Let me explain…I have a family and we like spending time as
a family. Just as important (sometimes even more important) is my relationship
with my wife, and when we’re not with the kids we like to spend time together
as a couple (it’s what we signed up for).
To me, MS is a very painful disease and it hurts just to be
alive, but I know what to expect. I also know that my balance and coordination
isn’t what it once was, and so I play my activities on a much safer playing
field (for the most part). There are other issues that come and go and we as a
family plan accordingly; plans change, we do this instead of that, and so forth
and so on...no big deal (years ago it bothered us more…yes, but now its second
nature).
My point is that no matter what issues come and go and what
issue stay for good, that we are able to adapt and still go on with our lives; except
for that one little word that some people have a hard time spelling…FATIGUE.
Fatigue is a killer of plans. I’m not talking about being
worn out from being out all day…we plan for that. I’m not talking about planning
a big activity on Saturday knowing that I’ll need to take it easy on Sunday
because I’m done and need to recover…we plan for that.
I am talking about being so exhausted that you can no longer
function. I have never been up for a week, but imagine that (crack heads don’t
count as you’re imagining this scenario). Imagine the most tired that you have
been and then multiple it by 10, by 100, by 1000. Imagine that you fell asleep
while driving, wrecked the car, then continue sleeping; not because you’re
injured, but because you are too physically tired to get out and save yourself
(hopefully the car is not on fire because you will die).
“But officer he only hit a bush.”
“Yes ma’am he did, but the Secret Service wasn’t too happy
with him so they lit is car on fire. I don’t understand why he just didn’t get
out.”
“He has MS.”“Couldn’t walk?”
“No, just tired.”
(That “joke” was for my friend who absolutely hates the Bush family)
I went to bed really early on Christmas Eve, which means before midnight; something unheard of being a parent. Christmas was pretty low key. Up early, but not earlier than normal. I cooked breakfast and Christmas dinner for everyone (in fact I cook the majority of the meals in our home…so nothing new there). Christmas was filled with opening presents, cooking, eating, and board games; nothing that a “normal” person should get tired from. I knew the big day was coming, so we didn’t plan any big days out prior to the 25th because I knew that I needed to play the role of host and lead the charge.
That afternoon I started dragging and felt a little tired.
Christmas evening…BAM it hit me. Out of literally nowhere, for no reason,
exhaustion hit. I laid down on the couch and took a nap. Hours later I woke up
to go to bed. Slept all night, and woke up the day after Christmas. I forced
myself to get up because I was still very tired, but I needed to get up. I made
it to the living room, but couldn’t maintain being awake. I went back to bed
and slept. I slept through Boxing Day, and on the morning of the 27th
I woke up, tired but functioning. Later that day I napped again.
It was somewhere in the neighborhood of 36 hours I slept
(not including my nap on the 27th).
Being tired is one thing, but MS (at least in my case) takes
it to a whole other level. A level that can’t be described or understood.
As a family we can overcome pretty much anything, but when
exhaustion and fatigue set in, its game over and that is why it is one of the hardest
and most frustrating parts of my life.
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