Whenever I try to explain to someone what it feels like to have Multiple Sclerosis, the only words I can utter are pain, fatigue, and weakness. These three words don’t really describe “the feeling” of MS though. In 2008, I was sent an email that contained “What Living With MS Feels Like”. It is the best description of “experiencing MS” that I have ever seen.
The author of this article is unknown so I cannot give proper credit. Just note that these words are not mine (although they certainly could be).
What Living With MS Feels Like
***When we say we can’t do something because we don’t feel well, put yourself in Our Shoes by using the examples of our symptoms below…………
– Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1-mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
– Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
– Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
– Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully, you won’t fall down.
– TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
– Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
– Tingling: Stick your finger in an electrical socket – preferably wet.
– Tight Banded Feeling: Put 12-inch wide belt around you and make it as tight as you can and leave it there for the entire day. How ya’ breathing? Now pull it tighter.
– Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot every time we do our shot.
– Side Effects From the Shot: Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink. (THIS is why some decide to not medicate their MS, much to the dismay of friends and family who just don’t get it)
– Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
– Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
– Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
– Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
– Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
– Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
allow them to periodically crawl around throughout the day, heck all day would be good too.
– Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensitive area.
– Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
several walks around the deck with your eyes closed.
– Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
– Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
– Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
– Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
– Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
– Vision Problems (Optic Neuritis): Smear Vaseline on glasses and then wear them to read the newspaper.
– Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
– Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
– Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
– Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
– Swallowing: Try swallowing the hottest chili pepper you can find.
– Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person
without MS would feel bad, now add all of the above symptoms – welcome to our world.
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.
And this one:
I want to explain a little about what MS feels like. Words like “tired” or “confused” really are inadequate, so I thought I’d try a little exercise with you if you wouldn’t mind indulging me.
First, please raise your hand if you’ve ever traveled internationally. Okay, good, that is helpful.
Please close your eyes. I want you to really try and come along with me on this trip.
You’ve been asked to take a business trip to a country you’ve never been to — let’s say somewhere in Asia [to make it really far]. It was a last minute request by your boss, so you really don’t feel prepared. Things were rushed and hectic, so you’re not sure if you packed the right stuff (you end up with a carry-on bag that is heavy and bulky), and you were late getting to the airport, so you worried the whole time that you stood in the long security lines that you would miss your flight.
You run to your gate in uncomfortable shoes and a heavy coat with your bags and are the last person to board. You are seated in a middle seat, and there is no room for your bag, so you stuff it under the seat in front of you, meaning you have no place to put your feet except on top of your bag. You are hot from running. (By the way, anyone who has seated themselves in business class, get up and move to the back of the plane for this flight.)
The captain comes on and welcomes the passengers aboard, informing them that flying time is 14 hours.
Fast forward ahead to the end of the flight. Your neighbor kept poking you with his elbow, then fell asleep leaning on you, so you couldn’t sleep. You couldn’t really eat, as your knees prevented your tray table from being level. The person in front of you had their seat reclined anyway, so it was pressing on your knees the whole time.
There is a little turbulence, but the plane finally lands. The person next to you drops their bags on your head trying to get them out of the overhead bin. People are taking their time getting into the aisle, leaving you in an awkward position while you wait. You stuff your swollen feet into your shoes and grab your bag, which seems to have gotten heavier.
You finally get off the plane. Nothing is in English (or any other language you may understand). It is 2:00 in the afternoon and everyone seems to know where they are going except you. You have not slept for 36 hours. The sun is streaming in, and everything is very bright and very loud.
So let’s have a look at how you feel at this moment:
You are so exhausted that you feel slightly nauseous and dizzy.
You’re confused: you don’t know exactly where you are or where you need to go. You know you will figure it out eventually, but right now, the lights are too bright and the sounds are too loud.
Your legs are stiff, and your feet are both tingly from falling asleep and painful from your shoes being too tight.
You need to urinate badly but don’t know where the bathrooms are.
You are too hot from the coat that you are wearing because you don’t want to carry it too.
Your bag is heavy and awkward and you feel too weak to carry it. Then the strap breaks and you want to cry.
Okay, open your eyes. That moment is it. That is MS.