I have noticed a strange phenomenon since having multiple sclerosis. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same thing don’t think they are going crazy.
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
When you see me, you may see my hair fixed up nicely, my makeup looking flawless, my clothes neatly pressed and my shoes coordinating with my purse. I may have everything in place from head to toe including the smile I put on and the positive attitude I carry. But underneath all the layers, below the wheelchair, urine bag and leg braces, the real me exists.
You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds.
Have you ever gone out to your car on a cold frosty morning in a hurry to get somewhere? You crank the car and turn the defrost up on high in hopes of melting the ice covering your windshield but it’s just not thawing out quick enough for you. So you do what we have all done at one time or another, you put the car in gear and try to make your way down the road with only a small section of the window defrosted. It’s not easy to do but you know the window will keep thawing out as you drive…
I don’t know why people like to point fingers when something goes wrong. It seems like a common occurrence these days. I know when it come to multiple sclerosis people like to point fingers at something or someone as to the cause. I have heard many crazy as well as plausible theories myself. Maybe you’ve heard some of them too. Things like…
When I was little, I wanted to be a teacher…I also wanted to be a scientist, a musician, a secret agent and an architect. Never once did I want to be a person living with a chronic illness. That never even popped into my head. But here I am living with multiple sclerosis. It was never my dream, but it is now my reality.
People don’t seem to understand how weak and exhausted my body is at every moment of every day. I must wear this smile on my face really well. It definitely covers up the daily struggle of living with a chronic illness. Sometimes I think my smile is the only thing that’s keeping me together; that if it should fall off, I’d fall apart too. Somehow I get through my day with my smile in place…exhausted, weary and worn out, but still smiling.
Last week was a long, hard week. I pushed through pain, frustrations, difficulties, weariness, weakness, emotional stress, financial strain, the unexpected and loneliness. If I was to list everything I dealt with the list would actually take pages and pages of writing. That’s why it’s so hard to answer someone when they approach me with the question we all hear…”How are you?”
Can I be real for a moment? No pretense. No hiding behind broken smiles or covering up the reality of what life is like for a person with multiple sclerosis. No complaining. No whining. Just the open and honest truth. MS sucks…
I love it when I actually sleep through the night. It doesn’t happen often, and didn’t happen last night, but I love it when it does. I’m not sure why I couldn’t sleep last night. I even went to bed early…exhausted. I hate how I have times when all I want to do is sleep, and other times when I can’t sleep at all.
- 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.