I know I have tried to tell this before. I feel this is one story I will periodically need to retell in order to gain perspective and growth. Why again now? Today a picture came up in my FB feed from the beginning. Not the beginning of my MS, but the beginning of the back to back flares that finally led to the diagnosis, a big family change, and unfortunately lasting MS symptoms.
5 years ago our family of 5 went on a Spring Break trip. It was not a big mega amusement park or a tropical island get-away. Instead it was an easy drive to a destination that every Misty horse fan longs to visit. If you are a Misty fan, closely related to a fan, or familiar with the destination region, you know the ‘big swim’ and auction is in the Summer. We were going for the Spring round up. They gather all the horses and ponies and start planning which will be part of that year’s auction. For us this meant walking to look out points and to a chorale. My Misty fan was beyond excited!
The walk from the far end of a parking lot and down a path to a lookout deck should have been easily manageable. Instead, I needed frequent breaks to rest. Finally I needed the car moved to the path entrance and water to be fetched.
I had a recent tripping injury and a bout of just losing balance and falling down, several times. Combined, these events had me labeled as clumsy, too sedentary, lazy, slow, and a killjoy.
As the family’s cruise director and caregiver I arranged activities to hide my symptoms so I could minimize hearing these labels. This also meant scaling back the activities I did for me to make sure I had enough energy for family activities.
It was decided that we could not afford medical bills for me again. I had seen a neurologist and had an MRI a few years earlier for a thigh numbness and limping issue a chiropractor finally solved. (In hindsight this was probably a flare that happened to end during the chiropractor’s care.) So, I tried every Googled exercise I could do at home. After a few months without success I tried a chiropractor. This quickly had me feeling worse. A general doctor visit recommended physical therapy. The physical therapy helped to a point.
I needed another general doctor to identify that my weakness was on the other side of the body. Hindsight says this identified a switch to the second of the back to back flares. She started blood tests and referred me to a neurologist. The neurologist started a series of MRIs and a lumbar puncture. My diagnosis finally came 2 years after the Spring Break trip, in a Friday phone call just minutes before my sons came home from school.
What causes MS? It has not been pinpointed yet. My family and personal medical history is full of autoimmune issues. I also see a few life decisions that may have had a hidden MS factor. But, nothing is a proven cause yet.
How long have I had MS? Yet another fuzzy answer. MS patients, MS Warriors usually talk in terms of diagnosis. Some are diagnosed with first symptoms. Others go through years of flares before being diagnosed. In hindsight, I went through decades of sporadic and fully resolved flares and symptoms.
What does all this mean for me and my family of 4 today? We have learned ways to be resilient and flexible. I have learned to give my kids more life skill learning moments, chores and growth experiences. I have learned to accept some help when needed. We have learned our limits – physical and skill sets. Above all we have learned to have a sense of humor about what MS throws at us. I will know I have told this story enough when I see myself apply humor to the story. I know I will get there.