Tuesday, May 15, 2012

The 10 Worst Things About MS

Angry Talk (Comic Style)
(Photo credit: Wikipedia)
I’m referring to my personal situation. This disease attacks everybody in a different way, and therefore each person's experience with MS is unique.

High Costs
This disease is damned expensive. Last year I had $28,000 worth of unreimbursed medical expenses. This was in addition to even more medical expenses that were covered by insurance. Sure, it's a partial tax deduction, but I'd rather not have the expenses in the first place (a partial tax deduction does not make up for the expense, not by a long shot).

I Can't Do All the Fun Things I Used to Do
This is perhaps the most obvious drawback to having MS. I can no longer: walk, drive, swim, run, stand, lift, grab, etc. I have difficulty traveling and socializing, but I still do some of both.

Poor Health Due to Lack of Exercise
Everywhere I turn there is another news story about how important exercise is for overall health. It’s the magic pill, the golden egg, the cat’s meow. Every time I come across one of these articles, I am reminded that it’s not only the devil I know that may be my downfall, but also some affliction associated with my MS-induced, sedentary lifestyle. Since I can't do any meaningful exercise, it seems likely that I'm destined for any number of potential diseases like diabetes, cancer, heart disease, etc.

Going to the Bathroom
Even at home it’s a lot of work, and it takes a lot of time. But, when I'm out in public it can be very difficult to find an accessible bathroom at all. As a result, there are some places that I simply can't go, or places where I have to strategically restrict my intake of fluids, which is generally unhealthy but often the only practical solution.

Feeling Isolated
When I stopped working and later stopped driving, it was inevitable that I would become somewhat isolated. I've made lots of internet friends, but there's still that feeling of seclusion when I sit home for long periods without direct human contact. I'm looking forward to enjoying my new neighborhood this summer. That should help.

Uncertainty about the Future
If you feel confident about your future, you're likely deluding yourself, and I say this in the most supportive way. Each and every one of us could experience a life altering or life ending event at any moment, and we should live accordingly. It's just that for people like me, the probability of negative future outcomes is much higher than average.

For example, after our hugely successful vacation in the Bahamas earlier this year, the whole gang started talking about repeating the trip again next year. But I just can't plan that far ahead. I don't know what my life is going to look like in 6 or 12 months, so I am hesitant to make commitments more than a few months out.

Everyone plans for retirement. I can't even plan a year ahead, let alone 10 or 20 years. Interestingly, because of my disability, I have penalty-free access to my IRA retirement accounts, as if I've already reached retirement age. Should I spend some of that money now, while I can enjoy it, or should I save it for this uncertain future of mine (of ours)?

I Feel I'm Holding People Back
Sure, I'm the one who’s disabled, but if you choose to spend time with me then your life is at least temporarily constrained by MS as well. Clearly, people go out of their way to downplay this sentiment. Nevertheless, the perception that I am holding people back does wear on me.

I Can't Work Anymore
I miss all the positive aspects of employment, including income; sense of accomplishment; sense of being engaged in worthy endeavors; and spending time with customers, vendors, and coworkers who were some of the nicest people I knew.

I Look Scary
I'm so used to being in a wheelchair now that I often don't give it a second thought. Then, I'll pass by a mirror in a store, for example, and I'll think something like, "Damn, you look really, really disabled in that wheelchair."

I feel like wearing a sign that says, "It's okay. I'm okay." I think if people knew that I'm leading a contented life then they would be more comfortable when they encounter me.

I usually have Kim take the headrest off my new wheelchair when we’re going out in public. I just need it for the full recline mode, which I only make use of at home. Not having the headrest attached makes a huge difference in how scary I appear.

I also attempt to counter this perception problem by being outwardly engaging and friendly, which I wrote about here.

I Can't Go Places

In the history of mankind, wheelchair accessibility has never been better than it is now, but it still sucks, and it always will suck. There are just so many places I can’t go.

The Treatments
If the disease doesn't get you, the treatments often will. Many MS treatments have serious side effects, even death. They are often administered as chemotherapy, daily injections, or monthly infusions. Only recently have any oral medications been approved, and of course they don't work for my type of MS. Right now I'm getting chemotherapy drugs injected into my spine every eight weeks. That's a lot of fun.

I'm sure I've forgotten to mention some obvious drawbacks. Maybe that's due to my cognitive abilities having been diminished by MS?

In the interest of equal time, my next post will be: The 10 Best Things About Having MS (seriously).

Did any of you notice that there are 11 items in my "10 Worst Things" list? I couldn't pick one to eliminate.
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  1. Mitch, while I'm not permanently in a wheelchair -- yet, I still share many items on your list. I'm glad you listed the financial aspect first -- it's the major drawback I've encountered, which leads to other problems along the way. I've always admired your positive attitude, so I look forward to the flip side of the worst things!

  2. I also share many on your list, except for not working. I like not working, but then, I wasn't really on a career path as you were.

    You did mention the financial issue, but you didn't mention having to deal with the bureaucratic hells that are Medicare AND DSHS. Perhaps you just have better insurance than I did.

    I can't wait to see your best ten. I know that good things come along with the bad - always do.