Being Slow Isn’t a Bad Thing

Eliminate MS Stress - Being Slow Isn't a Bad ThingBy Penelope Conway

Is it time for bed yet? That was my first thought as I woke up this morning. I glanced at the clock and it was proudly displaying 6:30 AM. That’s way too far away from the sun going down and me climbing back into bed. I yawned, tried to stretch and yawned some more but only seconds passed. Now the clock says it’s 6:31 AM. At least it’s one minute closer. Maybe I can just lie here for another 720 minutes. Continue reading

Share

My Life with Multiple Sclerosis… I Got This

Life with Multiple Sclerosis...I Got This

By Penelope Conway

No one likes to think about where multiple sclerosis may lead…not even me. But I can tell you from my own experience, ignoring the possibilities of progression is to live in denial and will only set you up for defeat. Trust me, I lived there my first year after diagnosis.

I chose to deny what was happening in my life because I was afraid of the unknown. Continue reading

Share

My Multiple Sclerosis Life is Filled with Seasons of Change

MS changes

By Penelope Conway

This morning I made an absolute mess of things. I was making my morning coffee, and for the umpteenth time, I spilled the coffee grounds all over the floor and myself because my hands fumbled and wouldn’t cooperate. I cleaned myself up and turned the coffee pot on so it could brew me a cup, but left the mess all over the floor for later.

As I’m writing this, I’m sipping on a freshly brewed cup of coffee while sitting in my bed knowing that there’s a mess in the kitchen waiting for me to tackle, but do you know what? Continue reading

Share

It’s Okay to talk to Your Doctor About the Tough Things

Talking to Your Doctor About the Tough ThingsBy Penelope Conway

Doctors are smart. They have gone through years and years of study, had hands on experience, seen the good bad and ugly, and want the best for their patients. We’ve been told over the years to trust them because they know what they’re doing, but in today’s day and time, we have access to vast amounts of information that many times even doctors haven’t researched for themselves which gives us more choices and options in how we manage our own health.

My first neurologist, the one that diagnosed me after MRI’s and a spinal tap, wasn’t Continue reading

Share

I Have Multiple Sclerosis and I Still Smile

By Penelope Conway

When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside giving other things more importance. Things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart. It just seems impossible…absurd…oh, so wrong. Continue reading

Share

Traveling with Multiple Sclerosis Isn’t Always Easy

By Penelope Conway

Before multiple sclerosis came along I was an avid traveler. At different times I even lived and worked In Germany, France, Mexico and Jamaica. I loved getting out and meeting new people, experiencing different customs and enjoying amazing new food.

When my mobility became a struggle, it was then that I realized just how inaccessible so much of the world truly is, both here in America and abroad. You never really think about those things until they affect you personally. Continue reading

Share

What do you do when you don’t know what to do?

By Penelope Conway

My life turned into a whirlwind of chaos after I was diagnosed with multiple sclerosis. I was faced with more choices than I knew what to do with. Which medications do I choose? What therapies are needed? What supplements help? What diets work? Is there really a cure? So many questions and so few answers. Continue reading

Share

It Takes a Village to Navigate This Life with Multiple Sclerosis

By Penelope Conway

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just couldn’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up.  You deserve to be happy.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Share

Let Today Be the Start of Something New

By Penelope Conway

I woke up this morning yet again to the reality of multiple sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day with Bill Murray. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I don’t know when it started for me, but day after day my life became a blend of naps, computer screens, brain fog moments and doctor appointments. Trying something new just didn’t seem to fit into the mix of things.

From the outside everything in my world looked fine. I had a roof over my head, food in my pantry, an internet connection to get online with and friends both near and far, but what couldn’t be seen were the limitations I began having because of MS and the stresses that came with those limitations.

I failed at everything I tried to do. I had a hard time clipping my own fingernails, couldn’t drive safely even to the corner store, ran into walls that weren’t even in my way, tripped on air, forgot appointments and dropped everything I got my hands on. Talk about depressing…ugh! No matter how hard I tried, I couldn’t find the stop button for the out of control spinning chaos that surrounded me.

If someone approached me with even the thought of getting out and doing something new, at that time in my life I had become so defeated that I couldn’t hear what they were saying and would lash out at them for even suggesting such a thing. All I could see were the things I couldn’t do. Those were not some of my proudest moments, but great friends help you get through the rough patches in life, and thankfully I have great friends.

I call them my Push Coaches. They pushed me to see past my limitations and helped me to see that there is always more than one way to doing something. I discovered that the only real limitations I had were the ones I created for myself and realized that trying new things actually made me happier in life.

As weird as it may sound, stepping out from my daily routine brought excitement to my day and became a welcomed change of pace to the day-in and day-out rut I had gotten myself into.

Sure, my legs may not work well anymore, my hands may fumble with everything I get a hold of, and vertigo may keep me from seeing straight, but those things should never stop me from trying something new. I was determined to try something new at least once a day.

At first I did simple things like taking a different route to the grocery store or wearing crazy colored socks. Those simple changes to my day surprisingly made me smile more. After a short period of time I found myself seeking out other things to try like community art classes and volunteering at the local hospital. I began looking forward to the changes in my day.

It takes a lot of courage to get out there and do something new. If I could be your Push Coach today, I would encourage you to step out from your daily routine and try something new. Change your hair color, try a new tea flavor, join a book of the month club, enroll in cooking classes…just get out there and try something new.

Don’t let MS keep you from having new and exciting adventures in life. Besides, you just might surprise yourself and find a hidden talent you didn’t even know existed.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Share

A Multiple Sclerosis Night Before the Holidays

By Penelope Conway

’Twas the night before the holidays, when all through my body,
Not a nerve was behaving, making me move rather shoddy.
My daily activities were chosen with care,
In hopes that each one could be done from a chair.

Each word that I spoke seemed to come out all wrong,
So much to be finished, I had to stay strong.
And John in the kitchen, and Missy making frappe,
Everyone busy working, no time for a nap.

When somewhere outside there arose such a clatter,
I peeked through the window, to see what was the matter.
I tried to move fast, to get to the door,
But I didn’t quite make it, and wound up on the floor.

As I lay on the rug, making sure nothing broke
Through tears I could see it, even gave it a poke.
Yes, what to my wondering eyes should appear,
But the cane that I lost, earlier this year.

Then the front door cracked open, and before me he stood,
I immediately knew help had arrived which was good.
And more rapid than eagles, his phrases they came,
And he whistled and shouted, and called them by name.

“Now hang on, now slow down, now take more life pauses,
With stressful, and chaos, and tearful day causes.
To the end of the checklist, to the end of the hall,
Now dash away! Dash away! Dash away all!”

And then I could see, as I wiped away tears,
Why, his words and his wisdom had settled my fears.
As I sat on the floor, too weak to even move
He knelt down beside me, and said I have nothing to prove.

He looked a bit weary, as a glance we exchanged,
And he said that my focus is what needs to be changed.
What’s important is family and those who are nearby.
(On that last one he actually said with a twinkly eye.)

Your weakness…it’s real. Your limits…real too.
MS has this way of making even brilliant days blue.
He smiled as he spoke, and I knew he was right.
No more pity party moments or MS fist fights.

He spoke not a word more as he helped me to stand.
I found myself smiling as I reached for his hand.
I sat on the couch as he gave me a nod,
He helped me to see that my thinking was flawed.

Then he sprang to his sleigh, and to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, “You’re doing great, don’t forget,
To pause more and smile, you have nothing to fret.”

 

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Share