta with fresh pesto. I have an 'unhealthy' obsession with broccoli so I like to add a large portion of it to my plate which tastes absolutely wonderful with the pesto. Aside from the health benefits of choosing brown rice pasta over it's traditional counterpart, I actually prefer the taste ... really. No matter what I have for lunch, I always finish off with two clementines.

SNACKS & DRINKS

I have an apple each day between lunch and dinner which tides me over perfectly until my next meal. I drink plenty of water each day and after every meal, I have a large cup of green tea that finishes off the food so perfectly I feel bereft when I don't have it (a little strong there perhaps Cara ...).

DINNER

My love for the avocado knows no bounds and this easy meal is a favourite of mine (and one I am having today!!!). I have three to four pieces of buttered German style rye bread from M&S with one mashed up avocado and a side of spinach. It's quick, filling and absolutely delicious.

DESSERT

This makes me very happy indeed and is probably the food highlight of my day. I have talked about this (A LOT) before and all it consists of is 2 RIPE mashed up bananas with a generous portion of Yeo Valley natural probiotic yogurt. It tastes better than ice cream and I look forward to it every day. A perfect end to the day.

So there you have it! I hope it's given you a few ideas and if you like these kinds of posts, do let me know and I will try to do more in the future.

Hugs
Cara xxx

My Topical Steroid Withdrawal update – Month 32

Here are some photos from the last month of my withdrawal. As always, the video where I talk about how it has been can be found here. Like I said in my video, even though I won't be doing videos from now on, I will definitely be doing a monthly update post here on my blog.

Obviously, I cannot predict the future, and I don't think I can ever bring myself to utter the phrase 'I'm healed!!!' but for now, things are more wonderful than I ever expected them to be. I can't believe it and I don't think I ever will.

I will be blogging a lot more in the future so keep an eye out for future posts. You can also follow my blog so you never miss a post via Bloglovin here or if you enter your email address near the top right hand corner of this page, you will be notified of my future posts.

Big hugs
Cara xxx

The 2 photos below show the (very, very faint) rash that started on my arms but quickly disappeared after the two week experiment that I blogged about here.