I second all of
@Cactusflower's responses above... #3 in particular was/is very important to me.
A list of what I have appreciated/wanted/needed from my husband (who's cared for me for almost 30 years, to include when I was bed bound off and on for a total of around 18 months, and then housebound and then partially housebound):
a) I appreciated that he accepted that my symptoms and my capacity to do things fluctuate and accordingly he's never said anything like
"you could do that yesterday, so I thought you'd be able to do that today"... He's never been accusative or incredulous (or didn't show the latter if he was!) about this.
b) I appreciated that he did not pressure me to seek medical treatment; he left the decisions regarding that to me, and accepted and supported my going down the mind/body techniques route when I decided that I wanted and was going to do that.
c) I appreciate that he accepts that, although I might be able to do a particular task (or tasks) consistently, I might need to ask him to do that task on some days because in response to other things I've endeavoured to do during the day (or during the previous day) my brain may have ramped up symptoms and hobbled me from doing whatever that task may be.
d) It was great that he agreed to establish with me what tasks I wanted/needed/would like him to do for me on a regular/consistent basis without my having to ask him each time, that is until I might say at some point that I'd like to try doing a particular thing. With other tasks I have always liked that he lets me get on with them; we agreed to proceed on the basis of that if I don't ask for assistance, I don't want or need it. (This takes away any possible feelings of along the lines of '
he didn't help/offer to help so he doesn't care', when in fact he does care, but is only human and can't know because he hasn't experienced himself what it's like to have profound TMS symptoms.)
e) I appreciated that he's never pressured me to do anything... not tasks, nor to hurry up and get better... and he's never complained about the situation, never bemoaned (or shown any resentment) that I couldn't go on holiday/vacation with him or go to the cinema/theatre or to restaurants or cafes etc.
f) I appreciated that (unlike my mother-in-law and others!) he didn't question that I could still laugh at a comedy show on TV or enjoy a film despite being unduly fatigued and/or in profound pain.
g) I appreciated that he has been willing to adapt and take part in and enjoy the small things in life with me. With profound symptoms my and, as a consequence, our world together shrank dramatically for a long time, but he was up for playing boardgames, doing crossword puzzles, going for short walks when I could, that kind of thing. It stopped me feeling so lonely and helped ward off depression.
h) I appreciated that he never questioned or argued against us buying anything I thought might help me to do things and get better.
i) Something that used to really get to me was when if I needed to explain why I couldn't at that stage do something, people would listen and then say,
'but you look so well!' or '
it's a shame, you're so young to be crippled up like that!' (when, for example, they saw me finding it difficult to walk). Fortunately, my husband never said such things, but if it were a carer saying anything remotely along those kind of lines, I found it to be extremely unhelpful and so terribly deflating for one's spirit/mental health.
I hope at least some of this will be of some help.
