How Does MS Feel?

Someone asked me the other day, what did it feel like having Multiple Sclerosis, I couldnt explain it really as it is so complex, i am feeling flat as a pancake right now, and my emotions are just non existent as i am just too plain tired to explain, but i found this.

I read it first, and apart from the bit about SHOTS as i dont have injections, this is how i feel EVERYDAY in some form. Not just now and then EVERYDAY.

I stay upbeat as thankfully they dont all happen in same day, but everyday, i get a combination of the list. Right now my fatigue is at an all time high because its so muggy and humid. My friend read the list and was gobsmacked. She really was shocked at how bad my symptoms must be, and was amazed i was so upbeat. I told her what else can I be? Its either that or give in to the MonSter and i aint about to do that.

I thought i would share it. Not sure if you have seen it before but i am printing it off lol, and getting it put in a frame.

Yup, that’s what it is alright.

A few years ago there was a terrific website produced by an Australian living in America called MS Sucks. It’s gone now but before he closed down I got his permission to use his MS Perspective Kit. I’ve used it a couple of times in newsletters but not internationally. So here goes;

There are a lot of stories about the frustrating empathy, or lack of, that MS engenders in people who really should know better. Rather than say “some people are just jerks”, which is true but not a productive thing to say, we’d like to propose the MS Perspective Kit for people who lack the ability to see things from the right perspective. The contents are as follows:

  1. One complete set of videotapes of any soap opera.

  2. One large pot of coffee.

  3. Two pairs of panty-hose both, one or two sizes too small.

  4. One pair of rubber gloves.

  5. One set of weighted wrist and ankle straps, 5 pounds in weight.

  6. One man’s leather belt.

  7. Two bungee cords, each approximately two feet in length.

  8. One roller skate (either foot will do).

  9. One women’s high-heeled shoe (preferably for the other foot unless you’re feeling really mean).

  10. One walking stick.

  11. One roll of duct tape (optional).

  12. One tough guy, preferably hairy, tattooed, and looking like a thug.

  13. One cute, bubbly, perky, well-dressed friend or co-worker.

  14. One megaphone.

After you’ve accumulated the things on the list, find a night when you and the Jerk can be alone together at home, and I mean the whole night, say from midnight until about 8 am the next day. I recommend a Friday evening (unless you’re, again, feeling really mean, in which case you can make it a work night). Assuming you’ve chosen Friday evening, you’ll need the Friend and the Tough Guy for approximately an hour on Saturday morning. You’ll also need a television and a VCR.

Phase 1: The Preparation

The first thing you need to do is to make the Jerk stay up all night watching the tapes of soaps using liberal applications of the coffee (and the duct tape if necessary, but I’ll leave that up to your imagination, girls). It’s imperative that the Jerk greet the dawn red-eyed, sleepless, and incapable of coherent thought.

Phase 2: Donning the Equipment

The application of the bulk of the equipment may require the use of the Tough Guy to get your Jerk to comply. What we’re going to be doing is simulating some of the symptoms of MS. These may not be your symptoms, but I’ve started with some of the common ones just for the sake of discussion.

Banding

Banding is the feeling that you have tight bands wound around your middle. We’re going to simulate that using the two pairs of too-small panty-hose. Make him put them on, one on top of the other. Then let him dress as if he’s going to work. You can cut the legs off the panty-hose, we just need the tightness in the gut.

Numbness

We’re going to simulate numbness in the hands by using the rubber gloves. Make him wear them. Use duct tape to hold them on if necessary.

Fatigue

We’ve got off to a good start with the sleepless night, the “Crossroads” reruns, and the pot of coffee. Now we’re ready to get serious. Strap the wrist and ankle weights on him. Make sure they’re good and tight. You can buy them in most stores that carry exercise equipment.

Spasticity

To simulate spasticity, get the bungee cords and hook one end of each into a wrist strap and the other end into his belt (make sure it’s a good, strong leather belt that can take the strain). The idea is that each time he has to raise his arms, he has to fight the bungee cords, just like some MS sufferers have to fight their own spastic muscles.

Balance

Now for the footwear. Put the roller skate on one foot, the high-heeled shoe on the other. Let him balance using the walking stick. Give him a while to get used to tottering around on the high heel while the other foot tries to fly away under him.

Phase 3: The Attitude Adjustment

Now you force him to work. Whatever The Jerk normally does – work on the computer, do some plumbing, practise a presentation that he has to give at the office. Whatever it takes.

One small detail though; From time to time, get The Friend to gush into the room, full of energy and vitality. Above all, she must be happy, bouncy, perky, earnest, and energetic.

Phase 4: The Denouement

When you think he’s had enough, send the Friend and the Tough Guy away. Make the Jerk stand up in the centre of the room. Turn on the megaphone, crank up the volume, and shout through it:

"This…

(pause for effect)

is how…

(another pause)

I feel…

(take a deep breath now for a really good shout)

ALL THE TIME!"

© Multiple Sclerosis Sucks

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These are brutal descriptions. They are intensely graphic and pertinently accurate. I’m years into the beast and I’m cringing reading them. But they are so very true. The weather is too hot for me today so I’m waiting for a mate to help me with the shopping.

Best wishes, Steve.

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