I received this post some time ago and thought it explained what my symptoms felt like pretty good. I took the liberty to tweak it just a bit to make it fit me a little more personally.
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… 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.
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.
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 is as tight as you can and leave it there for the entire day.
Shots… Fill one of our spare needles with saline solution and 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. mE PERSONALLY, NO LONGER TAKE THE SHOTS. Tried them all and they made things worse. So Dr’s have me on a “wait and see basis” How would you like living like that? We don’t know when it will happen, we cant stop it, so we will deal with it when it comes…
Trouble Lifting Arms… Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house. Add Cushings on top, then even drying your hair with the towel or drying off after the shower exahsts you.
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 one…bzzzzzzzzzzzzzzzzzz , or get the woosh woosh, pattern over and over in your head.
Balance and Walking Problems… Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.
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. Oh and carry change of clothes and wear what feels like a mini diaper 24/7 too, see how sexy you feel. (Boy, is THIS one extremely true!)
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 or better yet….Get a large tattoo.
Dizziness (Vertigo)… Get on a gently rocking boat all day and all night and take several walks around the deck.
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.
Bowel Problems… Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
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. Usually on your feet.
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?
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. Right smack between your shoulder blades. Get zapped even reaching over to unlock the door on the inside of the car.
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. This is the worst, drive, forget where your going, or where your at.. Scarey feeling.
Foot Drop… Wear one swim fin and take about a 1/2 mile walk.
Depression… Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one 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.
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.
And 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 counseling is the answer. Or just lock yourself away in a room, and no one knows your gone.
Because ” You don’t look sick” we get all sorts of funny looks if we park in the Blue parking spaces. Or hear about a magic type of vitamin someone found on the Internet because cousin so n so used to be so bad off they were in a wheel chair, now they are running marathons. Or come up with some special way of eating by cutting out, any foods that are white, red, sweet or processed. Because someone always knows someone who “used” to have MS but now they seem like they are cured.
Yes this is a slightly exaggerated look at how some of us feel, with a little humour thrown in. The truth of the matter is there are no cookie cutter symptoms that everyone either has or doesnt have. And just because we have one group of symptoms today, that doesnt mean they will be exactly the same tommorrow, or even in the next few hours. These are all dependant upon where our lesions or scars IE: Multiple Scarosis (sclerosis) are loacted at and whether or not they are flaring up at the time. Each individual has to experiment through trial and error what works or does not work for you. Don’t just sit around and wait to be “fixed”. No,I am not saying we can cure ourselves. But, what I am saying, is that you cannot just settle with it. You find ways of making things easier on you, realize what aggrivates things and stay away from them. Don’t just assume that because something either did or did not work for someone else, doesn’t mean it won’t work for you. It takes time to realize what it is your body is doing, and learn to find ways to work along with it. For me, cognative skills are a real challenge for me. Many times I set off to drive somewhere I have been a hundred times, only to find myself either lost or pulled off on the side of the road trying remember where in the heck I was going. Multi tasking, of that I can just forget. One thing at a time and that has to be done by keeping lists everywhere or by using a Palm Pilot. (My kids called that Mama’s Brain) I can’t tell you how many things get started or at least thought about , then pushed aside only to take on something else that never gets completed either. Luckily, I have a very patient and understanding Family. Although, I will say my Daughter tried numerous times to pull one over on my by saying that she had either already “told” me or “asked” to do something and that I just forgot about it. “I did tell you Mom, you know how your MS makes you forget sometimes”… Man oh Man did that make me hot. I can laugh at it now, but surely did not find it amusing at the time.