Wednesday, May 27, 2009

World MS Day

As the number of documented cases of Multiple Sclerosis grows, so does awareness. With that, today has been officially recognized as the first annual "World MS Day".

So, what does that mean? It means that the various MS organizations world wide are finally starting to work together for a greater cause. It means today is the day to take a moment of your day, and educate another about what MS is. It means today is the day those of us with MS band together in hope that maybe, just maybe, this will be the last annual World MS Day because a cure will be found.

What am I doing for it personally? Well, I have an orange "Find a Cure" ribbon magnet on the back of my car, which is always there. I also pretty much always wear one of my two MS bracelets. Heh, and of course, I'm updating this blog. A lot of you know I have been a resident of the virtual world "Second Life" for a few years now. In Second Life, I am a member of a couple MS support and activism group. I always have a post on my profile talking about MS. But today, in honor of World MS Day, my cute little character is walking around with a tag announcing what day it is, and she's wearing orange. This may sound funny to some, but honestly? Second Life is where I find the most opportunities to educate on MS. I meet dozens, if not hundreds, of people from around the world. Many many more than I would ever meet in my real life. I am quite open about having MS, which actually does quite a lot to call attention to it. Why? Because my current avatar is a hot little blond neko, who looks anything but "sick". It's a perfect example of decieving looks can be, and how just because someone looks healthy doesn't mean that they are.

So... that is my challenge to everyone reading this. Take just a few minutes of your day, and educate someone about MS. Together, through education and research, I know one day we will find a cure.

Be Well All!

Sunday, May 3, 2009

The Truth About Living with MS

As I write this, I've spent the better part of my day sleeping. Why? Because fatigue is seriously kicking my butt once again. I hear often "but you get more sleep than anyone", or "just take more vitamins" from well meaning people. Or, I hear "yeah I'm tired too". What people don't understand is, MS related fatigue is NOTHING like 'normal tired'. In fact, most healthy people have never experienced anything close to what MS related fatigue is. In fact, they have no idea what it's like to live with MS at all.

I've heard a lot of descriptions of MS fatigue and what it's like to live with MS, but here is one I thought of:

Imagine you are planning a big camping trip. But the night before you are supposed to leave, you stay up a bit too late talking to a friend so you only get a couple hours sleep. The place you have chosen for this trip is in another state, so you get up at 5AM and make the 8 hour drive to your destination. You finally arrive, and in your haste to get going you realize you skipped lunch. No worries, you think. You'll grab a bite to eat once you get your site set up.

You step out of the car, and you are stiff and sore from the long drive. You go to your trunk and pull out all your gear. Your backpack can't hold it all, so you also have a bag to carry in your hand. So much for using a walking stick like you normally do to navigate the rocky terrain because your hands are too full. Just as you start off towards to the hiking trail with your 30 lbs of gear, you feel a drop of rain on your cheek.

Despite the light rain, you finally begin your hike. The ground is wet, so maneuvering the damp ground and slippery rocks while carrying your huge load proves to be quite trying. You slip and fumble a few times, grabbing a nearby tree to regain your balance, but you press on. You finally near the spot you planned to meet your friends, it's now dinner time, you are wet, tired, hungry, and sore. Only when you arrive there, you find it to be empty. A quick call on your cell phone reveals the location was changed to the west side of the park. You are on the furthest most eastern side of the park. You are miles from where you should be.

Feeling frustrated and defeated, you trudge off towards the east. The rain has continued all day long, so you slip in mud more than a few times, once even slightly twisting your ankle. The bags you are carrying now feel more like they weight 80lbs from lugging them around all day. You are weak and lightheaded because you've now skipped not one but two meals. You are tired not only from the drive and hike, but from getting so little sleep the night before. It's getting cold, and your muscles ache and beg for relief.

Just when you think it couldn't get any worse, as you're walking you suddenly feel a creepy-crawly sensation followed by burning working it's way up your legs. Much to your horror, you realize you've stepped in a large ant mound, and they are now covering your legs. Your bags fall to the ground as you desperately try to get them off, even kicking off your socks and shoes to make sure none are hiding in there. Sure they are finally off you, you put your socks and shoes back on and pick up your heavy bags once more. Once you begin walking, you realize there's a few small pieces of debris from the forest floor in your socks. The further you walk, the debris turns from an annoyance to painful. Your legs still sting from the ant bites, and you're sure you still feel a stray ant crawling on you from time to time and try to brush it off only to find nothing there.

It's now nightfall, and you finally see the glow of a campfire in the distance. You've found your friends! The problem? It's on the top a very large hill. You struggle and stumble your way up the hill, your muscles hurt and your body is just about at the point of giving up. You really wish you had eaten something because you're so weak you're feeling light headed. Why in the world did you feel the need to bring so much stuff, anyway? You finally make it up the hill, and you literally collapse.

But... you still have to put up your tent. You struggle back onto your feet, and spend the next half hour putting up your tent. Your friends are all excited and ready for a long night of partying by the campfire- but all you can think of is food and sleep. You grab a few hot dogs and eat them raw, you're just to tired to bother cooking them. And while everyone else is having a great time, you crawl into your tent and fall asleep of sheer exhaustion.

That... is a day with MS. The muscle aches, the feeling unbalanced when you walk, the feeling of carrying a heavy load everywhere you go. Being light headed and foggy brained, sore feet feeling like you're walking on pebbles, even burning and creepy-crawly sensations on your skin. The feeling of frustration and defeat, and being left out of fun events in your life because you're just too exhausted and weak. And what's worse? That's just the tip of the ice burg. There's so many more things that go wrong with your body when you live MS that I didn't even cover here.

So the next time you hear someone with MS complaining about fatigue... please don't compare it 'just being tired'. It doesn't even compare.

Until next time, be well!
*hugs* -Mis