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 ..read more

My last posting was over a month ago when I described the mini flare. It's continuing and it is testing my patience and positivity. The only reason I call it a 'mini flare' is because it is localised to hands and head. It is a beautiful sunny day today in Ormskirk and I am just sitting and watching the day go by. Jude is there every step of the way and has just reminded me that this will be worth it in the end. So, this is just a brief update to check in. One of my lovely and brilliant colleagues was presenting to our PhD students a couple of weeks ago and she quoted Martin Luther King Jr. i ..read more

After 5 months of being so well I am now in the middle of a mini flare. I would call it a mini flare because it is more localised, affecting my face and ears. Eyelids are swollen and wet. Ears are weeping. It is very uncomfortable and debilitating. It also brings back memories of the really difficult times of TSW. I am 10 days in now into this mini flare and it is just a case of being patient and recognising this is all part of the healing process. I have been so well that I had begun to think that may be the flares were over. I knew though that this was highly likely to happen. I will post ..read more

I am stopping counting the days for now at least. It is 510 days since I last used topical steroids but I now believe I have been suffering from TSW symptoms unwittingly since 1989. I am sure I was addicted by the age of 21 so the clock starting ticking thousands and thousands of days ago ! I know because back then I lived in Italy for 6 months. My stock of topical steroid creams from the UK ran out after 4 months and I became really ill with what I thought was a chronic eczema flare up. Italian doctors did not want to prescribe topical steroids and provided an alternative treatment. I got wo ..read more

This is my 4th posting since I started TSW. If you haven't read my previous postings I would gently encourage you to do so, especially my photographic diary of my first 100 days. I am learning more each day. TSW is still horrible and at times torture. The main learning point is that there is only one contributory factor in recovery: TIME. Nothing else really helps. Sometimes I may use sudocrem or zinc cream or bandages but these just help me to get through a difficult moment. If anything these coping mechanisms just slow down the healing but they give some respite to the pain or deep itch. I ..read more

It’s Day 381 of TSW.  I have not posted in a while.  This is because I had a long and nasty second flare. Also Jude has not been well, probably a direct impact of watching me suffer and having to care for me 24 hours a day. Jude had first discovered that TSW existed so she had a sense of responsibility for introducing me to it. Jude was petrified during the first 100 days whether I needed medical care. Was I infected or not?  She was literally holding my hands throughout the night to stop me damaging the already open skin. She was constantly trying to think of way ..read more

This photo was taken on 9th August 2021, two days before I used topical steroids for the last time, after using them regularly all my adult life. No one would know the extent of my burning skin under my clothes. I used steroids, as advised, like a sticking plaster to allow me to function on a day to day basis. Here is my photographic journey. Warning: some of these photos you may find disturbing. 17th August 2021 (Day 6) I messaged close family members to explain my decision to stop using topical steroids: I am sending you this message because I know you care. As you know I have lived with ch ..read more

My second blog (Day 183 of TSW) reflects on the effect my TSW has had on close family. I published my first blog in mid January. The response to it has been truly amazing. Jude and I have really appreciated the lovely comments. Over the last month my skin has become stronger and stronger. The skin around my eyes and forehead is still healing. For the first time that I can recall I have what I can only describe as 'normal' skin elsewhere. I have freckles I didn't know I had! The main symptom that continues, common during TSW, is excessive sweating. This means lots of changes of clothes and salt ..read more

It’s Day 381 of TSW.  I have not posted in a while.  This is because I had a long and nasty second flare. Also Jude has not been well, probably a direct impact of watching me suffer and having to care for me 24 hours a day. Jude had first discovered that TSW existed so she had a sense of responsibility for introducing me to it. Jude was petrified during the first 100 days whether I needed medical care. Was I infected or not?  She was literally holding my hands throughout the night to stop me damaging the already open skin. She was constantly trying to think of way ..read more

This is my 4th posting since I started TSW. If you haven't read my previous postings I would gently encourage you to do so, especially my photographic diary of my first 100 days. I am learning more each day. TSW is still horrible and at times torture. The main learning point is that there is only one contributory factor in recovery: TIME. Nothing else really helps. Sometimes I may use sudocrem or zinc cream or bandages but these just help me to get through a difficult moment. If anything these coping mechanisms just slow down the healing but they give some respite to the pain or deep itch. I ..read more