When we meet others with multiple sclerosis we discover we have a common animosity. I went to a meeting with other MSers after I was diagnosis with MS and I felt like I was at an AA meeting… Hi, I’m Penelope and I have MS.
Have you ever had this happen… a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.
I, too, have fallen — unexpectedly — into a place I call MS-Land, a realm shaped by multiple sclerosis. Like Alice, I’ve learned to navigate its quirks, though my fall came with a stumble down the stairs, courtesy of MS’s unsteady grip.
Over the years, there have been things that have tried to steal my smile. I have dealt with things that no one should have to face and still be standing to tell about it, but here I am… smiling. I tell you that because I want you to understand that we all have a dysfunctional, messed up, broken past. No one has the perfect life. We all have a past, we all have hurts, we all have dirty laundry, add to that a diagnosis of multiple sclerosis and I’d say my life has been pretty messed up.
It seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime. Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS! It feels like I’m being pelted with pin and needles.
Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.
Fall down seven times, stand up eight is a famous Proverb that tells how attitude towards failure matters and makes a difference in your life. Don’t get bogged down by your failures but welcome them and keep trying over and over again.
I woke up one morning about 14 years ago and knew something was wrong… really wrong. The day started out just like it always did. My alarm clock buzzed me awake declaring a new day had begun. I sat up, stretched really big and yawned, only as I rubbed my eyes I could tell something was different.
What do you do when faced with a life of multiple sclerosis? Where do you go from here once diagnosed? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?
My biggest pet peeve is people who say one thing and then either do the exact opposite or nothing at all and prove themself to be untrustworthy. I’m finding it harder and harder to believe people will do what they say they will do…unless they are getting a paycheck in return (and even then they are not always trustworthy).
1. Simplify your life.