I wish i could help but unfortunately although i live in the uk my diagnosis is not recognised as the long term substantially disabling one it is. This means i have to save every penny i get so eventually i will be able to buy the adaptions i need to get me upstairs to my bedroom , the only toilet and bath/wash room in my home! until such times i am spending my nights either sleeping on my livingroom floor in a sleeping bag or spending over an hour hauling myself upstairs backwards on my bum to sleep on a matress on my bedroom floor because i am unable to pull myself up onto my bed!
I do however hear your plight and send you good wishes for a better future xx