It took a while to get to my MS diagnosis. For several years prior to my diagnosis, I had occasional odd, inconsistent symptoms. In conjunction with that, we had a family friend with MS, and I would research and read about it off and on. So, I should have put two and two together, gone to the doctor, put a name to my issues and gotten help. Unfortunately, it was all too easy to bury my head in the sand and brush off my issues as related to my bad back or recurring headaches or whatever.
I mention this because by the time my neurologist confirmed the disease's presence — after having previously told me I didn’t have it, by the way(!) — I was pretty well certain I had MS. I accustomed myself to the idea. It would be OK. There were drugs for it. I’d get on one and proceed with my life. Having that certainty didn’t end up helping, though, because I, in my typical never-take-the-easy-route way, had PPMS. At the time, there weren’t any approved treatments for PPMS. That. Was. Terrifying.
I attended MS 101 classes; scoured the internet for tips and tricks; joined message boards; and researched umpteen diets, supplements, and holistic approaches. No two sources seemed to agree. It was overwhelming. Confusing. Alienating. And I was terrified for my future. PPMS was the bad one. The one that had the potential to debilitate me faster. What if I couldn’t work? I had to be able to bring in an income. What if I couldn’t walk? Or drive? Or think straight? Or even take care of myself? I could lose my independence, and I’m a VERY independent person. This diagnosis could cause the actualization of all my deepest fears.
As time went on and none of those terrors presented themselves, I adjusted and acclimated. I concentrated on what I could control. I tried to eat better, incorporating more veggies and quality protein, and drink lots of water. Exercise became something to do every day. It was important to keep mental faculties intact, so I found ways to challenge my brain, too. I’m somewhat introverted, even shy, so support groups weren’t someplace I turned. I relied on family and a few close friends for support. Eventually, I did make some good friends who also have MS, and that helped to improve my outlook as well.
As I look back on the past eight-plus years, I realize that PPMS dropped on me like a bomb and blew up my internal world. It was an unwelcome intruder that had the potential to destroy everything I’d attained, hoped for, or dreamed possible. However, developing it has given me a wealth of experiences I could not have had any other way. Along my journey I’ve met and been so privileged to get to know many, many fabulous, kind, funny, caring and wonderful people. I’ve learned so much about myself and emerged a better, stronger person for having this disease. While I’ll never exactly look upon MS as a friend, I’ve made my peace with it and will walk (yes, WALK!) confidently into the future with it by my side.
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