I have been fortunate to have an employer that is very understanding of my health issues (I have told them I have medical problems but have not gone into specifics). I have been able to cut back my hours and take time off when I needed to. The problem is that, even though I am usually physically able to work, my "brain fog" has gotten so bad that I am only doing actual work about 50% (or less) of the time I am there. I will literally catch myself just staring into space for long periods of time. I feel guilty for for basically stealing time from an employer that I like and has been very generous to me. But I need the money right now (kids in college). Not sure what to do. I have started chewing nicotine gum and it helps with fatigue but not concentration/mental sharpness. Not sure what to do.
This is a difficult one, and one I've struggled with myself. I'm doing better now and feel that my productivity is pretty decent now, but for a while I felt like I was just mentally unable to function and felt oh so guilty about 'working' then. I remember worrying about the ethics of it quite a bit. But I kept going in and staring into space (or blankly at the computer screen) when I couldn't do anything else, partly because I didn't want to loose my career/paycheck/insurance partly because, as my mom reminded me, it wasn't my job to judge my value to the organization. It was my bosses job to let me know if they had concerns about my productivity or efficiency, and just because I wasn't working to my previous level, it didn't mean I wasn't contributing or didn't have value to the org. I realize it's still a bit of a gray area, but if you aren't hiding what your productivity level is then you could leave the judgement of that to your employer.
So that's my response to the emotional piece!
As far as the pragmatic, I don't know how much it will help, we are all so different and I don't know what your particular symptoms are like, but, for me the things that I think (might have) helped with my cognitive functioning are (in no particular order):
- glutamine, I definitely noticed some improvement with this, which disappeared when I discontinued and reappeared when I restarted. It didn't change my life but every little bit helps. Oh, and for me at least, more did not equal better with this.
- sleep, improving my sleep and especially I think, slow wave/deep sleep (for me the magic combo was low doses of ambien and baclofen, and possibly LDN for reduced muscle pain) helped a lot, I think letting my body do some of it's own healing.
- identifying any triggers (for me vitamin D and calcium cause all of my symptoms to flare, so figuring this out has helped)
- possible supplemental serine, though I'm not sure about this
- judicious use of stimulants, this will vary of course but I do get improved cognitive functioning from a prescription stimulant (dexadrine, ritalin, adderal), but I can't take them regularly or they just made me feel worse. I'd use them occasionally for 'catching up' on work, which helped me since much of my work is project based. Caffeine works in a similar way for me, though I tolerate a little bit regularly, I can only use it for a big 'push' occasionally. Also neither caffeine or rx's would work if I was already really sick/pushed to my limit, I'd have to have a tiny bit of gas in my tank usually to get the positive effects on my cognitive functioning.
- recognizing that I had to work with a very erratic level of functioning, i.e. I was not going to be able to function well all of the time, functioning well some of the time should be my goal.
- working an alternate schedule, if you could work a reduced schedule (shorter days, or a day off in the middle of the week maybe) it might help with balance. Though it sounds like you might already be doing this.
- the usual ME/CFS treatment advice - treat your whole illness, rest as much as you possibly can, cut out any activities you can, prioritize, prioritize, prioritize. This forum is great for finding possible treatments ideas, though admittedly it is a massive mound of information to weed through.
And this is presumptuous, but really look at the risk/benefit proposition of working. I don't know what your situation is like but if you haven't already done so, it might be worth investigating whether there are other options for funding part of your children's education (judicious student loans in their names, working while they are studying, grants). If they don't know how sick you actually are, it might help to be open with them about this. This will of course depend on personalities and you'll be the best judge of how well they will be able to handle the information, but just because they are young doesn't mean they won't rise to the occasion or that they wouldn't want to help. There might be ways they could help minimize the cost of their education (maybe taking an extra class if they are full time already and it doesn't cost more, buying used books, sharing housing, I don't know...).
Best of luck,
Penny