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?
Another soft hug sent from Idaho!
Dear Carly – I want you know that little 'ol me here in Brisbane is thinking of you! I'm so sorry you're feeling pain right now. How does God decide who gets to carry these types of burdens and who doesn't? I think he knew you were going to be strong and that you would speak for many people. He knew that you were going to be full of love and compassion and have a huge heart. He knew that you were going to be special! I suffer with guttate psoriasis. It can disappear for long period and come back most unexpectedly. It can cover every inch of my body (rarely) or just certain areas (mostly my legs). In winter it can get bad and sore but it would be nothing in comparison to the scale of 'sore' that you feel. However, it does give me some insight. I'll be hoping and praying that after you shed this skin like the beautiful butterfly that you are, you will not only no longer have any 'soreness' but new and good things will come 🙂 xo
I didn't realise you'd been in hospital, Carly – different time zones mess with my SM timelines and I end up missing heaps of things. I'm sorry you've been unwell and I hope you bounce back quickly. The needle phobia sounds perfectly normal in someone who's had a lifetime of hospital stays…
P.S. Who says you can't wear sheepskin boots in public? 😉
Soft hugs
Ergh, you poor thing, that sounds horribly painful. Things will get better, it seems to have been a tough time for a few lately
Sending you hugs xo Hope you feel like your usual self again soon xo
I wish you didn't have to go through the big peel Carly, it sounds so painful and difficult. You are so beautiful and I love that you write it all. Thank you for sharing.
PS. I'm pretty sure ugg boots have reached a new social acceptability. Maybe you could bling them?
Oh Carly, this sounds so painful, my eyes were welling up thinking of what you are going through. You are so incredibly strong. Rachel xx
You are such a strong woman. Prayers are with you. And to me, you are beautiful.
Pain affects every facet of your life, and this sounds just horrible Carly. Learning to live with a condition is one battle, but when that condition throws in curve balls like this every two years it makes it even more difficult. I hope it will be over quickly, and that you feel much better afterwards.
Let the haters hate. Wear your uggies in public! 🙂
I love reading all your posts, but am sad reading about the 'big peel' time. As a nurse, and someone who has Personally spent a tremendous amount of time sick, I have a tiny inkling into some of the tricky aspects of managing chronic conditions. You survive the harsh bits fantastically, Carly. Thanks for keeping us in the loop, and staying honest. I find I hide when I'm sick, so you are a great role midel to me that I may not have to shut myself away when I'm unwell again. Thanks, on so many levels.
This is a very powerful post Carly – you are brave to positive in the midst of the pain and to see the good through it all.
Thank you Rach x
Thank you so much 🙂 your kind words are lovely.
Thanks Jane.
Evdn though I k ow my condition well, times like these I remember just how painful it can be
The consensus seems to be that I can wear sheepskin boots in public!!
And thank you! I did not blog about hospital but I did social media it! No probs about missing it / you're OS on a wonderful holiday 🙂
Haha thank you!
Ah, poor lady. Stress is a conductor of so many health issues isn't it? When I'm stressed my coeliac's flares up horribly. I say wear the uggies. I wear mine to the supermarket sometimes 🙂 I completely understand needle phobia too. I have to take valium when I have blood tests. I once threatened to punch a nurse if she didn't put the needle down!
Strength to you Carly, sounds so very painful and I'm sorry you have to go through this.. again. What a brave and strong soul you are x
Gosh Carly I can't even begin to imagine how painful 'the big peel' is. I hope you get back to your usual self quickly. Gentle hug. 🙂
PS wear the uggies!
Wow, I can only imagine how painful that must be. Awful. I hope it passes quickly for you, you have so much strength, I am in awe of you.
Barbe xo
Thank you
Thank you
Uggs are the new black Carly…big (soft) hugs and hope this means you can get Adam to pamper you a little more than usual xx
Cryperventilating. That is the BEST word and should be in the dictionary. And for sure, uggs in public. Over here in Canada "UGG" Australia has become the biggest thing since sliced bread and all the chickies wear them with skinny jeans or even shorty shorts. We have to let go the memory of the bogus 80's and the ugg/flannie/trackie combo. JUST DO IT. I was thinking of the butterfly analogy and then saw it a the end. Very apt for a gorgeous person 🙂