Those of you with chronic fatigue syndrome..

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.. dya mind me asking what you do work wise ?
Signed off at the moment but feeling a bit stuck
Many thanks

I'm really struggling with my MH at the moment, and today my endometriosis is flaring up so I'm posting from bed feeling rather despondent about the future but trying to hold it together as much as possible.

OK if I don't do very much : )

Still of work after a bout of Covid has triggered worsening symptoms. 7 weeks and counting.

On the positive, I did walk very slowly round the park for an hour this morning.

It did me good to be out in the sunlight (bits of blue sky), and seeing the autumn leaves.

I've signed up for this, if anyone else is interested - it involves a questionnaire (20 or 30 mins, multiple choice) plus a spit test to send off if you fit their criteria.

Run by University of Edinburgh.

Have to have a diagnosis.

They want 25 thousand volunteers, to look at if there are any underlying genetics involved (heavily suspected but not proved as yet)

https://www.decodeme.org.uk/

At least my body might be of use to science!

If it helps people in the future (maybe understanding their risk factors like we do with some cancers), then I am more than happy to send in my DNA.

It seems like a well regulated study and has a full statement on privacy of data etc.

I work p time in a library.

Also training as a dyslexia tutor.

An hour outside is a record, usually its ten mins.

I should have done 15 mins really, but was overtaken with optimism.

No payback so far, but legs were sore - you know the muscle lactic acid feeling, as if you've done a marathon rather than just popped to the PO round the corner?

Have other co morbid conditions which contribute but I haven't worked for 8 years now

Sweaty today when I try to do anything and been out of breath all day. Payback for having a couple of good days. Made a nice teabread last night and today which is lovely with salted butter. We have 2 litters of puppies just 2 weeks old which are gorgeous 🥰. Still on career break until end April. Lots of stressful scary legal stuff ongoing and still trying to finish decorating house to put up for sale. Still have MIL living with us and her dementia seems to be advancing, struggles getting her to change clothes, wash etc. All in all I'm continually stressed and anxious and mentally and physically exhausted. Have bought a Fitbit and worn for past 2 weeks, showing low percentage of deep and REM sleep which I expected with this condition.

This thread makes me sad. Most of you can work or have some life.

I can do nothing. Went to an essential hospital appointment ( in wheelchair) last week. Been in bed ever since. Can only talk lying down and can’t really go up and down stairs.

I wasn’t much better than this before the appointment.

@ArseInTheCoOpWindow sending hugs.
I worry that if I keep overdoing things I'll end up housebound and in a wheelchair. As it is I can only go out once or twice a week and only if I get a lift right to the door.
I did an hour's work a couple of weeks back and have only just recovered enough to do another half hour next weekend.
I'll always put a brave face on though, and make the best of whatever energy I have.
The toughest lesson for me was to learn to say no to people when I need my energy for myself. That feels very wrong, and I have really set myself back in the past by overdoing it helping people.

Have you had any counselling?
I.hope you have some brighter times soon

Can def relate to the did you good to be out and in sun light
I.took two very short walks today
Love the blue sky

Sold a few more bits on vinted
Had a phone counselling session

I have a consultant call next week re my cfs

Have you guys all had help from fatigue services?
I filled in a 20 something page book last month

How do you spend your time ?
Im struggling with lack of structure and hope to work part time sometime

Do any of you get the access to work grant ?

My nana has dementia - is very tough isnt it

Have you had help from fatigue services ?
How long have you had cfs for ?

I really hope you have some easier times soon

I took up painting in my spare time I've become quite prolific, canvases piled up everywhere, walls completely covered. I don't sell them, it's purely something I enjoy, but there would be nothing stopping me from having an etsy shop or something but it's my preference not to. To be honest I sleep a lot and feel exhausted all time, I can't really dedicate a lot of time to anything.

I was diagnosed with M.E when I was 10 and have never been well enough to have a job. When my niece and daughters got to around the same age and developed similar symptoms we realized that maybe it wasn't M.E. We finally got a diagnosis of Ehlers Danlos Syndrome last year. I would love to have a part time job but I have no work history and I am a carer for my daughter, while being exhausted myself. I would love a business that could be run from the house/sofa/bed

Have you looked @ up work ?
Re work from sofa / bed ?

I was diagnosed a few years ago. As the years slip by, despite me trying everything, throwing good money after bad to get better or to stop getting worse, I've steadily declined year on year. I work from home but have dropped hours and am becoming increasingly bad at my job.

Things get worse every time I get a viral infection so Covid was awful, I've not got back to baseline since. Can barely keep the house going. I won't be able to work much longer.
Very depressing but more frustrating. There's so much I want to do!

Lots and lots I think there’s just something wrong with my brain. I first became ill with depression shortly after my twelfth birthday and have never been the same since. It was so bad that I could barely move or speak, and didn’t change my clothes or shower for weeks on end. I didn’t finish school because of it. Mental illness runs in my family.

I’ve been offered ECT in the past but didn’t end up going through with it. I’ve now been offered rTMS which I will go for but it’s a big commitment - 5 treatments a week for 4-8 weeks. It’s not in my area either so it’ll be a bit of a drive each day. But worth it if it helps.

.

It’s really hard living this double life in your head, imagining yourself doing the stuff you want to do but can’t manage. I’ve had to do a lot of ‘radical acceptance’ which helps but it’s still a work in progress. I really hope that one day this will lift for you.

@i5979908 If you couldn't move or speak or take care of yourself it might have been catatonia, my DS had autistic catatonia. If you have autism can also get burnout. You would need a psychiatrist to diagnose and it's not that well known but might be worth looking into.

I had a diagnosis of CFS once but made a full recovery and turned out to have breast cancerx2, after the chemo and with swimming three times a week and vitamins and antibiotics the symptoms have gone. Antibiotics cured the constant infections then swimming gave me back strength mentally and physically. Though whether CFS was the right diagnosis who knows.

@Silkiefloof I don’t have autism…it’s more just that when I have a really bad episode of depression I can get catatonic. It’s like my body shuts down. I’ve been hospitalised quite a lot for it. Fortunately I’ve been doing better in recent years and haven’t had episodes as severe as that, but it’s always a struggle.

Can definitely relate to feeling exhausted a lot

Did you guys find help from fatigue services beneficial ?