Losing my young adult daughter to M.E

feir

I heard of ME 20 years ago but didn't know it was a neurological condition just that it made people tired and that a lot of people didn't believe it existed. Definitely didn't know it could be diagnosed as terminal either.

Hope you all get what you want/need.

Glad2bhere

thank you for sharing your experience, and your openness about the way your family approached your daughter's diagnosis on her terms, characterised by focusing on what she wanted and being open. I know that when both my parents passed away recently, it was having had that opportunity to share important conversations that gave me the greatest comfort, and helped me make decisions on their behalf with their care teams that would not otherwise have been possible. It isn't easy acknowledging that someone is leaving you, but making space for conversations as and when they wish to talk about things that matter to them, is so important. I wish you peace.

clarenorton68

Thank you so much, yes I think talking about things like that though daunting helps everyone xxx

Glad2bhere

hope you are still finding it helps to talk things over when you need to.all best, 

clarenorton68

Thank you so much xxx

Bertiedog

My daughter has had ME for 32 years.
From being bedbound and having to be fed she has managed to overcome lots of almost impossibilities.
She now has a 14 year son, who has given her a reason to carry on in,very difficult circumstances.
I am very proud of her and admire her tremendously.
There are still a lot of people including Doctors who do not b err lived in it

GailR

I lost my only daughter, she was 15 in 2001. She had a genetic and rare illness Fanconi Anaemia. 
I missed her every day. Missed will always 
I met on-line bereaved parents - and have many friends for16 years 
Talk to parents who lost a child ...... it helps
Will to answer if anyone has now lost a child and if I can help xx 
I have aphasia now after a stroke    

teighan

So sorry for anyone losing someone close to them with M.E
I was diognosed with cfs/M.E 6 years ago,it it a daily struggle. 
I also have fibromyaliga, I have only been treated for my fibromyaliga via pain meds ect.. but not one medical profession has treated me for M.E .I should be having some sort of treatment tho shouldn't I?