Loneliness
I've had ms since April 1989. I'm 55yrs. old & was born walking. I went through all the early stages of Ms to now I'm bedridden & can freely use only my left arm despite being an original right handed person. It's just 3 people in my home including me, so my husband & 32yr. old daughter assist me. I hate to ask for help to survive but my family understand. When they're finish dressing or cooking for me they leave - to finish whatever activity in their lives. I'm left Alone to find something to do usually watching TV. Public gathering has proven to be deadly thanks to COVID-19. Otherwise I would go to my monthly 2nd., Saturday 2hour ms support group meeting. My daughter & I attended this since she was 7yrs. old. She loved the cookies & juice afterwards. Our meetings were the best for making friends, sharing symptoms, phone numbers, pot luck dinner parties, summer cook-out pool parties at a member's
backyard & December's Xmas dinner parties with singing & exchanging gifts plus traveling or boating in or out the country. Covid has made loniness with Ms extra hard to handle.
, I can feel your loneliness in your post and my heart goes out to you. Covid has taken so much from us, hasn't it? I realize that the pandemic isn't over, but does your group have any plans to start meeting in person some time in the future? Can they hold Zoom meetings. After two years of sitting through many Zoom meetings myself, I know that it's not the answer, but it's *something*, you know? Have you been able to talk to any of these MS support group members since your meetings came to an end? I bet many of them are in the same boat as you.
One of our contributors spends most of her days in a wheelchair and she often writes about how she fills her time and keeps loneliness at bay. You can read a bit about her here (there's a link to her articles at the bottom of the piece) -- https://multiplesclerosis.net/community/experts/dianne-scott.
Please know you are not alone. I know online communities can't fully replace in person support, but please know we're here for you!
Best, Erin, MultipleSclerosis.net Team Member.
Hi
! I'm so sorry to hear about how you've been feeling. I understand all too well (one of my first articles here was about the loneliness I experience with the disease: https://multiplesclerosis.net/living-with-ms/the-loneliness-of-ms). I still struggle with it at times and I agree, the pandemic certainly has made it even more difficult. I find that communicating online can be helpful but doesn't fully replace seeing other humans in person. That said, when I am home alone, I try my best to hop on forums like this or into Facebook groups for the interests that I have. I don't really have any real remedies for loneliness but I wanted to let you know that you aren't alone with these thoughts, I experience them and so do so many people with this disease. I hope that you can get back to meeting soon (maybe they could start an online version via an app like Zoom, where you can video chat with people?) Hang in there, I understand that loneliness can just be so.....crushing, at times.
