I remember as a kid taking time to lie in the grass, look up at the sky and discover a world of cloud shaped wonders. Once I saw a bunny eat an elephant, then it pooped out a bear. It seems the impossible can happen with a little bit of imagination and a sky full of clouds. I mean, who ever heard of a bunny eating an elephant before? But I saw it happen right before my very eyes.
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
The crazy thing about living with multiple sclerosis is that stress can make your disease progression worse, but trying to avoid stress can be stressful thus putting you into a perpetual cycle of stress. Ugh…how stressful. What stresses me out most with MS is unreliable and untrustworthy people.
Could someone please tell me what sick is supposed to look like. I am apparently doing it all wrong. It’s amazing how many people tell me that I look good. I don’t know whether to be grateful that they care or sad that they don’t even attempt to understand my struggle. My outside is nothing but a costume covering a body filled with chaos. I must be wearing it well.
There are times I wish everyone would just go away and leave me alone so I can clear my head and distance myself from all the drama, arguments, pain and chaos in the world; to find such a place where I can cry as much as I need to and let out a scream or two from time to time—even if only for 5 minutes.
Something that never crossed my mind growing up was being diagnosed with multiple sclerosis. It wasn’t even something I thought about…or even knew about. I never thought a chronic illness would end up forcing me out of a career that I loved causing me to have to stay home much of the time because of mobility and accessibility difficulties and requiring regular visits from a home healthcare nurse to help me manage everyday life. My plans were so much bigger than that. I dreamed of greatness. I was going places. I was doing things. I had arrived.
No one knows exactly when it began, but there is a serial kleptomaniac on the loose that seems to only have an interest in myelin: AKA the Myelin Muncher. With all the myelin that has been stolen over the years, you’d think there would be more evidence left behind, but this thief is pretty good at covering all its tracks. It seems to be a professional inside hit job.
It’s really easy to get discouraged living with a chronic illness especially when your plans, dreams, and hopes have all been crushed, sometimes destroyed, changing your life more than you ever thought possible. Some of the changes are minor like a numb finger that annoys the heck out of you and some are more catastrophic like losing your eyesight or your ability to walk.
In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces, for some reason are seen as attention seekers and broken. We move much too slow for this fast paced world and they seem to think something is wrong with that. And those who don’t need assistive devices; the stumbling, pain, emotional moments, and memory difficulties are viewed in the same way.
I will be taking a few days break from my morning blog writing. We all need time to rest and this is my time. I will miss sharing with you, but will be back Tuesday, July 23rd ready to fill your day with smiles and encouragement once again. I hope you know that I will miss you!
This is the truth…the raw truth of a person living with multiple sclerosis. I can’t pretend that everything is okay, because the truth is, it’s not. Let’s get this out in the open instead of constantly whispering about it in the shadows. I am living with a chronic illness. There is no magic cure and no way of knowing how it will affect me in the years to come.
- 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.