World MS Day

World MS Day is Wednesday, May 30.  I really like the World MS Day website.  After clicking through the intro about MS, MS patients' postcards are presented in which they tell their stories.  The ones that I've read through inspire me to trudge along though this wacky illness.  Today is the 3 month anniversary of my MS Day.  My originally story is here.  Double vision is gone, but fatigue is here.  Random muscle contractions are here.  Random itching spells hit.  Pins and needles poke me randomly.  I give myself Betaseron shots every other day.  I have hot flashes from the Betaseron.    I practically melt in the sun.  I don't look sick.  People ask how I am- I'm okay.  I have up days, down days, up moments, down moments.  This is hard, but it could be so much worse! 

More MS videos

I had only looked at 1 MS video on YouTube before, but with World MS Day approaching, I'm finding a lot of videos (and I'm looking more).  I don't like to look at too many other people's MS stories at once because they bog me down and make me feel "woe is me."  But these are pretty good about showing what it's like.

I do not care for all the references to being drunk or on weed since I don't have that frame of reference, but otherwise, her descriptions are pretty right on.

Distinctions

Since February 29, I have learned the difference between

• being tired
• being sleepy
• being fatigued
• and being exhausted, running on empty no reserves left, exhausted
• and then I push to finish one last thing
• which reminds me of just one more little thing I need to do like finish this post
• and it's getting close to lunch time...... I will eat then nap, or maybe I'll just nap

I'm too exhausted to write abt MS fatigue, so here's a video

Good little video

I just ran across a short, simple explanation of MS.  MS doesn't always mean wheelchair.

How We With MS Feel

From www.patientslikeme.com 

My symptoms

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 is as tight as you can and leave it there for the entire day. How ya' breathing?

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 everytime we do our shot.

Side Effects From the Shot: Bang you 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.

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 one... Bzzzzzzzzzzzzzzzzzz
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 litre 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.

Bowel Problems: Take a 4 day dose of an anti-diarrhoea 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 appear.
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 chilli 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.

Then 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.