BBC Radio 4 - ‘Prioritise energy-giving activities’: Why energy management is important and how to do it

https://www.bbc.co.uk/programmes/ar...ergy-management-is-important-and-how-to-do-it

more like how to 'normalise'/'minimise' ME symptoms even more.

 

Agreed it is a naughty minimisation jobbie, but worse they seem oblivious to that.

In theory yes the world needs to get their head around energy vs time, and of course I sit and watch those without health issues and their chosen 'busyness' and am astounded. It isn't our problem or anywhere near the same as our problem. In fact the guidelines almost did that to us, and services etc not having adjustments certainly make things harder than need be so its tosh they've solved things for us, its much easier in a privileged non-disabled position to say no to another party on the same evening than it is to be disabled and try and deal with a complicated medical process you need to cram in around your employment when walking to the carpark is too far to do more than once etc. ie they seem to miss the issue that disability increases work at the same time as our having less energy?

But I'm also super-cautious about those who think they know better and whether in theory it just ends up with paronising people telling you to take a break, when it isn't your point of needing it but instead what works for their own agenda - ie our needs get manipulated and used by those who are indeed stuck and addicted in their own narratives where they give little leeway to others.

I've also noticed that few people ever don't put themselves at the top of the pile, and just use reframing of the problem in order to manipulate in their head that they are the worst off (and yes I've heard too many say things about disabled people that they have 'less to do' than them as an excuse for whatever liberty or whatever they might take). I highly doubt too many people can be objective in this vs others.

What would be a revelation is if they took the expertise of those who dealt with ME/CFS for years and had no adjustments so you know achieved way more than their % disability/ability x what normal people do as an equation ... and you know gave them respect as being experts from whom those without it could learn

The fact these people believe that those with energy limiting conditions get to choose, rather than have to limit essential things for more essential ones or can't do any because someone came in and took energy unexpectedly misrepresents and minimises in itself - although I do know people want a nice clean summary for the point being made. I don't know what the word is for it but I do find it a bit offensive for people to speak on behalf of disabled others in such a way.

Sadly ME/CFS seems to be a condition where paternalism is ever-present, rather than people realising how valuable that voice is and putting their effort in to listen to understand, you just end up with different levels of 'compromise' on people who want to instead offer 'the benefit of their knowledge', despite not actually ever either having had direct actual experience nor having properly heard from said people. Being 'less' isn't the same as being not.

I don't get why it seems to be such a human thing from so many for them to just hear what you want to hear and assume they've got something to offer before doing the learning, rather than it always being an open-ended discussion even when you think you've learned something to check you've actually got the right end of the stick and not missed any nuance etc.

I have great respect for good occupational therapy, I want to groan when I hear someone who hasn't had the condition comparing their experience as if it is somehow the same - just as if you haven't experienced severe and not listened to those more severe you can't guess at it (because of the cumulative issue and all the other different ways the world treats you differently and makes things harder that you just don't believe until it happens to you)

and for someone to suggest 'everyone could have a bit of that' when we aren't allowed to do it at all because the guideliens were aimed at undermining us being able to do any of it, and some pretty vile ideology and ideas of snarks to aim at us - I can just see how 'in our name' somehow those who are perfectly healthy will end up putting us in an even worse situation with dumping tasks on us they should do or inconsiderate behaviour saying things like 'we all need x you know'. When the lesson really needs to be 'do you realise how privileged you are to have crammed in all of those chosen activities that made you so busy, the person who is struggling to make a phone call about some really essential thing that is about their health or finances or to stop bullying or something because there is no energy left after liberties taken by others and some of the essential things they need is wondering about your perspective'.

 

Wait til you hear about "hyperfatigue". Courtesy of Hattie Garlick writing yesterday in The Guardian —

 

I'd love to find a list of "energy-giving activities" that work for PWME. I haven't found any yet.

 

The "hyperfatigue" term will probably be bad for PWME. People will think they understand how "being tired all the time" feels, except that their experience is very different from ME. Worse, they can get a good night's sleep and feel rested and energetic again, while that simply doesn't work for us.

 

Yep - it's exploitative, blurring the lines between a disabling disease and the very common experience of tiredness/overwork and burnout. Saw an article some months ago that did the same but called it PEM - suggesting that PEM was an everyday kind of thing that everyone could have.

 

Even sleep doesn't help!

 

True, good sleep doesn't improve my ME symptoms. That's why I keep objecting to the term "unrefreshing sleep": that symptom (waking up feeling sluggish and groggy, the same as before sleeping) doesn't seem to have anything to do with sleep.

Regular exercise doesn't improve my energy levels either. I've gone through months or years of significant daily exercise routines, and that didn't make me feel any better than periods of little exercise. Didn't change my body weight either, so I'm not impressed by claims of exercise programs for losing weight.

 

My n=1 tale is sleep doesn't help, even a good sleep doesn't help, but a bad sleep, i.e., worse than typical, can make things decidedly worse.

 

I've had bad sleeps--short, broken, disturbing dreams, etc--and while they might add some similar symptoms (true fatigue digestive changes), I didn't get the feeling that my ME symptoms were affected. It's hard to be sure, since ME symptoms can change for unknown reasons, but my vague statistical memory evidence is that sleep quality doesn't affect my ME.