When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.
To me, multiple sclerosis feels like an earthquake went off inside my body and different body parts are experiencing continual aftershocks.
I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.
I sat there staring at it thinking “Okay, you can stop now.” After some time it finally subsided a bit but still goes on these crazy binges from time to time that I have no control over. I have a weighted wristband that helps contain the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.
Because of multiple sclerosis my body has been known to jerk and twitch without being provoked, I’ve thrown things across the room unintentionally, and once I even kicked someone…although that one could have been on purpose. I’ll never tell.
I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”
There are times when I may want my legs to move and they won’t, or need a hand to function and it rebels, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case.
Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.
It kind of becomes like that old saying “If a tree falls in a forest and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do weird things.
Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone. There are others of us who understand and face this unseen monster too in some very weird and strange ways.
Normal is no longer what it used to be.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.