Feel the Burn

We’ve all been there. We try to eat well and exercise. We have the best intentions that are renewed each year in resolute declarations. There they sit, along side the list of things we hope to start or stop doing. And every part of life pulls and pushes in this balancing act, setting us up for the next new year with a new list; or the same list written with a different pen. 😉

We live in a culture where people diet themselves to starvation and exercise to injury. And don’t even get me started on the images that assault us daily or I’ll open up a can of feminist–whoop-ass on you faster than you can say Gloria Steinem!

It is tough to escape the standards set out for us, especially for women. The basis for comparison is everywhere; whether it is projected at a theater, backlit on your flat screen, or printed on the pages that scream at us while waiting on line at the grocery store. These images are slammed so far down our throats that even what would be considered healthy isn’t enough for… uh-oh… did I start opening that can? (She says putting it down and slowly backing away from the table.) What I’m saying here, is that we all struggle with society’s expectations of how we should look. It is not an easy line for most to walk and even more challenging for those of us who have trouble walking any line.

If you think trying to commit to a healthier lifestyle is hard for you, consider the hurdles a person with MS has in that court. (Hmm. hurdles, court… did I just mix a sports metaphor?) Not only do we have to battle the approach/avoidance that everyone finds at the gym door, but we are also fighting our limitations that can change weekly, if not daily. Try to imagine riding an exercise bike and being incapable of walking when you are done. And sure, if there is a place to rest you might be able to leave the gym on foot. But tell me, could you find the motivation to keep up that good habit? Of course I was offered the “get out of jail free” card (ie. MS) that excuses me from all gym obligations; But I won’t play it. I want to be as healthy as I can be, to take control of what I am able to. Exercising is one of those things. Or is it?

It happened after I had completed an aqua-aerobics class for people with MS. (That’s AACFPwMS if you’re google-ing it!) I had only been in the class for about a month and I …was …loving it! I could get some cardio going without getting too hot or, as I feared, ending up face-down on the floor. Moving in the water felt great… the running, cross country-ing, scissor-ing, situp-ing, pressing “lights” (as opposed to lifting weights) and after an hour I wasn’t destroyed. I was so excited that I could feel my muscles burn the next day. I can’t remember the last time that happened. In the water I was MS free and my ease of movement was liberating. And then in a moment, it wasn’t.

Suddenly, the wind of my enthusiasm was knocked out of me. Getting out of the pool that day was like pushing an unwilling child into the doctor’s office. Those legs just weren’t cooperating. Even after a firm talking to and a time-out, they wouldn’t behave. (Legs today, sheesh!) So I decided to kick-it up old school with bribery, threats, and finally a good smack. But they were plugging their ears and singing Mary Had a Little Lamb the entire time.

There I was, in the midst of an MS attack. The worsening symptoms that determined this episode were compromised balance and difficulty walking.  They sound small enough, when listed in black and white, but they were large enough to frighten me to stillness. So I did what those of us with MS frequently choose to do at exacerbation onset. I punished my system with 5 days of Solumedrol. It was a reprimand that could be heard blocks away.

“Immune System! You get down here this instant. If you don’t leave your little myelin alone, I am going to send you to bed without your white cells!” I mean it this time!”

And just when I thought I gained the upper hand, she showed me that I shouldn’t mess with the system that is responsible for protecting my entire body… even if she repeatedly mistakes my myelin for an invader. (Will you never learn??) So, in response to my steroid tantrum (which did alleviate some of my symptoms) She made sure the subsequent side-effects left me crying on the floor. She is in control. Not me. And with a rapidly enlarging waistline and a self-esteem grounded for over a month now, I now know who is the boss of me.

How is it that the same drug that shrinks the swelling around my neurons works the opposite on the rest of me? I kid you not, I look 8-months pregnant – I’ve been there (8 months pregnant that is,) it’s not something you forget. Even the most secure person, resistant to all social pressure is rattled when suddenly her body is an unwilling host to an alien baby.

As I continue to deal with a wide variety of symptoms that won’t respond to treatment, I am constantly searching for health within my limitations. Living with my version of MS makes exercise, at times even movement, very difficult. And my need for comfort is at times off-the- charts.  Juggling that reality while having to deal with demoralizing side effects- is truly a cruel joke. One that ends with a light ha ha ha and finds everyone looking around, pretending it was never said.

But I’ve been living with MS for almost 22 years. I am the Zen-Master of coping. I have no doubt that I will craft the right alternative… perhaps a combination of emotional manipulation with a little blind determination and a few soothing bowls of cereal to carry me through. Whatever the case may be, I will work hard to keep my ego intact with no need for added dr.’s visits to heal invisible injuries.

As I pack up my gym bag I notice my immune system just ahead of me, skirting around the corner to avoid eye contact. She knows that I’m figuring this out and when I get to where I’m going, she won’t be able to bring me down so easily. While my physical limitations will likely be here for the long haul, my emotional consonance finds refuge in the end. Because as feelings of loss for what I might have been without MS run through my neurons; I find hope that I will be ok in spite of the burn~

4 thoughts on “Feel the Burn

  1. Linda says:

    Well, Amy… you always seem to be able to put a positive spin on it. And, that, I suppose is why you are my inspiration. No matter what MS throws at you – you fight back with a smile. I have only just begun this battle but I hope that I will have as much dignity and positive attitude as you maintain throughout. You truly are the Zen Master of coping and have been my life support during the past several months! So, when “She” is pissing you off, tell her you’re too busy helping a friend to give her bad behavior negative attention! (did you hear the teacher voice???)

    love ya! Linda 😉

    • aglol says:

      Thanks Linda~ “mentoring” you is very satisfying to me… because I didn’t have anyone when I was diagnosed. (as I’ve said!) So, you could say I’m being selfish!

      Oh and thanks for that bad behavior/negative attention line… I’ve added it to my retaliation talk! 😉 See… it’s a give give kinda friendship we have. 🙂

  2. MSSusan says:

    Psychologically, I feel better after reading your latest… People; family members, close friends & complete strangers will give me the ‘oh, she’s really gone & lost it now’ look.

    It seems like that there are hours/days/weeks/months when I am in constant negotiations with “MS Susan”. At the beginning of this ‘ms adventure’, I thought I would always win at these mediation sessions. How quickly I learned that “MS Susan” can be relentlessly opinionated and unwilling to consider other possible opportunities or solutions.

    I suspect that non-MSers or people without a chronic disease can’t imagine that the disease seems to take on a personality of its own. From my perspective, its like having a perpetually bratty, spoiled, 2 year old whiner always lurking behind you.

    Much to my own dismay, I can’t abandon “MS Susan – the whiner”, because I need ‘her’ as much as ‘she’ needs me.

  3. Sue says:

    You are an unending source of encouragement and inspiration to me. I can always count on you to kick my selfpitied ass into a more positive direction. XXOO to you!

    I dont have ms but I do have a chronic back condition that has altered my life, perhaps forever and your mere presence here, online and down the street keep my pity party in check. Thank you over and over!

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