pacing

Although I know I have moments when I feel much better I also have days when I feel worse again. I think it’s probably due to the fact that thanks to Ivabradine I can stand more so I over-do things and end up feeling worse.
I’m really frustrated at myself today because I had a really busy weekend, but I’ve spoilt it today by having a bath this morning. I’m having to recover all day in bed which is a shame as it’s a lovely day outside. Oh well, tomorrow is another day!

Pacing is something I need to get used to, and to help me I have a few ‘cheats’ to get me through each day.

  • Commode. Or as I like to think of it, my en-suite. I use it overnight, and as my Granny said, in her day everyone used chamber pots and it’s not too different to that!
  • Shower chair. This piece of equipment has been life changing!! I’m so excited by the fact I can now have showers.
  • Wheelchair. I was apprehensive about using a wheelchair especially if people see me getting out to go to the loo, or if I’m well enough to walk for a bit. The thought was much worse than the reality though, as it means I can go out even on not so good days, and for longer periods of time. My family are going to be so fit by the time I’ve finished with it!
  • I’ve also got a seat in the kitchen, I don’t really have the energy at moment to cook but it’s useful waiting for the kettle to boil!
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how many spoons?

The spoon theory was devised by Christine Miserandino, as a way of helping her family and friends understand how she lives with chronic illness. She writes about it in her essay ‘The Spoon Theory’ on her website ‘butyoudontlooksick.com’. I would recommend a look as it’s a much better explanation than mine!

Basically, each activity that you might do in a day uses up ‘spoons’. Even little things like boiling a kettle or walking up stairs. You replenish these ‘spoons’ through rest. A ‘spoonie’, or someone with a chronic illness, has to conserve these spoons else they will run out, but someone without a chronic illness pretty much has an unlimited amount of spoons to get them through the day.

If a ‘spoonie’ runs out of spoons they could borrow some from the next day, but this will leave them with less ‘spoons’ to use in the future.

To illustrate, yesterday I was so pleased that I managed to sit up all day without having to nap, and so in the evening I decided to have a shower. However, that meant borrowing a couple of ‘spoons’ from today (climbing the stairs and having the shower took more ‘spoons’ than I had left) so I’m paying the price now. It feels like a backward step as I had been feeling much better yesterday, but it’s a little reminder that it’s going to take baby steps (which is a bit longer than I’d like it to take!).