Sunday, 30 August 2015

Hiatus: Eczema and RSS/TSA/TSW Awareness

Hello blog world; I have once again returned. Well...kind of. It's been quite difficult for me to blog over the past year because of various reasons but I still wanted to try keep this blog running. However, I have finally decided to put this blog on hiatus for an indefinite period of time due to health reasons; my eczema. Some of you may have seen me mention it here and there on my blog but I want to properly address it today. I also want to spread some awareness about something I'm going through right now called "Topical Steroid Withdrawal" (aka TSW). This is going to be quite a lengthy post, so for those who want the long story short:

DON'T USE STEROID CREAMS (or use them very sparingly).

For those who want to continue reading, I'm going to warn you that some of the photos I'm going to include are pretty gross. Eczema is a skin condition that is itchy and dry which doesn't sound life threatening but this post is here to show how bad it can become. Eczema needs to be taken seriously.

June 2015

Let's start with a somewhat presentable photo of me so I don't scare anybody yet. A little back story: I took this selfie because I had just done my make up on the train and was pretty proud of the result! I didn't upload the photo to anywhere until now, because if you look carefully you can see my shoulder, neck and chest area had red patches and dots on them. I even tried to cover it with my hair and no photo filters was going to hide that redness! I had other photos from my little selfie session but all of them were the same; you can see my red patchy skin in all of them.

During this time was when we had the heatwave in the UK which worsened my eczema. I didn't want show my skin but it was just too hot to keep it covered. It was affecting my self confidence so I went to see the doctors to get some more steroid cream because the one I was using (Dermovate) was running out and moisturiser wasn't cutting it for me. I also requested a cream for my face because my eczema had spread to my face and I seriously felt ugly on days it was scaly. And so the doctor gave me some new steroid cream; I was prescribed Hydrocortisone for my face and Eumovate for whatever else was on my body.

So I used my new steroid creams and my skin got better. My face in particular got really good it was even glowing at one point! This didn't last long though. I got worse and then better again. I didn't think much of it at first because this was "the eczema cycle"; skin gets better, skin gets worse, and better again, and worse. Apparently there is no cure for eczema; you just have to deal with it. Eczema is always going to come back but you're good skin days will come again. Bullshit.

This time round, my eczema did not get better. My arms got more itchy so I scratched more and my wounds got bigger, eczema also started to appear on my legs which I've never had before and my face was a peely mess. Feeling desperate, I decided to slather the cream everywhere. I even started to use Eumovate (the cream for my body) on my face because Hydrocortisone wasn't working anymore! Thing got better temporarily but then worsen! And this brings us to now; how much of a mess my skin is in.

Keeping this photo small. Told you it will get gross. 

My skin is constantly flaking. Rubbing it would make it look like it was snowing. I'm obsessed with brushing the dead skin off my bed throughout the night when I'm supposed to be sleeping. My bedsheets smell and have bloodstains because of the bleeding and oozing so I have to change them more regularly than normal. My wounds refuse to heal so every time I shower I feel like I'm washing in boiling water. I'm now too scared to exercise because the sweat stings me and moving too much can risks splitting my skin and reopen my wounds. The itching has gotten so bad, after resisting scratching for a whole day at work, I will dig into my skin for a good 5-10 minutes and then feel guilty because I have made myself uglier. I just want normality. An itch-free life, because I am hurting 24/7.

Like many people with access to the internet, I decided to google my symptoms. Research. I wanted to find a cure. Answers. By doing that, I stumbled upon MIMS's (Monthly Index of Medical Specialities) site. It is "one of the most up-to-date prescribing references for healthcare professionals." The page which I found was a table of how strong different steroid creams were.

The table

Scroll down a little more and I find this

As mentioned, I was on Dermovate and went to the doctors to get more as I was running out. If I was using a "very potent" cream, why was I prescribed Eumovate which is only "moderate"?! It's no wonder my skin got so bad; it is crying for something stronger. My doctored fucked up. Great. However, this isn't the only thing doctors are fucking up on. There is information out there that steroid creams can worsens eczema.

ITSAN - International Topical Steroid Awareness Network

"What is RSS?

Red Skin Syndrome, also known as Topical Steroid Addiction and Withdrawal, is a debilitating skin condition that can arise from the use of topical steroid creams to treat skin problems such as eczema"

ITSAN will have a more in-depth explanation, but basically what happens when you use steroid creams to treat eczema is that the skin can get hooked on it. The skin wants more steroids so the creams becomes ineffective. So you get a stronger one and the cycle continues. The eczema will start to "spreads" but at this point it is not eczema anymore and has become Topical Steroid Addiction (TSA). However, many doctors do not recognise TSA. Whether it's because they genuinely don't know about the issue, or just want to make money off steroid creams prescribed to eczema sufferers; both scenarios make me angry. Eczema is not just an itch and smothering steroid cream on it is not the only solution!

