Anyone here with mild, well-managed ME/CFS?

[Psm92]

Just that really.

Also, just to mention that Suzy Bolt’s Rest, Repair, Recover programme has been great - it’s a really gentle yoga, relaxation and rehab programme with zoom classes and catch up videos. Her RRR classes are basically designed around the exercises that help POTS and suitable for CFS. Not too expensive either!!

@LizzyLovesTea omg thank you so much for all this advice. I feel like im living in a black hole at the minute. I’ve never really bothered with depression or anxiety but I’m so down at the minute.

my salt intake and water intake has always been ok so that’s not something that I can improve on.

but will have a look the other things and get in touch with Emily. And ring my gp.

It’s the hidden illness that no one else can see, that gets me down. I feel like no one understands. It’s like they just think
im lazy or a slob x

@Farmgirl12 for POTS, you have to drink extra water and have extra salt. You can get electrolyte tablets and dissolve them in water. I try to drink 2 litres a day and it does help. Its not about "improving on" it, it's actually a treatment for POTS.

@Psm92 i drink about 3 litres a day and that’s without a couple of cups of green/herbal tea. So I think that’s probably enough. I’d never be away from the toilet 😂

Thanks all! Good to know that it can improve.

@HermioneWeasley Exercising? For CFS? Really? Do you get PEM?

Yes, I was “moderate” (it didn’t feel moderate!) when I was diagnosed but am minimally affected these days- work 28 hours, parent, manage trips out and walking, can’t push it too far though. I don’t have a lot of advice, I rested a lot, did very very gentle CFS focused yoga, and very slowly built up my walking. It’s a horrible horrible illness

I have/had Long Covid/ME-CFS and was bed bound for 6 months then house bound for a further 6 months. More than 3 years later I consider myself in a good place - I work part time (as I did before I got ill), have family responsibilities and have tentatively started C25K. I'm not exactly high energy but doing okay and continuing to build on more I can do.

Please please do not give up hope - think this is so important for recovery. The official statistics are a bit gloomy but there are plenty of word of mouth success stories out there. I also recommend Suzy Bolt - she has a great FB group, loads of valuable info, and also have a look at Raelan Aigle's YouTube channel.

@Crayfishforyou I remember you from the LC thread - good to hear you're doing okay but sorry about your flare up- hope it passes soon.

@Psm92 yes, exercise is a vital part of my management. There have been times when I couldn’t have done it, but as part of my ongoing management it’s really important. I hate it though

@riotlady so glad to hear you are doing much better these days. Can I ask how long it took you to get to this place (guessing it was years)?

Thanks :) it’s been about 3 years since I first got ill and I was pretty much housebound for the first 18 months-2 years