The ABC’s of Multiple Sclerosis

A life with Multiple Sclerosis is filled with some crazy moments. It’s not a disease for wimps, that’s for sure. Take some time to learn more about the things those of us living with MS face.

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 a nasty scar that disrupts the nerves used to 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 tongue to our ribs to our big toe. Think of it as a constant Charlie Horse, just not always 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 are our friends. They need some appreciation from time to time and we get to be the ones giving 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 while reading a menu, 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 jitters. 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…that’s about how easy it is for us to find our words at times.

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. That old saying mom use to say…don’t talk with your mouth full…we understand that all too well now.

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. 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 next to your leg.

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.

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 in 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 while standing…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

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.

13 replies
  1. Gale Vester
    Gale Vester says:

    Thank you, thank you, thank you for writing these! A-B-Cs seem so elementary, until they’re naught. Or not.

    I’ve been stuck with this MonSter for 9 years, and I’d always thought that I appreciated progressive things, until this, showing that progressive rock music is about as progressive as my brain will go, before buckling under and letting my legs limply lag… So, yeah.

    And now, I am trying to remember what the holy f#ck I was going to write in this final paragraph. Feh.

    O.o

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope for lighting up our day. Well done for the list. A good image for MS people and what can happen anytime and anywhere that we have no control of. Even so we have to make humour out of them to make it more fun of our life.

  3. Sarah Donovan
    Sarah Donovan says:

    Thank you for sharing and spelling this out for to forward to others. Brilliant.

  4. Savanna
    Savanna says:

    Brilliantly written, as always!
    So many things G.S. we have to endure from this disease.

  5. Meeya
    Meeya says:

    I can clearly see the the searingly bright light chain right above your head, as you’re having really brilliant ideas again and again..! 🎆 Thanks so much for sharing all the fun with us! 😀

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