I'm not sure in my case if that would provide any meaningful information though because the length of my PEM depends on how much I went outside of my energy limit. I don't get 'mild' delayed PEM, my delayed PEM is always horrific.
Yep I get sleep reversal and it screws up all timings for everything and takes 1-2weeks to cycle round , hence it being torture when idiots think triggering me again was the way to ‘set me right’ as punishment for ‘sleeping at the wrong time’. Which has led me here to utter disability none of them take responsibility for their part in causing
it’s more like giving someone a bout of raging glandular fever I’d mang weeks they’ve blown me for - not ‘symptoms rise a bit’ and let people choose gif themselves if they think it was just a few hours for you.
so one person blowing it for me would write off an entire weeks annual leave being restful and instead a struggle through sleep reversal and pain to not be triggered again whilst still look after myself to cycle round to normal ‘one day’ except you are now sleeping in the day making you more vulnerable to others, holidays were pointless because the travel blew my body being in any kind of rhythm fir longer than I ever stayed at the destination so it was just a desperate showing up and exposing myself in front of others by being trapped in accommodation with them etc agsin you are a sitting duck then to criticism and people thinking they’ll wake you up just for judgement sake. And that meaning instead of it ending that day that it’s triggered needing two or three more.
I also get issues like the lie flat thing - note that I like the wording on what causes it, however at my level it is just general‘hectic ness’ so movement around me and smells as well as being in an uncomfortable unsupported position for too long . We have to remember how laypersons use this against us, my life has been at the rough end only really coming across this type. I’m at the bottom end of severe and most I know even decades in can’t manage to actually give any leeway or Change their behaviour to as if I were mild. People are selfish in general and look to split hairs and find new ways to put themselves first and excuse it so pretend they aren’t grabby takers.
I’m afraid I find the ‘simplifying’ is slso minimising - we need to remember the cage issue and quantifying just how the sun total of these actually debilitated us otherwise we get people who talk about it just being a big of pain or dizziness not realising what they triggered is at best two weeks of throwing out even us scraping out getting to that essential gp appointment or completing an impossible but essential phone call. Normally just because the person having done it ‘was bored’ or ‘couldn’t be bothered’ as a sum total selfishness fir the taking from me by doing something that put me right over or disturbed my sleep whilst I was in PEM as if it was ‘a little thing’
it can be - as it was fir me for years and took me from moderate to nearly very severe - that people around you give no toss and you are continually disturbed whilst you are in PEM so are never ‘out’ of it. I think that’s the norm for most based on I can’t count on my hand the times I wasn’t in PEM not the other way around. And all I pray for is solid enough time when in PEM to sleep it off and get my feet under me - I think my body is blown beyond smithereens by now though too much has been done. And I just hide hoping to survive now knowing my body won’t even go back to the operating in PEM with the odd ‘pretend I’m normal time’ I used to have.
It just went for too many years basically being left being abused by selfish people all around until it nearly killed me. No one moved me even when I begged. No one stopped because’they have to live their lives’ (the post covid selfish peoples rebellion where they thought they did something special and now can grab things and be inconsiderate in ways that weren’t acceptable pre-covid because they pretend they were locked down ‘fir disabled people’ which they weren’t, they did it for themselves, we were already locked away)= can’t help taking liberties they would take with a well person who can stop them or be believed when they complain but they get away with when it’s an ill person they are visibly destroying because people are awful and don’t step in (and will just be happy it’s not them being picked on and getting all the noise snd crap).
Everyone who doesn’t step in then lies afterwards to take no responsibility for the harm they let happen to you and deterioration that means more needs - no one picks up the pieces for the consequences you then wear. So the worse you are the more hit about from things which aren’t small to you, because you have so little in your life, but can be belittled by others as ‘just this or that’ . And the less they will acknowledge it these days. Apparently ti these people whilst said debilitated I ‘don’t look ill’ which means deserve to be ignored in what I say. But I’ve realised those who ‘can’t see ill’ is a personality type only by meeting later in life the odd not selfish person . Most people aren’t looking at all anyway when they trot that one out . They have to be told it’s serious when it’s serious because they don’t come with a module of kindness or leeway for a few symptoms. And they don’t take responsibility for his if you antagonise someone when they have them then they are multiplying how bad and how long it lasts for.
I’ll be honest I worry we are ducking the ‘can’t’ in this write up so far that is so important - the genuine limitations that no one believes and is bad enough I imagine if you are mild , but terrifying dystopia to live in when more severe.
yes we are ill, but just saying that won’t stop other people from being inconsiderate and expecting us to just live with it not realising it is like we got this ill from having flu 4000times where we didn’t rest it off but weee made to do marathons whilst working instead. And the consequences of tgat on the body. The debility is a vicious downwards cycle because if we don’t get allowed to rest off one lot of PEM it just multiplies.
And we aren’t talking about how limited are lives can be in the first place. Limited to us, not what we ‘put out to others’ because that work productivity and turning up fir what turned out to not be that important vs my future now ‘events’ others couldn’t compromise on , but in joy, peace feeling freedom and safety ever. Huge things. Limitation levels most can’t imagine because we live on a different scale and framework vs other illnesses ‘having little adjustments’ to normal life. We had to rearrange completely how a week works to fit in obligations that neither fit our energy nor will people compromise. So you sacrifice nights of sleep and % of future heakth for them and wear that additional unwell ness for a very long time for having done it, giving up maybe 8weeks if doing anything ‘fir yourself’ whilst you recover.
I don’t have a routine because what people can if needed do in a day if pushed to it now is a years planned careful exertions for me. And that takes discipline and utter sacrifice every day around it to pull that off. I don’t get to also have days with routines because that’s what I sacrifice and compromise to ever get to a medical or dentist appointment and to do essential calls on which my survival depends. I save energy and take weeks of hit and recovery from those. I don’t get any normal weeks where I get routine and something just knocks me about a bit.
