Living with someone who was finally recovered from ME just as I met her I thought I knew what pacing was, until I got ME and had to try to put the theory into practice. At the ME clinic the physio said, 'Hey you know what you're doing, in fact you probably know more than me!' Yep, I did know more than her, but more than very little is still not a lot!
I don't know about you but I tried listening to my body, trying to look for patterns, trying to tell when was the moment when it was time to stop. My partner said she'd learned that when she was thinking 'Hey it's time to stop' she'd probably already gone over the edge. I would be up and as I felt the Tsunami of ME building I would try to cram that last thing in, finish that small task (talking to my daughter for example) try batting off that feeling of impending doom that I wasn't going to make it to bed in time. It was a nightmare and of course involves lots of thinking about the body, tuning into my symptoms, analysing my health. NOT USEFUL!
Then I read Lorimer Moseley's book 'Painful Yarns' which gave me a fanastic insight into the brains methodology for communicating pain and helped me understand why my aunt's physio in South Africa had suggested trying a rigid schedule. A rigid schedule is like a rib cage, it holds you in place, means you can plan your day and don't have to spend time thinking about when you should be resting, should it be now, in 10 minutes or two hours ago!
So right now my schedule looks something like this:
8am-8.30am up for breakfast.
8.30am-9.30am quiet bed rest.
9.30am - 11am Up
11am- 12.30 quiet bed rest
12.30 - 2pm Up
2pm- 4pm quiet bed rest
4-6pm Up for dinner etc.
6-7pm quiet bed rest.
7pm -10pm put daughter to bed and be UP, but on sofa watching some TV if I'm lucky.
This schedule does move some if I need it to, but essentially I aim to have 12 half hour slots of rest paced throughout the day.
I found out this was what I needed as my baseline by making a chart for myself where I divided the day into half hour slots and spent a week or so trying out different patterns, times up and finally settled on no more than 2 hrs up at one time and no more than 2hrs resting.
Now the key to my schedule is that I get up and lie down as laid out above whether I feel good or bad. To begin with I was often getting up when I felt sick as a dog, getting through the 1.5hrs longing for bed, but staying up until the allotted time to go back. The same for being in bed, if I'm feeling okay I go to bed regardless. This is my bottom line, this is where I am building from, and the thing is it goes against all known ME wisdom to be up even though your feel crap. ME wisdom says you will crash. Similarly getting out of bed when feeling crap: YOU WILL CRASH! NO, this isn't true. Often I have noticed that past a certain time in bed feeling rubbish it doesn't get any better, in fact it starts to feel worse. I've also many many times since implementing this regime observed how staying UP despite feeling rubbish (but only for the allotted time) does not lead to a crash.
After the first few weeks of doing this I noticed that I started to have less UP and feeling really awful, I began to feel I could do things when I was UP and not just hang around downstairs tolerating my family wondering why time goes so slow when you feel so ill!
I've been using this methodology for the last 5 months and I can honestly say that apart from a couple of dips, one caused by a chest infection, my life has become more stable, my health is more stable. I don't feel that how I will feel is as unpredictable as it once was. Sure I can dip for no apparent reason - hey I've got ME - but on the whole from one week to the next how I feel is far more stable. In my UP times I am far more productive and my rest times I don't spend as much time feeling RUBBISH and wishing I was dead.
The thing now is to build on it. That's what the hydrotherapy is all about....
Hey is there anybody out there? Am I blogging into space? Ask me a question - go on....