To tell the truth, I had thought about it, but generally people don't like to
hear about illnesses ~ especially other people's. However, if you're interested
in learning about MS, here's a little non-doctor lingo.I always define MS as being like a car when the cables are corroded. There's
nothing wrong with the battery, nothing wrong with the ignition, nothing wrong
with the alternator. It's just that the wires are frayed, and the signal from
the ignition just doesn't go anywhere, or if it does, it's late and scrambled.
That's MS. In most cases, even the wheelchair-bound aren't sitting there
because of weak muscles, it's that the muscles aren't getting the message from
the brain to STAND UP, STUPID!!So, 'weak' is the wrong word, it's 'slowness' (down to plain 'no go').
But sometimes, semantics get in the way. About five years ago I was having a
discussion with a neurologist (whom I've since dumped) . . . (BTW, the more
specialized the initials are after the doctor's name, the more arrogant and out
of touch they tend to be) . . . I was trying to tell him it was my left leg
dragging, not the right. I used the word 'weaker' to refer to the left leg. He
kept correcting me. He couldn't understand what I was telling him, or so he
said. Then he didn't like the fact that I was using the word 'flare-up' rather
than 'exacerbation'. (I invite you to open your Websters.) Finally, in a fit of
whatever, I snapped, "Look, it doesn't matter whether it's 'weak' or 'slow'.
When I go to take a step, my upper body starts to lean and the leg doesn't move
with it! The result is the same ~~ I fall down on my butt (I said something
else) and go BOOM!If anything, I've learned to be assertive with doctors, to not let them dictate
to me. To question until I'm satisfied. And then, to go to another source and
double check.The same goes for you, whether you have a disease the magnitude of MS, or you're
totally healthy and just going for your annual physical. It's your body. You
are not a doctor, but you live with your body every day. You know it better than
any doctor and you know what's 'normal' for you. Don't let them intimidate you
into thinking otherwise.And for heavens sake, don't feel stupid for asking questions. You're stupid if
you don't. No one has more reason to keep you healthy than you do. It's a
doctor's job to make sure you understand what he/she is saying. Sometimes, they
just don't think you'll understand, so they talk down to you.This is a big NO, NO! One of the main problems with MS is that the symptoms can be invisible. As an
observer you can't see the numbing fatigue ~~ you can't see spasticity ~~ if I
take my medication, you can't see the tremors ~~ the discolored and swollen legs
aren't obvious if I wear long clothing. But most of all, you can't see the
insecurity, the uncertainty, of my not knowing what my body is going to do next.
One minute I'll be tooling along (albeit at a snail's pace), and the next
minute, my leg catches a rug, or something invisible, or just doesn't lift, and
down I go in a completely ungraceful spill!It's the lack of control that's so scary!
And the stupid, vain things! I'm 52 years old, 5'7", and I've worn short skirts
and 3" spikes all my life. I'm now relegated to flats and a walker. Lord, that
sounds petty! But it can do a number on you!I almost think it must be worse for a man than a woman. The macho thing!
And after all the above, I look around every day and thank the Lord for the
disease I have. There's a hell of a lot of inconvenience, fatigue, tremors
causing lack of sleep, numbness in places you wouldn't believe, balance
problems, vision and hearing fluctuations, sensations like electric shocks, and
the ever-present worry about whether it's causing cognitive malfunction (that's
one the doctors can't agree on, but I know it's happening to me!).
But with all of that ~ I'm one of the lucky ones ~ my husband has quit being
quite so much the mother hen, he understands the fatigue, he gets me anywhere we
want to go ~ and most of all ~ I don't have much pain.I see people every day ~ much, much worse off than me ~ house-bound, having to
take so much medication for pain that they're groggy, and worst of all ~ alone!On most days if you asked me? I wouldn't trade!