Monday 30 April 2012


Last week I felt fantastic. Well, my tummy was bad, but my joints had relatively little pain and I had lots of energy (again, relatively). As a consequence of being a bit more mobile around the flat I had a couple more faints than usual, but it was worth it.

I got a lot done - things like laundry that are impossible when my joints are bad, but also made sure I took time to rest, to avoid boom/busting. Doing things like crochet, or clearing out my email inbox which require sitting down but make me feel like I'm getting something done are perfect for days like that.

This morning I woke up 3 times during the night with joint pain and the nausea is almost overwhelming. I had plans, but I can't do any of them. In a more accessible flat, if I had my wheelchair up here then I could, but for now I'm on the sofa under a blanket with crochet, the cat and a sick bowl.

There was no warning for this. It wasn't caused by anything I didn't do. Just a night disturbed by pain.

It gets really frustrating - I do so much stuff to keep myself as healthy as possible - special diet, exercises, sleep routine, aids - but sometimes I get days like today that remind me that really these things give me an illusion of having more control than I have. That's a rubbish thing to be reminded of.

Sorry if this makes little sense, I'm tired. Something more cheerful next time, I promise


  1. makes perfect sense the only thing we can guarantee with a chronic illness is that it is unpredictable

    hope you feel a bit more lively tomorrow - im day 7 of bed world my highlight of the week was managing to cook once, and submit my tiny contribution to a piece of spartacus work.


  2. Fluctuation is a killer. You think you are being sensible pacing yourself and it still doesn't work. Sometimes I think "stuff it, I'm going flat out right now because I can". Then I regret it later. I hope you get some rest today and feel better later. I had a bad night the night before last and last night I caved and took the oramorph and I'm so glad I did, I actually slept PHEW! Going without sleep is the worst thing about being ill I think. Getting Amitriptylene to help me sleep saved my sanity.

  3. Amitriptyline is my very favourite drug =] Before it I would maybe get one night's sleep a week longer than 3 hours. Now I get a slightly interrupted 9 hours. I love it.

    I'm feeling a bit better today. I think being a bit scared of the endoscopy on Friday is clouding my whole week though.