Those of you with chronic fatigue syndrome..

[worldwidetravel2017]

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

Why does he expect you to carry on as normal? Can’t he do some of the cleaning, cooking etc?

I work less than a couple hours most months in mobile aesthetics, I have pem today and hoping I’ll be well enough to work tomorrow.

He does most of the cooking, cleaning etc he doesn't notice it but doesn't expect me to do it, it just wouldn't get done. I don't know, he's the type that battles on through illness unless it floors him and usually I'm the same until I can't. We've got a litter of pups and his mum lives with us so things to do with them need doing every day. I don't want sympathy particularly from him just some acknowledgement, think with all of us it's very difficult for partners to understand symptoms etc. I never say how I'm feeling usually as it doesn't help me manage it and it's like I'm begging for attention almost.

I can’t work at all.

The Sarah Myhill book helped my recovery. Followed to the letter and over 9 years have gone from being unable to walk or talk, to functioning quite well and returning back to permanent paid work, 2 days a week. Its a full on receptionist type role, and its physically and mentally exhausting, as on my feet most of the day. Still need to pace and rest on days off and I am wrecked when I come home at the end of a working day, but its is worth it. Had to leave work aged 55, with every intention of getting myself back to work. Took a lot longer than the 6 months I thought it would take, but did half a mornings voluntary work after a couple of years off work and built up to where I am now. I had to accept my diagnosis in order to help myself get better and its been a long, slow and sometimes frustrating process, but I've always counted the little victories along the way. CFS is always going to be there to some degree, but I do have a life again, just not the one I used to have and there is also aging to take into consideration. Some people do make a full recovery.

Reading some more of your posts, I know I have been very fortunate in having support from my husband to enable to me to focus on recovery, but there has been a lot of stress, anxiety and bereavement with elderly parents we've had to deal with. Life does get in the way dosent it. And its a bit much when loading up the dishwasher is a huge deal in life. How do you explain that to someone without CFS! Best wishes everyone x

My dh is very supportive too! I’ve not even managed dw today😭

I've an autoimmune condition that comes with CF.

I work in Local Government part time and make use of flexible working and WFH 50% of the time. I applied for my role before diagnosis. It was a FT post but I was recruited PT as per my request.

I've recently discovered my employer (and others) will guarantee you an interview subject to meeting essential criteria if you have a disability. So disclosure isn't a barrier to employment.

Like many posters, I'm still coming to terms with the limitations. But I'm grateful there are employers out there who are supportive.

I have a part time role to start soon

Exciting, what are you doing. I’ve had a few clients today, done in!!

How is everyone doing ?

Bloody exhausted 😩 but it’s because we went away last night. Just stayed in a local hotel and had a takeaway but it was a nice break and change of scenery.

Worried at the moment because my 9 year old is showing symptoms like mine, so we are taking him to a paediatric rheumatologist next week.

how are you?

Also exhausted, I've been stage crew (well, curtain puller) for a children's theatre thing all week, and have only survived by doing absolutely nothing else, and with painkillers taking the edge off the worst of the pain whenever I have to be where people are.
Show came down tonight and tomorrow is allotted for crashing hard.

In the middle of moving house and today feeling physically sick with fatigue. Still have to accompany the mechanic to get tyre changed then help pack van and drive it for approximately 6 hours today.

Tyre still not changed but at least gave us more time to pack and sort out jobs. Exhausted.

Please try again and keep trying, you can reapply after a certain time. There are online pip forums & look into fight4justice to help with form filling. I know it's exhausting but do mandatory reconsiderations & tribunal.

Busy busy times

Might try again next year or year after

Im quite drainned atm..

Im doing some part time work but its quite a lot 4 me - lying in bed - resting / recharging @ 12.30pm on a Saturday..

I have another invasive procedure in hosp soon for something else

Juggling lots

Thanks though