@Wolfiness
I have only just found your post. and I want to say I think it is a brilliant piece of writing. It moved me to tears. I think it should be read by everyone, carer and doctor, as you express the horrific situation so beautifully. It should certainly be included in any doctors' pack on ME.
What can I say? My heart goes out to you! You are right, of course, there is nothing in place to help people with severe ME, and ordinary mortals cannot relate to such suffering because nothing can prepare them for the horrors that are ME. We need a care home specially dedicated to severe ME as no other illness requires the same level and type of care as the symptoms, I think I am right in saying, are unique to this seemingly bizarre disease.
I hope this writing, which must have cost you dear, goes far and wide.
I shall certainly print if off if that is okay with you.
Thank you for writing it.
Very impressed with your skills.