A Multiple Sclerosis Night Before Christmas:

A Multiple Sclerosis Night Before Christmas

in Positive Thoughts

by Penelope Conway

 

Twas the night before Christmas, 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 had 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,

As 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 spoke 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.

In support of Multiple Sclerosis (MS) research:

https://positivewithms.com/

http://www.nationalmssociety.org

http://www.mshope.com/

https://www.cando-ms.org/

http://msfocus.org

https://multiplesclerosisnewstoday.com

http://www.momentummagazineonline.com/

https://www.msmindshift.com/

http://mymsaa.org

https://mssociety.ca

https://stumblingprincess.com

https://fumsnow.com/

http://www.msra.org.au/

https://www.annerowlingclinic.org/

#BikeMS #Brain #ChronicIllnessWarrior #CureMS #Demyelination #Disease #FightMS #FuckMS #FuckYouMS #FUMS #Lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth #MSeducation #MSOnMyMind #MultipleSclerosis #MSHope #MSstrong #MSSucks #MSwarrior #MuckFestMS #Myelin #mymsme #OverMS #LivingWellWithMS #ThisIsMS #Vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay #WorldMultipleSclerosisDay #EndMS

NEVER GIVE UP!

In support of Multiple Sclerosis (MS) research:

In support of Multiple Sclerosis (MS) research:

http://www.nationalmssociety.org

http://www.mshope.com/

https://www.cando-ms.org/

http://msfocus.org

https://multiplesclerosisnewstoday.com

http://www.momentummagazineonline.com/

http://positivelivingwithms.com

https://www.msmindshift.com/

http://mymsaa.org

https://mssociety.ca

https://fumsnow.com/

http://www.msra.org.au/

https://www.annerowlingclinic.org/

Twitter hashtags:

#BikeMS #Brain #ChronicIllnessWarrior #CureMS #Demyelination #Disease #FightMS #FuckMS #FuckYouMS #FUMS #Lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth #MSeducation #MSOnMyMind #MultipleSclerosis #MSHope #MSstrong #MSSucks #MSwarrior #MuckFestMS #Myelin #mymsme #OverMS #LivingWellWithMS #ThisIsMS #vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay #EndMS

NEVER GIVE UP!

Hidden and Invisible Problems with Multiple Sclerosis:

Posted on July 20, 2020 by MSAA

Multiple Sclerosis Association of America

By Penelope Conway

How do you explain the hidden and invisible problems with multiple sclerosis?

Every week when the nurse comes to my house, I’m always asked the same questions. Am I experiencing any pain? What kind of pain? How does it feel? How’s my appetite? Bowel movements? Swallowing troubles? Breathing? It takes the entire visit to explain everything. Pain shifts moment by moment from burning pain, to stabbing pain, muscle spasms, aching bones, tooth pain, and migraines.

I once asked her if she believes me or even remembers from week to week the answers I gave previously. How do you explain the hidden and invisible problems of multiple sclerosis to someone without MS? The intense itching is already hard enough to explain when there is no visible reason for it. All I have left to prove it happens is the remains of over-scratching my skin…arms, legs, face and neck.

I’m allergic to the normal meds prescribed for nerve pain so I am on a high dosage of opioids. It’s the only affordable med I can take that controls the pain. All of the meds I take cause me to need a daily laxative to help manage the constipation they create.

The destruction MS causes in my life takes place inside my body. The effects are seen as I move, talk and go throughout my day with disabling symptoms. If you were to see inside my body you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

My trouble with balance, cognitive difficulties, dizziness, fatigue and weakness, blurred vision…they are all hidden from view.  In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. It’s part of living.

Allow yourself to feel, get angry if you need to, cry if you must, then wipe your tears, hold your head high and conquer the day. You are a warrior that may be weary in the fight, but even on your worst days you are still fighting.

Never doubt, even for a minute, that you are special. You are incredibly special. Hold your head high today. You got this!

