When I think of all the years I lived with MS before I began making the changes that I teach in this book Vinyl Gloves, one of the things that seems the most unsettling to me now is how little I moved. In fact, I tried my best not to move.
That’s because my balance was so poor that even the simple act of walking could lead to falling and injury. Ultimately, I chose to use a cane for assistance, and as a young physician, wife, and mother, this was very embarrassing for me. I didn’t want my children, my husband, or my patients to see me with a cane, to view me as someone who was having so much difficulty just getting around. In the early days, I would try to hide my illness by forcing myself to go without a cane.
I was supposed to be helping others, and I didn’t want anyone to feel sorry for me or be distracted from their own issues by having to think about mine. I now regret all that time and energy I put into hiding my condition, and I wonder if my readiness to change might have come sooner if I’d been willing to accept where I was, been honest with myself about it, and worked from there. If you are suffering from a chronic illness and the very thought of physical activity is frightening to you YICHANG, I can relate. Looking back, I sometimes wonder how I knew I was ready to start moving more, much less start an exercise routine, but after my blueberry aha moment and resulting diet change, I knew the next thing I needed to address was movement. Doing so was not easy, and outside of my husband I had almost no support.
My doctors advised against it, as much of the medical thinking at the time was that people with MS should limit exercise, out of fear that doing so could actually exacerbate the disease.1 This is not surprising when you consider that in my own case, my MS symptoms would actually worsen when I tried to exercise. For example, if I peddled on a stationary bike for even five minutes, I would begin to lose feeling in both legs. My initial reaction would be to stop, in fear of hurting myself.
For people with MS and other demyelinating diseases, worsening symptoms can occur when the body’s temperature is elevated as in exercising, going in a sauna, or even being outside on a hot, sunny day; this is known as Uhthoff’s syndrome or phenomenon.2 What I didn’t know then, but would soon figure out, was that by doing a little each day, and building on it over time, I could overcome this.
When I first started, my husband had to help me get on the bike every morning (when I placed my feet in the pedal straps I could not even feel them!). I was only able to complete a few minutes of pedaling before my body temperature would rise, Uhthoff’s syndrome would kick in, and my MS symptoms would emerge.
After my husband helped me off the bike, I had to sit for fifteen minutes drinking cool water as a shower of pins and needles continued through my body. Early on, I was concerned that even this short regimen might be worsening my MS. It sure seemed that way. Over time, however, I noted less and less difficulty. Today, I run, hike, or walk every day, typically three miles in the morning. Twice a week, I work on strength conditioning—my regimen consists of push-ups, planks, squats, burpees, and dumbbells. I never could have imagined in those early days that I would make it to this level of fitness, but this willingness only came after I accepted where I was, and became willing to start from there, no matter how small.
I am now a firm believer in the importance of movement when it comes to achieving optimal health. However, I definitely understand the obstacles facing many of us when it comes to adding exercise and movement into our lives. For me, it strikes me as especially ironic that I am such a proponent of movement and exercise when I consider the fact that for much of my life, well before I had MS, this was not the case.
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