2 weeks closer to healing….

So I have just completed my second week of topical steroid withdrawal, I am also 6 weeks into protopic withdrawal.

Temperature control was really annoying this week, ,my bottom half of my body freezing and shivering to the point where hips and legs ache, the top half warm and sweaty. This leads to the battle between duvet on.. duvet off… Duvet on .. duvet off….AARRGGHHH sod it, I’m getting in the bath. I found I am most comfortable to have bottom half in warm bath and open the bathroom window to have top half in the cold breeze. I have 2 baths a day.

Skin seems to follow the same pattern as last week although slightly worse. Sleep is not as good as last week way too much itching, and could not get temperature right. Skin then oozes and goes sticky/slimy and all the dead skin in the bed sticks to it and then I can’t sleep because I feel like a melted toffee that’s been dropped in the sand. In the morning your bed is filled with what looks like parmesan cheese and there is tonnes of it. It is hard to believe a human could shed so much skin. I feel that I will definitely have an obese population of house dust mites in my house. Then that blasted ooze smell goes up your nose so just in case you forgot, you also smell like a zombie too.

how my face feels when I first wake up. I have more crusts though.

how my face feels when I first wake up. I have more crusts though.

Red itchy rashes have spread cover most of body now it is less obvious when skin is dry. I am not itchy all day it comes and goes but once I give in it turns into scratch fest, ALL OVER! I think the 1st 10 months of tapering have benefitted at least in some way as these days my skin is quite resistant to it, the odd small scratch mark although in general my skin feels thick and ‘plastic like’ with the sandy flaky layer on top.

Hands have got steadily worse with my red sleeves having spread up the backs of my fingers too. Palms have also gone a bit sheddy too but that cleared in a few days. There is no way I would get my engagement ring on now.

red sleeve spreading up fingers

red sleeve spreading up fingers

rashes on my stomach

rashes on my stomach

That lump next to my thumb? lymph node ... yep they are HUGE

That lump next to my thumb? lymph node … yep they are HUGE. Wrist a bit pink elephant-y too.

Face is still a bit crap. Very very dry and tight in the morning.  Had some ‘lovely’ chin splits. One split went right across and made eating more difficult as it was like have a ‘second mouth’ and anything acidic or salty was really sore. Face sheds throughout the day and returns to red towards the evening. Eyelids swell up in the evening too and I’m a bit puffy around the bridge of my nose. I tried putting teabags on one evening but then forgot the next day and freaked out as my eyelids had gone dark brown and I thought they were rotting off or something. I still use jojoba oil to make my face feel more comfortable and stop it feeling this tight

Knees are generally irritating due to the elephant skin and sore skin on the back of the knees, top of feet sheds every day. Chest is joining the red party and is very irritating. Chest skin is very sensitive not sure why this is, I think im progressing into full body red. Oozing spots still the ears, neck, belly button, thighs, back of knees and red sleeves.



A good day right after a bath

A good day right after a bath. Eyes puffy

Managed to go see my horse last week on a dry sheddy day as I wasn’t shivering or oozing which was nice. I seem to get one better day a week which I am more comfortable and able do things and get out the house. Emotionally I have been a bit more down towards the end of the week. I just miss being comfortable as TSW never lets you forget it is there. I miss feeling nice there would be no point with make up or anything like that as you just can’t polish a turd

Ian’s parents visited at the weekend and it was lovely to see them. They are both really supportive, I’m so lucky to have a great family. It was a really sunny day and shorts and t shirt weather but I still felt a bit cold with pjs dressing gown and blanket on. Felt a bit jealous of Ian’s mum in shorts (great skin and pair of legs). Had a Chinese takeaway instead of the usual meal out as I’m more comfortable at home.

TSW had some media attention in the papers  hooray!. The daily mail covered Amy Lou and her battle with severe eczema and TSW. I thought I would give the oat baths a try after seeing how she did them on her blog.

So you get some tights (make sure they are not toe-less or have holes) put a few hand fulls in the tights and tie a knot and you have an ‘oaty bag’ throw it in the bath and Bob’s your uncle.. oat bath. I found I could get about 6 baths or so out of the 2 legs of tights. Although you come out smelling a bit flapjacky, I did feel more moisturised and less red. The oaty bag also doubles as a great stress relief ball as you can squeeze it to get the ‘milky’ oat juice out. After your bath breakfast is sorted too as you can just slit the bag get your spoon out and dig in… thank you porridge! Ok, kidding about eating the porridge, that would be sick. Especially as it has been floating in the ‘skin soup’ that is my bath ewwwwwwww.

Positives this week….. I realised don’t have cellulite anymore I think because the skin has thickened up. Although I look like crap cellulite or the lack of is still something a girl notices! Each week the striae (stretch marks ) on my thighs due to TS fade a little more yey!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s