At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night.
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 don’t think the world will ever understand that we don’t need their unfounded, unproven, misinformed opinions or their self-help miracle cures, mineral water and diet plans. We simply want to know that they care. Yes, it really is that simple. A kind word, a smile, a helping hand…you’d be amazed at just how much they actually help get us through the difficult times.
In the past month, I have been approached by two different companies to join in with them in order to reach more people living with multiple sclerosis. That sounds great, doesn’t it? I mean, that’s what I want to do. I want to touch as many people living with MS as possible with a message of hope, help and encouragement. Go for it you say, right?!
Multiple Sclerosis heroes come in all shapes and sizes. You normally can’t pick them out from the people standing in line at the grocery store or from those seated in a restaurant…but they are there. MS heroes are those amazing people who charge into battle when they have every right to hide under the covers. They don’t fit into any particular mold, wear a noticeable badge of honor or win any bravery awards. But brave…oh, they are!!!
When people ask me how I do it, how do I get through my day living with multiple sclerosis, I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be properly answered.
Each morning I wake up and do the same thing. I make my way to the bathroom and then to the kitchen to take my vitamins and meds. Then I get a cup of coffee. I love my coffee.
I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.
All right, let’s say this once and for all and get it all out in the open. I have multiple sclerosis. It is an incurable chronic progressive disease. There are some great strides being made towards finding a cure, but at this time there is no known cure. This disease will continue to worsen in my life as the months and years pass by. It is extremely unpredictable so it’s possible it could take an entire lifetime for my body to get to a point of causing me major problems or it could happen tomorrow.
The standard beginning and ending to a story is ONCE UPON A TIME and THE END. Ask a kid to tell you a story and I can guarantee you that most will use those very words. I’m not sure who coined those phases, but they’ve been a standard for a very, very long time.
You would think a night in bed would be helpful for someone with multiple sclerosis. It would be amazing to have the energy in my body build up overnight like that. This way by the time I wake up I would have the strength needed to pull the covers back and drag my legs over the side of the bed to start my day but many times as soon as my feet dangle over the side of the bed I’m ready to go back to sleep.
- 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.