Fed up

Writing this from my desk because I'm miserable and distracted at work. So I already mentioned that I'm flaring but instead of improving with daily DSS and ACV baths it just seems to be getting worse :( it's nowhere near as bad as it was before I went into hospital but I'm just so angry and frustrated that my skin should still be this bad when I'm still on prednisalone and ciclosporin :( 

Even my face/cheeks are rashy and swollen which is something new. No amount of antihistamines will make the swelling go down so I look like I've been in a fight currently. I'm just feeling down and fed up because I haven't even started my journey properly this time around yet and I'm already sick and tired of feeling uncomfortable in my own skin 

Moan moan moan

Flaring

Little update about where I'm at right now

So I finished my second course of antibiotics and, as I predicted, I'm flaring again, but nowhere near as bad as in week 1 of withdrawal as I'm still on 20mg of pred a day (still reducing by 5mg every 5 days)
A few people have told me that flaring is normal while reducing pred and also that antibiotics contain anti inflammatory properties so it's normal to flare when coming off those too, which is all good to hear, I was really worried about my flare happening while I'm still on oral steroids, made me scared of what it will be like when I stop completely. And also the fact that I'm on ciclo, i thought this would prevent flares from happening, but then I suppose it is nowhere near how it could be so I'm grateful for that.

As for myself I'm still doing pretty well, nowhere near emotionally/physically drained as I was when I first quit everything, so the meds must be helping. If my skin stays this way throughout the whole of my withdrawal I'll be pretty happy (i know this is unlikely!), it's far from perfect but it's totally bearable.

I bought some dead sea bath salts last week as well as some apple cider vinegar which lots fellow tswers have been raving about and when I took a bath when I first flared I noticed I was a LOT less red and itchy afterwards, just more dry which again, I can cope with.

So overall I'd say I'm about a 7/10 today, which is a definite improvement from the -1 i felt when I first withdrew.

I'd be interested to know people's stories regarding antibiotics/oral steroids/immunosuppresants and their flare patterns, maybe I can work out how long I can expect to flare, although I know everybody is different.

Hope everyone is doing well and staying positive, I know I say it all the time but I'm really grateful for all the love and support everyone provides me and other sufferers with!

All the love in the world
S x

Day 5 (Is that all?!)

Hi Guys,
Sorry about the lack of updates but I've been really suffering these past 4 days :(
My skin is like leather, or scales, or sandpaper, I'm not sure really, something really really red and really really flaky and really really dry and really really ANNOYING. To make things so much worse I've just started a new job and I am sitting in the training room itching like I've got a load of fire ants shoved in my clothes, constantly wriggling and itching and scratching. Luckily I've made friends with a lovely group of girls who are really sympathetic, even if they don't totally understand my TSW (it's pretty hard to explain isn't it!)
Anyway I'm just plodding along really, nothing new to report apart from the fact that I now wake up pretty much soaking wet every morning since I FEEL as though I'm freezing but in actuality I'm sweating and oozing all over the place. Great. I've got to be the most attractive person on this planet.

I've joined some forums and things so that I can get a bit of support. It would be lovely to be able to skype or speak over the phone with someone who is going through TSW...if anyone fancies this please get in touch. I've been updating my mum daily and crying down the phone to her (ha) but she doesn't really understand and she worries, with not living in the same city as me. So I'm on the hunt for a (preferably UK based) fellow TSW friend. It could be you....!

I'm going to post some photos from Day 2 in a second, I meant to do it on the actual day but really I've just not been feeling up to it. I've got a TINY bit of positive energy in me today so that's how I've found the time to write this post.

S x