Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hiya
I have had gradual onset of cfs for about 7 years, which has steadily got worse, then diagnosed with fibro, I have reduced my working hrs over the years and am now doing 3 shorter days a week and they are split up over the week
The question is I am still declining and am on sick leave at the moment for a few weeks, but I find that I feel worse when im off work, is that just because its catching up with me or because pushing myself to work does help in a way
Im basically thinking of taking some long term sick in the new year to try and pace myself properly as this is impossible when working but |I dont want to feel it is going to make me worse and unconditioned
Also worry about how I will cope not working as its my only real social time and takes focus off of my symptoms
any advice would be greatly appreciated
Luna x
I have had gradual onset of cfs for about 7 years, which has steadily got worse, then diagnosed with fibro, I have reduced my working hrs over the years and am now doing 3 shorter days a week and they are split up over the week
The question is I am still declining and am on sick leave at the moment for a few weeks, but I find that I feel worse when im off work, is that just because its catching up with me or because pushing myself to work does help in a way
Im basically thinking of taking some long term sick in the new year to try and pace myself properly as this is impossible when working but |I dont want to feel it is going to make me worse and unconditioned
Also worry about how I will cope not working as its my only real social time and takes focus off of my symptoms
any advice would be greatly appreciated
Luna x
One thing I've learned is that pushing is always harmful. Sometimes we push - when we absolutely must (like driving ALL the way home instead of just part of the way home) or when we really want to (like me, with gardening, its just irresistible). Then again, I have nowhere I must be the following day so I can just lie here like a lump until I feel better again.
I have also tried pacing when I do have better periods i.e. I still lie around for most of the day and try to rest. cant say I've notice much benefit from that, I just get frustrated watching life passing me by.
So I am at that stage of trying to hang on to the ability to work, not just because of the finances but because I think I will go bonkers without the stimulation. Having been home unable to work for 8 month, I honestly do not believe I can survive another extended period at home any time soon.
PS : I am a little bit crazy but I'm still sane enough to listen to my body and pace myself during activities and get as much rest as I can outside of work.
I am so like you. I go bonkers staying at home, so have developed a life around non-profit community groups. ( I used to be a community social worker). However, when I really,really crash I feel SO GUILTY because I know I go out too much.
Get a psychologist and talk about your values, priorities--get somebody else to help you think about moving forward with a damaging disability.
Focus on what you can do from home--jobs, volunteerism, hobbies--and start inviting other people into your home. Do lunches for your friends; if you belong to groups, invite them to meet at your home; work on bringing people in so you can sit in your recliner and still visit.