22 years ago started my second multiple sclerosis relapse that lead to my diagnosis five days later. My first was optic neuritis but by itself had no name. It was 6 months later on Valentine’s Day weekend when I moved into my new house and my left side started to go numb. What started in my foot quickly traveled through my entire left side up to my face. I had difficulty walking, muscle atrophy and numbness that would never fully recover. I was fortunate that I had an MRI with the optic neuritis incident that was quickly compared to the emergency one the neurologist order. When I had the optic neuritis I had a lesion on my brain, unbeknownst to me, now the new MRI had multiple lesions. My diagnosis was certain.
I remember those early days so well. I can tell you almost every detail about them. I actually have in my blogs. It’s been 22 years and the thing I use to fear the most is my reality, the wheelchair. I remember reading that most people fall into secondary progressive multiple sclerosis after 10 years. I was terrified I would be in a wheelchair before I hit my 40’s. I thought my life would be over if that happened. Plus the house I just bought had steps.
I used to be obsessed with that 10 year mark. Well that mark came and went, so did the house, the husband and I gained a child and dogs. Medications were already on the market that helped stop the quick progression and more and more were added every few years. I was on many of them. I didn’t have a primary progressive form of the disease but I did have a active disease. That caused a lot of jumping around to stronger and stronger medication.
It took 22 years but I did hit the point I feared way back then, the wheelchair. I have to admit, it isn’t bad. Being in the wheelchair is the easiest part of it all. It’s when I’m out of the chair that’s difficult like transferring, getting dressed, showering or getting into bed. It is those moments I can find upsetting and frustrating. Getting around in my wheelchair is easy. It actually is the complete opposite of my fear. It has helped make my life independent and doable. I’m thankful for my wheelchair. Here I am 22 years later and the thing I feared the most I am so grateful for and things I never dreamed of are so difficult. The lesson I’ve learned is be thankful for the simple things.