Supporting Dad (Reflections after 6 months of TSW) February 2022

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 baths are needed, The photos below were taken on 23rd January (Day 165). Significant improvement compared to the photos in my first blog.

An example of the progress made is shown here. The photo on the left was taken on Day 53 and the photo on the right was taken on Day 165. Ears were oozing and so painful for 4 months but are completely clear now.

Progress has been better than I could have hoped for. The photo below on the left was taken on 31st October 2021 (Day 81). The night of Halloween has stuck in our minds as the most horrific point in the journey so far. A time when we were scared and out of control. How much worse could this get? The photo below on the right was taken on 27th January 2022 (Day 169). My eyes are still swollen and I have 'elephant skin' on my forehead but it is still significantly better. Daily walks have been a key part of my recovery. It was impossible up to Day 97 to do any kind of outside exercise but since the 16th November 2021, it became part of my daily routine. I was in a great deal of pain and discomfort when exercising back in November, but I pushed through the pain as I knew it was good for my physical and mental wellbeing. I am pain free now and I love and appreciate my walks.

As you can see below, my eyes and forehead are still swollen (30th January 2022, Day 172) but I am feeling so much better with lots more energy. Bloods tests are now normal with no inflammatory markers. I have never had normal blood results. After losing 2 stone (approximately 12 kilos) in weight during the first 90 days of TSW I have now started to put weight back on, about 3 kilos in January. Arthur, our dog, has also been there for me throughout.

As I pass the milestone of 6 months into TSW I wanted to write about my family support. I am SO lucky to have Jude and my four amazing children and their partners: Libby, Zac, Ben, Beth, Lucas, Alys and Theo. They all saw me at my most vulnerable moments. I look back thinking how difficult it must have been for them to see me in such pain, At my worst I couldn't even chat with my own children, I could not engage in any meaningful conversation. They were all so patient and understanding and didn't put me under any pressure to do anything other than recover.

The photo below was taken in late August 2021 at Alys' 21st party. TSW had kicked in so I could not attend. Below the photo you will see messages Jude posted in their WhatsApp group 'Supporting Dad' . They explain far better than I could the impact TSW has on my close family,

24th August 2021 (Day 13), Jude: Just setting up this little group so I can update you on how Dad is doing. He is having a really tough time right now and I realised it's easier to send one message than four xxx

14th September 2021 (Day 34) Jude: I know all of you know how tough things are for Dad and generally for all of us watching him go through this hideous TSW. So I don't need to bang on about it as you all know more than anyone outside our family. But Dad is now struggling mentally too so it's good for us all to be aware. Being so ill reminds him of all the other times he has been this ill and it's a bit like PTSD. Talking is good and he is talking. I thought the best way for you to help is to do some practical things that we need doing, I know all of you have your own lives and you are all busy but the following are small things that that would help ....... walking Arthur, cut the grass, cook tea, sitting with Dad if I can't. The most important thing is to just continue to be so loving and supportive emotionally. You are all absolutely amazing and the way you ask how Dad is every day means so much xxx.

3rd October 2021 (Day 53) Jude: It's breaking my heart right now. Very tired and really trying every strategy possible to keep him ok xxx.

12th October 2021 ( Day 62) Jude: After a really tough day we got Dad settled and wrapped up after his 4th bath. We lay on the floor and watched 'Bake Off' on TV. Dad positioned himself so his buttocks weren't touching the floor. Apparently he was comfy! He is all settled in bed now xxx

31st October 2021 (Day 81) Jude: This morning was so hard but today has shown me how much love there is between us all. You are all amazing. Thank you so so much. The thing I really need to know is that as well as supporting me and supporting dad that you support each other and also that you all enjoy your own lives. That is sooo important to help dad's recovery. You know how much he loves you. He would hate that his health impacted on your lives. Live every day to its full whatever else is going on. You are all my world 💜💙💙💙.

7th November 2021 (Day 88) Jude: Thank you all so much for all you do and how much you support me. The great thing about tonight was that for once all the world wasn't all about Dad, I have left him to sort himself much more today now he is a little better and I think it has worked, I needed to reduce my input, His skin is so much better (sore yes but not critical) just these sweats for him to manage somehow as they are the thing that debilitates him so much now. We love you all so much and that includes Zac, Beth and Alys xxx.

I could not have reached 6 months of TSW without the care and support of Jude and the children. I am convinced of that. I am so lucky,

Jem 10/2/22 (TSW Day 183 - 6 months !)