Impact vs. duration

I left something out in my 'first visit' post: the Energy Measure sheet.  This is something I need to fill in once I have at least a week's worth of activity diaries under my belt, and it was something I had difficulty understanding during my consultation.

It works like this: I have to look back through my activity diary, and categorise my activities as high, medium or low energy requirements.  The examples given were things like, "Blogging: 30 minutes", or "Mowing the lawn: 10 minutes".  And my scientific, logical brain was refusing to take in the time component as a valid part of the entry.  Surely, if "mowing the lawn" is high in energy requirement, it's high whether I do 10 minutes or 20 or 30?

I've forgotten, now, the words my consultant used to explain it to me.  One sentence made it all so clear: it's about limits.  If I do too much of any one activity, I cross a limit, head into meltdown, and crash.  Two lots of ten minutes can be lower in total requirements than one lot of 20 - as I discovered today.

Mopping the floors
Mopping is a Friday morning activity.  We have two enthusiastic dogs (and one of them has drool like raw egg white), so mopping has to be done fairly regularly.  Sweeping (a daily chore; see 'dogs', above) is normally an evening task.  Which I did not do yesterday (Thursday).

I felt pretty awesome this morning, so I set about sweeping, then mopping, the downstairs floors.  (Do not attempt to mop an unswept floor in a house of dogs.  It gets nasty).  It turns out that doing both tasks one after the other is too much.  Neither job is particularly onerous on its own, though mopping is definitely harder work than sweeping.  Both jobs together, though, exhausted me.  By the time I was done, I was weak, shaking, kinda confused - and the knock on effects have lasted all day.  At no point have I recovered the 'awesome' I felt this morning.

Lesson for the day: 1 + 1 != 2, at least in the world of energy requirements.

The first visit

Today I visited the Peterborough ME/CFS clinic for the first time.  I allowed plenty of time to get there, according to the GPS, but the final directions weren't too clear, and I had to try three or four industrial estates/shopping areas before I found the right place.

Right away, I felt like an impostor: "Would you prefer the stairs or the lift?" asked the counsellor, in a quiet, solicitous voice.  "Errm, the stairs will be fine," I stammered.  I have it easy.  After all, I had driven myself there.

I had at least an hour and a half of consultation, during which I cried at least half the time.  (This is par for the course for me and counsellors: I'm not generally a weepy person, but for some reason, the whole 'opening up' process just makes me leak at the eyes in an uncontrollable fashion.)  "What is upsetting you most, right now?" she asked.  I'm still not sure what the right answer was, but I said something about being scared that I was going to be told that there was nothing wrong with me; that I was lazy, and should just pull myself together, and get on with it.  (Certainly a true worry for me).  My fears were unfounded.

I could say a lot more, but - the outcome?  I have to keep an activity diary for the next few months.  I also have to record my energy levels three times a day, with an intention of keeping them stable both within a day, and from one day to the next.  My levels don't have to be high, just stable: this is about finding a baseline, and working to stick to it.

Also, I have to rest three times a day: 15 minutes in the morning and afternoon, and half an hour at lunchtime.  My definition of  'resting' has been radically updated: no television, audio books, internet, knitting...  I'm not sure I can find that much nothing to do in a day!  But I will try.  I have fought for this referral: I'm not about to disregard anything they tell me.

Oh, and I have to avoid 'cognitive activity' (reading, listening to audiobooks, watching television) for an hour before bed, too.  That's going to be *very* hard.