My best friend has had ME for over 20 years, with some spells of remission. She has been pretty much housebound for the last year, with her partner caring for her. I live in Wales and she lives in London. She feels too ill to take calls or visits so we message intermittently on social media. I am worried about her physical and mental health and also about the strain this must be putting on her partner. What support could I put them in touch with please? Thank you
I'm in your friend's situation. I've had ME/CFS for over 15 years, and have been housebound since 2 years ago, when I had a relapse. I, too, am too ill to talk on the phone or have visits from friends. I've been married for over 30 years, and yes, this does put a strain on my relationship. I'm very lucky, though, to have a partner who's stuck with me. The best thing my friends could do for me (and you could do for your friend) is respond when I reach out to them (in my case, by email). They don't always do this. So I end up feeling very socially isolated. Your friend is very lucky to have someone like you in her life.
Whilst I am not housebound, I do wish there was some suppport t help at times, there appears to be little or no support for cfs/ms people, which saddens me, as just a voice at the end of a phone could ne comforting, a little help with shopping, help with birthday/christmas presents, u nfortunately this wicked illness if neglected by the Government, so to the best of my knowledge there is no support group ecept for this forum which is great.
keep doing what you are and even if you get no reply for a while, keep sending you e-mails.
Thanks Betty - I will carry on.
Forums like this one have been the biggest help. Also, once I convinced my grown kids that ME/CFS was for real and that I had it, they became more understanding. That convincing took several years. Those of you who have someone living with them, someone who is supportive and in the same house, are fortunate. And I most heartily agree with Jackie that it is tremendously helpful when I get an email or forum reply. Just a chance to unload to someone out there who really and truly "gets it" is the best medicine.
Thanks Phillis, I will try and encourage my friend to join this forum