TSW 1 year in August 2022

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 ways of trying to help me. This all took its toll. 

TSW Day 378 Cotswolds

I wanted here though to write some positives as well as focus on the negatives of TSW.  I want to emphasise that I am more convinced than ever that choosing to withdraw from topical steroids was the best decision and it has been life changing.  Yes, in the short term with utterly horrific consequences, but the only decision to be made moving forward.  

It is inevitable that I find myself trying to summarise TSW to lots of people who ask.   I have been led to believe throughout most of my life that I had chronic and incurable eczema. In the summer of 2021, through reading and accessing blogs and books we realised that I did not have chronic eczema.  I had an iatrogenic condition, caused by prescribed topical steroids.  The symptoms I had experienced for 30 years were very different to usual eczema symptoms. For example, excessive skin shedding, burning red skin, noticeable red sleeves, an inability to sweat, thermoregulation issues, elephant like skin on my knees. I had visited many dermatologists seeking answers why I was burning yet cold and I was continually told it was severe atopic eczema that required steroid treatment or immunosuppressants. Once I discovered my symptoms matched others whose skin was addicted to topical steroids I had no choice but to totally withdraw from the medication. I am now over a year steroid free. Whilst it has been the most horrific journey I know it is the right decision and I can now see how my body is naturally healing the skin from within. It is not worth the emotional energy to think negatively about the past but to deal with the now so that I can look forward to a future of skin freedom. 

On Day 381 of TSW I feel well and physically fit.  My legs are still healing but I am overall much better.  I am still going through the process of withdrawal but I am now living life to the full and I am grateful for that.  Yesterday, I went to the Barbers for the first time in years and years ! Jude has had to cut my hair, often shaving it, because of open wounds. My scalp now is the best it's been for decades !

TSW Day 380 after the Barbers 🤣

The fear of further flares is very strong.  All I know is Jude and I have strategies in place for dealing with any relapses.  

As I reflect on my TSW since my last posting, Days 200 to 350 were extremely challenging. Swollen, raw and weeping eyes and forehead throughout as well as very sore legs, hands and at times neck.  I had another spell off work.  I decided not to document the skin photos like Days 1 to 100. I honestly don’t know how I survived that first flare.  I am still coming to terms with that trauma.  The second flare was bad but not as acute as before.  

What I really want to focus on is the last 30 days.  In that time Jude and I, with Theo, our youngest (turned 17 this month) have managed a 2,500 mile European road trip in our camper van.  This was unthinkable in early June but by the end of that month we decided to plan a trip for the beginning of August. I was showing signs of improvement and Jude was well again. We planned it knowing we could cancel or turn back at any time.  On 1st August we set off. We were really concerned as my legs were swollen, so painful and weeping badly with open wounds.  The first night we slept in the camper van and I slept with cushions in between my legs to stop them sticking together.

TSW 363, in France on way home

As we made our way through Belgium, Luxembourg, Switzerland to Italy, my skin started to improve slowly.  My legs remained sore throughout the whole trip but nothing deteriorated so we never had to contemplate returning home early.  Jude and Theo were the scratching police. As soon as I started to scratch they would tell me.  Anyone going through TSW will tell you, itching and scratching are as regular and common as breathing. For me I need that constant reminder to stop. 

We returned home via France.  It was the most fantastic, memorable holiday and we did it despite TSW.  

Lucerne, Switzerland

It was a major boost that we could experience travel and other countries again. On my return to home it has really hit me the high levels of post trauma I am dealing with and the sheer panic of acute flares returning.  Just walking into some rooms trigger post trauma and thoughts of desperation and pain.  I have now stored away clothes I wore while going through the most acute TSW phase.  I avoid baths.  After spending 70% of my day in salt baths I now only shower once a day at most.

Since our return home we are still taking short breaks in the camper van. I feel liberated away from home.  I am writing this while away for the weekend in the camper van.  I feel positive and thankful all is ok.  

26th August 2022