A couple people have mentioned the feelings of guilt and denial. I think it's really important, in order to get the pacing right, to really accept the reality of our illness. It is very complex indeed, and frustrating, and I get really angry sometimes that no matter how much I do take care and try to pace, I can never count on how I will feel on any given day. I really believe that acceptance is the first step to getting better, because it is the first step towards reducing stress and changing our lives to fit our new reality.
As far as pacing itself is concerned, I track resting time (which is watching TV because I can't lie still for all that long without getting anxious and all that - and I love Glee too), low level activity (knitting, reading, doing a puzzle) which is how I spend the majority of each day, and high level activity (everything else). I'm very visual, so I use lots of colour in my charts.
Where I did have to make a mental adjustment is that all the drs seem to want us to be on a fixed schedule. I can't do that. I really can't. Trying to stick to a fixed schedule just causes me stress. So I've decided that as long as I'm actually resting before and after activities, it doesn't matter so much if I rest between 9 and 10 on one day and between 10 and 11 the next, for example. Reducing stress levels goes a long way in energy conservation.
If anyone is interested, I've created an excel sheet for my pacing, based on Dr. Bested's. I find it so much easier to fill out on my computer, and that way it's with me at all times. Plus I'm saving the environment, right
As far as pacing itself is concerned, I track resting time (which is watching TV because I can't lie still for all that long without getting anxious and all that - and I love Glee too), low level activity (knitting, reading, doing a puzzle) which is how I spend the majority of each day, and high level activity (everything else). I'm very visual, so I use lots of colour in my charts.
Where I did have to make a mental adjustment is that all the drs seem to want us to be on a fixed schedule. I can't do that. I really can't. Trying to stick to a fixed schedule just causes me stress. So I've decided that as long as I'm actually resting before and after activities, it doesn't matter so much if I rest between 9 and 10 on one day and between 10 and 11 the next, for example. Reducing stress levels goes a long way in energy conservation.
If anyone is interested, I've created an excel sheet for my pacing, based on Dr. Bested's. I find it so much easier to fill out on my computer, and that way it's with me at all times. Plus I'm saving the environment, right
