Sunday, 19 July 2015

214 Days off Topical Steroids

So I'm now a few days into my eighth month (seriously when did that happen) and it's time for a skin update.

Please enjoy my many photo collages, they took a great deal of time and effort to make...

About six months before I went off topical steroids my feet broke out in a nasty rash. They were red, itchy, cracked and dry until I started my withdrawal where they cleared up very quickly (interesting eh). They flared briefly early on in my withdrawal but honestly they haven't bothered me since and now the skin there is more or less perfect :):):)

Throughout my withdrawal, my legs have been pretty bad, but probably the area that has been the least bothersome to me compared to everywhere else. They have been pretty itchy, prone to developing oozing wounds when scratched, and quite red. These days they are much less red and itchy. They still get a few small cuts and scrapes occasionally when I scratch them, but nowhere near as bad as they have previously been.

My stomach, sides and back all seen to be in a similar stage of healing. They all flared horribly in the early months of my withdrawal. Now they are all much improved, still itchy, a little red and occasionally develop small wounds from scratching, which heal in a few days.

My hands were pretty slow to start flaring, with the infamous 'red sleeve' developing over the first few months. The burning inflammation reached a peak around March-April, and since then the inflammation has faded somewhat, but my hands are still dry, leathery and just overall rashy. I have also developed rashes on the palms of my hands which I have never experienced before.

My arms have been inflamed and rashy fairly consistently throughout my withdrawal. They have improved slightly, but are still very uncomfortable and itchy (I haven't been able to wear sleeves over them for the past 7 months).

My chest has been a problematic area for a long time. It has improved greatly but still nowhere near back to normal. It is consistently lumpy, itchy, inflamed and the skin is thick and leathery. I was also having a great deal of trouble a few months back with hundreds of tiny oozing bumps along my chest/boobs. Thankfully I can say that the skin on these areas is 95% back to normal (left only with a small amount of redness).

My poor ears really struggled in the first month. The picture also shows that I had a great deal of thinning hair and scalp flaking. These areas are mostly back to normal.

My face has been by far the worst area by far throughout my withdrawal. Looking back at old pictures I can definitely say that it has improved, although I'm still struggling a great deal with oozing, shedding and raw, burning skin (enough to prevent me from functioning normally or leaving the house).

For the past six months I have needed to have a bath every day to endure the pain and discomfort of my skin (on my worst days needing to stay in for 8 hours to cope with the pain). The last month however I have managed to cut this down to every second day which is a huge relief for me as I can manage to not have ice packs on my face on these days and just overall function a bit better.

I really struggle to take care of my hair while I'm feeling so rubbish. My brain just doesn't allow me to invest energy into properly washing and brushing it. So over the past month I have been only minimally taking care of it, and by the time I properly got to thoroughly brushing and washing it last week, to my dismay I pulled out several chunks of tangled hair due to it being so long and unruly, so I decided it was time to try cutting my hair by myself as I wasn't comfortable going to the hairdresser. I am stoked with how it turned out and it really helped me to feel like myself again. I realised how important it is to do things like this as its really easy to lose yourself in an illness and forget who you are.

Clearly I have a lot of healing left to do, but I'm starting to see myself in my reflection for the first time in a very long time.

In general I'm still just trying to make it through each day best I can, I have a lot of days when I feel like I'm going backwards and things are hopeless, but I am starting to have a few good days every now and again.


  1. Good to have an update from you Hayley :) I'm pleased to see you've seen some improvements even though you're still struggling with your face. Having tsw on the face is the worst !! Hang in there!

  2. Thanks so much for sharing your story. What a crazy journey you have had! So sorry that it's so bad on your face. I feel just the same when mine flares and all I want to do is stay inside did weeks. I'll be following along and praying that your journey to being fully healed cones soon x