This entry is dedicated to the ones who murmur inane things.  You know, people who say things that leave you standing with your mouth open while they look at you with a pained, mock-concern look.   

 I actually have an article written about this group of individuals, and I will find it and post it as soon as I do...but for the time being, and for my general need to address the ones who murmur inane things- or pinch them-read on.


I am unapologetically standing proudly on my perfectly pedicured toes, proclaiming that I am high maintenance.  

Where exactly is it written that just because I have MS, I have to accept the life of a lump? Over and over, I hear the same thing when I do something remotely ‘female’: “You must not be sick if you do your nails, sit long enough to get a pedicure, stay up late to take a walk at 10 pm, have a glass of wine, dance naked with a lampshade on your head”... Ok, that last part may have been too much information, but the ridiculousness of some people’s reactions to my life warrant such over exaggeration.  I am a girlie-girl…I like pretty things, I like feeling pretty, and I like pampering myself in whatever way I am able.  If that means gluing on fake nails when I can’t sleep, so be it.  If anyone deserves to feel pretty on the outside, it’s those of us who feel like our insides are anything BUT pretty. I like looking put together and normal to the outside eye; because anyone who is chronically sick, knows on the inside, you are more of an out of control mess than the public relations department of GM.


Sure, there are the days that I drag myself out of bed, look into the mirror, and realize I could frighten small children into therapy.   

On those days, I could care less if my entire head looks like the “hair gel” moment in the movie, “Something About Mary”, or that I look pale enough to play a very convincing lead in “Powder…The Sequel.”  I shrug my shoulders at the fact that my body hurts so bad the only thing I can stand on my skin is an XXL t-shirt that announces to everyone proudly that I, “am an old golfer who hasn’t lost his balls.”  I hate looking at that woman in the mirror. She’s not me. She’s not the woman I have known all my life….the one that never needed sleep…never stopped….and had more energy than a room full of preschoolers with an endless supply of Fun-Dip. That woman was invincible. But she is gone; she’s been gone for some time now. Instead, I find myself stuck with a new version of me.  The one whose body shuts down whenever it pleases….the one who pays for days for a simple outing to the mall, and whose energy level is more on par with a senior citizen with a bad attitude.  My “me” days are few and far between, so when the autoimmune gods bless me with one of those coveted days where I look in the mirror and see “Ann” instead of “What Ann used to be”, you bet your binky that I’m making the most of it.


Yes, I own clip-on hair extensions….it takes a good amount of playing around to get them in; my arms start screaming and my fingers so stiff I resemble a zombie from the Thriller video. 

But guess what?  My hair falls out.  I have patches on my head that have hair, and patches that don’t. Some days I am a 40-something woman with a comb-over that could put Donald Trump to shame.  After I take a shower on any day of the week, it quite possibly could look like I murdered Chewbacca in my bathtub…..so forgive me if I feel the urge to ‘perk up’ the hair I have left and feel pretty for half an hour.


Yes, I am a member of the YMCA.  I even *swoon* took Zoomba and box-kicking classes.  If I have to hear ONE more time “well if you can exercise like that, you must not feel too bad.”  To this….I only have two heart-felt words... “BITE ME.”  If your muscles have never ached so bad that you cry hysterically as you sit in a scalding hot bath at 3am, then you have no right to judge what I do to prevent it.  I exercise to function. I sweat to be able to walk as you run.  Working out is not a chore that I do to wear a size 4 or to have six-pack abs.  I get some form of exercise so I can drive, stand for longer than 10 minutes, and pick up my cats with arms that don’t collapse from muscle failure.  If all my hard work gives me the illusion of a strong, fit and normal woman, then I’ll take it….and if that illusion makes me less sick in your eyes, well, then I’ve done what I set out to do.  


I have talked with some people who have known me through church or work for ten years or more, who just recently have found out that I am sick.  I work very hard against letting ‘being sick’ win...to not seem weak….to wear that bedazzled superwoman cape that makes me invincible.  
 They don’t see the days it takes me to recover from one hour of housework, or the tears I cry alone at night because I can’t tell you how much each bead of sweat costs me in time with my family.  Ironically, now that they know what I overcome on a daily basis, it gives them MORE motivation to push themselves towards their own health goals.  While taking one of those Zoomba classes, I remember one woman’s words well… “If you can get up and push yourself with all you go through, then there is no excuse for anyone, no matter their size, shape, or condition, to not do the same.”  She made me cry. She “got” it. Very few people “get it.”  I was so overwhelmed with emotion that I yelled, “Yes!” when the instructor asked if we wanted to do the last set again.  I should probably apologize to her for causing her to be chased to the parking lot by a mob of angry spandex-clad class members in muscle failure.


