"Cara Wagner" <***@att.net> wrote in message news:<7gEqb.email@example.com>...
I'm really sorry to hear about your wife's problems and the stress
it's putting on you. the things glen mentioned about the possible
reasons for a person with m.s. to hide problems or deny they need help
are things i've found to be very true in my own case [with the
exception of the spouse being unable to lift you without getting hurt
-- even my daughter could lift me up, it wouldn't be difficult for
her, just embarrassing for me].
i know you've talked about working long hours, she may feel guilty
about that, and not want to make your time at home worse by turning it
into 'slips and symptoms.' what glen said about 'why bring it up, when
there's nothing you can do about it?' was a big one for me. there
ultimately isn't anything dennis can do about neuro pain or increasing
mobility problems, for instance. independence too -- if i CAN do
something without assistance, then I WANT to. it's an attitude my doc
basically agrees with. the problems come up when i THINK I can do
something just fine without help...and turn out to be wrong.
a problem that i had with trying to hide from my family for a while --
and i'm not implying that it's something you or anyone else does, just
my own specific circumstances -- was that they would see me misjudge
something i'd thought i was ok with, and then assume or fear that i
was hiding things from them, and bug me about it so much it started to
feel like they were constantly stalking me down saying 'WHAT'S WRONG?'
click 'WHAT'S WRONG?' click like caring robots or something. when i
said 'nothings' wrong,' they didn't believe it. sometimes the fatigue
is worse and i just want to lie down and veg, or maybe it's been a
tough day and i just want to put on the headphones and de-stress for a
while, rather than talking about what a tough day it's been. get past
the focus on 'me, me, me' and get into family time, you know what i'm
saying? dennis and tam have lives and joys and sorrows of their own,
and i want to be part of their lives, as well as having them be part
of mine. [poorly stated, hoping you get the drift, tho.]
what finally helped most with that was i had to sit down with them
both and give them my most solemn oath -- not really an overstatement,
i'm surprised they didn't make me sign anything in blood! -- that, if
i really needed help with something or couldn't do something, i would
tell them, and ask for their help, if in turn, they quit trying to
'catch' me overdoing it. i've got a bad case of stubbornness
masquerading as pride, so i really do hate to ask, but i'm serious
about the silly-sounding 'my promise is my bond' stuff, so i've done
my part. everything from the dumb -- 'can you open this pickle jar for
me?' -- to the humiliating -- 'uhmm, sweetie, i can't get off the
toilet, can you help?' they've done their part too, and there's a lot
less stress all the way around.
the big problem is, and i'm sure you know it, having lived with M.S.
even tho you don't have it yourself, the unpredictability. most days,
i'm able to gimp almost a mile to the nearest bus stop, with the help
of my scariest cane. so how come sometimes i fall down unexpectedly
in my own house? i don't know. probably attention -- it's hard to
concentrate fully all the time and never let your mind wander.
something i learned the need for in the kitchen, with numbness, after
having cut and burned my hand a few times. even still, knowing the
importance, sometimes the mind wanders.
that's from my perspective as a stubbornly independent person with
M.S. -- but my perspective as a parent says that it CAN'T be good for
a child as young as your boy is, to see his mom fall down and have
problems; it's got to be pretty scary for him. IF there's also a
'don't tell daddy because he'll just get worried,' the little guy
might be feeling torn-up -- is it bad to worry dad and snitch mom out,
or is it bad to feel relief that dad knows, because you're been so
worried about mom? a pretty big burden for a little kid to try to
carry on his own.
does cara's neuro permit or encourage family visits and family
quesions? i know my neuro encouraged both my daughter and dennis to
feel free to ask him questions. he took a lot of time with my
daughter, reassuring her when she was little, answering in more depth
when she got older. does your local society have a kids' group for
children whose parents have M.S.? Tam went to one when she was little
and i was newly-dx'd, and she liked it very much. our local society
also had a 'couples group,' for m.s. person plus spouse -- anything
like that in your area?
sure sucks that there are no easy answers. i understand where she's
coming from, but also really feel for you and your child. as a mom,
she needs to come to the realization that it's a lot easier for a kid
to get used to a mom in a wheelchair, or with forearm crutches, or
whatever, than to worry about her all the time and see her fall down
-- scary stuff for a kid.
no real wisdom here, just wishing you all the best,