I want to talk about a topic that many people either avoid or choose to ignore. It’s something I see very little support for yet affects over half the population of people living with multiple sclerosis as well as those living with other chronic illnesses like Parkinson’s, ALS, Lupus, EDS, Asthma…too many illnesses to even list.
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
You may walk with a limp, talk with a slur and hang onto walls for support, but you are going to be okay. You may cry more than you thought possible and the load may be hard to carry, but you’re strong. So very strong!
Even though I have my moments of weakness and difficulties, I never want to throw the towel in and give up because of my limitations. I want to keep going until I no long can. Yes, I’m that stubborn. But to me that kind of stubborn can be a good thing. As long as I’m not harming myself or others, my stubbornness is the push I need to keep going. Believe me, if I wanted I would have given up months ago…years ago…but that’s just not in me to do.
I have had people ask me, “What is MS?” If I say it stands for multiple sclerosis. It’s a chronic progressive disease where the nerves in the brain and spinal cord, and the optic nerves in the eyes become damaged as the outer coating on the nerves called myelin gets eaten away by the immune system causing numbness, speech impairment, muscle coordination difficulties, blurred vision and severe fatigue (and that’s just the tip of the iceberg of what we go through)…I tend to get a blank stare and “huh” comes tumbling out of their mouth. Either that or they proceed to give me their cure for this incurable disease or tell me about a relative of theirs with MS that died.
I try so hard to get through my days with a bit of dignity and grace, yet somehow multiple sclerosis voids those plans as soon as I wake up.
The day I made my decision to resign, I cried. Not just one tear either, a flood and an ocean of tears. I covered it up well, but my heart was broken. Having to walk away from my job made me feel like a failure.
My right hand has grown increasingly weak. At first, it had just a slight tremor that was annoying but manageable. Now, even when I’m holding it in a resting position, thankfully the tremors aren’t as prominent but it has a tendency to curl up making that hand a bit useless. I have trouble even pushing a key on my keyboard or holding onto a spoon. Mealtime for me can get quite comical.
Those of us living with a disability have an advantage over the rest of the world. We learn early on to appreciate the roses and the sunsets as well as the storm clouds and looming tsunamis. We get to choose to live life on our own terms… not how other people think it should be done.
Packing up your house and moving hundreds of miles away can be a daunting task for a healthy body. Add multiple sclerosis into the mix and it can become terrifying. That’s not an over exaggeration either. Anyone that has moved can testify to it. The energy it takes to box up you entire life, load it into a moving truck and then unload everything a few days later, it wears a body out. A few years ago, I did just that. I had to make sense of the mess and the boxes that surrounded me as I worked to put my life back in order. To this day it’s still not in order.
Today, I feel such amazing and unbelievable thankfulness for you. On days when I’m struggling, just knowing that you are sitting there across the miles reading my rambling words, tender encouragement and quirky sarcasm, warms my heart and gives me a smile that makes each day worth waking up to.
- 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.