We Shouldn't Have To Prove That We Really Do Have MS
Yes, I look good. I mean for having MS. But I do have it, believe me folks. Ask someone who knows me best – my husband.
- Fatigue. I have to plan my daily schedule around “fatigue time.” My body tells me when that is – anywhere between 1pm – 2pm. It begins to shut down when I can’t walk or think straight, and that means I need to put life on hold by napping. If I push through it, which I sometimes have to do, I pay for it later.
- Numbness. My right leg and foot are almost completely numb. They’ve been that way for almost 20 years. Imagine what it’d feel like to have a few ace bandages wrapped around your foot, and then you have to walk on it. It’s not too numb that I can’t drive or walk, but it’s numb enough that it’s difficult to feel my toes when I try on a new pair of shoes and the salesman asks how they feel. I’ve lost the ability to run, walk long distances or balance well. When my foot is tired it begins to drag and drop, and sometimes I fall. That’s when I know it’s screaming for me to rest. So I do.
- Shaking. My left hand shakes when I’m feeling stressed or tired. As a writer that can be irritating because my fingers inadvertently type a letter on my laptop when I’m in the middle of writing. It can sometimes be funny, in an annoying way.
- Spasms. My feet and calves have painful spasms when my toes freeze into place in the strangest looking way. I have to “wait it out” until they pass. When my husband is there he stays with me to soothe and calm me down. I love his voice and that always helps.
- Cognitive. I forget things. That’s not easy to admit. I was raised by parents who thought a good education was worth its weight in gold and who, in their eighties, are still voracious readers with minds as sharp as tacks. But, as I recently wrote in my own blog, between aging, a traumatic brain injury and MS my brain has been battered around. Sometimes I have trouble finding the right word, remembering where I put the car keys, or what I did last night. Sound familiar? It happens to most of us, but with the trifecta of possibilities why it’s happening to me I’ve decided to keep my brain as active as possible to keep it elastic.
- Itching. With no mosquito bite in sight there’s that crazy itchiness that many other MSers experience. You scratch the itch until the skin bleeds. It’s not serious but it’s ridiculous and, yes, annoying.
- Lower self-esteem: There’s the inability to keep up with others in the pace of life in order to fully enjoy it. I’ve had to say no or cancel too many social engagements over the years because of MS. I yearn to do so much more in my professional life but MS gets in the way. Sometimes it gets to you, and you have to remind yourself of your blessings and be grateful for all you do have. And meditate.
- Vision: Those irritating floaters that increase every year. The type that makes you jump because you see something large looming in the corner of your eye. Agh!
There are other issues that are bothersome as well, but the ones I’ve written about are my main ones.
I’ve had people lecture me about using my handicapped placard because I’m not disabled. Others say they’re jealous because of the outings I get to enjoy. Still others don’t realize, or think about, how my world is affected by MS. The truth is that it is. Every single day. Ask my husband. He’s at my side when I’m at my best and worst, and everything in between. He knows what it takes for me to get through an ordinary day. I am blessed to have him as my lifetime best friend.
Through education and awareness, and especially compassion, the world would be a better place for people with MS. Hear us, listen to our stories and feel what our world is like. If even for a few minutes. We’d sincerely appreciate it.
How many specialists did you see before finding "The One"?