That does sum it up nicely.Every day is different and no ideology can handle this so I do what people have traditionally done for millenia, I cope....which doesn't mean that I would turn down a cure.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
That does sum it up nicely.Every day is different and no ideology can handle this so I do what people have traditionally done for millenia, I cope....which doesn't mean that I would turn down a cure.
Thanks folks. I s'pose I am asking because I am finding it harder and harder to function. I wedge myself upright sometimes in the corner of the sofa, I've got a more supportive wheelchair - but am increasingly too ill to use it.
In some ways I think the wedged approach is better than bed where I can't get the same physical support. (I wonder if that's why so many people get accused of being couch potatoes)
I just worry I'm heading for bedbound - or even sofa bound and it scares me. rosie thank you for your response; I have to remind myself of that - it's not me being lazy it really is that I can't do it. (No one's calling me lazy other than me).
meandthecat your description is exactly how it's been for me. It's walking a narrow tight rope. - or crawling along one!
"Deconditioning" is not that bad - I'm sure we are all pretty unfit.
Once you're a lot better, that can be fixed - slowly.
If you feel up it, you could try to find some stretching "exercises" you can do lying down, there are some gentle yoga positions that might help a bit.
At least with yoga you don't need to do aerobic stuff.
I can't tolerate any additional exertion when laying down, nor can many other ME patients. Hence it doesn't just seem to be an OI issue.but many of us are very fit when we get ill which in itself debunks the deconditioning IMO
yes yoga and pilates recumbent poses and breathing are all good I find too.
... when he started and with each increase he did feel it BUT at no time did the exercise make him feel really crap or give him viral symptoms or sinus infection the next day (or week) and he didn't get really tired or exhausted for long periods. He had deep refreshing sleep and woke feeling well. It was progress each week.
I'd be interested to know how deconditioned others feel.
It's strange, because I don't really feel deconditioned and yet I should be with hours upon hours of time that I spend in bed and for the last 12 years. I am probably out of sync with conversation here, dreadful head problems today.
- then they say - maybe you were doing too much!!!! that is not a logical argument !
I did vigourous exercise for 3 years - 5-6 days a weak nad looked very fit but was still ill all the time and still am - it did not help...I would like to see the data that shows deconditioning causes it - I was superfit and doing karate and aerobics daily and cycling and running when I got ill - then they say - maybe you were doing too much!!!! that is not a logical argument!A