TSW through the eyes of a parent (Part 2)

Both my mum and I thank you for the lovely response to her last post here. As promised, here is part 2! A quick backstory if you weren't already aware: I am just over 28 months into Topical Steroid Withdrawal and doing SO well. I am not going to say anything along the lines of 'I'M HEALED!' as there is a chance, with winter coming soon in the UK, that I will flare again but for today, it's wonderful and I couldn't be happier. My mum looked after me from day one and her first post was made up of diary entries she had written down through the first month or so of my withdrawal. This post will be all about how she is feeling now, 28 months later and how she found the whole experience.

Also just to let you know last week I set up an Instagram account (here) where I post up to date skin pictures - before and afters, the food I eat and general life stuff. Plus if you have Bloglovin, you can now follow my blog on there by clicking here.

Hugs
Cara xxx


In my mum's words:
When my daughter asked me to write a follow-up to my diary I said yes and knew what I would say, but sitting down to actually write this is so difficult. The last two years are very hard to describe. They have been so challenging for both of us in different ways. It is lucky that I work from home so I could look after her properly, but I wouldn’t have been able to leave her anyway, especially in the first six months.

When things started getting really bad about three weeks in, the initial excitement of knowing that Cara could be free from topical steroids turned to fear. Her face was swollen, her skin was weeping including her ears and I was so worried about her. Reading blogs and watching videos helped, but it was still so new, and I was worried that Cara might be an exception. I am so glad she was strong and that the decision to carry on was out of my hands. All I could do was support her and make her as comfortable as possible. 

I bought lots of bedding because sheets and pillowcases had to be changed every day (and sometimes during the night) due to weeping skin. Neither of us got a lot of sleep during the first year. Because her hands were so bad, I washed her hair and had to do quite a lot for her physically that she was unable to do. I had a routine every day and worked long hours which stopped me thinking too much about what was happening. 

It is difficult to explain to people what TSW is. A friend of mine who has known Cara since she was a baby popped in one afternoon and when he saw her he was very upset and said afterwards that she looked like she had been badly burnt.

Looking back now, it’s all a bit of a blur and I am so glad Cara took photos because it would be difficult to remember just how bad it was. 

Cara wanted me to write about my experience and all I can say is that I have found out I am stronger than I thought. I felt a bit desperate at times, but got through it, and I appreciate everything now. I have found out so much about Cara and myself and it has changed us both for the better. It was a long road (26/27 months) but it is wonderful to see her so well now. She might flare again, but she is enjoying the simple things like having a quick shower and getting dressed, walking outside in all weathers without being uncomfortable and not thinking about her skin. I do a double take sometimes when I look at her because she looks just like she did before she started TSW and I was beginning to think that would never happen. Also, her skin is better than ever now and a creamy colour whereas before TSW, I realise it had a bit of a grey tinge to it.

I hope TSW and TSA are taken seriously by all doctors soon. About 4 months ago, an age spot I had on my hand became red and angry and changed shape. I left it for a few weeks, but it didn’t get better. I went to the doctor and he said he would give me a cream and if it didn’t work, to go back. I asked if the cream was a topical steroid. He said it was and I said that my daughter was going through topical steroid withdrawal and she wouldn’t be very happy to have it in the house. He winked and smiled and said, ‘Don’t tell her’. I just walked out of there stunned, didn’t get the cream and the spot cleared up on its own.

To anyone going through TSW, and carers looking after TSW sufferers, especially those with young children, my heart goes out to you and I am sending you a big hug xx