Life Lesson #478 ~ Spoonies

 

So, what does it mean to be chronically ill? What’s a spoonie? And what the heck is spoon debt?  Why are some folks called muggles and what exactly is muggle sick? Well, those are all pretty good but loaded questions to be fair. I’m no expert, but I am familiar with the lingo. Why? I’m a spoonie. Not a muggle.

I have sick days and I have good days. I have flare ups, brain fog and just plain I can’t days. Truth is I’m long past muggle (normal) sick. And no, I don’t look sick to most people. In fact, if you’re not inside my inner circle you’d have no clue what it takes just to get up and out of bed most days. Not to mention the energy required for a shower. I go into spoon debt often. If not daily. I’m always borrowing spoonfuls of energy from one day to get through the next. Hence the words, “spoon debt”. And no, I never quite catch up.  

My tired isn’t muggle tired. When I say I’m drained I don’t mean a long day, a few hours of sleep kind of worn out. I mean something else. It’s pure exhaustion on every level tired. It’s limping from one room to the next. Holding in your discomfort and agony. Disguising your pain with a smile. Getting up, going to work and pretending you’re just fine. Why? It's easier. If you don't look sick, then to most folks you aren't. Hiding your illness is just part of your typical and expected every day routine. And let's face it concealing your discomfort makes others more comfortable. This is the life of a spoonie. 

But the reality is we press on in spite of our struggles. We don’t stop living because we’re dying. Most of us love life and live it as fully as possible. We see and do before we can’t. But yes, we’re scared. Absolutely. We panic inside every time a new symptom appears. We internalize and process our emotions slowly at times. We don’t complain often; but when we do, you need to be listening.  At the end of the day only a few know our truth. Why? Because we only share our battles with those we fully trust. 

Being a spoonie isn’t a competition with anyone, muggle or spoonie alike. We don’t compare our pain, we empathize. We get it, even if we don’t share the same diagnosis. We’re in tune even though we carry our diseases differently. We push each other. We accept our illness long before it takes what's left of us. But that doesn’t mean there’s no life to be lived. There’s plenty of it. We understand our burdens are heavy but distinct from each other. Still, we bear them together, arm in arm and shoulder to shoulder. How? Why? Because we know in the end where our illness is taking us. We stick together. We press on and face whatever comes our way together. 

At the end of the day, the one thing I’ve learned about being labeled “chronically ill” is I’m fairly resilient. Most of us are. I typically bounce back. Maybe not right away or as quickly as I used to. And let’s face it, not always in the same condition as before. But I don’t stay down long. That’s for sure.  Understand this though. Just because I make a comeback each and every time, doesn’t mean my body has. It’s all about mindset. Why? Because everything will be OK, even if I'm not always OK.

So, this is what it means when you hear some one say they're a spoonie. It's not code. It's just the way things are. I'm a spoonie and this is what my life looks like everyday. But I'm OK. You know why? Because I'm simply living my life one spoon at a time.

~Merida Grace