I love Christmas, and spending time with my amazing family, who are so supportive and understanding, but this TSW journey is so exhausting that stepping out the comfort zone of quiet living and self care at home fills me with dread. Every time. And even afterwards, when I have had a lovely time, enjoyed myself and taken part in whatever event I’ve dragged myself to, it takes me some time to recover back to my lumbering unsatisfactory normal state of skin. It is such a fine line between feeling in control and spiralling out…
Dust, dust, dust…
I felt almost incapable of going up into the loft in case I got dusty and that started off a scratch frenzy, as I have quite a bad dust allergy. I left it really late to put up my tree but eventually, the day before Christmas Eve I steeled myself, covered up, put on my dust mask, my gloves, and just did it. The boxes weren’t too bad but the fake tree was a bit dusty. It was worth a bit of wheezing and itchy hands… because of course, I took off the gloves too soon. Having my little tree up really got me into the festive spirit and ready for the celebrations to come.
Worried about a flake-off
My face and neck are my worst affected areas at the moment and seem to be going through a kind of cycle of burning, red soreness, then crusting over into a hard leathery husk, then flaking off. And boy did TSW get me this Christmas. It did not disappoint. But at the same time, I needn’t have worried quite so much. So what if my face flakes? Really so what…?
I went to my cousins and had a really enjoyable post Christmas quiz evening, with all safe, freefrom food that I could eat and they were kind, caring and did not comment on the red husk that was my face. my cousin Andy even made these amazing gluten and dairy free pastry Palmiers.
The flake off began on the drive home. But it wasn’t so bad. The flaking stage is the least painful, but the most embarrassing.
Sweat is good for you
I also cooked a really hot Thai curry for my Mum and her best friend Kay. It blew our heads off, was the perfect heat for a curry and I realised another thing, the sweating is so helpful. I’ve managed to also walk loads and run this Christmas holiday and all the sweating really helps! Get sweating people! You won’t regret it…
Christmas Day of feasts
My brother and his family hosted and went to extraordinary lengths to make everything suitable for me.
I had EVERYTHING that all the rest of the family had, right down to the Christmas cake. My first ever real marzipan cake since discovering I can eat almonds last year. He made it all, from scratch, right down to gluten and dairy free bread sauce, which we all had, even those who could eat normal bread sauce.
The only thing I couldn’t have was the cheese board, but I didn’t have any room for any pudding after the amazing main course. There was also a ham terrine starter! We were really spoilt on Christmas Day. And all cooked by this man, my brother, David. Thank you.
I am still feeling all warm and loved, because my brother really gets what I’m going through.
And how as my skin on xmas day?
In a word? Awful! Christmas Day brought full on constant flaking. And I mean pretty much all day. At one point I had a pile of flakes on my knee and my poor nephew sat in front of me and dislodged a pile of bits of my face all over him… urgh! Gross!
But even he, my teenage nephew just brushed them off and didn’t make a thing of it. It was me that was completely grossed out with it all, another flaking face day after all the hundreds that went before it. You’d think I would be used to it. Be able to embrace it and cope. Well I can at home, but not when I’m out. I’m so OVER TSW!
Despite all this, I was question master for our annual Christmas quiz (thanks to cousin Grace for donating this year’s questions). We had fun, we laughed and we played many other games as a family.
Why can’t I just sleep?
One thing that always worries me, will I sleep? I think stressing about not sleeping only makes it worse. I didn’t sleep on Christmas evening despite feeling absolutely exhausted. TSW is a really mean companion. I don’t itch all night, but I seem to go through a cycle of over heating, itching, scratching, gentle breathing to calm myself and then the cycle continues. I find myself just rigid with tension which seems hard to break. I think I finally drop off around 6 or 7am on a bad night, knowing the world is waking as I finally find sleep. This is improving of late but sleeping in an unknown bed at my sister’s house was a challenge. Doubly cruel as we all know that it’s sleep that brings healing, something that is hard to achieve during TSW. My body just won’t sleep. Can’t relax. And the TSW cycle continues. But I survived. I got up, exhausted and flaking, managed the drive home and then dozed in front of Christmas TV.
On a more positive note. My FitBit tracks my lack of sleep and in the week after Christmas it has been looking better and better. I am actually getting some sleep, just very little deep and REM sleep. So that’s my goal, to build on all the things I’ve done to create a good night’s sleep in 2020. Blog coming soon about that!
We had a white Christmas
So this is a thank you to my wonderful family. You really don’t know what your acceptance and kindness means to me. This horrible condition just makes you want to hide away and skulk in a festering flaking cocoon, but getting out, being with friends and family and taking part in life is also essential to healing, both emotional and physical, despite how hard that is.
I really think my skin is a little better too. The pain is lessening. I don’t want to hope for healing too soon as that only brings disappointment but it is a little better.
And in Stratford, East London, we had a white Christmas, even if that was just all over my shoulders, my brother’s house and my poor nephew!