I live in a snow globe kind of world. The wind doesn’t blow and the rain doesn’t fall. Instead, the earth shakes and everything flips upside-down, right-side up, then upside-down again. The torrential swirls that are created sends shockwaves throughout my world and threatens to topple anything that isn’t nailed down.
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
I took a speech class when I was in college to help me when speaking before crowds of people. It did help, but not how you might think. I never gained the confidence to fearlessly address people, I simply learned how to do it afraid… Yesterday my bravery was tested…
One multiple sclerosis symptom that is super annoying for me is this crazy fluttering sound that is constantly happening in my right ear. The best way for me to describe what it sounds like is those times when you get water trapped in your ears and as you work to get the water out a fluttering sound pulses throughout your ear canal. That or those times when you are flying on an airplane and the air pressure changes trigger a flutter. You usual can remedy the problem by chewing gum or yawning.
We live in a world full of “I want it now” kind of people and “it can’t wait” situations. How do you keep from creating a multiple sclerosis exacerbation in that kind of world.
Maybe your day starts something like this…
We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. Sure they have a way of ruining even a good day, but hidden in the chaos are little pockets of smiles. Hang onto those smiles because they are what help get you through the most difficult times.
There have beens days when I have looked over the entirety of my life and wished things were different. I have even envied people who are not disabled. What? I shouldn’t think like that?
Some of the memories we keep and the stories we tell about ourselves have to do with scars. You may have a teeny tiny scar on your finger from giving your best friend a haircut or a really big ugly one on your leg from a terrible bicycle accident, and every time you look down at that scar you are reminded of what happened and how you felt in the moment even if that event wasn’t very dramatic.
There are times when your dreams appear to be unreachable. When you look back at what you used to do and who you used to be, and catch yourself wondering why life had to change and where that person went. It’s actually quite easy to get sucked into the thoughts of yesterday feeling miserable and questioning everything about life.
I think I’ve turned into Linus of Charlie Brown. Well, maybe not really, but I have noticed that I have a favorite blanket and I rest better when I have it with me. We have a special bond…my blanket and I.
I heard time tick by this morning: 1 AM, 2 AM, 3 AM, 4 AM. I tried so hard to sleep. All attempts to get Mr. Sandman to pay me a visit failed even though I was exhausted. If there were any sheep to count I would have tried counting them, but all the sheep must have been out to pasture.
- 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.