I was thinking the other day, what if there was a magic pill to cure multiple sclerosis? What if I can take something that not only stops future disability but cures current disability? What if tomorrow I could actually walk again? I have spent half my life with MS. It is part of my identity, even though I pretend it isn’t. Who am I without my disease?
I have this recurring dream that I’m working but still collecting disability. In the dream, what I remember most, is the fear of being caught. In every dream I’m able to walk. I’m never in a wheelchair in a dream. I am never well. I am always pushing myself to work. Nobody ever knows I’m sick. The option to stop working is always just that, an option.
I had a lot of guilt when I first stopped working. It was becoming so difficult for me to get through a work day. I was taking a lot of medication to function. Now I’m so much worse than I was even back then. I stopped working in 2016 when I was still getting around with my rollator. In 2021 I’m in a wheelchair and falling/sliding an average of 2 times a week again. I can’t sit in the wheelchair more than 2 hours. I’m usually in worse shape than if I exercised. My hands can’t write well. People cut my food. I am probably going to have an aide 7 days a week for at least 8 hours a day. I have issues getting dressed, getting in and out of bed and dropping things. I wish for the days I was using my rollator. I wish it wasn’t so hard all the time.
I’ve struggled through every stage of my multiple sclerosis. From the beginning when I was doing shots every other day. Through every relapse that left numbness in a new area that never returned to normal. From every stage of weakness in my legs that took my walking unaided, to aided to dependent. I struggled when I accepted having an aide come in to help me daily. I’ve been struggling with so many different parts of my disease for 22 years. Who would I be if there was a magic pill? Would I go back to work? Would I have mental issues? Who am I without multiple sclerosis?
I am a mom, daughter, sister, niece, cousin and friend. I am an animal lover especially my dogs. I am funny, sarcastic and genuine. I am a good person. I am me.