Is it Me?

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It is me, or do people you don’t know very well say “I’m sorry” if they ask what is wrong with (fill in the blank – with me it is my leg) and you tell them you have MS?

Is it me, or do the “I’m sorry” people end the conversation immediately, and try to discreetly move away as quickly as possible?

Is is me, or do you find all that annoying?

Is it me, or are more non disabled people using the handicapped toilets in public restrooms? Boy, does that piss me off (no pun intended). And when did being a large person become a disability?

And speaking of bathrooms, is it me, or does it seem like you are as far away as possible from the nearest bathroom when you need one and are at work or in a public place?

Is it me, or do more non-disabled people park in handicapped parking spaces than before? Either that or I happen to notice it more because when it does happen, the next available spot is a long walk from where I need to go.

Is it me, or do you hate the term “handicapped”?

Is is me, or do you have a greater awareness of other people who have a disability of some kind? I sure hope it isn’t because there are more of us than ever before.

And speaking of awareness, is it me, or are you more aware of your surroundings since you were diagnosed? I have to be, especially when there are a lot of people around, because one mistimed bump or stray cord laying across a floor might create an embarrassing fall.

Is it me, or do you find people going out of their way to open a door for you in a public place?

Is it me, or does that annoy you? Listen, I appreciate the motivation behind the gesture, and there are times, like when my hands are full, that I am happy for the help. But I’m not an invalid, and like to fend for myself most of the time. Is that being overly sensitive?

Is it me, or are you paying a lot more attention to healthcare politics than ever before?

Is it me, or are you more aware of your insurance benefits, and all the rules and regulations regarding getting services approved for payment, than before you were diagnosed? (Confession: this is a cheat question because in my line of work I have to know all this stuff. But I need to fill the page, and thought it was an appropriate question.)

Is it me, or do your parents (if they are still alive, or were alive after you were diagnosed) treat you like a little kid because of your disability?

It is me, or has your diet become a lot more important than it used to?

It is me, or does your body ache more when you get out of bed in the morning than it did when you went to sleep the previous night?

Is it me, or has the amount of medication you’re taking increased exponentially since you were diagnosed?

Is it me, or do you not bother to read all the literature that comes with those drugs? I typically don’t, and never have, because reading it can make you think the stuff you are about to take will cause something a lot worse than what you have. Aren’t lawyers wonderful?

Is it me, or do you not fully understand why some of the stuff you are taking is supposed to work?

Is it me, or do you discover that the stuff you are taking actually does work, but only after you stop taking it?

Is it me, or does it seem that most, if not all, of the options available to ease your symptoms involve pharmaceuticals?

Is it me, or do you appreciate friends and family more since you were diagnosed?

Is it me, or are there a lot of things you used to fret over that are no longer important?

Is it me, or did you begin thinking about your mortality much sooner than you could have imagined?

Is it me, or did going to the bathroom become a much bigger production than you thought possible?

Is it me, or did going down the stairs become potentially life-threatening?

Is is me, or does the same thing apply to taking a shower?

And since we are on the subject of hygiene, is it me, or can you no longer wash the bottom of your feet?

And, is it me, or do you not even think about taking a bath anymore because you won’t be able to get out by yourself? Or because of what the heat of the warm water might do to your symptoms?

Is it me, or is condo-living starting to sound pretty good?

Is it me, or has walking on a snow covered sidewalk, driveway, or parking lot, become like walking on a tight-rope, or in a minefield?

Is it me, or do you only fall when you aren’t paying attention?

Is it me, or do you want to crawl into a hole and disappear when this happens in public?

Is it me, or can you gain weight more easily than you used to?

Is it me, or do steroids make you ravenous?

Is it me, or do you bleed more easily from all the drugs you take?

Is it me, or were you resistant in the beginning to accept help because of the misguided notion that you would be giving up your independence?

Is it me, or has that shit stopped?

Is it me, or do you think that your spouse and kids were somehow cheated because of your disability?

