Living with multiple sclerosis is high maintenance, but I’m not
Treating my disease sometimes requires special parts and procedures
When I could still drive, I enjoyed the experience. A car or truck was not just for getting from point A to point B. It was also about the thrill of the journey itself, and I wanted to coax as much as possible from the trip. That meant driving high-performance vehicles, and high performance usually means high maintenance.
Premium fuel, expensive parts that often had to be ordered from other countries, and the occasional special tool were all part of the experience. If the vehicle ever called for something that I couldn’t do in my own garage, it had to go to a specialist rather than just any local mechanic. I didn’t particularly like the three-hour round trip to my closest dealership, but it was a rare occurrence and worth it to take a car to people who knew it inside and out.
In a way, multiple sclerosis (MS) has turned me into a sort of high-maintenance vehicle — if that vehicle could barely move, had the check engine light on, leaked fluids sometimes, and made the occasional strange noise. If I ever was, I’m certainly not high performance these days, but I’m not sure that I fit the exact definition of high maintenance, either.
Merriam-Webster defines the term in two different ways. The first, “requiring a large amount of care or maintenance,” is directed more at an object. The second defines a high-maintenance person: “tending to cause problems or demand attention : extremely sensitive, demanding, or temperamental.” I may fit parts of that second definition from time to time, but I’m generally only the first.
I require a lot of maintenance, but I don’t think that I’m a high-maintenance person. Sure, I can be dramatic sometimes, and I do have a lot of needs, but I’m not demanding, and I definitely don’t feel entitled to the disease that requires so much care.
Keeping me running
Like the example of a high-performance car that I made in the first paragraph, I require a lot of special parts and tools. I wrote about my implanted baclofen pump (or, by its brand name, a Lioresal pump) in a previous column, and though it definitely counts as a specialty part, it’s an extreme example. When I think of special tools and equipment, I think more about mobility aids, lift chairs, special dinnerware, and things that are more common to all of us living with MS.
My sole caregiver is my wife, and she can handle everything that I encounter daily. However, I still have to see a specialized “mechanic” from time to time. I’m referring to my neurologist, of course, and the one I see is an MS specialist. That makes him specialized, even among other neurologists. Even though we have to drive over an hour to see him, it’s worth it to go to a place where they’re familiar with my disease.
Just like a finicky vehicle, I require premium fuel. I don’t currently follow a specialized diet per se, but I do place a great deal of importance on nutrition. Steering clear of processed foods, watching my sugar intake, and being mindful of my gut microbiome are important to keeping this flawed machine running as well as it can. Most of the medications that I add to my tank are unique to MS. They may not count as fuel, but they’re essential additives that boost my performance.
I may not be the needy, demanding type of high maintenance, but I have a disease that requires a high amount of maintenance. My paint might be faded and cracking in a few spots and my wiring is definitely bad, but I’m still running. That’s almost certainly because I’m maintaining my life with MS.
How do you maintain yours?
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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