A lot of people who have chronic diseases blog about their experiences as a way to help themselves and others along the way. One I particularly admire is Cathy Chester. I admire her because she tackles things heads on, looking for solutions and not excuses. She recently participated in a blogging event that had challenging physical demands (for people who suffer from a chronic disease) and found ways to adjust her needs to the schedules and activities around her. She put herself out there and for that, thumbs up Cathy!
Writing about my own struggles with Myasthenia Gravis wasn’t even an option when I began blogging. I hate talking about it, so writing about it was out of the question.
Probably it’s because I lost one of the things I most valued to Myasthenia. I lost my career! Not only because I couldn’t get the job done, but because I loved teaching so much I could have done it for free.
Each year when August comes around I feel overwhelmed with the worst feeling ever, longing. I long to go to work and do what I know how to do best. Surround myself with all the familiarities of the school. I miss seeing a fresh new group of young faces that I will get to know well during the next ten months. I long the noises students make when they enter and leave my classroom. I long the smell of the markers I used on my board. I long the papers, the copies, the notebooks, the grading, and basically I long for all that being a teacher is.
A chronic illness affects every aspect of your life and the feeling isn’t pretty. I will always remember the first time I even heard about it “chronic illness”, I thought “Wow, I’m really screwed.” To my relief I later read that chronic means that you’re going to have it as long as you live. So, instead of thinking I’ll die soon, I changed it to I’ll die a little each day as long as I live.
My first diagnose was MS and since I didn’t have an idea what it was, it really didn’t affect me to much when the neurologist that was taking care of me back then said it, she didn’t get much of a reaction. She went on explaining what the condition was and how it would affect me. I remember thinking about how my life had changed in a short period and basically I was in denial.
After some more tests, MS wasn’t my diagnose anymore and I changed neurologists and my internist referred me to the Muscular Dystrophy Clinic in a nearby Medical Center. The first time around, as my husband and me got off the elevator and stepped inside the clinic, I turned around and darted back to where the elevators were, I couldn’t bear the sight of all the patients that were there.
He dragged me back literally and made me face my reality.
I was diagnosed a couple of weeks later with Myasthenia Gravis, and my life changed dramatically. I became dependent of my family for support and to help me get through the day in things that I used to do without help or thought. Things we take for granted, like taking a shower, walking short or long distances, standing up, singing, laughing, etc. It even took away the pleasure of food for a while, as I struggled not only with chewing, but with being able to swallow my food.
What I hate the most of having this is the fact that I worry my family. Each time I have to go and rest because I’m not feeling well I get to see the worry in their eyes and that breaks my heart. My teenage children grew up faster than their peers because they faced life with a sick mom. Still today during the mornings, when their in college or in work, I receive several messages always asking the same thing, “Are you okay?”.
Thank God food has stopped being an issue, because our meals were stressed as their eyes were always on me while we ate. They felt nervous I would choke on my food. Our family meals were interrupted more than once as I had difficulties eating. That was a literally a nightmare.
They always need reassurance, that I’m fine.
Some years have passed and I’ve learned to deal with the ups and downs of suffering from a chronic illness. It doesn’t mean I want or accept it in my life, because some days like today I resent the hell out of it.
Yet, it all comes down to living the best you can my dear friends.