The ABC’s of a life with Multiple Sclerosis

Life with Multiple Sclerosis is filled with some crazy, unexpected and painful moments. It’s not a disease for wimps, that’s for sure. Here are some of the basics of living with MS.

A – awareness
There is still a huge lack of understanding by the general public about MS. We are not contagious, we didn’t do something to cause MS in our lives, there is no known cure, and it’s not all in our head…well actually it is. Our brain MRIs prove that.

B – brain lesions
That’s just a fancy way of saying that our brain has wounds inside. Some of them heal well while others leave nasty scars that disrupt the communication along the nerves that make our body work. That’s the reason we do the things we do…most of the time. Some times it’s just who we are and has nothing to do with our brain.

C – cramps and spasms
Our muscles tighten up causing us great discomfort and pain. Any muscle can be affected from those controlling our hands, to the ones around our ribs, to those that move our big toe. Think of it as a constant Charlie Horse, just not in the leg.

D – drunk walking
We have full intentions of walking without bumping into things but it seems the walls, floors, tables and chairs have become our friends. They need some love and appreciation from time to time and we just so happen to be the ones to give it to them.

E – eyesight problems
Our vision can become blurred, doubled, dimmed or even gone. Sometimes it’s even accompanied with pain and color loss. So if you see us wearing uncoordinated clothes or find us making funny squinting faces, no need to stare…that’s just how we roll.

F – falling down
We are professionals at falling. It’s our specialty. We can fall up a flight of stairs, getting out of bed, and even on flat surfaces. If there was an Olympic sport for falling, we would be gold medal winners for sure.

G – good days and bad days
We don’t plan them…they just happen. Some days are good, some are bad and others are downright terrible. That doesn’t change over the years so if you ask if we are feeling better we don’t know how to respond. How we feel can change from day to day, hour to hour and minute to minute. Feeling better? Compared to what? Yesterday? This morning? Ten minutes ago?

H – heat sensitivity
Trips to the beach on a hot summer day, time in a hot tub or sauna, or even blowdrying our hair causes our symptoms to worsen. Air conditioning is a must. We are thankful for its inventor and would give him an award if we could.

I – IV steroids
Oh, the dreaded round of IV meds. Most of the time they help to lessen the inflammation in our brain and spine, but they create such terrible insomnia while we are on them that we may end up scrubbing the floors, power washing the house, detailing the car and painting the basement. Just don’t look at us the wrong way because they also cause terrible mood swings and have the potential of turning us into the Incredible Hulk.

J – jitters
We make a great omelet and can whip those eggs to perfection with our hand tremors. If only we didn’t keep dropping the whisk in the process.

K – krazy mixed up words
Toss our vocabulary into a blender and let the words get chopped to bits. Now dump them out and try to form a sentence or even a word. At times that’s about how easy it is for us to find our words.

L – laughing through the tears
We cry and cry often (most of the time you don’t even know it), but we laugh too and many times you will find us laughing through the tears. That’s not a sign of weakness. Our tears are just some of our strength leaking out. But don’t worry, give us a hug, spend some time with us or help us out when we need it…that’s all we need to be replenished.

M – memory problems
Sometimes it’s hard to remember schedules, appointments, names and even what someone said 5 minutes ago. Thoughts get lost more than our car keys. If only we had a “clapper” to help us find them.

N – numbness
Many parts of our body go numb much like when someone crosses their legs and their foot falls asleep. Oddly enough, we feel pain through the numbness. If only we could get them to wake up. We would gladly offer them some caffeine or an energy drink if it would help.

O – oops, oh well
Asking us to catch something when you throw it to us, and us actually catching it…now that would be something to cheer about. See, we get excited over the little things.

P – pain and more pain
Our pain isn’t because we hit our thumb with a hammer. At least that kind of pain you could see. No, our pain shifts and changes throughout the day and at times can become unbearable. So much so that even wearing socks or covering up with a sheet in the bed hurts.

