A life with multiple sclerosis is hard. There’s no nice way to put it. I could lie and tell of all the cool things life brings to sway you to the opposite side. I could give you a bunch of blessings and sweet moments that have happened along the way to change your mind but I would be fooling myself. Those people that say life isn’t hard, you’re just living it wrong…I’d like to smack them upside the head or strangle them. They aren’t living in reality.
Author Archive for: penelope
You are here: Home / Penelope Conway
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
Most people don’t have to think about doing the simple things in life like answering the door when an unexpected visitor arrives, picking up some toilet paper at the grocery store or helping out a friend until something like multiple sclerosis comes along and messes with those seemingly simple tasks or plans. Sure, they have to juggle other plans around in order to fit the sudden change into their day, but most of the time those shifts are simple to make.
Lately I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.
Being thankful when you’re hurting seems like an impossible thing to do. How in the world can anyone live a life of gratitude in the middle of a life of pain? You may be looking at everything happening in your life right now and thinking I’m crazy to even suggest such a thing. Being thankful with Multiple Sclerosis on top of everything else going on in life? Yeah, right!
I’m starting to get used to a life of change. Don’t you just hate it when “normal” keeps changing on you? My normal today is drastically different than it was a few years ago. Comparing milestone markers in my life by looking at my progressions from year to year, and sometimes month to month, is the only way I can actually determine just how much my disability is changing.
One thing multiple sclerosis has done for me is weed out the people in my life that were only there for the ride, not the journey… and living with MS is definitely a journey. When life is going good, it’s easy to find people to hang out with. Add a challenge or need peoples help on a regular basis and most of those so called friends disappear.
Words. We all use them. When we aren’t speaking them out loud, we are thinking them in our heads or writing them down on scraps of paper. Not one day goes by without the use of words. My words, though, seem to come out all mixed up. It’s as if someone took my vocabulary, put it into a blender and then dumped all the chopped up words on a table. Only somehow, some of the words got lost in the mix. Maybe the dog ate them. I think I’ve seen him talking when he thought no one was watching.
Some say that I’m broken. They look at my past mistakes in life and even at the fact that I’m living with multiple sclerosis, and all they seem to see is cracks and imperfections. But the most amazing thing happens when you hold me up to the light. You may see my broken places…but, you will also see what makes me beautiful, because in those cracks are the stories of overcoming and standing strong.
I think I slept a total of 3 hours last night if I were to add up all the time I wasn’t lying i bed just watching the minutes tick by. Nights like last night make for some really interesting days. You will find me yawning in the shower, as I work, and even as I eat and I still won’t be able to sleep for a short afternoon nap. It’s crazy how that happens.
It’s weird how the brain works. You know how some people have selective hearing and can tune out things that annoy them? Yeah, well I think I have selective thinking.
- 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.