05 July 2014


While I maintain that I don't suffer, there are times when the pain of my Ichthyosis is unbearable. The pain seems to drill down the depth of my skin - from the epidermis on my chubby calves down to the very core of my hyperdermis. It's burning and throbbing and hurts to touch.

Right now my legs are pounding and weepy, and have bloody spots on them from where the sheets moved against them in the night. This is hospital grade sore, though I'm hanging out for a miracle - I hope I don't have to go to hospital. Dermatologists aren't at hospital on the weekend, so I will need to wait til Monday anyway. I hope a few salt baths and the warmth of a quilt heals me.

I haven't really felt right in my skin since I returned from overseas almost two months ago. There's been some throbbing, my stocking sticking to a weepy part of my leg, tearing off the fragile skin and making me wince. It's been scraping under my boots and waking up tired. I am onto my third dose of antibiotics and my patience is wearing thin. I put it down to some stress and worry - mental health definitely plays a big part in physical health.

I was talking to my day job manager about self accountability and the perception of being sick. This is something I struggle with a lot. If I was well enough to go to a protest on Monday, how can I be too sore to do a full day at work? I don't think I will ever stop worrying about that, no matter how understanding those around me are. Sometimes I wish that I had more of a lasseiz faire attitude and didn't put so much pressure on myself to do everything well.

Today I wanted to do some writing and planning. All I've done is doze while listening to podcasts. Tomorrow I see Bob Evans at the National Gallery of Victoria. That's about all I can manage. There are times when productivity equals resting.

Skin hey? It's complex.

How's your weekend?



  1. Oh, sweetheart … sometimes it's just all too much and we need to take some time out for ourselves. It's hard - trust me, I know. Every 'rest' day I have, I feel guilty because of my donor and the high expectations I put on myself. It sounds stupid, but that's the way my brain is wired. I finally met Cam today and we had a lovely time. We talked about you - a lot! Without sounding all 'inspiration porn-y', you really are the bravest lady I've never met :) I hope you're don't have to go to hospital, but I know you will know when you have to. I hope you get enough rest that it sees you through to see Bob Evans tomorrow xoxo

    1. Aww Carly. Thank you so much. That comment made me cry.
      I'm so glad you and Cam finally met.
      Thank you so much xx

    2. I make no apologies for making you cry! SO stoked that you got out and about today and saw Bob. I hope you're resting up big time and that you're not in too much pain xoxo

  2. I hope you'll get better soon or get som help on monday. Know the feeling sooo well... I've never been to a doctor, they won't know what to to with me anyway. At least it is so here in my town. Rest and antibiotics is usually my own treatment. Warm (and gentle) hugs <3 /Maria, Sweden

    1. Thanks Maria! Sorry you know what it's like, and sorry doctors don't know what to do with you! Other than a dermatologist, it's a bit like that for me!
      Appreciate your wishes.

  3. Look after yourself, Carly.

    I hope you get well as soon as you can.

    SSG xxx

    1. Thank you SSG. It always feels like the worst pain ever but then when it passes, I can't remember what it was like. Weird.

  4. I am sorry that you are weary and feeling poorly. Take time to take care of yourself. You are allowed "suffering days" also.

  5. Big gentle hugs carly. You do a great job xx

  6. Hi Carly,

    (I'm a first time commenter!)

    I'm so sorry you're in such pain. Antibiotics alone are enough to make you feel tired, then factoring in stress and the cold it's no wonder you're not feeling the best. I have severe eczema and while I know it's not the same as your condition I understand what it's like to get to a point where it feels like self management isn't going to be enough and like it's crossing over to where intervention is required.

    Rest up as much as you can and be kind to yourself. I hope you're feeling much better soon. I'm thinking of you.

    Liz xx


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