Regarding fatigue, there has been a cycle in my life.
- When I was a baby: just fall asleep, wherever, whenever.
- When I was a child: just take a nap.
- When I grew older: just go to bed early.
- When I was in the Army: Suck It Up, Cupcake!
- After my Army days: just don’t go out tonight, go to bed early.
- When Eleanor was born: just take a nap.
I long for the days when I will be able to fall asleep, wherever, whenever. For now, I am in a constant state of limbo caused by my multiple sclerosis: Fatigue.
When does fatigue set in? When does it replace other words?
Tiredness?
Weariness?
Weakness?
Lethargy?
Laziness?
This is not only a battle with my multiple sclerosis, but it is also a struggle with every perception I face, with myself and others. Many symptoms have their telltale signs: a limp, my struggle with a fork, slurring and staggering, even my oddball forgetfulness, there are usually signs or indicators how ‘something is not quite right’ with KB.
My fatigue is something different. I may be groggy and lethargic, as if I have been up for the last 47 hours straight. Chances are, however, that is not the case. More likely, it seems as if I have plenty of energy, but I just don’t want to do anything except sit there and watch TV, drink a beer with my friends, or stare at the computer.
Is it physical? Mental? Emotional?
Yes. Yes. Yes.
Fatigue is the loss or degradation of energy, physical, mental, and emotional. I track so many points of data in my day, I’ve developed the ability to forecast fatigue:
- When I don’t get enough sleep (less than six hours of sleep, two or more days in a row).
- When I get too much sleep (greater than eight hours of sleep).
- When I don’t have enough sugar my diet/too much sugar in my diet.
- When it’s too hot/too cold.
- When I exercise too hard or too long/don’t get enough exercise.
- When I follow my regimen for too many days in a row/I have too much flux in my schedule.
-When I push myself too hard/don’t have enough activity in my day.
Then, there are those days where everything is perfect. My sleep, diet, exercise perfectly blend24 with the weather, and with all the outside demands of life. On those rare, jewel-like moments, it’s a 50-50 crapshoot as to whether I’m going to have energy or not.
I’ve never been middle-aged before. Maybe some of it has to do with my 45-year-old frame… I don’t know.
When Brie and I moved to Oregon, I fell in love with hiking and climbing. Nothing compared to the feeling of pushing my body up and down steep trails for hours, in peaceful solitude, with only my thoughts and music to comfort as I pushed my body harder. The first few hikes absolutely kicked my ass within 45 minutes. I thought it was just this Bronx-born body rejecting nature until a friend of mine recommended getting a set of trekking poles. Something simple like taking that added struggle of balance away made all the difference in my energy level. My speed increased 3x over while endurance seemed limitless.
With my MS, the added struggles of balance, strength, memory, coordination, etc. take their toll on what I can do. As my activity decreases, so does my ability to push the next day. It’s a cycle that feeds on itself…
Here’s about all I can commit to you. I will never use my fatigue as an excuse to avoid something. I will proudly proclaim any reason I am not participating: I don’t like it, I don’t like you, I have something better to do, I think it is stupid, I don’t like (fill in the blank).
If, instead, I just avoid participation with no excuse offered, my wants or likes are irrelevant.
I can’t. For the moment, I just cannot do anything. I promise, though, when I can, I will.
Unless I really don’t like you (in which case I will tell you).
But for now, I’m off to the gym. My body is like it has some energy for physical therapy. I hope it lasts the drive there…
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Fatigue
Occurs in about 80% of people, can significantly interfere with the ability to function at home and work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
Never Stop… Never Quit…®
Kevin Byrne
Portland, OR
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