*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.

https://blog.mymsaa.org/hidden-invisible-problems-multiple-sclerosis/

In support of Multiple Sclerosis (MS) research:

http://www.nationalmssociety.org

http://www.mshope.com/

https://www.cando-ms.org/

http://msfocus.org

https://multiplesclerosisnewstoday.com

http://www.momentummagazineonline.com/

https://positivewithms.com/

https://www.msmindshift.com/

http://mymsaa.org

https://mssociety.ca

https://stumblingprincess.com

https://fumsnow.com/

http://www.msra.org.au/

https://www.annerowlingclinic.org/

Twitter hashtags:

#BikeMS #Brain #ChronicIllnessWarrior #CureMS #Demyelination #Disease #FightMS #FuckMS #FuckYouMS #FUMS #Lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth #MSeducation #MSOnMyMind #MultipleSclerosis #MSHope #MSstrong #MSSucks #MSwarrior #MuckFestMS #Myelin #mymsme #OverMS #LivingWellWithMS #ThisIsMS #Vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay #WorldMultipleSclerosisDay #EndMS

NEVER GIVE UP!

I Don’t Have Problems Keeping Busy, I have Problems Staying Focused:

By Penelope Conway

Posted on May 27, 2020 by MSAA

Multiple Sclerosis Association of America

I don’t seem to have problems keeping busy. There is always something that needs to get done around the house. It’s trying to find the energy to get things done that seems to hinder me. Having physical therapy, occupational therapy, and speech therapy appointments each week at home has this way of messing up any kind of schedule I’d like to put together. Most of the time a nap is required after the appointments. Although it’s wonderful to have conversations with different people than normal, it really wears me out.

Maybe one more month and I can get my schedule freed up and have an opportunity to get things done that I need done. Just last month I was out in my yard working when a guy walked past my house. He paused to chat and say hi. I found out he was a PT therapist with another home health group in town. He said he was impressed that I do my own yard work from my power chair. I got a new chair several months ago and named my old chair my yard chair. I am not so concerned with keeping it clean like my new chair.

I mow my own grass with a riding mower that I rigged with hand controls like you would add to a car so I just need to steer and brake with my hands. It wears me out and my day is done for about 2 days after I cut the grass but I always feel so accomplished when I’m done. I like that feeling.

My main problem is that if I don’t properly plan the things I need to do and line up help to make the load easier, it doesn’t get done. Between that and my lack of energy, increased weakness and the inability to hold onto my thoughts without constant reminder alerts…things just don’t get done.

I’m glad to have technology to help me out with all the alerts I set. Even when an alert sounds off and I disregard it, I have things set up to keep reminding me. Years ago, that would have annoyed me, but I find it necessary just to get through a day.

In the coming months I have a new mailbox to be add at the curb that will replace an old rotting mailbox. My brother has promised to set aside a day to dig the hole for the new post. He’s so good to me and always works hard to do things the way I like them. I never stress knowing that my family has my back.

I try hard to let people know how important they are to me. I think sometimes they get left out of the thanks they deserve. Sometimes we don’t have but a few trustworthy friends/family members. Send them a note or email to let them know how much they mean to you. It will make their day!

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. 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.

https://blog.mymsaa.org/keeping-busy-staying-focused/

In support of Multiple Sclerosis (MS) research:

http://www.nationalmssociety.org

http://www.mshope.com/

https://www.cando-ms.org/

http://msfocus.org

https://multiplesclerosisnewstoday.com

http://www.momentummagazineonline.com/

https://positivewithms.com/

https://www.msmindshift.com/

http://mymsaa.org

https://mssociety.ca

https://stumblingprincess.com

https://fumsnow.com/

http://www.msra.org.au/

https://www.annerowlingclinic.org/

Twitter hashtags:

#BikeMS #Brain #ChronicIllnessWarrior #CureMS #Demyelination #Disease #FightMS #FuckMS #FuckYouMS #FUMS #Lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth #MSeducation #MSOnMyMind #MultipleSclerosis #MSHope #MSstrong #MSSucks #MSwarrior #MuckFestMS #Myelin #mymsme #OverMS #LivingWellWithMS #ThisIsMS #Vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay #EndMS

NEVER GIVE UP!

Keeping Positive in Challenging Times:

By Penelope Conway

Posted on April 27, 2020 by MSAA

Multiple Sclerosis Association of America

Hope is made for the day that tries your understanding, when your blessings can’t be counted and the sky has changed to darkness.

Living with multiple sclerosis can be challenging. Add the required social distancing and it can make life a bit more complicated and interesting. My groceries are now delivered to my front door making it a bit more challenging to put everything away on my own, my doctors appointments are taking place on the phone keeping me on my toes to remember everything we need to talk about, physical therapy is still taking place each week at my home which is a welcomed visit even if they make me work hard and have to wear protective gear just to come over, nursing visits are also still happening and just as welcomed each week, I get a chance to chat with neighbors out for walks away from the craziness happening as I’m out working in my yard, and I have a place online to connect with others just to keep myself sane.

