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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

thanks for understanding, it helps that
someone can identify with my problems.

I always have 2 fans blowing on me. I can't
have them on my face, because the trigeminal
neuralgia will kick up. But I have them
blowing on my body/legs. They push the
hot air around, don't offer any relief
from stuffy, stinky air.

I buy water by the liter bottle and drink
one each AM and one in the PM. Yes, I
have to go a lot. That's why I freaked
out last June when our water was off and
we were required to walk in the 100+ heat
over 100 yards, and up 3 flights of stairs
to the next building. I refused. This
was before I knew I had MS, but I knew
I could not make it to the bathroom under
those conditions! I'd be on the way back
from one visit and have to turn around
and go again, I walk so slowly. The bosses
called me in, questioned my bladder/bowel
habits, and asked was I maybe using too much
time going to the bathroom when I should
be working, and maybe that was a problem
they should investigate? !!! I'm SERIOUS!
I had to tell my male boss my bathroom

I laid out at the pool every Sat/Sun for
at least 4-6 hours at a time,
until 4 years ago,
and it got to the point I could'nt think
straight or walk after doing it. I had to
quit walking or running, and I used to
do it at 5 PM, when it was over 100 degrees!
I'd walk until the sun went down. I liked
to sweat. :)

No way can I even consider that, now. I have
enough trouble from the car to the house.
It is HOT in Texas, and heat is just death
to me. The fact that I can't tolerate
heat and exercise is one of the major life alterations for me -- it was one of those
things I LIVED for. So, for me to stop --
and I did it long after I should've stopped -- is a very big deal. I had to really be
sick and disabled in order to stop something
I loved.
Heat, and stress, start that odd
off-balance, confusion thing that just
puts me to bed. That's why I don't understand
"exacerbations" people talk about, because
I have one every time I get overheated, which
doesn't take long! Very frightening. I mean,
I literally cannot think. My body just
throws a fit.

I come home and lie down in 65 degree
temps at noon, and after work, every single
day during the hot season (that's 9 months
of the year) I get into a cool tub, as
soon as my work clothes are off.

My bosses are the same way about my
sick/vacation leave. Just jerks about
it. I'll never forget how my relationship
changed with my immediate supervisor,
with whom I had enjoyed a great relationship,
it was an eye-opener:
After many tests when I went blind, I
finally consented to a spinal tap. Needless
to say, I was terrified of the test, the
results, etc. Afraid of that dreaded
spinal headache, the whole bit.
I emailed
her on a Wednesday that I would be having
a spinal tap the next day at 9 AM, Thursday,
and would be off Friday to recover from
the procedure. She emailed me back,
immediately, saying: "Am I UNDERSTANDING
this correctly? You will be off Thursday
AND Friday????" Just exactly like that.

Now, how would you take that? I took it as
disbelief that I would need so terribly much time off. I wrote back that not only did
the doctor insist that I rest for 24 hours,
but I was pretty sure that I didn't want
to be running around after having my BRAIN
fluid drained. I was furious. I mean,
my god, she treated it as if it were a
blood test! I didn't move a muscle for
2 days, and I drank coffee, cokes, and
ate coffee bean candy from Costa Rica,
and I didn't have a headache, thank God.

But there was no way I was going to
jump up the day after a spinal tap and
run back to work! It's as if they have
no brains, those idiots. She was miffed
at me for months, that I would take
such a long, long, long time for a mere
spinal tap.

They go out of their ways to be ignorant
and insensitive, I think. My god, if
an employee of mine had something, I'd
research it, at least a little bit, so
I'd know what to expect. They could
give a rat's patootie how I feel or
what it is. Like I said, they are more
concerned about someone who has migraines,
which can't even be proved, right? When
I told them I had trigeminal neuralgia,
the most intractable pain I can even
imagine, they looked at me stupidly,
and I said "it's sort of like a major
MIGRAINE of the face" thinking that was
language they could understand.

20 years I've been there. Almost everyone
else, including the bosses, has been there
less than 5 years. This is a state university I have served faithfully for
20 years, plus I graduated from there and
loved it as a student. I am SO close to
jumping over the heads of these idiots
and going straight to the president's office.

Except I don't know what I'd say. My mother
may just do it for me, she is so angry
with them. My parents are prominent figures in town, with friends who give money to this
place, and I'm just hoping it gets back
to someone who can do something. I am
hoping a little word to the higher-ups,
at a cocktail party, or at church or
something, will finally point up that
I work for idjits.

I didn't go in, today. They stress me
out, and then I'm no good for a couple
of days. I could take Valium to calm
the nerves from that quivering, bouncy
feeling inside, but I didn't want to. I
rested, relied on my cane, and took it
easy. When I wasn't feeling guilty about
being off work. I have a fear of getting
fired, even though I know I could slap
a suit on them. But they are wily, I'm
afraid they will finagle a way to plant
something on me. I work for a sneaky,
nasty bunch of people. I do not know
how they sleep at night.

Don't be an idealist with MS. It just
doesn't work. :) That's my little piece
of advice for the day!


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