Thriving didn’t always come easily, and it still doesn’t.
I’ve had MS for thirty years. When I was first told I had the disease there was no treatment even on the horizon. My neurologist was more upset about the diagnosis than I was; I was only relieved to finally have a reason to explain all the weird symptoms I’d been having. At that time I was the single mother of a five year old and, still working, I had to figure out how to juggle a job and the care of my son. Managing exacerbations, hospitalizations, a full time job and motherhood, was not easy and I used to say “I do everything badly”. I didn’t really have much time to think about MS. If I did think about it at all, it was something I kept “on the shelf” and took down when I had to deal with it. I spent a lot of time explaining to my son that there was nothing “really” wrong with me and, in a way, I came to believe that.
As time went on I got some seniority in my job and managed to develop a regular swimming habit which had always been my preferred form of exercise. Disease modifying therapies also became available and I was started on a number of them, to no discernable effect. I continued to have exacerbations and recovery from each became less complete. I also married again. My husband was, and still is, the kind of person who can take the roller coaster of living with MS in stride… We moved to the country and found a great life on a farm with dogs, chickens and bees.
Then there came a day when I could no longer work. My son was away at college by that point so I no longer had to worry about his whereabouts and I was lucky enough to have reached a point where my workplace would provide me with disability insurance. Also, I thought I was in pretty good shape. I had reached the “secondary progressive” phase of the disease but I got around fairly easily with a wheeled walker and I could still drive. I continued swimming regularly at the Y and got involved with town politics.
The worst time came a few years later when I developed “bilateral internuclear ophthalmoplegia”. What that means, essentially, is permanent double vision. Traveling is confusing, there are cars all over the road. I had to give up my driving license and I gave my car to my stepson. Life got grim then. The town I live in has no bus or taxi service and while there is a “para transit” service, it has very limited hours and must be booked two working days in advance. Anyone who has ever been unable to drive, for any reason, can understand how trapped one can feel, even in a very nice house. The only way to get out, for exercise, shopping or socializing, is to call up a friend or family member and while that’s ok, it gets hard to ask. Friends and family want to help, they really do, but they have lives too and they don’t necessarily want to share every moment of them.
So there I was, stuck. For quite a long time I got very depressed. I gained a lot of weight and generally felt very bad about myself. It seemed that I no longer had anything to live for, my health was just going to get worse and I couldn’t seem to do anything about it.
I was still swimming however, and it was there at the YMCA that I met a friend who made all the difference. She has MS too, the Primary Progressive type and for about six years when we met. She lives up the road from me, so riding to the YMCA became our habit three days a week. Eventually we added an exercise component to the swimming; we exercised for an hour on the machines before she took a water aerobics class and I swam laps. Gradually we realized how important our relationship was becoming to our exercise routine; she’d call and say “are we going to do this thing?” and I’d say “yes” almost reflexively, even though I didn’t feel like going. She assures me that she often hoped I’d say no, so that she’d get the day off. Before long we added horseriding, and then hula hooping to our enterprises. My friend had already been a belly dancer, and though I tried that briefly, she continued that while I took up Tai Chi. More recently MS Cure took me adaptive skiing which was fantastic. At home I started doing “Duolingo”, a free program to learn languages and stunned my husband when I started chatting with friends in Portuguese.
We also started attending a support group for MS patients. We found that our approach to exercise, swimming and learning was very appealing to other patients. I remember one hilarious session when we brought hula hoops to the group. Watching a nun, confined to a wheelchair, learning to hoop on her arms was great!
So, now I realize that I am “thriving beyond MS”. When I looked up “thriving” in the dictionary I find that it means being successful, healthy and strong. I won’t say it’s been easy. There are days when I’d really much rather curl up on the couch with a good book, or even binge watch something on Netflix. Doing nothing is very much easier, but so dangerous for me. The point is that as long as I keep at it, the exercise, swimming, horseriding, skiing and language learning, they are all helping to make me successful, healthy, strong…and happy.
So ask me anything! I want to be available for anyone who feels the need to be understood. You can reach me at firstname.lastname@example.org.
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