MS Awareness Month Marches On

The WHOLE %&$# time

As MS Awareness Month is marching on (ha, see what I did there?), I thought I’d talk about my MS journey. Again.

I know I wrote about the road to a diagnosis in this post, but I think it bears repeating. You NEED to advocate for yourself. YOU need to make yourself heard. Looking back, it seems I was relatively passive in my pursuit of solving the mystery that is MS. I thought I was taking charge of my healthcare, but I’m not sure I was insistent enough. I knew something was amiss, yet I didn’t press enough when I kept hearing I was “fine”. Maybe deep down I wanted to hear that there was nothing wrong even though I knew there was something wrong. I can’t say with any certainty one way or another.

I remember arguing with a doctor in the emergency room who insisted I had pneumonia. I had no fever*, no cough, no shortness of breath, no discomfort in my chest save for the MS Hug that (at that point) had no name and a protruding rib. He showed me an x-ray and he was so sure it showed pneumonia, he even pointed out what he called pneumonia. Thanks to the marvel that is the internet, I now know what he showed me was not pneumonia in my lung.

I remember hearing my alarm in the morning, shutting it off and rolling over. I could not get enough sleep; I never felt rested no matter how long I slept. Fatigue was, and still is, my chief complaint. Fatigue is not just being tired. Fatigue is...indefinable to someone who has not experienced true fatigue. It’s a tired that never ever gets better. It’s having had excellent sleep and still not being ready to face the day. Fatigue is walking uphill through a waist-deep river of barely liquid mud while carrying a 50-pound backpack. It’s getting up from a chair while it feels like you’re being pushed down into the chair. Here’s a view of MS fatigue from another perspective. 

Fatigue is a feeling of heaviness that permeates your body. If you’re ever had the flu, you’ve experienced a fraction of what we feel daily. It requires maximum effort to move an arm and walking anywhere seems impossible. Just for fun, the fatigue level is constantly changing. Some days we can feel- dare I say it- normal, and some days it’s I want another cup of coffee but the kitchen is too far away.

So when we say we have MS, and you say, “gosh, I would never know”, you understand why it’s called an invisible illness or a snowflake disease. I explained how I feel about the moniker of snowflake disease here.

We are all different, and individually, we have different experiences daily. Or more often. I think that might be part of the reason MS is difficult to diagnose outside of areas where it is prevalent. There are so many symptoms that are common with other illnesses and the unusual symptoms (I didn’t tell my doctor about feeling wet when my skin was dry, that’s just weird) don’t get mentioned. Unless you’re looking for MS, you don’t look for MS.

 

 *I don’t really run a fever. In the throes of appendicitis, I never had a fever. My mom never really ran a fever, nor did my sister. We’ve since discovered that my daughter rarely runs a fever.