Those with CFS who are unable to work. Help please?

[ChronicallyShattered]

I have CFS and have done for many years. I also have two DC with disabilities. I took a break from work in an attempt to recover because I was not getting better (I was getting worse) but thus far have been unable to return.

I’m chronically exhausted (not tired, crippling exhaustion) and I feel like I’m simply existing. Once I’ve completed the school runs and some necessary chores, I’m exhausted, and need to lie down in order to do the next school run. Then once the DC are home, it’s an array of making meals, sorting school bags, lunches for the next day etc and I’m exhausted again so I go to bed with the children.

I’d like a hobby but I’m unable to walk far or concentrate for long periods as it depletes my energy.

I never do anything for me and it’s miserable. How do others in my situation manage? How do you do things for you?

Just me? :(

I have two disabled kids and a disabled DH and have been really unwell the last few years with Long Covid. I have managed to get back to work, but still struggle with the fatigue. There were some things that did help me and having some me time was one of them.

Things you could do as you time that involve resting, 10 mins is enough.

Guided meditation
Sitting outside just watching nature/listening to nature
Breathing relaxation exercises
Tapping exercises
A short bath or shower sitting on a chair followed by putting nice smelling cream on.
Watching a feel good movie or TV series with my feet up.
Listen to an audiobook.
Chair tai chi/gentle lying down or chair yoga (Suzy Bolt on YouTube is a good start) on a good day.
Something nice to eat or drink that is a treat to yourself.

On a bad day lying down in a dark room for half an hour was my treat to myself and did more for me than 'doing' something. Maybe reframe your lying down as something for you too especially if you do some yoga nidra breathing and relaxation.

I don't have CFS, I have Fibromyalgia, among other things, and I can't work. I spend much of my days resting or full on fast asleep, taking lots of medicines. I find it very hard to concentrate or take on board new information. I've found a few passtimes, though it is hard to keep them going. I can't walk far at all so I hardly ever get any exercise. The isolation is soul destroying at times.

I really admire that you manage to sort out your children & Home, but I understand that you feel there's nothing left of you that's just for you.

It's hard but it might help if you can find a hobby or something to pass some time, that works when you're tired and your cognitive abilities are affected. Some of the universities near to me run short courses each term, many of then via Zoom, that work for me. Only a couple of hours per session and last from 4 to 6 weeks. I also look out for one off presentations or lectures that run over Zoom. Maybe your local universities or colleges will offer a course that interests you. Or there's a subject you're interested in researching for yourself?

I crochet, it calms me down, keeps me occupied & stops the doom laden thoughts. I've done 4 king sized blankets in the last year.

I have CFS, Fibromyalgia, anxiety, depression, Autism, neuropathy & have been unable to work for 13 years.