Here is my eczema story: I've had quite bad eczema as a kid which I "grew out of it" but occasionally would flare up on a little patch on my left arm. I always had a bit of steroid cream at the ready if it got too itchy. Fast forward some years, it wasn't until two years ago when it got worse during the time I was in university. It was probably down to stress but the doctors gave me a stronger steroid cream. My eczema did get a little better when my studies were over but then I started stressing about life after education. And this takes us to the selfie from June 2015 at the start if this post. My stress levels were high again during that period; skin got worse, ran out of steroid cream, was prescribed one not strong enough, skin got even more worse. I could've gone back to the doctors to get a prescription of my stronger steroid cream again but I decided against it. My skin is sooner or later going to get used to it and want a stronger steroid. I am not rubbing poison on my skin again.

And so my TSW journey began... As of now, I am currently 21 days into TSW (I believe I started on 10th August) so here's a mini photo diary of how things have been for my skin.

My bare face (Day 8)

It is a fact when going through TSW your skin will get worse before it gets better. My skin got more botchy and red on my face and neck area. The lighting was surprisingly forgiving that day but I swear I looked worse in person!

My left arm (Day 8)

I don't have a photo of it at it's worse, but I scratched my arm to a point it was covered in bloody cuts. My arm had been locked in one position for nearly 3 weeks because every time I moved it a cut will open up... It's only until yesterday I could start extending my arm fully without the skin splitting.

My leg (Day 8)

Eczema had started appearing on my leg even though I never had a problem there before. I have not been able to go bare legged as much as I wanted this summer because sometimes I'd bruise myself by digging into my skin too hard. Somedays my legs would be purple and I looked like I'd been in a fight or something!


I was already itching myself until I bruised before I started TSW. Sorry the photo's a little smaller; I had to crop some mess out.

Armpit area (Day 12)

This one is really gross (sorry!). It's really dry because I stopped moisturising (aka "Moisturiser Withdrawal) because apparently it speeds up the healing by letting your skin breathe and "learn" to produce it's own natural oils again. But left armpit got really bad. This further immobilised my arm. 

Face during Moisturiser Withdrawal (Day 13)

My face on the weekends where I don't have to go out to see anybody because I spend it doing Moisturiser Withdrawal (MW). This was my first weekend of MW. I'm actually too ashamed to take a photo of my full face at this point. I struggle to move my neck because my skin it so tight as it is so to not moisturise it is a nightmare.

My arm today (Day 21)

I have not moisturised my arm for 2 weeks now and I think it's paid off. Not 100% better but it's getting there. All least I have no open wounds and can move my arm again. It's also not as red!

My face today (Day 21)

Today is the weekend, I had no plans so I spent it MW'ing my face again. Comparing it to last week, it's a lot better. My lips are more pump too which maybe due my new slightly healthy diet in order to promote healing and detoxing in my skin. My skin is still botchy though and nowhere near as elastic as it was. My neck feels saggy and my jaw line is definitely not as sharp as it was when my skin was normal.

Asides from my skin, TSW has had some other side affect on me too. I've experienced joint pains, fatigue but a big one is the condition of my hair. My hair went from kind-of-unhealthy-from-bleaching-and-dying-it-but-still-manageable to SHIT. My eczema has spread to my scalp so my hair is falling out more than it used to. I get more dandruff too because I cause it to flake by itching my head like a mad woman at times. I also can't wash it properly, only using shampoos occasionally because it sting like crazy so my hair has been a limp mess for the majority of the past three weeks. I've always taken my hair for granted because it's always been quite strong so to have unmanageable hair for the first time in my life; I am lost and it's been a real confidence killer. I also can't dye my hair anymore so for someone who is considers herself a hair colour enthusiast, I feel like I've been a little robbed of my identity.

TSW has not only affected my confidences but it has affected my social life too. I can't stay out too long because my skin eventually dries up to what feels like a desert throughout the day. I finish work at 5:30pm which by that point my face feels like it's falling apart; I literally can't wait to get home to wash to rehydrate it and hide from the public until the next day. My friends and I have this "tradition" where we try to meet up and have a meal after work every week. I know I can't do that anymore because I went for a meal once with another friend after work; I was brutally itching my face whilst walking home from the train station afterwards that evening. Good job it was dark and not a lot of people were on the streets to see me attack my own face! The next day, my face looked terrible to say the least...all because I stayed out after work. TSW has also mades me not want to go out on the weekends and rather stay in to go through MW for my face since I can't bear to do it on workdays. This has prevented my boyfriend and I from going out on dates. I have become a hermit because of TSW.

I think I've made it pretty clear that going through TSW is rough so I hope you guys understand why I am going on hiatus. Before I was waiting for my good skin days to come so I can take photos for review posts, however I am not going to have a good skin day in a long while. According to other sufferers, TSW can take a minimum of 6 months. I have some photos which I still need to write blogs for, but honestly, my energy and mood level is so low I simply don't want to blog nowadays. I'm surprised that only a couple for readers unfollowed my blog during my absence! Thank you for those of you who have stuck with me.

The past 3 weeks has been hell for my skin to say the least but it's a good feeling to finally see some sort of improvement. Whilst I am getting better, it apparently can get worse and better and worse again before full recovery. I hope I've raised some awareness of the dangerous of steroid creams and what it's like to go through TSW in this post. I don't want eczema to ruin anybody else's lives.

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