Wednesday, 18 March 2015

Day 91 off Topical Steroids

So I've been absent from my blog for the last month or so now and I wish I could say it was because my skin hasn't been bothering me and there has been nothing to report.

Unfortunately that is not the case and I've spent the last few weeks rather miserable and dealing with quite a lot of pain, making it a real challenge to focus on doing even small things like watching TV, let alone sitting down and writing a post. 

Anyway. Time still passes and I am three months into my recovery!

My face continues to be an absolute mess. It oozes like crazy every night shortly after lying down to go to bed (I definitely think lying horizontally has something to do with it). I then wake up with my face covered in a thick, sticky, crusty layer of dried ooze and skin. My eyes have also been pretty irritated as I'm pretty sure the ooze comes out of my eyes when I rub them. A few weeks ago some spots on my face started to bleed instead of ooze which I think is a sign of improvement. Even so, it's utter shite and waking up to this every morning is an absolute nightmare.

Good news is, soaking my face while I'm in the bath allows me to wash off the crust and blood and I can spend the day being slightly more comfortable although the skin on my face is quite raw afterwards. The cycle begins again once I go to bed. 

The rest of my body is also pretty bad. The overall skin tone of my body has turned from white to red. It is still very itchy (worst at night) and very dry. It is also very fragile, and scratching now tends to tear away skin to create a raw, oozing wound that usually takes a few days to heal. These wounds are extremely painful and I usually have 15+ spots like this on my body at one time. I also have several patches of my chest that are extremely inflamed with hundreds of very small blisters-like bubbles that have been oozing at night for the past month or so and I need to sleep with old tshirts wrapped around my chest. Over the last few days this oozing has subsided slightly.

 I am also just generally cut up and sore everywhere. 

My 'red sleeve' has continued to spread up onto my hands.

The pain is usually worst when I wake up first thing after a full night of scratching (these days I feel like I've been attacked by a cheese grater), and to get through the day I jump straight into a Dead Sea Salt bath and stay there for a few hours. This seriously helps with the pain, and also allows me to clean my face of blood and dried ooze, and also heaps dry out and heal the wounds on my body.

Apart from general pain and itchiness I am experiencing, I'm still barely sleeping (maybe three hours a night if I'm lucky), and I'm also experiencing a lot of shaking and anxiety for some reason starting in the late afternoon.

To cope I'm taking a long bath every day while listening to music, watching plenty of tv (Grey's Anatony and My Kitchen Rules), playing lots of Crash Team Racing on PlayStation with my boyfriend, and working on my cross stitch. Even so, things are feeling very monotonous and I am over not being able to leave the house. But you know, soldiering on.


  1. Isn't it an absolute nightmare.... Indescribable the amount of suffering.

  2. I'm so sorry Hayley. My face oozed but it never was thick enough ooze to crust over. That looks super scary and painful and just everything terrible. :( Hold up though, it will eventually subside. Sending you lots of hugs.