Life is a journey that must be traveled no matter how bad the roads and accommodations.- Oliver Goldsmith
So today is Christmas Day. It’s been 22 months since I was diagnosed with Primary Progressive Multiple Sclerosis. It’s literally taken all these months to get my plan of treatment set to move forward – to slow the progression & manage my symptoms. I started infusions of Ocrevus in September, which I’ll receive every six months for…. I guess, forever. I’m taking a drug for spasticity, a drug for nerve pain, a drug for cog-fog, a drug for bowel movements, a drug for inflammation and a drug for digestion and finally a probiotic, magnesium, Vitamin D and my thyroid medicine I’ve been on for 26 years. All that and, still, my most recent MRI showed a new lesion on my spine in my neck between the third and fourth vertebrae.
There’s walking, or should I say falling, which I’m doing more and more often. My right leg being numb, tingly, and buzzing constantly does little for my walking. I just drag it along with it feeling like it weighs 100 pounds. Speaking of pounds, I’ve put on 40 since my leg stopped working. Before that I spent 8-10 hours a day, five days a week, running around a grocery store. Now I can’t run around at all – or walk. Of course, the steroids I’ve taken four times in the last couple of years haven’t helped. I ride a stationary bike every day, but physical therapy has been temporarily ruled out. Not because of my leg, but because of another symptom I’ll live with forever. The MS hug is its nickname. What it really is is severe inflammation of the tiny muscles that hold together the rib cage. This inflammation causes a feeling of tightness, like a girdle, from just below my breasts to my belly button.
The lesion on my spine was the striking force that led to discovering my MS. It’s located right where the nerves split off mid thoracic. In that very spot, I have a pain that feels like a knife in my back. Not that I know how a knife in my back feels, but that’s my best description. Just below that area is my stomach and colon – a part of which became numb because of the attack on my spine. This makes it a challenge to digest and then release food. That one lesion led to my first MRI, which disclosed 15 more lesions on my brain. Although none were active, they were at some point. Therein lies the cause of my cognitive fog, my lack of focus, my reaction to bright lights and sounds, the blurring off and on in my right eye and the occasional screeching sound in my right ear.
Finally, what may be my worst symptom is the fatigue. I have never felt anything like it. Even when I worked in the grocery store the day before Thanksgiving and would come home so exhausted. The hardest thing to accept about it is that I don’t have to have done anything at all and still it comes. Every day, sometimes several times a day, the fatigue is overwhelming. I’ve learned in the last 22 months that when it arrives, no matter where I am, I must stop whatever I’m doing and rest.
So, the woman I used to be was just gone in a flash. And now people call me a survivor, strong and brave. If only I could see me in that way. Most of this time I just feel weak, alone in my feelings. We with MS are snowflakes – no two alike. For the most part, those who don’t have MS aren’t schooled in it. As much as I love my family and friends, I’m pretty sure most of them don’t really get it either.
Yet it could be worse. I could already be in a wheelchair. I could already be dependent on all of them to take care of me. I know all of that….but I still miss the woman I was. And I’m still trying to figure out the woman I am now.
Despite the constant pain and weirdness I live with daily, I have many things to make me happy. I’m spending a lot of time with my four grandchildren – time I never had before when I was working. I’m continuing to enjoy community theater. Even though I can’t really act anymore, as long as I’m able, I want to continue to direct and serve on the Board of Directors. I’m currently the publicity chairman and am enjoying designing programs, newsletters, and flyers. I’m also working on solicitation, finding new advertisers and audience members for our shows. I’m doing a lot more reading and writing.
I spend a lot more time, alone, giving me the opportunity to figure out who I am now. It’s a different me--I didn’t ask for it, but I got it. Telling my story helps. I hope it does the same for you.
Debby Myers lives in Peru, Indiana with her husband, Alan. She has three grown children. She has four grandchildren. Debby has been involved with Ole Olsen Memorial Theater for 22 years now. This season she will direct her 15th show. Since her diagnosis of Multiple Sclerosis in 2016, she has embarked on doing some writing. I