Multiple Sclerosis and the Ugly Truth

What’s so bad about a little fatigue?

“I am sick and tired of being sick and tired….”

I didn’t write the quote above. Nor did I credit it to anyone as I am not sure who to credit it to. I have heard it so much and seen it so often I think it could be attributed to hundreds, no thousands of folks, especially if those folks have multiple sclerosis.

(To the real, original quote author, we MS’ers are taking over your quote; we’ve earned it. Perhaps you should go take a nap.)

Here are some other quotes about fatigue that I find interesting and can credit to its authors. At least, I think I can.

“Sometimes it takes me more than 8 hours to get nothing done.” Snarkecards

“Going out with other adults is 90% explaining to each other how tired everyone is.” Also Snarkecards

“We’re all tired. Yesterday my pee was so tired I had to wake it up with a shot of whiskey before it would come out.” Alan Bates in the movie The Rose

Ok, the last quote has nothing to do with MS fatigue; unless Bette Midler’s character in The Rose had MS. She certainly had a suitcase full of drugs to rival that of most of the MS’ers I know.

A recent poll of my fellow MS’ers on a Facebook page asked what we missed most about our Pre-MS life. Many said energy.

The National MS Society’s webpage estimates that 2.3 million people have multiple sclerosis. They also estimate that number is low. And they estimated that 80% of those people are dealing with chronic fatigue as a result of their MS.

What does that really mean?

It means there are a ton of exceptionally tired people existing on the planet.

And the brainiacs say the zombie apocalypse isn’t real!

Did you know that the word ‘collapse’ is a synonym of the word ‘fatigue?’ I forgot where I found that but I swear, I did see it somewhere. Here are some other synonyms of ‘fatigue’- weariness, lethargy, and washed out, just to name a few of my favorites.

The Free Dictionary by Farlex defines fatigue as “the weakening or failure of a material resulting from prolonged stress.” For MS’ers, we are that material.

The point of this particular blog post is for me to show an example of what MS fatigue looks like in my world.

“I’m so tired just the thought of brushing my teeth makes me want to start sobbing.” Yvonne deSousa

I wrote that one. I really did.

“The fatigue is like the fatigue and over all body aches you get when you have the flu, multiplied by 1000.” Me I wrote that one too.

Recently I was trying to explain to my mom the difficulty of consuming a wholesome, healthy snack, an apple. What could be better for you than an apple? Of course, the first thing you have to do is wash it carefully due to all the pesticides that are used now. Then you eat it. It should be that simple.

But for me, it’s not.

Every time I bite an apple, I take a huge bite out of the inside of my cheek; no longer healthy unless juice from the apple dissolving into an open, bloody wound is nutritious. So I bought an apple corer figuring that breaking the apple into smaller pieces might save me from myself. Except the apple corer was hard for my already weak hands to maneuver and to find the strength to cut through the apple completely.

My mom suggested that I peel the apple first. This involves my super tired hands grabbing a sharp instrument to peel away the healthy apple skin before then coring the apple. Suddenly an easy snack has used up the energy it would take for most people to prepare a four course dinner and all I want to do is rest.

And the apple itself is now chunks of something brown and rotten as all of this took so long for me to accomplish that the apple has given up hope and become tired too.

Many people without MS say why don’t you get enough sleep?

The irony is that sleeping or not sleeping has absolutely no bearing on this type of fatigue.

Other people may ask, “what’s the big deal about fatigue? Lots of people are tired and they just have to deal with it.”

And so do MS’ers, but it’s not always pretty.

Every year my church holds a special mass for fishermen to celebrate our fishing heritage and to pray for safety and good fortune. I love this mass and it’s my favorite of the year- even more so than Christmas or Easter. The church fills up, and yes, even more so than Christmas or Easter.

The altar is decorated and the Bishop of our diocese, or some other mucky muck on his behalf, celebrates the service. My friend and I carry the gifts to the altar.

For non-Catholics the gifts are the unconsecrated bread and wine, not a box from Tiffany’s or an ipad.

This year I tried to balance as well as possible but the mass follows lots of other celebrating and those celebrations took place among the extreme heat and humidity of early summer. I went to bed early and did my best to rest up. It was very important to be non-fatigued since when MS makes you fatigued, everything else ratchets up considerably; your weakness, your clumsiness, your cognitive difficulties, your balance issues, your poor vision, etc.

Whatever MS makes difficult for you, it makes even more difficult if you have even the slightest bit of fatigue. This was worrisome as far be it from me to drop the soon to be blood of Christ on the altar before I am able to hand it off to the priest.

If he drops it, well then that’s his problem.

I pulled into the lot of my church and was rudely greeted by a fellow parishioner instructing me where to park. I was not able to park in the spot he recommended (long story,) and politely tried to explain this to him.

Seems he took his parking duties way too seriously and began to argue. This caught the attention of another parishioner and a small scene ensued and my sensitive feathers got ruffled.

Had this situation happened before MS I would have,

Taken the high road by ignoring the parking dictator and felt lousy about it at the time but better for it later

Or,

2. Used some non-Christian language to humiliate him immensely, causing me to feel great at the time but lousy later.

What my MS fatigue caused me to do instead was cry.

Yes, an embarrassing, inappropriate, obnoxious, ugly cry.

I tried to get to the bathroom to pull myself together but there was a long line. I tried to turn away from people to pull myself together but people saw me anyway. The more people asked me what was wrong, the harder I cried. When, through my sobs, I could only say that the problem was a minor parking dispute and not the end of the world as we knew it or a zombie apocalypse, they backed away.

I’m sure they were thinking ‘drama queen,’ ‘cry baby,’ and ‘lousy make up job’ as my mascara was now all over my face.

If I had my way I WOULD NOT have had a breakdown during my favorite religious event of the year.

It was not my choice to lose it over something completely minor in the grand scheme of life with or without multiple sclerosis. I could neither predict the breakdown nor could I blame multiple sclerosis directly for it.

I COULD blame the parking guy.

But I am supposed to be working on forgiveness, peace, love and all that other better human, better spirit stuff.

I can however, blame multiple sclerosis fatigue for making everything about my mind, body and psyche weak, for taking over all control of my senses, for once again doing what it was going to do despite all my best efforts to stop it.

And of course, there’s no way to explain this to everyone who saw my breakdown, that it was really MS fatigue’s fault, unless I happen to put it in a blog post….

That is the ugly truth of MS and the horrible fatigue that comes with it. It is frustrating, uncontrollable and, yes, let’s face it, ugly.