When my life got turned upside down by a major chronic fatigue syndrome relapse, one of the most difficult aspects was the feeling of isolation. From being able to go out and socialise (admittedly in a controlled way) to only being able to manage email or texts, my social contact shrank overnight.
I knew very quickly that I was desperate to improve and get back to my old ME/CFS life; I just didn’t know anyone who was doing it. I would have really liked to be in touch with others who were also trying to improve their ME/CFS, even just to stop me feeling crazy at what I was aiming for!
Since I’ve recovered, I’ve discovered three Facebook groups who are all about providing that support. A couple of them talk about recovery in their title but if that makes you uncomfortable, remember that the first step for everybody is improving and that is where much of the groups’ focus is. There’s no reason you can’t be a ‘lurking’ member whilst you decide whether the group is for you or not.
All of them are closed groups so even if you don’t don’t really want to be on Facebook it is possible to be part of the groups without having a Facebook presence.
It’s a good way to find out what other treatments have helped other people with ME/CFS: there’s a huge variety of options out there if Eden Energy Medicine doesn’t suit you. But it’s perhaps in the nitty gritty details of recovery that these groups excel: there is an incredible amount of knowledge within each group.
Each time somebody asks a question about say ‘socialising’ or ‘managing stress’, I learn something new. These are people who are at the front line of improving their ME/CFS – or aiming to be – and the advice is invariably pragmatic. A really useful resource as well as being great support.
Here’s the links:
Part of the support I was desperate for was knowing that I wasn’t alone in the difficult feelings I was facing: how hard so many days were, how I doubted myself, how I felt so helpless so often. Now I’ve been part of the groups I mention above for a few months, I am beginning to see that although they are great for finding out what has worked for others or celebrating when something has gone well, they aren’t really the right environment for people to express these feelings in detail: it could so easily turn into a ‘moan club’.
Instead you may want to look at my Facebook page where I often talk about the feelings I felt during my years of having ME/CFS. (Search for ‘Let it all out Thursday’ for some posts if there’s no recent ones when you visit.)
There’s a couple of other Facebook pages you may want to have a look at as well. Victoria at CFS Warriors and Emma at Consciously Healthy both write in a very inclusive style, talking openly and honestly about how it is to have ME/CFS and to be looking for improvement.
I can remember reading a professional cyclist’s blog about coming back from a very serious bike accident during my relapse and thinking: ‘I can relate to that. She’s struggling too. ‘ It made me feel less alone and I hope that my Facebook page and these two may do that for you too.
PS If the links don’t work, please tell me!
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