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.
About the Author
Dixie Barnhart
You always have entertaining and insightful articles that I can relate to with my son having MS. I think you come across as upbeat handling the life challenges you have been given. Keep writing. I am so happy you have a good caregiver.
Karen Joyce Williams
Great thoughts, Benjamin!
I’d rather think of myself as a high maintenance / high performance vehicle than Webster’s definition of a difficult, problem/causing, high performance person as well!
Tom A
Nice analogy. Maintenance is specific to challenge. After 23 yrs of injections and two of Ocrevus, I opted out of DMTs but wouldn't have, if not stable for a long time. Off them for 5 years, still stable. I did start with 10 years of relapses. Swank diet and amalgam removalal, R- Alpha Lipoic Acid. I was going to say, that my car doesn't usually "self-improve" to the extent that things go away. But yes, recently I got an error code for faulty catalytic converter, which went away and came back and went away and came back, it was relapsing remitting. Monday it returned but was off by the next morning; I would say 90% not on for the past 3 months which is not replacement territory. (It's an expensive repair). So seemingly getting better on its own which it is not supposed to do. Kind of like my MS. Same with the starter.
There's a research question- What's the correlation between your car maintenance and MS outcome?
Anthony Hoysted
I often feel like I am high maintenance, but, on reflection, it is just all the usual, low-maintenance tasks of everyday life that now take up so much time and effort they seem like high-maintenance tasks. I have to think carefully about so much stuff that I used to do effortlessly on auto-pilot.
Without MS, I could happily dream away the day while performing mundane tasks. Now, for example, I have to focus on transferring from a chair to a walking frame safely, then remember whether I have everything I need to take into the next room in my basket, because backtracking is awful with mobility impairment. And so it goes on!
As for what goes into my body, it's all healthy stuff these days. I'm on Ocrevus. It requires a trip to an infusion centre every six months. I'm waiting for the new ten-minute injection to be approved where I am. I'm always on the lookout for repurposed pre-existing meds that may have a positive effect, but several hopefuls seem to have been knocked out in organised drug trials: vitamin D, biotin and simvastatin. I'm currently trying alpha lipoic acid, which I think is undergoing a trial at present. But we shall see ...