A weird observation

I didn't post on Monday after the check up as there was nothing noteworthy about it (which I suppose is noteworthy in itself). But this week I've noticed something strange. Generally I'm now at a pretty consistently low ebb in terms of energy, hunger and 'chemo brain'. But I've noticed not only that all of these fluctuate more widely than usual, but that they are more unpredictable.

The two main problem areas are energy and weight.

Having lived with ME/CFS for some years, I'm used to the attitude that it's our fault: the offical NICE guidelines until recently (where GPs don't just simply shrug their shoulders) is that the solution is a combination of needing therapy as we're clearly nuts (there was a study recently which said that the problem with ME/CFS is that we push ourselves too hard). The other solution is Graded Exercise Therapy, which means that you walk for 10 minutes one day, then 12 minutes the next day.

And the advice on weight is that we need to count our calories and balance our incoming and outgoing. So for example the NHS advice a few months ago to deal with diabetes is to have 800 calories a day for 3 months, then all our problems will be over. And that advice has clearly taken  hold: when the subject is discussed in the Times comments pages, the bulk of them are that fatties should get up off the sofa and stop eaing pizzas. Or people who have never been overweight boast about their amazing self control, or that they eat not too much, mainly plants, as if maintaining your ideal weight is the same as recovering from becoming obese.

Both areas presume that we are consistent all the time.

Bear with me.

What I have noticed in the past few weeks is that my energy, hunger and brain fog levels vary widely, and are unpredictable. So on some days I can hardly face eating (which is.what I was promised woutd happen: they gave me a booklet on how to increase my weight when the chemo made it fall) and on some days I am ravenous. This week I've been able to move a lot of stuff around in the attic, and wash and rehang some curtains, both of which would have been unthinkable a few weeks ago. And sometimes I give bad computer advice as I presume I am thinking clearly, which I am not.

So the moral is, don't plan, just presume that you will be able to function sometimes but with no way of planning. Cats and leopards don't go on diets, they just eat when their bodies demand it. We don't decide how many breaths we should take. It's only because of the diet industry and bad NHS advice that many of us have damaged our metabolism in the first place.

Ever onwards.