Tuesday, March 6, 2012


There are some MS sayings that simply either annoy or amuse you, I refer to these as "MS"isms. Some of the MSisms I have encountered have struck a chord and stood out over the years. Thought I would share some insight as to how these things effect me. I am not speaking for other MSers. I am speaking for me and my opinions. please do not be offended. I know that one of the biggest things I have learned from having MS is that educating others is a necessity. I am not picking on anyone. If ever I have been offended by the following comments, you can rest assured I have pointed it out to you. That is one thing about me...I don't hold back.

For starters there is "I have MS, MS doesn't have me", that is the biggest load of crap I have ever been fed by anyone with this disease. Please share with me your secret to beating this disease and stopping it from ripping apart your life and your relationships and your body. I have yet to figure out this magic formula. I wake up with the aches and pains as a painful reminder that this disease is still here. I take a handful of pills to force my body into sleep every night because I have lost the ability to do it on my own. If the disability, fatigue, and depression are not kicking me in the ass, I am still consciously aware of my limitations and my inability to make any plans that do not involve doctors or needles. No offense to those who carry the "I have MS" torch, but I cannot say I have a grip on this disease. I can say it has a grip on every aspect of my life.

And there is the ever thoughtful "But you look so good!" myth. This disease must only effect pretty people who naturally look so good. I never got so many compliments on how good I looked before this diagnosis. Now I can leave the house with my hair in a bun and in jeans and a t-shirt with no makeup on and still I am told how good I look. It's nice to know I look better than I feel. I may look good, but I honestly feel like I have been dragged into the depths of hell and the devil is refusing to let me go back. This my friends ranks up there with "well, you don't look sick". You don't look like a moron, I guess that old adage is true after all "looks can be deceiving". This is also one of the hardest aspects of dealing with the Disability idiots when it does progress to the point that your doctors ban you from returning to work. You look perfectly fine, how on earth can you be so disabled?

You're my hero. Really? Those years I spent as a medic, my devotion to my community, my children, my family... these things didn't make me a hero. Being diagnosed with this crappy disease, fighting to regain the tiniest bit of the person I used to be, being treated like my doctor's personal lab rat... this makes me a hero? There are times when you feel like you are fighting for a longer and more painful death and sometimes it really isn't worth the fight. Believe me, I am no hero. I don't do heroic deeds, I am no longer able to help people other than myself because of disability and fatigue. A good day for me involves scheduling the entire day around a nap and then being surprised when I actually stay awake and can accomplish small tasks like cleaning the house. I sure as hell don't feel like a hero, but thank you.

Have you tried.... *insert random idea here*? Because I saw this thing on TV, or Youtube... I am not trying to be a pain here, I do realize you are trying to help. However, according to Youtube you can unlock your car with a tennis ball and make Mountain Dew glow in the dark by adding baking soda. Think about it. Do not take medical advice from Youtube. It is a bad idea. They also have how to videos on how to swallow swords, charm snakes, and breathe fire. I do not recommend trying these at home either.

Personally, I didn't know anyone with this disease before I was diagnosed. But it seems everyone knows a guy who knows a guy. Just because your mailman's brother-in-law's baby's momma's aunt has MS and she "cured" it by riding horses does not mean this will work for me. This same line of thinking goes along the same lines as telling me about your cousin's momma's uncle Stan who died because he had MS. This doesn't make me feel better! How the hell is this supposed to make me feel better?

"It could always be worse". Yes, this is very true. It could always be worse, but that doesn't make it suck any less. The thought of it being worse does not shine a light on today's sad truth. As one of the 10% of MSers who are unlucky enough to receive a PPMS Diagnosis, I know it could be worse. I know that I have a whole lifetime of getting worse to look forward to. There is no "up-side" to this. It's not going to get better, it is going to continue to progress and the only thing I can do is try to slow it down and hope for the best.

At least you aren't in a wheelchair yet. Yes, and being your father's son, I guess I can say at least you aren't bald yet. Maybe you should try some of those growth hormones now, I saw this video about it on Youtube. Yup, it has about the same effect, except you get to be offended and I don't.