The following will be an eight part blog mini-series describing in great detail my various MS symptoms, and how I feel about them. I’m doing because I finally realized that in either face-to-face conversations or those involving online private messages I still haven’t fully come to terms with this horrible disease. Call it an exercise in mental health if you will. I simply feel like this NEEDS to be discussed, not just for my sake but or those who have MS and don’t know a lot about it.
FATIGUE
Fatigue as it relates to MS is not unlike how morning sickness might affect pregnant women – it can’t tell the time of day. Too often I wake up in the morning as exhausted as if I had stayed up all night, even in situations where I went to bed early. Rather than jump headlong into any physical activity I try to do something fun and engaging to stimulate my brain. The goal, obviously, is to push past that fog clouding my basic functions so that I’m not completely useless. Sometimes it works, and there are other occasions on which it doesn’t. Regardless, it’s always better to try than to sit there and let that dreaded fog swallow me whole.
Here’s an example of an incident type that leaves me with little or no strength to fight – car rides. It doesn’t matter if my wife and I are driving around town, or taking a long trip out of state. I fall asleep every time despite how much I fight the urge to close my eyes. The worst part is when I can’t explain why I dozed off in the first place. I get confused, irritable, and defensive. I hate showing that side of my personality, the easily-frustrated aspect of a normally easy-going attitude. It makes me look like the bad guy, but inside I feel much worse.
WALKING DIFFICULTY
Growing up I prided myself on being a fast runner. I always got such a thrill out of it. Whenever I moved incredibly fast with my feet firmly on the ground and my hair flapping in the wind, it literally felt like I was flying. I was in Track from 2nd to 6th Grade, competing in numerous meets. I walked/ran everywhere, mostly to and from school. I wasn’t very good at skateboarding but it was truly a sight to see whenever I had my roller blades on. Being able to use my legs that much gave me a strong sense of freedom and independence that consistently gave me a natural high.
Back in 2001 I suffered a major leg injury. I attempted to save a cat from getting mauled to death in my back yard and knowing there wasn’t much time to go the long way around, I aimed to clear the wooden picket fence in one jump. Instead of achieving that goal, I landed in such a way that a couple slats impacted both of my legs, one on each side. The pain came instantaneously and was nothing short of unbearable.
I saw my then-regular doctor soon after but the reaction I got from him was not what I had expected. He gave me a physical therapy pamphlet and sent me on my way. No scans of any kind, or medication. It left like such a slap in the face. I went home, and quietly endured the excruciating cramps until I discovered the only thing that could quiet them – alcohol. Lots and lots of alcohol.
I don’t think I need to fully express how terrible of an idea that sounds. In the moment, I was desperate. Exercising wasn’t working. Pills were non-existent. Between the physical and emotional pain I dealt with on a daily basis, it’s no wonder why I became an alcoholic. I longed for the day when I could run like I used to, without having to stop because my legs couldn’t take me any farther than a block.
As I entered college in 2007 I stopped drinking altogether. I focused on my education 100 % and let the pain go from a loud roar to a hushed whisper. I got straight A’s and maintained a 4.0 in my first year. Rather than walk to each class room, I ran. I even joined a gym for physical therapy and soon discovered that I was insanely good at it. Back then my fastest lap time had been 9 seconds. It’s now 6. In December of 2008 I had a mild stroke while on campus, which essentially destroyed all the progress I made.
Lately my mobility has taken a turn for the worse. I can’t run at all and can barely walk at all except for when there’s proper motivation. Disneyland, Relay For Life events, stuff like that. Grocery shopping is definitely not in the same category. Wal-Mart on a Sunday in particular is a living nightmare.
The day is coming soon when I’ll need a wheelchair, and that’s something I would very much like to avoid if possible.