One of the scarier moments for me in this life with multiple sclerosis is when my throat closes up and refused to allow me to swallow. Many times I have to actually convince those muscles to actually function. Last night was one of those times…
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
We live in a society filled with opinions. Opinions about what a person should wear, what they should eat, where they should live and what kind of work they should do. It seems everyone is an expert at everything…
To whom it may concern:
There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will give you insight into what life is like for me…giving you insight and understanding into the life of someone living with MS.
Cold weather is not my friend. My muscles and joints choose to stop working the colder it gets thus making moving any body part especially difficult. If you were to ever see a snowman walking (or is it snowperson? I never get those things right.), I think I would be what that looks like…
“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”
I hate to say it, but Eeyore is right. That gloomy, grey stuffed donkey that lives in the southeast corner of the Hundred Acre Wood is right.
Have you ever felt like your whole life was falling apart before your very eyes and no matter how hard you tried you couldn’t do anything to stop it? That the very ones you thought would stand beside you forever turned and walked away?
No one knows everything about multiple sclerosis. Not the person living with it, not the doctors, scientists, nutritionists or even informed family members or neighbors. There is still so much to be learned about this disease that spends its time gnawing aways at a persons nerves for no apparent reason…
Lately it’s been extremely difficult getting my body going in the morning. Now mind you, I’ve never been a morning person, but this kind of slow going is different. For instance, take this morning…
Living in a constant state of pain is grueling, exhausting and tough…really tough. Someone who hasn’t been in that position will never grasp how difficult it actually is to function during a time of blinding pain, no matter how much you try to explain it to them…
Have you ever felt worthless, hopeless and more like a crumpled piece of paper tossed into a trash can than anything of value? What is it about living with multiple sclerosis that makes so many people feel like an outcast?
- 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.