I can’t seem to go through a week without someone voicing their opinion as to how I am to rid my body of this monster called multiple sclerosis. Some have suggested that I don’t even have MS at all; that it’s actually Lyme Disease or a deficiency of B12 or Vitamin D and that I just haven’t been properly diagnosed. All of those answers come from a place of a lack of information and too much Google.
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
Have you ever had one of those days when you woke up feeling so bad that you wished the day could just be canceled? That an announcement could be made over the radio…”Today has been canceled due to too many broken nerve signals. It looks like a bad one out there. Stay home and bundled up. We’ll keep you posted on any changes.”
When everything seems to be falling apart and the struggle to simply get out of bed becomes a monumental feat.
When the tears flow, the anger rises, and fears take hold of your day.
When the fatigue becomes overwhelming.
When you feel all alone because no one understands how hard even the simplest of things can be…
I’ve always heard that balance in life is essential. I have a feeling the person who originally penned that thought didn’t have multiple sclerosis. I can no more balance my body on a flat surface than balance my life on a daily basis. I can’t even balance my check book due to the financial strain of living with a chronic illness. A balanced life with MS sounds more like an oxymoron than a reality.
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.
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.
- 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.