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.
Author Archive for: penelope
About Penelope Conway
It was November 21, 2011, that Penelope Conway was diagnosed with Multiple Sclerosis. She had no prior symptoms or signs and onset was quick. Within three weeks time, she was experiencing numbness to the right side of her face, right torso, and both legs; was having bladder and bowel dysfunction; and optic neuritis set in causing her to lose color in the left eye along with giving her blurred vision. The doctors didn’t take long to come to a diagnosis. After an MRI and a spinal tap, it was clear… this was Multiple Sclerosis.
She had a hard time coming to terms with being diagnosed with a chronic illness. After all, she had plans, and MS was not one of them. And what was MS anyway? She spent the next few months researching and digging for information. The information she found was scary, but deep inside, she knew that this was not the end to her life or to what she was capable of becoming. Many nights, she cried and was still in denial, but as the months passed, she began to see that even though she was in pain every day and her body limited her, there was still a life to be lived… and she was determined to live it.
Entries by Penelope Conway
If you enter a start and an end destination into a GPS system, you will be presented with a suggested route for your journey. That suggestion is not permanent. It is merely one option out of hundreds, if not thousands of routes you can take to get to your final destination.
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.”
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.
As a kid people would ask me, “What do you want to be when you grow up?” My answer would change often, but I would mostly respond with teacher, scientist, minister or musician. Never once did I think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.
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.
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.
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.
If you could see my insides, you would see scar after scar after scar. I guess it makes sense that Multiple Sclerosis actually means Multiple Scars. You see, the nerves in my brain and spine have been chewed to bits…literally.
Just so you know, I have my bad days. I have times when the struggle to think a clear thought causes me to cry rather than laugh. I know what it feels like to be overlooked when plans are being made by friends or co-workers. I know how exhausting, painful and utterly depressing life can be when multiple sclerosis just won’t give you a break.
- Simplify your life.
- Watch your thoughts. What goes in, comes out.
- Surround yourself with positive people.
- Take time for yourself, even if it means saying "no" to others.
- Be grateful, laugh and celebrate life.
- Think more about what you have as opposed to what you don't have.
- Help others.
About Positive Living with MS
Positive Living with MS was started by Penelope Conway after she was diagnosed with MS. She found few resources for positive encouragement; to laugh, cry, share, and just feel normal in the midst of a life of chaos; so she decided to start something herself. Positive Living with MS was birthed out of Penelope’s desire to show others that regardless of the challenge, we can all enjoy life to the fullest and find a smile in the storm.