Sunday, however, was another matter and it rained all day. My skin went downhill very quickly (like the weather) and was just as wet. The whole of the right side of my face was wet to the touch.
I knew a flare was brewing and I was right. I had a restless night, presumably because of wonky cortisol levels, and terrible weeping skin behind my ears and on my face. It felt like I had acid instead of blood, as it burned a path through my blood vessels. My skin dried to a fine, powdery crust this morning.
So I woke up and look freaky and what is worse, I have to see the asthma nurse today for my yearly check-up and I've a feeling she's not going to be happy when she sees my wrecked-up skin. It's hard trying to explain the virtues of the TSW process when you look this bad over three years in.
Moral of the tale: Don't get dependent on the steroid creams to begin with, because getting off them is a LONG process. If you need regular steroids to make your skin look "normal", then chances are you are already hooked and you have my condolences, the recovery process is hell.
12 comments:
Sorry Louise, the winter months are passing by and will be over. You'll also have less trouble next winter as tsw is burning away from your system. Hope this flare is short lived and make plenty hay when the sun is shining again xx
Don't worry. As soon as that sun makes an appearance again, I'll be dancing in the street!
Hope you are doing ok and enjoyed the conference.
It It just your neck and face? Or whole body? So sorry! I really hope it gets better quick!
Mainly neck and face, but sadly some previously healed areas are also giving me trouble, like the palms of my hands and inside of my arms and behind my knees.
Sun's back out today (weds) so I've been outside, drinking it in.
The weepy neck is the worst. I thought I was done with the Ooze ages ago. For it to return has been a huge shock.
Hope you are ok too and not suffering too much. No idea why this takes so long.
My daughter is in month 15, were in the uk too and the wet weather always seems to make her face flare. Her body is fine though.
Poor you, Louise. What a bloody ordeal it is, and no mistake! but spring is almost here... did you use betnovate on your face? I think that stuff has a lot to answer for. take care. can't last forever, though that's not much consolation when your face is sticking to your pillow and your neck's in tatters. I know just how you feel. so many of us 'veterans' still struggling away. who'd have thought it would take so long? xx
Thanks Elaine. And yes, I did use Betnovate on my face. Daily. For at least a year (groan).
Sadly, I had a rough night again last night, with cortisol spikes waking me up at 1:30 a.m. The oozing has now migrated to under the bra line so I had to swap my bra in the middle of the night because it was soaking wet. Ugh.
Just ordered a massive bag of Epsom salts in the hope that a long soak will help me.
I'm sad.
Hey Jen. Don't be.
Don't let the TSW win!
I'm gonna beat this thing and post some encouraging photos as soon as I can.
COME ON SUN!!
There was a TEENY bit of sunshine for about 5 minutes this morning, but it's gone cloudy again now.
Oh, the glorious UK.
Hope you're doing better and the sun is shining more.
Have a happy day!
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