Sunday, August 10, 2008

I'm soooooooooooo tired

We all get tired, sleepy, run-down, or in need of a nap from time to time. Many people with multiple sclerosis have big issues with fatigue. I'm not talking about I didn't get enough sleep last night; I mean I can barely walk around my apartment, my words are slurring, and I have to go back to bed to rest before I do a face plant.

Fatigue and being tired to the point of exhaustion has been a problem of mine for years. I can recall being in high school and in college and sneaking in naps before or after work and classes. I was young, thin, and muscular then because I ran and worked out often. But, I was always tired.

Now here I am at age 37 and there are days where I have slept for something like 15 hours or more in a twenty-four hour period. Some days I take all my meds at night and sleep for 6-8 hours and bing, I am up and ready to go. Those are usually the days when I can't fall asleep right away and I have something going on the next morning.

Then there are the other days when I perform Olympic napping/sleeping. I take my meds at night, struggle up the stairs and almost pass out on my bed after yanking on my CPAP mask and strapping my arm splints on. I may sleep a solid 10-12 hours without hearing anything from the outside world.

I have a cat, Franklin, and I adore him but if I start to move in the morning, no matter how imperceptible to the human eye, he sees it. He starts to make a loud meowing type noise. He repeats this noise at frequent intervals until I haul my weebley body out of bed.

On the really tired days I stand up, the world is whirling and I am trying to focus and maintain a move I call "open eyelids". I slowly maneuver myself down the stairs and dump hard food in his bowl and scoop out some soft food. Then I drag myself back to bed.

I may sleep for another two to three hours until I gaze over at the clock, once the CPAP mask has been removed and my glasses are on. The clock could read 1:30 in the afternoon. Sometimes I am now able to get up and actually propel myself towards the shower.

Other times, I clomp down the stairs, drink some water and eat something while viewing the TV for an amount of time that could be 30 minutes to an hour. Fatigue, sneaky devil that he is, creeps in again and forces me to plod back up the stairs and sleep until 4 or 5:30.

If I am having one of these days and I speak with a friend on the phone, they know I am in the thick of the fog. My words slur and I make cognitive errors, swapping words out but making enough sense for them to get the gist of what I am saying. Later, when I am finally clear and cogent we laugh about what I said and thank the powers that be that I didn't have to drive anywhere.

How do you fight something like this? I take medication designed to keep me awake, alert and therefore employable. The problem is that it eventually stops working because my body gets used to it. I still go home after work and nap because my body is screaming for rest.

Sometimes people say I look tired. I almost wish they could look inside my weebley shell and see how difficult it can be to just live a "normal" life. I cannot predict which days my body will beg me to keep sleeping. If it comes during a work day, that's just too darn bad. I hope that the meds do their job and I am clear enough to make sense by the time the real work starts.

I'm a happy-go-lucky person by nature but it's so difficult to project that when I can barely concentrate on what is going on around me. This type of fatigue sucks your quality of life right out the window. I go to work, come home to nap, get up and do some work at home, and then head off to sleep around 9 p.m. Repeat five days a week.

People wonder why I don't go out and do more when it's the weekend. People wonder why I sometimes say, "I just can't do that." It's because there is an invisible cloak that I wear all the time. Its name is fatigue and even with lots of medication I can't take that garment off.

You may not understand MS until you or someone you know gets MS (or a similar illness) but trust me when I say I'm tired. I mean exhausted, drained, beyond belief tired that I wish on no one.

Now it's time for me to go back to bed.


Bubbie said...

HI Weeble! Bubbie here. I came over from Ms. Cheese's place.
No one who doesn't have MS can understand the crushing fatigue we experience. Not even well meaning family and spouses. It can be exasperating in itself to come to grips with. You just can't push it away or jump up and "get over it". My doc's excused me from work over 5 years ago, so I don't bother with the legal speed anymore. Although it made me less brain foggy (like I could actually balance a checkbook) I tended to do too much and pay for it later.
Stop by my blog and see what I do now that I am no longer a workin' gal.

SwampAngel65 said...

Hi Weeble! I just found your site today via Braincheese's place. I'll add a link to your site on my blog, and will come back to visit often.

I consider myself extremely lucky that I have yet to experience any massive fatigue. Just the normal "tired after a day at work" stuff, but that's about it. So weird how this damn disease can be so different for people, and yet be the same for others.

Merelyme said...

oh hello there...i also came from linda's place. welcome to the club of us MSers. i will add you to my links now and i will definitely come back to read more of you.

Joan said...

Hi Weeble! Thanks for visiting my blog and letting me know that you exist! I understand the fatigue story, thanks for sharing. I quit working last November due to fatigue.
I want to share my moto (my name is Joan Wheeler): "Wheelers wobble but they don't fall down."