Entries by Penelope Conway

MS should stand for messy screwups rather than multiple sclerosis

Sometimes I laugh at myself, like yesterday when I accidentally dropped a cup of flour all over myself and the kitchen floor. Laughing about it was much better than crying. Besides, tears mixed with flour would have created a sticky mess. I have accidents all the time. I trip, fall, misplace things, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with Multiple Sclerosis. Some of us have more than others, but they seem to just be a part our life now.

Living in a storm called multiple sclerosis

Some days it feels like I’m stuck in a forever looming storm but the more I think about it, the more I realize that every storm has an end. Think about it. There is not one hurricane, tornado, tsunami or flood that is still threatening destruction. They have all come to an end. Some brought great fear and loss along with them, but they all ended.

Multiple Sclerosis is expensive

It is shocking to me how much it costs to live with a disease like multiple sclerosis. If someone would have told me before I was diagnosed that some of the meds can cost up to $70k a year, I would have laughed at them and said, “You ‘re crazy. Nothing costs that much.”

I didn’t give multiple sclerosis permission

Weather can be so unpredictable. I would love to be able to tell it to snow on the hottest day in July, or to rain when not one drop of water has been seen for months, or to make a storm dissolve and disappear. But no matter how hard I try, I can’t make those things happen. The wind didn’t ask me which way to blow today. The sun didn’t even get my permission to come up in the first place.

I will not be defeated by multiple sclerosis

I’m not sure how to answer someone who asks “What’s it like living with Multiple Sclerosis?” Uhm…there’s just not a simple answer to that question. Trying to describe the physical and mental difficulties and limitations that I experience because of MS is often met with some interesting responses from others.

A life with multiple sclerosis isn’t as easy as some people think

One of the hardest things about living with multiple sclerosis is the pressure from some people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in my life, but for some unknown reason I choose not to use it.

Scared is how you feel, but brave is what you’re doing

I am terribly afraid of cockroaches. I don’t know why, I just am…especially the flying kind. Those freak me out. Just writing about them gives me the heebie-jeekies. I remember one time when one landed on my shoulder. I danced around the room like a breakdancing ninja trying to shake it off. I can still feel its legs crawling across my back. Yikes! To this day, if a cockroach shows up in my house you will hear me scream…all the way over in Australia.