CHAPTER FOUR: YOU’RE JUST NOT THAT INTERESTING ANYMORE (with some necessary editing)
— I Have MS. What’s Your Super Power?: A Common Sense Guide to Living With MS, Headline Books 2016
CHAPTER FOUR: YOU’RE JUST NOT THAT INTERESTING ANYMORE (with some necessary editing)
Okay, the sad but honest news is that having MS is a novelty that gets less interesting the longer it attempts to hang out with the crowd. The initial diagnosis receives rave reviews of “OMG! What can I do? If you ever need anything, I’m only a phone call away”, or, “Call me when you’re feeling down. We’ll talk.”
That lasts for a few weeks, maybe months, and possibly the “to death do we part” participants may hang on for a few years. And then, reality sets in as MS robs its victim of more and more abilities for more mundane hobbies and interests.
I was the party girl, always game for a cold drink and some quality socializing. And then, bang! My medication took precedence over beer and my life’s purpose became focused on my health, my son, and my survival.
My routine centered on my injections and the potential side effects of every dose. I had to make sure the ice packs were in the freezer and my car was nearby. I became addicted to Sponge Bob and couldn’t wait to cuddle on the couch with my son to watch reruns about Patrick the Starfish and Mr. Krabs. The thought of hanging out with the “girls” became secondary to my desire to be a better mother and to nurse my MS when it demanded attention.
For eleven years I self-injected Beta Seron, which limited my time “out on the town” and eliminated wearing bathing suits and shorts in the summer unless I wanted to show off my assortment of lovely injection site bruises. Football season no longer held the appeal it once did when my enthusiasm waned in the shadow of walking from the parking lot to my seat, sweltering under the midday sun, stressing out over being the DD (since it wasn’t convenient to “tail-gate” and do Beta Seron), and spending my entire day at the football stadium instead of taking advantage of those few hours in recovering for the workweek ahead. I could no longer swim well, walk appropriately, go dancing, take part in an aerobics class, tolerate a day of shopping, drive after dark (developing macular degeneration in one eye), or chase my child around the playground. I no longer wanted to be too far from home or risk the humiliation of public intoxication accusations.
If the critical public only knew the truth about MS. I often wake up feeling cheated of something I didn’t even have time to partake in. It is no fun waking with the killer hangover headache that does its job expertly by “hanging” on ALL DAY LONG.
No amount of water or ibuprofen can faze the sucker. My hands get shaky and I get nauseous. My eyeballs even hurt and I swear I can feel the very core of my hair follicles. The light is excruciating, but I know this was not a migraine. Of course, my drop foot is more pronounced and I cannot trust myself to maneuver a car or even try to read the newspaper without shaking. The bugger about all of this is that I had not had even a faint inhale of alcohol to cause this.
But, this is just one day. Tomorrow will probably be different.
The point is… why does MS have this crazy effect on our bodies? Is it better to indulge in the very things that usually make us feel not so great afterward in order to fend off the ill effects of MS? Is this why some MSers use marijuana (legal, I hope) to ward off MS?
“Pot” has never been something that interested me. It has never given me the thrill that others seem to derive from its use. Even a very close family member has encouraged me to try the eatable version of marijuana because he says it will steady my nerves (really?) and help me venture into that nirvana state of “so what” in which I will forget my MS pains and enjoy life more fully. Well, sorry. I do not see feeling paranoid about my physical and mental condition as stress-free. Besides, I do not have any pains I think marijuana is going to erase. But what works for one doesn’t always service another. Always remember that MS is a designer disease. It is a thumbprint. MS is extremely personal.
So, back to this chapter. What other ailments do I experience on a day-to-day journey?
*My sinuses have always played a large role in my life. Right, this very minute, I am sniffling and snuffling and blowing my nose. It is year round and most common in the morning. It really becomes embarrassing when standing in front of my classroom and snot runs free-style down my face. Tissues are a must-have.
*When I was still having my “monthly” I swear I experienced probably the WORST cramps known to humanity. NO joke. Complete with all the indecencies a gal could ever hope for. I will not go into detail here. Text me if you want to discuss the horrors of womanhood.
*My legs ache and have for years. I remember being quite young and begging my mother to rub my legs. I still wish someone would perform this service for me. In fact, I sometimes fantasize about hiring a professional to give me a daily deep muscle foot and leg massage.
*Fatigue is big, but I have learned some tips on fighting that. Surprisingly, one is to not oversleep. Periodic “catnaps” are wonderful but rarely fit into a work schedule. I understand this is not always feasible, and I truly believe our country should think about adopting a more Mexican outlook on life. Why can we not have a national siesta rule? Working folks, students, full-time parents, medical personnel, coal miners… I cannot think of one individual who would not benefit from this. Just a brief break around mid-day would serve us all well. And I suggest 2:00 PM since that is when I know I definitely feel my body, mind, and mood curl up and say “goodnight.”
So, maybe I am not as much fun or as interesting to be around as I once was, but I know my limitations. And, speaking of knowing about me… if folks stopped by more often, they might realize I probably accomplish more now than I ever did.
Ouch!
Just because someone diagnosed me with an incurable disease doesn’t make me any less Lisa. Sure, I might have a more serious attitude toward self-preservation than I once did, but I am still me. So, if you liked me prior to D Day, my inner self has changed a little.
I know conversing with someone with a disability (invisible or not) makes some people uncomfortable. What does one say? What does one suggest? My advice is “when in doubt,” don’t mention MS. It doesn’t have to be the focus of the social conversation. In fact, I would rather it not be approached at all. I am not embarrassed by my condition (anymore), but I am truly embarrassed for those who feel they must address my health.
We all have (or soon will have) our own list of the most ridiculous/embarrassing MS-related comments. Here are some of mine:
Do you still have that (MS)?
When did you catch that disease?
You must really have it bad if you’re still taking drugs.
Aren’t you afraid your son will catch MS from you?
Oh, you’ve got one of those alphabet diseases. I can never keep them straight.
Didn’t Lou Gehrig die from multiple sclerosis?
Why are you walking with a cane? (This is from the same person who asks every time he sees me).
Oh, you probably wouldn’t want to come (to whatever social event is being discussed). We’ll probably be out late.
I thought you would outgrow it.
My neighbor had MS. He died last week.
Well, guess what? Yes, I still have MS. I plan to take it to the grave with me, but I do not plan to go to the grave because of it. And, I’m still a fairly interesting person. I go to sporting events. I drink beer. I read books and watch movies. I go shopping (if I must) and I prepare meals. I just do it more in moderation and I listen to my body.
Whoa, and someone had the nerve to say that Common Sense was dead?
Definition of common sense
According to Merriam Webster, common sense is: sound and prudent judgment based on a simple perception of the situation or facts
ANOTHER PERSPECTIVE
Some Things I Wish I Knew When I Was Diagnosed
By Devin Garlit
November 18, 2016
https://multiplesclerosis.net/living-with-ms/17-years-ms-things-wish-knew-when-diagnosed?
LET’S SHARE
Tell me about your introduction to the MonSter.
Eager to hear from you,
Lisa, Lady With the Cane
