Day 16 Don’t Lose Yourself

Today I want to write about how important it is to not lose yourself in this process of steroid withdrawal.

As I have mentioned in previous posts, the rebound effect of coming off topical steroid creams is awful. The skin burns and oozes and the body alternates between shivering with cold and burning up and pouring with sweat. It is very easy to give in to these horrible symptoms and shut down completely, becoming a recluse, partly because of the physical manifestations of this illness but also because of self conciousness about appearance.

I had an experience yesterday which brought this sharply into focus.

I had a particularly bad night, with hardly any sleep and woke up at 5:00 a.m. with raw weeping skin all over my body and bad shivering attacks. I had promised my young daughter that I would attend an event at her school where parents can come in and do craft activities with the children. Every day she had asked me if I was still coming because she knew I was ill. I assured her that I would come even if I felt ill.

Anyway, the morning came and she was really excited about me coming, but I felt rock bottom. I told her I'd had no sleep and showed her my raw skin, explaining that there was no way I could come to school with her. She cried and so did I. I felt awful.

I poured my heart out to the support group and the members were very supportive. One lady suggested that I try to make the effort to go. I creamed myself up, put on clothes that covered my whole body and went for the last hour. When I entered the room, my daughter beamed and said "I knew you would come. I just knew".

The moral of the tale is that sometimes, even if we feel lousy, we need to keep some kind of normal routine to avoid losing a piece of who we are. If I spent every day sitting like a zombie, a slave to my skin, it wouldn't help anyone. I find it best to rest up in the mornings when my skin is feeling the worst and then try and do something "normal" in the afternoons, even if it is going to the shop or for a walk. As I have kids I have to fetch them from school every day, which forces me out of a self induced stupor. A normal routine can really help me to cope mentally. I have no intention of losing who I am or becoming just the "lady with the bad skin".