Q – quiet please
Loud noises can be super annoying and seem to become amplified in our heads, so if you see us sitting in the quiet…we like that. Loud parties, restaurants and get togethers are taken in moderation so we don’t overwhelm our nervous system.

R – relapses happen
It’s just a part of life with MS…it’s called a progressive disease for a reason. It may take years for a relapse to happen or only months…though we pray for it to be years.

S – swallowing difficulties
It’s amazing how many muscles and nerves coordinate to do something as simple as eating. One nerve out of whack and we could swallow wrong. It takes concentration and effort to chew and swallow. More than most people realize.

T – tingling
Pins and needles is what we call it and they don’t go away no matter how much we try to massage that area of our body. It’s something we learn to live with and try to ignore. But ignoring that kind of thing is about as easy as ignoring a spider crawling across your big toe.

U – UTI
No, that doesn’t stand for Under The Influence although we very well could be with all the meds we take. Our bladder causes us difficulties. It’s not something we like to talk about, but it is a reality of what we have to deal with. So when we say we have to go to the bathroom, don’t stop us. We may run you over in order to get there in time.

V – vertigo
We don’t need to buy a ticket for an ocean cruise, we have one in our head every day. If only we could get a few Hawaiian shirts, drinks with little umbrellas in them and an all you can eat bar to make it feel more festive.

W – wheels, canes and braces
Oh the fun we get to have pimping out our walkers, wheelchairs, canes and braces. Now if someone could invent a zapper that we could use on people when they are rude to us because of our disabled parking tags or slow moving we’d be in business.

X – X-rays and MRIs
The rat-tat-tat noise of an MRI machine can be slept through. We know that from experience. Our medical charts are filled with images of our insides. I guess you could call us Super Models…we are so photogenic.

Y – yawn, yawn, yawn
We have a constant yawn from the moment we wake up until the time we go to bed. Being able to wake up rested is a fairy tale from a land far, far away that no one has found yet. It must be around the corner from Neverland or next to the pot of gold at the end of the rainbow.

Z – zings down the spine
If you want to know what it feels like to stick your finger in a light socket, just ask. Looking down at our toes…zing, there it goes. A lightning bolt down the back of the neck and all the way to our toes. Maybe that’s what helps to light up the light bulb over our head when we get a bright idea.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. 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. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

51 replies
  1. Lisa Neville says:

    Very well done, Penelope!! You’re a brilliant writer and appreciated by so many! All your posts keep me from feeling alone. You can make me laugh when I feel like crying! Thank you! <3

  2. Wendy
    Wendy says:

    😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡

  3. Sue Bennison
    Sue Bennison says:

    Another excellent list – and I do like lists. I don’t find this long list of symptoms depressing because you can make use of it: could be used as your own personal check list, pre Dr’s appointment check list or even to explain things to family and/or friends.

  4. Michelle Price says:

    I need to send this to my work and then maybe they will have some understanding . Scary to think they don’t seeing it’s a youth disability service

  5. Meeya
    Meeya says:

    I love you to bits for this! ❤
    There’ll be a printout of this on my office wall as of next week…

  6. Patty Solis says:

    I have learned the following to survive MS:
    1.learn how to say no
    2. Learn how to take rests
    3. Learn to take meds if they are needed (such as pain medication)

  7. Lauren
    Lauren says:

    Problem is, time slides by. Never married, no kids. But at least my parents didn’t divorce me. Plenty of cause to.

  8. Adrian Sohn
    Adrian Sohn says:

    That is sooooo true
    Thanks for this
    My memory issues are dealt with by my iphone
    It happens, I enter it
    Names , I put them in my contacts
    It’s not the solution but it helps
    Do what I can!

  9. Kerri Shimko says:

    WOW. Pretty right on. The UTI part!! Just got over another one. Finally being sent to a urologist. Most doctors don’t believe it is MS related. I totally believe it. Stay strong y’all!!

  10. Valarie Ellen says:

    Every letter stated perfectly!! Thank you for all your postings-they make me laugh, cry, and feel validated as we go through this journey. ❤️

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