Things can really change in two weeks! The oozing face has pretty much stopped woo hoo !
Face became a much more normal colour, and I started to look a bit more like I’d been rushing about or caught the sun. Face goes itchy once or twice a day with that dreaded crawly sensation but it is otherwise okay, sometimes it looks a normal colour, sometimes a bit rashy, sometimes red. Skin feels tight and a weird texture and then sheds for a day then is better the next day before the cycle starts again. My face looks redder if I sit in the house all day, if I get out it looks a lot better.
My chin developed loads of tiny little paper cuts which try and close up and then split open when eating/talking which is pretty unpleasant, lips also have quite a few splits in too.
Red sleeves have gone! ( for now), bet they will be back though, I sometimes feel a bit hot but the burning sensation has gone for now too. I now look more like I have severe full body eczema.
Since ooze reduced I have been able to get out more and see friends and see my horse. There is something relaxing about being with Cheddock, on the days I manage to ride I am much happier, I wear a silk balaclava under my hat and keep my hands and arms bandaged up. He is doing awesome at the moment. Horses are so sensitive and notice any unusual smells. I really think horses notice when we are ‘sick’. I probably always smelled of TSW to some degree so Ched doesn’t notice any difference, If I go near anyone else’s horse they really sniff at my bandaged hands and round my neck (the bits that flare quite a bit) it is really strange. To a human nose the ooze smell has almost gone from upstairs which must mean I am healing a bit or the methotrexate is actually starting to help ( when I am not barfing it up into a pan).
I have managed for the first time since starting TSW to get up and not bath straightaway! This will not sound like an achievement to most people but it is definitely some progress as It means I don’t have to peel my eyes apart in the morning or wash off sticky ooze. I also managed to go out to a pub for some food, having resigned myself initially to want to hide in a hole and hibernate until I am healed, I am amazed that my skin on my face allowed me a day I could go out in public without feeling really self-conscious.
I managed to go to the cinema! got a little itchy but not to bad, unfortunately ended up at behind a bloke with the worst BO ever! and I thought ooze was bad. If you are reading this Mr.Smelly pits, marvel avengers would have been better without your personal eau de parfum.
Since starting to taper down and starting TSW my body seems to crave food and need masses of calories, my portion sizes have gone up and I think I put away more calories a day than Ian per day but still lose weight. I guess a lot of energy is needed to make new skin every day. Although TSW is awful it is amazing to see what the body does. I am still on turmeric with either almond milk or coconut milk and trying to eat well, I am still on aloe vera drink but switched to the cranberry and it tastes nice, a lot less like urine than the plain one. ( not that I am a wee drinker…. but if someone said it would cure my skin… hell, I would give it a go!)
There are no more shivers! Yey! the shivers have stopped which is great, but TSW has swung the other way now and I sweat like crazy, just like water really but it really sets off the itch and it tends to be my belly. It is weird as when you are on ts you don’t really sweat properly like a normal person, having been on ts all my life I could be really sweaty lady and not even know it! I am still bathing once a day normally. My belly can go from bright red, to normal coloured to red stripes all in one day. The red stripes are weird. It makes my belly look like a ham joint with the string on.
My worst areas are still my hands and ankles at the moment, ankles are the guilty -itchy spot as it feels good to itch but then you feel awful when you see the damage you have done. I still have my arms bandaged and cotton gloves on, and these are going to be the trouble spots I think. It is hands and arms that are holding me back from getting back to work. Scabby fingers crossed for more improvements.
The good news is my hair loss has reduced, the texture has changed from dead and wire-like, to soft and fluffy. The new growth around the front seems to stick up vertical and makes me look very eccentric or like I’m holding a van der Graff generator so I tend to wear hair bands.
Now for the update on my favourite part of the month…. the derm visit. So I have been downgraded from severely erythrodermic to severe eczema. Although I was assured ( again) that if I allowed myself to admitted to hospital and wrapped in super potent steroids it would all be gone in a week, HELL NOOOOOOOOOO. You know you are in TSW when you are more confident about the prognosis for your skin than your doctor is. My derm wants to refer me on, I would rather she saw the whole process from start to finish, I have hope than when my skin heals I might convince her that there is something to this TSW thing, and in doing so help other patients in the future. Slowly slowly catchy monkey, Oh, and I love being right even if it takes a few years.
Positives….. ooze stopped!…. face looks more normal yey!… hair stopped falling out.. more good days to see friends and my horse.
I am a bit behind updates and I am now in month 3 more positives to come hopefully