Tuesday, January 22, 2008

Experience Multiple Sclerosis

For anyone who feels the isolation of enduring the symptoms of MS while all the healthy people around you are oblivious to what's going on, they can now join in!! There are only a few tools necessary to aid in their thrill ride.

First, you will need a pair of stilts with high heels attached. Stand up on the stilts and try to walk around in the high heels. Feel like falling over? Good! That's what it feels like trying to walk in any kind of shoes when your balance is off.

Next, fill your home with mud until it's waist deep. Try walking around doing your normal everyday chores. Hard to walk? Does every step take effort and wear you out? Good! You're doing it right. That's how it feels when you have weakness in your legs.

Now, after you have spent all day -- and then all night -- removing every speck of mud from your home and belongings, fall back into that easy chair and relish this next feeling...fatigue. You are so utterly tired that every muscle in your body is screaming out with exhaustion. Could you live every day being that tired? No? Most people with MS suffer from chronic fatigue which can leave you feeling like you just pulled an all-nighter...but you just woke up.

Okay, you're done resting! Up and at 'em! Grab a bucket and fill it with ice. Now go run cold water in the tub, pour the ice in and then get ready to stand in the water. Brrrr!! Cold right? Or is it so cold it actually feels like it burns? Welcome to my world! Neuralgia is what it's called, but it doesn't do the burning icy pain justice, does it? You can get rid of the pain, but only with drugs.

Now, on to another fun one! Go out back to the tire swing. Have your buddy spin you round and round and round until the rope just about knots up from being twisted. Have him stand back and let go. As soon as you are done whirling around, immediately get out of the tire swing and go try to take the trash out or carry the laundry to put away, or go to work...that feeling that we used to seek out and relish as a child isn't so fun any more, is it? Some people with MS have to deal with dizziness that never goes away. It's no fun for them either.

Now, walk around in swim fins all day. Just for the heck of it. You have drop foot.

Go run a mile and notice that tightness and cramping in your calves. You know why you have it -- you just ran a mile. People with MS get it and it's call spasticity. We don't have to run at all to get it. In fact, we don't even have to stand up.

Next, go look directly at the sun. Just stare at it for a while. Then when you look away, do you see that black spot? Seems like it takes forever to go away? Try dealing with that for months. It's called Optic Neuritis when we get it.

Have an ace bandage around? Just for kicks, wind it real tight around your chest several times and then go about your day. They call that the MS Hug.

Drink a whole gallon of water, wait until your bladder is about to burst, then jump up and down while trying not to go. You're about to go just from reading this, right? For some people with spastic bladders, the bathroom is never close enough. Same thing with bowels, but I won't go there. You get my drift.

Sit on the floor with your legs folded up underneath you to where you are sitting on your feet. Remain that way until you can't feel your feet because they are so sound asleep. Now, get right up and try walking around. Kind of a weird feeling, eh? Can't feel your legs. Now, feel those pins and needles as your circulation comes back? Imaging being stuck at that stage... you have the pins and needles constantly and you never can quite feel your legs. Yep, MS.

Put on some oven mitts and try to get dressed. Need I say more?

All of these things happen because Multiple Sclerosis is eating holes in the protective covering of our spinal cord and brain. MS is caused when the immune system gets confused. Something goes awry and the immune system which is there to guard us and protect our bodies from illness and injury decides that our myelin sheath (the equivalent of the plastic outside covering of an electric cord) is an enemy to be vanquished. T-cells are dispatched and the myelin becomes inflamed as the fight begins. As the immune systems wins the battle, the myelin is eaten away and the electric cord which is our brain and spinal cord is then exposed, shorting out, sending signals helter skelter. We end up with the symptoms described above plus a full spectrum of others, too numerous to mention.

That's why MS is different for every single sufferer. The unique ways that holes are eaten in the myelin sheath determine what shorts out and thus what symptoms we have.

Medications have been developed to slow this never ending, incurable process, and more medicines are in research as I write this.

I am proud to be a part in any small way of moving toward a cure. My blessing is that by offering my body up for a clinical trial I get to experience the miracle of having a boring old normal life for a while. I have been relapse-free for over 8 months. Normal and boring are good things.:-D

1 comment:

  1. Brilliant post. That just about sums it up. Hard to explain to a person without MS what it feels like, but you did a good job!

    ReplyDelete