yes i am but one little task like knocking out the door frame took three days spread over two weeks as i get soo exhausted, there really is nothing left in me for these sort of tasks after i do the essential tasks of daily living(exhisting). i have 'friends' who could help but choose to run the opposite direction whenever i ask for help! but no one willing to help.

i understand what you say about use it or loose it, i kind of accept the energy i have is all i will have whatever happens, i just want to be able to utilise it in a way to allow me to live rather than just exhist! the problem is that there are so many things i want to do but have not the energy left to do them which if my home environment was easier i would then have the energy left to chip away at the things i want to do. for example my physio stopped treating me because i was too exhausted by getting dressed and downstairs for her visit at 12am that i was unable to do more than a bit of light physio and over a year that decreased from 45 minutes to 15 and not through lack of trying or determination, i physically was drained!, if i did not have to roll off the bed, bum shuffle to the bathroom, haul myself up onto the loo, slide along the bath to reach my bath lift, only to do the same in reverse after my bath and bump downstairs all the time trying not to keel over like a baby i would have energy left to do targeted physio again or even get back to helping out at a group i helped set up to give m/h and others socially isolated a chance to socialise and have a decent cooked meal! heaven forbid i might even make it to the pub once in a while!!!! afterall life is for living not just exhisting. i do not want to merely exhist, i may as well end it now if that is my prognosis!!! i want to live, have a life, socialise, help others, and get back to working so i can support myself once again!!!
am i wrong to want this for myself????