When I meet people and they find out I have multiple sclerosis (MS), they often remark at my productive life. I’ll give myself some credit; I’ve done a lot in my life despite living with MS. I might sound a bit braggy right now, but my intent is not to boast. There is someone else that deserves recognition, because without him I wouldn’t be able to do half of the things I do. This person is my husband.
He helps me manage my life with MS. While I get myself ready in the mornings, he makes me breakfast and coffee. He feeds our dog. He puts together a lunch for me and puts my scooter in the van. At night, he often makes us dinner and helps me get ready for bed. There isn’t a day that goes by that I don’t benefit from his help. But no one sees these things except me, and I enter the world with no one assuming that I have this other person filling in where I fall short.
I’m thankful I have a partner to help me deal with my MS. I couldn’t do it alone. When people compliment the way I live my life, it feels good. I work very hard at it. But I think to myself, you should see the other guy. So I tell them about my amazing husband, my partner, my caregiver. I want to acknowledge him and all he does. He’s always working behind the scenes, making me appear more powerful than I am.
I’ve been on a hiatus. Truth is, I haven’t been feeling very well. I’ve been hiding out. Not from others, or from the reality of my illness, but perhaps from the feelings that can take me to bad places.
My disease is progressive. So far, it’s only gotten worse. My doctor acknowledges the course of my MS. She says it’s slow, at least. And this is true. So, there’s that. It’s gnawing away at me so slowly, but with a level of persistence that is terrifying. My doctor speaks of a plateau that could exist; a comfortable place where my disease decides to stay for a while. Take a break, I think. You’ve been working so hard to destroy me. Even a short rest sounds so lovely to me, but entirely unimaginable. My disease has been progressing for over a decade. Why stop now? Giving up is weak, and this disease is fierce.
Every time I’ve sat down to write in the past few months, what comes out is so negative. A reflection of how I feel. I don’t want to promote it, but it’s not fair to hide it either. It’s not fair to deny the downs that I can experience, the emotional and physical pain that all people with MS can experience. In reality, I’m a positive person. But my life with MS is very difficult and I don’t have to hide it.
I always want my words to be helpful and meaningful for others affected by MS. And I haven’t felt that anything I was writing would accomplish this goal. Then I finally found the purpose in my sharing how I feel. I’m sharing how I’ve been feeling, not because someone wants to read that I’m having a hard time, or to bring down others, but because maybe it might help someone feel less alone. If you are tired, afraid, frustrated, or feeling lost; I’m right there with you. But I can’t stay long. I’m working on a comeback.