Looking for help with isolation and symptoms please

Hi everyone, I’m new to this whole online community idea, but am hopeful that it will help me feel less isolated and disconnected from other people.

I’ve been very ill with chronic fatigue syndrome (CFS/ME) for just over three years now. I’m still housebound and need 16-18 hours bed rest per day. However I have more energy generally than I’ve had for years and would love to be able to connect with others who understand what this kind of life is like.

Can anyone please offer advice or suggestions about how to feel less isolated or meet others?

I’m unable to work but am keen on cooking and making bread (when I can) and am slightly obsessed with cross stitch. I’ve just joined a year-long stitch-a-long with Modern Folk Embroidery if anyone else is interested in needlework.

I’ve been in touch with local charities but so far there is only one support group which is held at an odd time in a house with pets. My allergies will go bonkers so I can’t attend that even if I was having a good day.

I’m thinking about starting my own group if I can’t find one. Does anyone have experience of doing that?

My other questions are about symptoms and dealing with the syndrome as it progresses. The last two months I’ve started having these full body muscle spasms that are quite violent and prevent me from doing a lot of everyday things. They tend to last for a few days then go away for a fortnight or so. Has anyone else experienced this and if so what happens next?

Thank you for reading this quite long post. Any suggestions, advice or thoughts greatly appreciated. Thank you!

3 Replies

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  • I belong to my local ME/CFS group who are very understanding and helpful. I'm not sure where you live but there might be one in your area. I live in Lancashire.

  • PS I have found the Perrin Technique very helpful

  • Thank you very much for replying 😊.

    That’s a great suggestion about support groups, I will have a look locally. I’m in Melbourne, Australia. Thank you also for the Perrin technique, I will look it up too.

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