March is MS Awareness Month:

Please make a donation.

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

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!

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/

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!

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!