My inspiration for this week’s piece was a blog I read last week that discussed fatigue, not in a way that would make others understand what fatigue truly feels like, but rather using a more clinical explanation. For those of us who suffer from chronic illnesses that include disabling fatigue, the worst thing anyone can say is, “I’m so tired!”
Allow me to explain fatigue in the best way I know how. Being tired is not the same as being fatigued. Everyone on the planet understands what it feels like to be tired, even newborn babies. We cannot go without sleep, and we know when we need it. When we sleep enough, we wake up refreshed.
Fatigue, as it affects me, is a crippling heaviness that overtakes my entire body. It can sneak up on me when I least expect it, but more often it is held at arm’s length thanks to the miracle of modern medicine. At times, overwhelming fatigue can’t be held at bay, despite using the most powerful of medications. At my worst moments, the mere thought of picking up my leg to take a step forward makes me want to just sit down and cry. My limbs feel as though they are wrapped in lead and they are being pulled down towards the floor. There are days that I must summon every bit of energy in my body simply to get out of bed. I can go for days at a time, too exhausted to eat or (dare I say) shower. Fatigue can be both physical and mental. By the end of any given day I am usually too mentally drained, probably from the constant inner pep talks to keep myself going, to talk to anyone or do anything aside from sitting down and zoning out.
This is typically how you will find me when the fatigue catches up to me.
When I was working, I never could go through a single day without multiple colleagues expounding upon how utterly exhausted they were, usually because they were doing social things the night before (I’m not even going to talk about my lack of doing anything social on a school night here!). I politely listened, inserting words of sympathy where appropriate. Little did they know that if they stopped by my room at the end of the day, they would find me with my head down on my desk, crying and wondering how I would muster up the strength to get in my car and drive home. Feeling “tired” can’t even compare to being physically unable to my body when these waves of fatigue permeate my entire being, leaving me incapacitated. I am amazed that I lasted as long as I did as a teacher, but after years enduring my body’s torturous revolt against me, I knew it was time to wave the white flag.
Often people who don’t understand how debilitating this symptom can be are quick to judge, and assume that I am lazy, unmotivated, or making excuses for not being social. Nothing could be farther from the truth. Invisible illnesses throw everyone for a loop, most notably the person who suffers from them. If you see someone (like me) parking in a handicap spot at the grocery store or at the mall, please don’t presume that she doesn’t “need” that spot. The truth is that she is probably dealing with a host of symptoms under the surface that are not visible to others. I would gladly trade in my handicap placard for my pre-MS life, healthy immune system and all. This is not the life that I had imagined for myself, but it is mine. It sure would be easier if the general population did not make false assumptions about who I am based upon accommodations that are necessary for me to live as close to a normal life as possible. So the next time you say that you are tired, consider how lucky you are. The quick fix for being tired is simply to take a nap or to go to bed early. Please understand that there is not a quick fix for being fatigued, and even though you can’t see it, it is a constant in my life. It is a part of my daily struggle, and even though I’d love for others to be able to step inside my body to really feel what fatigue is, I would never wish it on anyone.
The moral of the story is don’t judge anyone based on what you can or can’t see. My struggle is real and I should not be made to justify myself to anyone solely because it’s not visible on the outside. It’s like the old adages say: don’t judge a book by its cover; appearances can be deceiving; all that glitters is not gold; don’t just scratch the surface; don’t criticize me until you have walked a mile in my shoes…not even high heels. Just the boring flats I am forced to wear since MS came along!
I can’t wear any of the fun shoes I used to wear before MS because of my lack of balance.