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.
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
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.
In a job interview I was once asked, “If you could be a fruit or a vegetable, what would you be and why?” It was one of those questions used to evaluate a persons personality and quick thinking. I sat there for what seemed like an eternity as I mentally browsed the produce isle of the grocery store, and the thought that tumbled out was, “I would be a peanut.”
Multiple Sclerosis has taught me a lot about myself. It has taught me how to adapt to change and shift, many times on a daily basis, to the unexpected. No one likes to have their life disrupted by the unexpected. It makes our daily life hard to manage and plan out, but with MS you learn that it’s okay to change plans; that it’s okay to call up a friend to let them know you have to cancel today because your legs aren’t working or the fatigue has gotten too intense to handle; that it’s okay to acknowledge the struggle.
Brain Fog: That moment when you confuse people, places and things with apples, oranges and grapes. It could be something as simple as starting the coffee pot without the coffee in it or as crazy as forgetting what you are saying while you are saying it, not remembering why you went into a room with apparent purpose and gusto, or forgetting to rinse the shampoo out of your hair. Yes, I have done all of those things.
It can be hard living with a chronic illness that people can’t see and choose to not understand. Just trying to explain why you aren’t a quadriplegic or a paraplegic even though you have lost much of the feeling in your feet, legs, hands or arms is difficult. It seems in their minds that if you have no feeling in them, then you shouldn’t be able to use them.
I know how difficult things can get. It’s not easy making it through the day when my body is fighting against me. I didn’t ask to be the strong one. At times when people tell me to stay strong, I actually feel so weak that I have no idea how those words are supposed to be comforting. To me, they feel more like a punch in the gut than the gentle hug they were meant to be.
MS Depression is real. It’s not the same as being sad or feeling blue either. Everybody experiences moments of sadness and have times when the tears flow easily because of an unexpected life change, but with sadness the sun comes out, the tears dry up and life goes on.
There are people that misunderstand what it means to be a positive person. Some seem to think it means that you say nothing negative, think nothing negative and basically live in denial of all difficult circumstances in life. They believe that as long as you don’t acknowledge that there’s a problem, then the problem doesn’t really exist, or at least it doesn’t have control over you.
No one likes to think about where Multiple Sclerosis may lead…not even me, but I can tell you from my own experience, to ignore all possibilities of progression is to live in denial. I lived there my first year after diagnosis. I refused to believe that my life was changing or would keep changing and that I needed to make adjustments.
- 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 who was diagnosed with MS in 2013. 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.