There is a really fine line and balance to "not overdoing" "knowing limits"
"paying later" and being wrapped in cotton wool and not living at all.
What do I mean here? Well sometimes I can overdo and pay for it later, but you
know what?? I pay anyway! So, sometimes it comes down to just laying
around and vegetating or trying to do what I want to do; having fun
living life to the fullest and then paying for it later with happy
You see if I rest all the time, don't overdo, don't try to do what I
"shouldn't" (by someone else's expectations) then I still hurt, I am
still tired, I still have spasms, I still have spacticity, BUT I am
more miserable, depressed, feeling a worthless artichoke and because I
haven't tried to "do for myself" I spiral into believing that "I can't
do - then- won't do" and end up even more stiff and sore, because I
haven't stretched myself.
Point in case: I almost got killed the other day taking my dog for a "walk" -
(he runs in front of me and I try to keep up in my electric chair). Ok,
so taking my dog on the road is dangerous, I almost got killed, next
time I could get wiped out - so first thought? only take my dog outside
around our yard.
Well phooey! I can 'almost get squashed at anytime at any place in any
activity' - so should I stay at home and "be safe" or should I do the
one thing - well one of the things - that gives me the greatest
pleasure, pride of achievement, remaining feelings of "normal"??
Life is all about taking risks and living to the fullest! Do I rest, not try to
do things, not enjoy myself "just in case" - well if it HELPED for one
minute then yeah maybe, but folks it doesn't help at all! NOT trying to
be independent and carrying on with the little I can still do for
myself would kill me inch by inch.
Doesn't the disease steal enough without giving it more just so that I won't
"pay later"?? The payment I make is only a tiny bit more than what I
would normally pay anyway and the reward is so much greater!
When I travelled alone to Australia recently, some people were real quick to
say "don't" because of what "might" happen - or because it is "too
hard" or because of "recovery time"....well you know what? My response
was "and your point is??" and went anyway.
Yes it was a darn hard trip, exhausting and painful and taking days at both
ends to recoup - BUT I had the time of my life, feel 10 times more
confident in my own self concept (I am not pathetic cripple) and I have
lifelong memories and photos and my daughter and grandbabies do too.
I am so glad that I didn't give in to the "nay sayers" and my own fears and
self doubt; I am glad I don't live my life wrapped in cotton wool; and
I am glad that I have the strength to say to MS and to "care takers"
bugger off I am alive and darn it I am going to LIVE!
The point is we only live once - pick your battles and schedule down time of
resting and recouperation, but live while you can, do and see and
travel.....so what if you have to spend 2 days on the couch - at least
you will do it with joyous gleam in your eye; fond memories and a sense
of pride and dignity in tact - all because we seize the day and choke
the life out of every moment!
Sorry to go off on a tangent, but MS progression has a mind of it's own and no
amount of resting and 'taking care' is going to give me one hour more
of time on earth - or one day without symptoms - or one whatever of
ability conserved - there is no stopping this disease - we can slow it
down but not stop it and I am "young" enough not to outlive it and die
of 'natural' causes.
Because of the extent and location of my lesions I do not know how long I will
be able to live and to do things I want to do. I do know that unless
there is a cure and soon, being 'bedridden' is looming on the horizon -
shouldn't I keep doing while I can and preserve whatever dignity and
self esteem I can....and shouldn't I be the one who is the judge of
what that is?
So, yes there are some things not worth the effort or the risk or the extra
pain but I want to at least try and decide for myself what they are
otherwise it is too easy to say "no I can't, I won't" and then not do
anything worthwhile and little by little less and less. It might take
me all week to clean my house to the best of my ability and limitation
and reach from the chair- but at least I try and at least I achieve
what I can do and yes I end up on the couch - but hey I end up asleep
on the couch or bed every day anyway! lol