Yes, I do my nails on a regular basis. Continually looking at bluish-orange nail beds because of a stupid medication has become more than I can stand.  Slapping on a set of glue on nails with some hooker red nail polish makes me happy.  If I have to look at swollen knuckles and numb fingers, at least at the end of those distorted hands, I have something pretty to look at.  They really look nice when I have my head shoved in the toilet, throwing up every internal organ I have when my diaphragm spasms.  They are also a nice visual contrast when having to tick off on each finger the number of pills I have already taken; or the hours it has been since I have been able to stomach plain water, or the number of days it has been since I have been able to get out of the house for longer than 10 minutes... without having to pretend that I am not in pain.


The phrase I hear a lot from well-meaning people is…. “But you USED to...” (socialize more, party, get up early, go on day trips, clean the house, etc).  This statement is true.  I most definitely USED to do all that stuff and more.  I used to be unstoppable.  I simply am not that woman anymore.  I can’t be.  Nothing is the same.  If I’m able to get ready and go to dinner with my family, I am proud of myself because I have once again (drum roll, please) gotten the best of my disease-that day.  The next day, it may come back with a vengeance and remind me that some days, I am at the mercy of MS’s will.  I never know from one day to the next, or for that matter, one hour to the next, how I will feel.  Just because I felt fine enough this morning to type this on the computer, doesn’t mean that in two hours, I won’t have to take a nap…..simply because my body shuts down on me.  Every day is a gamble and some days I feel like I am playing blackjack with my energy.  I see the cards that I’m dealt, and know how desperately I want to get to 21…I mean let’s face it…it’s not often that we win.  

The Vegas odds most definitely aren’t in our favour. So, some days I will tell the dealer to “hit me” and I get a queen and an ace, and bask in knowing I beat the “house” for the day.  Then there are other days, that I have 18 showing and gamble on one more card…only to have that 6 of clubs show up and lose all my chips and energy for the entire week.


I don’t look sick.  I know it….I hear it constantly.  If I stopped doing all the things that I have just talked about…would I look more deserving of your compassion or sympathy? I am assuming if I could see all of your faces, they would all be nodding in agreement. Good. That’s exactly my point.  I don’t want your sympathy.  I want your friendship…and I want you to realize that the small things that I do to make myself feel and look better are not done out of vanity--they are done out of an intense need to feel normal; to feel like you might every day of your life.  I value the days I can look in the mirror and smile back at the reflection.  Those days are few and far between for me.  If there is something that living with MS has done for me, it’s made me appreciate the days I can be a woman; the days I have the strength to fix my freshly clipped-on hair for a night out with a husband who has watched me cry myself to sleep for a week straight-- because I couldn’t tell him what hurt; because everything hurt.  It has made me live for those infrequent moments where I can show my children that I am not a grumbling psychopath that walks around arguing with herself (yes, I do that), and that I really enjoy their sense of humour and the ways that they can make me laugh.  
 
So the next time that you complain because you’re having a bad hair day…..remember to be happy that it’s not falling out because of the medication you took last week. The next time you complain about it being too hot outside to play with your kids...remember to be happy that an hour in the sun doesn’t send you into a flare-up that has you house ridden for days.   


The next time you say you are just too tired to go to the gym-remember that there are those of us that would kill to make it through an hour on the Stairmaster without having knees the size of cantaloupes and three days worth of anti-inflammatory injections.  The next time you complain about your nail polish not matching your outfit….remember that you have the ability to paint your own nails without your hands shaking so bad, your fingers end up looking like a CSI crime scene.


Yes, I’m high maintenance…and I make no apologies for it.  I try to make the most of everything I do because it gives me something to strive for.  I would love to have time on my side; to not have to break plans with friends because I just can’t seem to wake up enough to have a shower.  

I would love for ONE day for you to walk a mile in my heels. 'Cause then maybe, just maybe, you would understand why, on the days that I can successfully put them on, I walk taller….I stand prouder….and I strut as much as anyone could possibly strut.  I walk in those heels with pride beside my friends and family, because they know that tomorrow, those heels may sit alone in the corner of my room because I lost the battle that day.