Re: Coping with chronic Illness - by an MSer -- good read


Peace Dove wrote:

> I know Rose -
> the hardest thing capable independent people have to do is ask for help
> --- it somehow seems to feel "wrong" in their own eyes that they can no
> longer do it all by themselves ---
> I found TG that people are more than happy to help -- and feel pleased
> that they can actually DO something constuctive ---

Dove, i definitely see that attitude with Dennis and Tam, especially
Dennis -- he's used to being able to solve any problem and fix anything
that's broken -- oops. ;-> he gets frustrated and starts feeling
helpless himself. i found out a while back that letting, or even
asking, him do little things for me actually makes him feel better, so
that was a no-brainer. :-> Tam and i are having *great* fun
conspiring together right now -- i found the perfect Christmas present
for Dennis, it's at Horton Plaza in downtown San Diego, Tam works a few
blocks away -- i had them put a "Hold" on the package, and she's going
to leave a little early for work and pick it up for me. :-> i
remember when we used to go shopping together, and miss it, BUT, i have
to admit "conspiring" together is pretty enjoyable too! (conspiring
with Dennis for her gift, as well!) :->

it's more about other folks -- Dennis's sis has done favors for me in
the past, but i was ok with it because there was "quid pro quo"
involved -- she might pick me up from the doctor's office, and then i
might babysit her kids later that week, that kind of thing. these days,
there's less i have to offer in return, so i feel like i'm taking
advantage. the truth is, she's a very sweet lady who's never, ever made
me feel bad or obligated for helping me, but she also has a job,
family, and a life of her own....so i do feel bad, because I AM taking
time away from something else in her life.

the best people are the folks who are honest -- if you ask for help
when they've got something else planned, who will tell you "can't do it
that day, how about Thursday?" or whatever. having somebody agree to
drive me to the doc, then finding out later that they'd had plans and
rescheduled them all because they didn't want to say No just makes me
feel like a big giant jerk, even though i specifically ASK about days
and times being convenient. maybe some people feel guilty if they say
no to me because i'm disabled -- hey, you're not the only person in the
world, if you've got a meeting with your kid's teacher set up, i'll
call *someone else*, ok????

> I am so far past the place where I even imagine life "going back to
> normal" -- it actually comforts me more to read straightforward advice
> on where to go from here -- and how will we get there ---
> I think she did well -- someday I will read her book and tell about it

this IS now 'normal' for us! with time, i'm sure other weird stuff will
also become routine, and accepted, and integrated.

we're doing HUGE Christmas dinner with Dennis's folks. some of them
live out of town, and i don't see them that often, and when i do, they
always *stare*. it's disconcerting, nothing subtle about it at all. i
know Dennis has an aunt who is severely disabled due to M.S.; one of
his relatives told me George had said it reminded him of his favorite
sister's increasing disability to see MY increasing disability, and it
was painful for him. one of his sisters just had a baby, and is the
proper center of family attention. there are going to be *21* people
there, and the house is on the small side. i'm SO nervous about it, and
i usually *love* the holidays. :{ i just feel like it's such a big,
huge deal getting me out, in, settled, etc., that the hassle factor
annoys some, worries others, and makes me feel like a big PITA. his mom
thinks i "use" my M.S. to get special treatment, and is determined to
keep the "family focus" on Jodi and her new baby. i'm hoping to be able
to screw my head into "Fun" mode, ignore the stares, hope i don't make
George feel sad on what should be a happy occasion, and can find a
place where i wont' be sticking out in everyone's way, to sit and chat
and eat and play games with the kids and that kind of thing.

last time we visited and people stared, i felt uncomfortable at first,
but shook it off because his folks who live nearby are cool, we know
each other well, and they're used to me the way i am. ended up having a
fairly enjoyable time. i'm hoping it turns out like that this time too
-- man, am i nervous! :/

wish me luck! :->
rose

.

Relevant Pages

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