Is there life after ME/CFS?

[Ananda1]

2 yrs ago I was diagnosed and housebound for 6 mths. Through hard work,
support from family and finding the right drs (not the NHS who literally don’t give a sh&t about ME) did help me get a bit better.

Im back to maybe 40% (which from 0% is basically a miracle to me) - improve a little each month slow and steady. Limited Mobility wise (5 mins walking cos of joint pain) and definitely couldn’t commute into London (1hr)…any meetings, tricky cognitive tasks, juggling things and new people tire me out…for example I maybe able to see a friend for an hour of light chat but they have to live close and I’ll rest afterwards. I could probably write a slide or two if it was simple but not whole document or something analytically taxing. Ie I find sums and finding words still tricky.

I’m actually not down at all - I’m overjoyed to have some life back but any career (or life plans really) have been paused and waiting readjustment.

anyone been through this and got any friendly advice for me in this unknown transition phase? Deep, practical, positive whatever u think is relevant.

Much appreciated

Yes! I don’t believe there is a cure, but it’s a condition which can fluctuate and with careful management can be stabilised to a degree. I’ve lived with it for 8 years and I’m currently feeling better and more productive than ever. Working a lot more, about to be promoted, capable of a lot more physical tasks than before.

I think it largely depends on the cause of your ME as to how to manage it. For me it was a mixture of extreme stress/fear over a long period of time, combined with a nasty bout of flu which seemed to finish me off.

So getting stressed can cause me to crash. Therefore I avoid stress as much as possible, I make time to relax and recharge, and in times where external factors mean stress is unavoidable I am extra careful to look after myself (this tends to involve sleeping a lot). But by doing this I can avoid a full on, bed bound for months kind of crash.

Its also important to me to not get ill, as if I pick up a virus my recovery is incredibly slow and what might be a sniffle for some people will be a hideous ordeal for me, lasting weeks. I take 1300mg monolaurin per day, it’s a natural immune booster and anti viral, and I can honestly say I just don’t catch viruses anymore, whereas I used to catch every bloody thing going.

I really thought this was just my life now, for a long time, being stuck in bed and too exhausted to move. But I do actually have my life back now. I have to be careful not to overdo it (and I do suffer badly for it if I get carried away), but by staying in my lane and knowing my limits I can now lead a fairly normal life.

It's taken me 7 years to do it, but get a mobility scooter. I've been so limited and housebound for so long the freedom you feel when you can scoot along is priceless.

I had it 20 years ago. Recovered after about 2-3 years. Have been ok since then.
Best wishes.

How old were you? I understand young people are more likely to recover, but it would give me some hope if you were 40 plus.

On another note for OP. If you have othostatic intolerance try exercises in a recumbent position. I can't tolerate any exercise standing, but can get away with some whilst recumbent. Obviously start very small and see how you go. I'm happy with doing just five mins on a recumbent bike, it is better than nothing and way more tolerated than walking. I'm not recommending GET, I'm recommending finding your baseline and pacing best you can with what energy you have access to.

I've not recovered yet and still have all the symptoms you describe. It is incredibly isolating this illness and you find out who your friends are. All I can say is try maintain those relationships better than I have. It is hard though when you just want to rest after getting the most basic of living tasks done.