15 June 2011

The unpredictability of it all

I hate the unpredictability of my illness. I can feel great for a good period of time, and then wake up in so much pain. It's like the good spate doesn't count for anything. I can eat well, get lots of rest, keep warm and avoid allergies and scratches, and something happens with my body to quickly make it sore. Never a dull moment in my life.

Today was one of those days - I woke up suddenly sore. I did go out with Heidi for dinner last night and I was feeling tired and a little sore sitting on the chair - constantly moving to find a more comfortable position, but just put it down to my thumb. Fortunately I didn't get an infection in my cut thumb. The painkillers are making it feel better, and though it's still painful and I cannot write with it, it is healing quite well. I woke up with painful skin on my legs this morning - the skin felt like it was stripped of its protective top layer, and was so tender, throbbing and I felt very cold. I lasted just over two hours at work. I went home and cocooned myself in my warm bed. It's amazing what a sleep and in a warm bed can do - and my painkillers for my thumb have helped a little, too.

I am going to get a long night's rest now - the night seems to go longer with Tramadol (I swear this isn't a sponsored advertorial for my painkillers!) and hope to wake up fresh and less sore tomorrow. I have a job interview tomorrow so I better feel well :)

I hate that I can't control the pain. But I know with some positive thinking I'll be ok!

And someone said I looked pretty today, so that was a really nice thing to detract from the pain.

PS: if you want to help a family in need, head over to Nico's Toybox - an auction to raise money to buy special toys for a very special little boy. Karin from Sleep Deprived Mum wrote about the financial struggle to get a special toy for her little boy Nico, who was born 24 weeks early and has a severe disability. Toys are around $400, and the family has one on loan. Nico's Toybox has been set up by a group of Mums who want to raise money for Nico. With the help of community spirit and donations, Nico will be able to have some toys to keep and play with.


  1. Oh, thank you for posting this link. I had seen the post about Nico last week, but lost it when I came back to find it again.

    I"m sorry you're in so much pain today, but I'm glad the Tramadol helps. I find that it is useless against my kind of pain (though of course different drugs work on different ailments). I hope you get some good rest.

    Melissa xxxx

  2. Sorry to hear you're not feeling the best. Hopefully all that rest and staying warm will help you feel much better soon. :)

  3. Good luck tomorrow Carly. I hope you wake up feeling better than ever xxx

  4. SOrry to hear you're not feeling too great today Carly, hope you're soon feeling better. I can totally understand what you mean about how unpredictable your condition can be. My Ichthyosis is the same with the blistering. I was sore myself yesterday evening too. Was at the hospital all morning with Rebecca for her routine check for her hip (long story) and it was so hot in there I had to take Rebeca outside. The hospital waiting room is like a greenhouse and they had us waiting over 2 hours in the heat. I wasn't impressed to say the least especially as they know us there now and know about our Ichthyosis and that we can't regulate our body temperature. As a result, Rebecca and I came home sore and I ended up with blisters on my legs and feet. Feeling better today though. Take care Carly and best of luck for tomorrow. Melanie xx

  5. Sorry to hear you've been in pain and I hope the good night's rest helped get you through your interview today. How did that go?
    I have pain that seems to come from no-where, then I have to backtrack in my mind and figure out where and when I did whatever I did that might have pulled a muscle.

  6. I hope the interview went well Carly and that you feel better.

    It really is amazing what a good sleep can do.

  7. Hope you are feeling better and that the interview went well. Good luck.

  8. Man I know what you mean about the pain. (Not with skin, but for me it's cerbreal palsy that affects my muscles.) One moment, everything is great. The next...eh.

    Hope you feel better soon! Good luck on your job interview!

  9. Hope you feel better, lovely. That darn seat!! Hope the interview went well :)
    Heidi xo


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