An Ode To the Spoonie Community

So much is strange in this life full of illness,
Nothing works right, too much pain, why must I feel this?
Spoons hell, these days I need ladles,
Every day it seems like I get more diagnostic labels.

I was a kid when all of this began
But I'm strong, I'll fight, it's just who I am.
I won't let it beat me, I won't let it keep me down,
'Yeah, right, who you kidding?' It whispers, when no one's around.

That's the struggle, you see, it's not just the pain,
It's yourself, your mind, it makes you doubt if you're sane!
"Am I really sick? Am I just crazy?"
"Maybe they're right. Maybe I am just lazy."
How many times have you thought the same?
How many times has your brain played the game?
You just thought about it, you just lost, you see,
No, not that game, the other one; your enemy.

You're stronger than you think, you're stronger than you know.
You smile when you wanna cry, you laugh instead of scream, the pain doesn't show!
We all wear that mask, we all fight through this shit,
We all crawl and struggle our way out of the pit.
The one so full of pain and despair,
So real that it burns and it claws and it tears.

We reach out for help, we reach out for a hand,
We reach out praying to God for someone to understand!
But no one does...not our friends, not our family...
We're alone, in the pain, the fatigue, the misery.
Until we discover each other, right as we're about to fall,
A hand grabs our own, and suddenly we hear a voice call,
"It's okay, I'm here, I understand. I know your pain, it's real, not in your head."
And suddenly that thousand pound weight on our ankles lifts along with our dread,
And for the first time, we can smile and laugh, and we can hold up our heads!

We have each other, forever and always you see,
All together, one and all, the Spoonie Community.
We overcome race, gender, and orientation,
Religion, politics, and geographic location.
We span the world, one hand in the other,
Brothers, sisters, fathers and mothers.
We help each other feel less alone, we know we're there,
And most of all, we know there are always people who care.

It doesn't matter now, what trouble may come my way,
Because I'll never face it alone, not any second, of any day.

~ Namaste

Finding Ways To Live

I'm very sorry it's been so long since I've posted on this blog - and moreover since I've done a post relating to chronic illness! Everything else seems to have kind of taken over, but I have a secondary blog for that, now, so there's that, ahaha.

There truly is one recurring theme, or would, perhaps, the better term be phrase? That I see amongst my fellow Spoonies, and that often is, 'I just want to find a way to live my life.' And isn't that really the gist of it all? Even for lifers like me, who genuinely have very little to no memories - if ever they had a life before, for those born with their illness(es) - of life before illness, finding ways to live their lives in the face of chronic illness is truly a constant and ongoing struggle. Some illnesses are more obtrusive than others, some are progressive, some aren't, and some people seem to have more and more illnesses just heap onto their heads like mounds of snow as they slide down a hill in an avalanche of 'what the hell just happened?'

Maintaining any sense of normalcy can be hard, or even impossible, on some - if not many or any, for some of us - days, yet I think it's the one thing we all strive for, the one thing we all fight for on this battlefield in the war we wage with our own bodies every second of every day. Sometimes, finding ways to simplify getting around can feel like giving in - using assistance devices, for example, often makes me feel as though I'm "caving in" to the pain and weakness in my knees and hips from the Fibro and EDSM (Elhers-Danlos Syndrome Hypermobile-Type). The days I have to use the little motor scooters in the stores? Even worse.

Lately, accomplishing anything has been the biggest challenge for me, my heart hasn't been cooperating with wanting to do much, and I begin to greatly wonder if I have Postural Orthostatic Tachycardia Syndrome(POTS, for short) as my symptoms alter and alleviate depending on, you guessed it, my position whether sitting, lying down, or standing. I plan on bringing up a tilt-table test with my cardiologist when I see him in December.

Still, in spite of this, I still try to find ways to deal, to stay active, whether it's finding exercises I can do in bed (pull your minds out of the gutter, now, LOL!) on my absolute worst days, or pushing through the pain and fatigue, which in and of themselves are often overwhelming, throwing on ACE bandages and joint braces, and exercising anyway until my heart starts to throw a fit. A body in motion stays in motion and inactivity is the root of many evils with the Spoonie body, in a lot of cases. Sometimes these exercise bursts just wind up being one-woman dance parties to work up a good sweat - it's silly, it's fun, it's good cardio, and usually I throw some weights in my hands and get some upper body strength training in in the process (when I can find the blasted things.)

But there are always, always those days where the physical and mental symptoms combine to kick me onto my ass where I can't seem to will myself to do much but read or binge watch some Netflix. You know what? Those days are okay, too. Because that, too, is a part of finding a way to live with my illness. Those days of listening to my body and mind and giving them what they need are just as important as pushing through everything with my proverbial middle finger in the air to the pain, because our bodies need that downtime, too, far more often than those of able-bodied people.

All in all, we all have to find ways to live with our illnesses, not just survive with them. If you find ways to accomplish tasks, if you find ways to do things you enjoy, if you find ways to laugh and smile throughout the day in spite of your illnesses, you aren't just struggling, you aren't just surviving, you're living, and that is something to be damn proud of.