I guess you could say I’m still doing everything I did before but with a twist. I always say that living with MS changes normal (whatever that actually is) and everyone around me is finally getting a taste at having to find their new normal. Something I’ve been doing since being diagnosed with a chronic illness. If someone could find normal and let me know where and what it is, I’d like to know so I wouldn’t have so much work.

One great thing about the changes is I have had the opportunity to evaluate life a bit more closely and get rid of the toxic people and unnecessary things that were making life harder… without the added guilt. I have learned the benefit of good things over the need to always have the best. What is it about life that causes us to place things into those kinds of categories? The best is not really always the best and good things can actually be just “okay.” I know my life has gotten less complicated because of it and I like that.

Those who follow me online know that I have had challenges with hackers and malware making me redo my online presence and rebuild my website. That change has been the hardest because I feel like I have failed my followers out of everyone, but I’m thankful for their grace and forgiveness. Positive Living with MS is finally live and online even if it’s still a work in progress.

Someone asked me, how can you be positive in this mess happening in life today? Being a positive person who is living with multiple sclerosis sounds like an oxymoron. Is it even possible to do both at the same time? Some would say it can’t be done. They would say that MS is so full of uncertainties, pain and complications that there is no way to face it with a positive attitude. But it can be done and is being done by hundreds of people every day.

How is that possible? How can anyone keep a positive attitude while facing such hard times?

I think the word positive has been misunderstood and improperly defined for far too long…so much so that it has been an impossibility for many to attain a positive life in the midst of hardship.

Being positive has nothing to do with how many jokes you can tell, how funny you are, or laughing all the time. It’s not about living in an I Love Lucy episode or a Three Stooges world. It’s not about hiding from the reality of what you are going through by trying to cover up the struggle in an attempt to keep the world from knowing it exists. MS exists. Hard times are real. Tears happen. No amount of covering it up is going to make it go away or lessen its troubles. Let me tell you what it means to be positive and living with MS…or any chronic illness.

Being positive means that even though you are in the middle of the storm of all storms in life, you get out of bed to face a new day; even when the pain has you doubled over in tears, you keep going; even when your brain is foggy and your words are muddled, you give of yourself; even when your life has flipped upside-down and inside-out, you fight because you simply refuse to be defeated.

Everyone has struggles and hard times, but it’s your attitude that determines if you are living it positively or not. Do you go through your day constantly complaining? Or do you try to find a small ray of light in the trial…a smile in the struggle? You can do this!

It’s alright to have negative thoughts when your path bends the wrong way or the unexpected happens. Don’t beat yourself up when negative feelings, thoughts, or words creep into your life.

You haven’t done anything wrong. That’s just a part of being human. It’s okay to cry, be afraid and get frustrated.

The challenge is to not let those negative things pull you down and hold you back from moving forward. Being a positive person, it not about pretending things are great all the time. Being positive is about allowing yourself to be real, to feel, cry, struggle and fight, yet still hang on to hope in the process. Hope doesn’t just happen…it’s made. It’s made for the day that tries your understanding, when your blessings can’t be counted and the sky has changed to darkness. Hope is made when hope is all that is left. It’s made for you.

*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.

https://blog.mymsaa.org/keeping-positive-challenging-times/

In support of Multiple Sclerosis (MS) research:

http://www.nationalmssociety.org

http://www.mshope.com/

https://www.cando-ms.org/

http://msfocus.org

https://multiplesclerosisnewstoday.com

http://www.momentummagazineonline.com/

http://positivelivingwithms.com

https://www.msmindshift.com/

http://mymsaa.org

https://mssociety.ca

https://stumblingprincess.com

https://fumsnow.com/

http://www.msra.org.au/

https://www.annerowlingclinic.org/

Twitter hashtags:

#BikeMS #Brain #ChronicIllnessWarrior #CureMS #Demyelination #Disease #FightMS #FuckMS #FuckYouMS #FUMS #Lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth #MSeducation #MSOnMyMind #MultipleSclerosis #MSHope #MSstrong #MSSucks #MSwarrior #MuckFestMS #Myelin #mymsme #OverMS #LivingWellWithMS #ThisIsMS #Vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay #EndMS

NEVER GIVE UP!