World MS Day 2011. I could write forever about MS and how it affects me. Instead, I'm just going to copy and paste an email forward I once received. I think it shows what having MS can be like pretty well.
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
What You Can Do To Understand:
Painful Heavy Legs
Tightly apply 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 are you feeling?
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.
Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments. Wear them for an entire day.
Stick your finger in an electrical socket - preferably wet.
Tight Banded Feeling
Put 12 inch wide belt around you. Make it as tight as you can and leave it there for the entire day. How’s your breathing?
Fill one of our spare needles with saline solution - saline won't hurt you. Give yourself a shot every time we do a shot.
Side Effects from the Injections
Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body tightly with an ice bandage then finally treat yourself to some food or drink that's gone off.
Trouble Lifting Arms
Apply 20 lb wrist weights and try and reach for something on the highest shelf in your house.
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 one...Bzzzzzzzzzzzz zzzzzz
Balance and Walking Problems
Drink 100 proof 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 0.5 litre remote controlled water bag and drip tube in your pants and 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.
Pins and Needles
Stab yourself repeatedly with needles all over your body.
Sit on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
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.
Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners. Repeat for a minimum of 3 weeks. At the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear.
Make a full pot of boiling water and then get someone to fill a water pistol with the boiling water and shoot it at you all day long.
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 Head to 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.
Have someone make a list of items to shop for. When you come back that person adds two things to the list and asks 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.
Wear one swimming flipper and take about a 1/2 mile walk. Nothing else needs to be said for this one - you'll get it.
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.
Dream that you have lost complete feeling in your feet. When you wake up you wiggle your feet, and 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.
Try swallowing the hottest chilli pepper you can find.
Heat Intolerance - 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!
Finally... 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 counselling is the answer.
We don’t want pity – we just want understanding!
Not everyone with MS is going to get all of those symptoms - it's a hugely variable condition. And there are other symptoms that haven't been included. Still, I think it gives a pretty good introduction to what MS is like.
A good place to find out more about MS is the MS Society website.