Tuesday, 14 April 2015

118 Days off Topical Steroids

It has been a very, very difficult few weeks.

I believe I am still in the thick of my withdrawal symptoms. However every time I think I must be in the worst of it I end up taking a turn for the worse and subsequently turn around and laugh at my former self for thinking this. Silly girl.

I've gotten a great deal of support through this blog which has been amazing with people from countries all over the world reading it. What is really cool for me is having people contacting me because of it, as I started this blog mainly for other people going through this hellish withdrawal process themselves, and also to raise awareness about it, which I think I am doing so I am happy about this.

However what is so difficult is people I actually know, friends and family, seeing what has been happening to me. Writing posts also involves a whole lot of reflection and reliving of horrible moments that have happened so I can share them here. I think that is probably why I leave such a large time gap between posts.

Anyway. I managed to make it to an appointment to see my doctor after several months of the pain being so insane I couldn't even fathom leaving the house. He briefly forgot my situation and asked me if I had burned my face. Ah. No sir. The point is I had a swab test done on my face as he was concerned that I had a staph infection on my face which sure enough I did. After two courses of antibiotics the infection on my face is gone and my symptoms (which are still just terrible) look more like normal topical steroid withdrawal symptoms.

This was a few weeks ago now, and since then my face has cycled between dried oozy skin in the morning, and burning red skin after my bath. For a few weeks now as well my face has been oozing constantly, not just at night. However within the last week or so I believe I have started to see skin forming over my raw, oozing face for the first time in a very long while. This skin is fragile and weak and tends to come off with rubbing or scratching my face but nonetheless it is still skin. My face is still a mess but hopefully change means progress is being made. I still get very sad looking at my face, this was this morning. 

My flaring patches have spread properly to my eyelids so every morning they are crusted shut which is why my eyes are half-closed and sad-looking in this picture. Also I was sad. My eyes have also been oozing significantly so my eyeballs are irritated and very red all the time.

The rest of my body is still pretty much the same if not a bit worse. My whole body is inflamed and red, dry and covered in oozing sore patches.

My chest/boobs have been severely inflamed and oozing and the past few weeks it has been 24/7 oozing instead of just at night. Fortunately the inflammation had dried up a lot over the past few days and I'm getting a bit of relief in this area.

I have also started to noticed that I have lots of enlarged lymph nodes in many parts of my body such as my neck which I will have to keep an eye on.

My mindset has not been great. I have been trying really hard to stay positive but honestly some days there is just no way to do that. The best I can manage most days is to live in the bath and stay as distracted as I possibly can (thankyou Netflix).

I have lots of love and support around me which I am so grateful for, and a very special boyfriend who refuses to stop calling me pretty so I guess things could always be worse.

I hope all the red skin warriors out there are coping, I'm thinking of you all Xxxx

1 comment:

  1. I'm so sorry Hayley. Anyone would be sad with their face looking burned like that!!! I got lots of ooze too but not really the crusting over type. Get lots of support, the psychological aspects are very important to keep on top of.
    I hope it clears up soon.