Terrified that the CFS / ME / Fibro (as yet officially unconfirmed but my doctors say it on sick notes so as much validity as going to get till get to end of waiting list for specialist clinic) will leave me 100% bed bound as opposed to 50% bed bound I am now - thanks for raising awareness 💜
I hope you are lucky & I hope that a cure is found for those with Severe Bedbound. I was mostly bed bound for a few months at the start but ruthless pacing eventually helped.
I know I should be ruthlessly pacing. I cannot get my head round the practicalities. Pretty sure will be forced to get head round it though at this rate!
The hardest part, for me, was accepting the severely limited options pacing requires when we’re mostly bed bound. Shower or gather dinner? Unstack dishwasher or clean toilet? We absolutely need to do both and, if we’re to rest enough to recover, we can’t do both. I was lucky enough to have some savings which I’ve used to pay a helper. After a few weeks of regular help home became more comfortable as I didn’t have to vacuum or carry the rubbish to the rubbish chute in my apartment building. A year later I can manage the rubbish run, but still not vacuuming.
Such a heart wrenching and insightful read Michelle, thank you.
Terrified that the CFS / ME / Fibro (as yet officially unconfirmed but my doctors say it on sick notes so as much validity as going to get till get to end of waiting list for specialist clinic) will leave me 100% bed bound as opposed to 50% bed bound I am now - thanks for raising awareness 💜
I hope you are lucky & I hope that a cure is found for those with Severe Bedbound. I was mostly bed bound for a few months at the start but ruthless pacing eventually helped.
I know I should be ruthlessly pacing. I cannot get my head round the practicalities. Pretty sure will be forced to get head round it though at this rate!
The hardest part, for me, was accepting the severely limited options pacing requires when we’re mostly bed bound. Shower or gather dinner? Unstack dishwasher or clean toilet? We absolutely need to do both and, if we’re to rest enough to recover, we can’t do both. I was lucky enough to have some savings which I’ve used to pay a helper. After a few weeks of regular help home became more comfortable as I didn’t have to vacuum or carry the rubbish to the rubbish chute in my apartment building. A year later I can manage the rubbish run, but still not vacuuming.