Is it me, or do you feel profoundly guilty that you can’t do as much around the house as you used to, and your spouse/family have to pick up your slack?

Is it me, or are you doing more than you probably should because you try to minimize the slack they have to pick up?

Is it me, or has daily life become a lot more expensive since you were diagnosed?

Is it me, or do hallways seem overcrowded when another person enters your space?

Is it me or do you no longer walk in the middle of a hallway? I’m always off to the right side, hopefully with a handrail or a wall within easy reach.

Is it me, or are airports a lot more intimidating?

Is it me, or does it take you longer than thirty seconds to get into a vehicle?

Is it me, or do you avoid support groups. I think I don’t go to them because I don’t believe I’m that bad off, and seeing others who are would scare the hell out of me. It’s that denial thing I keep talking about. Who knows, maybe I’d be pleasantly surprised.

Is it me, or did you become a expert on all matters related to MS within a very short period of time?

Is it me, or isn’t a lot or this really comical?

Is it me, or doesn’t a lot of this really, REALLY suck?!

 

FYI: One of my readers, whose mother has progressive MS, started a company, in part to  help her mom stay independent and as safe as she possibly could, with help, of course. She sent me a link ( http://www.helpmedicaldevices.com ) to the company. I checked it out. While it lists a lot of stuff that might be better suited for frail seniors, there is also a lot on the site that people with MS-related mobility issues could find helpful, so I thought I would pass it along.

 

 

 

Attitude

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I just finished reading a post on a blog called Fuck MS (you should check it out, by the way). When I saw the title I smiled and laughed, because that has been my attitude from day one. And when your are dealing with an illness or disability, attitude is everything.

When my body began to go haywire ten years ago, I knew something was wrong, but everybody I went to couldn’t give it a name, which was frustrating. As the process to figure out what this was continued, my imagination ran wild, and not in a good way. When my MRI came back and I learned it was MS, the verdict actually came as a relief. That sounds silly now, but when you think it might be something like ALS, Multiple Sclerosis isn’t bad by comparison.

Then shit started happening, and the slow erosion of my mobility commenced. Through it all, my reaction to each hurdle that presented itself was annoyance and defiance, not sadness or despair. I certainly wasn’t happy that my leg started feeling like an overcooked strand of spaghetti, but pissing and moaning about it wasn’t going to change anything.

I’ve always been good at compartmentalizing things going on in my life, and I’ve placed my disability in the attic, tucked away with all the other junk that I don’t have any use for. I hate the word disability or handicap, even though it applies, because I don’t want that to define who I am. I also don’t want people thinking of me that way. I’m still the same guy I was twenty years ago, it’s just that I walk funny now, have no balance whatsoever, and can’t do a lot of things I used to. Many of the things I can’t do, like yard work, I don’t miss at all.

I didn’t always have this attitude. I use to bitch and moan about a lot of petty things, and it took becoming afflicted with MS to realize how good I had it. Family, friends, and having love in my life was something I no longer took for granted. So now, I try not to sweat the small stuff, other than the Red Sox.

Granted, I still have full use of my arms, hands and the other leg hasn’t been touched. I still work full time, still drive a car, and still maintain the standard of living we had prior to the diagnosis. None of that has changed. I can still go for walks, although I’m slower than molasses and need a cane, a brace that lifts my foot, and a knee brace.

I know statistically that there is an excellent chance I will wind up in a wheelchair some day, and I also know I won’t be happy should that day come. In some ways I am trying to prepare for it, particularly in terms of housing and career, which is the primary reason I have started to write.

Is that denial? Perhaps. Maybe my tune would change if I was in constant pain, or if more of my body was affected. But still, every day above the dirt is a good day. Having your glass half full rather than half empty is really important to not letting something like MS swallow you whole and take over your life.

As they say, ignorance is bliss, so I’ll continue living in this self-constructed cocoon as long as I can until something punctures it. Until that day comes, and I hope it never does, I’ll remember that blog title, and wear it like a shield of armor and honor: Fuck MS!