I'm keen to report on the good times during this recovery. I think I can now say the latest flare lasted for 9 weeks. I'm now in a good phase again. It's important to say a good phase means better than any time I was on steroids (4 decades). As you can see on the photo below, taken today, the skin on my arms and legs are fully recovered. As in no underlying skin condition. I still have healing to go on my face and ears but it's improving each day. It's so liberating to not need any skin product whatsoever. I don't avoid any foods either.
I have now been back in full time work for 12 months. I was off sick for nearly 9 months in that first year of TSW but the flares since then have not led to further periods of sickness absence. That is because, however nasty, they were at least localised and not across my whole body. Yes, there were a few weeks when I had to work from home but I was still able to function. I am extremely grateful to my employers who set up reasonable adjustments in the summer of 2022. They remain in place for the next flare.
I continue to try my best to raise TSW awareness whenever I can. Some exciting things to report on that front over the next few months. Although I can say here that I will start presenting my TSW case to medical students and non- medical prescribing students later this year.
I have written in previous postings that the decision to stop taking topical steroids has never been doubted. 11th August 2021 will remain a date I will never forget. It happened to be Theo's 16th birthday 💙. The withdrawal process is horrific and I think the mental impact this has had on me is still being processed. I talk regularly to Jude about that and the potential of PTSD. That's why I try and walk every day and I am now back at the gym (slowly getting fitter physically).
As ever, sending my love and support to everyone going through TSW and carers.
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