Gluten and baselines

I can eat delicious gluten! YES! Since coeliac disease can present with symptoms like CFS/ME, it’s an obvious alternate to rule out, so I dropped it from my diet for a couple of months. I didn’t improve at all whilst off it, and eating my mother-in-law’s delicious toast has not made me suddenly worse, so we can probably safely rule that one out. BTW: if you’ve never tried to live gluten-free, it’s pretty easy except for the complication that everything edible is made exclusively of wheat.

That might have been a slight overstatement, but you get the picture.

Today also marks 2 weeks of having kept my pre-pacing diary, in order to establish baselines. In pacing, the baseline is what you can live with without making your symptoms worse. That means the minimums you have to do, in terms of rest and sleep, and the maximums you are allowed to do in terms of activity. This means I have a rough set of baselines to start with, which I need to keep an eye on incase they aren’t quite right.

Now I have a set of baselines to work with, I just… get on with it, I guess. There’s various ways you can manage living with this, which seem to fall into a spectrum from scheduling everything to monitoring everything. On the one extreme, you plan everything out to make sure you never go over a limit (and if emergencies arive you swap out something similar); on the other, you watch everything you do and stop before you ever get to a limit. I think I will attempt for more monitoring than scheduling, although I’m going to need to schedule some things in because my memory is like a basketball hoop. With either of these, the idea is to slowly push against certain limits in order to expand them a bit. Slowly. Sometimes that’s just not going to be possible, because your body resists it all; sometimes it will work. We will see!

Another suggested part of pacing is the idea of mixing up rest and acitivity. So instead of resting for a long time, then doing something until you need to rest, you say something like `I will lie down for 15 minutes every hour’. I might try that out as well, although it will need some pre-planning I think.


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