I am never well when I get out of hospital. Well for my standards anyway. It’s a place for treatment and discussions with doctors and educating nurses about a condition they’ve never heard of. But it’s not a place for rest. Sleep is interrupted by peeling my legs off a plastic mattress after the sheet gets crumpled (I’m never taking a fitted sheet for granted again!) and the nurse wakes me up in the middle of the night to take my blood pressure. Hospital this time around showed me just how needle phobic I am – thrashing and shaking and cryperventilating over a tiny butterfly needle inserted in my wrist to insert the cannula. Ironically, the site that was treating my infection hurt more than my infected legs because of the cannula. I couldn’t even look at the cannula site in the shower, I needed to keep it bandaged. I don’t know how this phobia got so bad.
Right now my body’s undergoing the big peel. It happens every two years or so, fortunately. Big pieces of skin fall off – first my legs then my torso and my hands and my feet peel last. They’re the worst parts – my palms and soles are left without a protective layer of skin which makes it hard to touch things and walk. Already my shoes hurt my feet and I wish it was ok to wear sheepskin boots in public. And I spend five minutes gently taking my stockings off before a shower – they stick to my legs, pulling at the weepy bits, taking skin with them. So much of me is left behind.
I don’t know why it happens – I guess it’s about my body recovering from some sort of shock or trauma or stress or even busyness. So a big action packed international trip, hospital, grieving over a job lost, worrying about other things – that could be mild shock and massive busyness. Luck hasn’t been on my side lately. But then again, it has, and I’ve got so many amazing things coming up.
It feels like my skin is too small for my body. There are little bloody cracks on my feet where they’re trying to burst through the scaly layer of skin. My legs are The worst – throbbing and thin skinned, bleeding when I scratch them. I get bumped by people’s grocery bags whew I travel on the train and I am too embarrassed to ask people to be careful with their bags. What kind of person bleeds because they’ve been bumped by someone’s dinner ingredients in a plastic bag? I feel cold but my skin is too hot for my boy to snuggle me. It’s quite difficult. I’m just sick of being sore.
Peeling every day makes me look youthful. Who needs microdermabrasion when you’ve got Ichthyosis? But the big peel is tiring and raw. I’ve asked for a few concessions this week. I’ve been picked up from work because it’s been too cold and I’m too sore to walk to the station. And I had to forgo standing at Lorde because I could not last two hours.
I know that one day soon I will feel like my usual self. But it’s hard to remember what no pain is like when there’s so much pain. I try to see the positives in everything. Maybe my skin is shedding for new life. Is this what being a butterfly is like?