-Removed due to issues with storify-
This is an actual spoonie event, live as it happened.
Spoonie event, you ask? What in the world is that?
Well, I don’t just have the good fortune of being a demiguy, I’m also suffering from some chronic disorder of a physical wellness nature. Also known as: I’m constantly in pain. Not just pain, every sensation is pain. The hair brushing my face is pain, the clothes on my back are pain, the light on my skin is pain. Everything. Yes, even what you’re thinking about right now. That also feels like pain to me.
What sort of pain? Well, I couldn’t tell you. I’ve felt it so long that I can tell you what normal pain is to me and what is definitely something else wrong. I can give you numbers on that 1 to 10 pain scale that I assume are relevant to your knowledge. It has been years since I had a day below a 4. Most days I’m a 5 or 6. Bad days are usually an 8. Anything higher and something is terribly wrong because I’ve become an expert on living with this and not pushing myself to that point.
How do I live with this? Well, I just do. I’ve had it for as long as I can recall. One doctor when I was a wee little child – about six years old I would say – said it was just growing pains and I would outgrow them. Another supposed it was some form of childhood arthritis, but no doctor has ever found evidence of any sort of arthritis.
As my mother became more sick nearer to her death when I was 14, I just stopped complaining about it. No one seemed to have an answer, so I left it alone and assumed it was normal. Like growing up with one parent and being surprised that other kids have two, only with something less visible. I couldn’t look at friends of mine and ‘see’ they weren’t in pain, per say. I did wonder how they could run and play so well though.
After that, people assumed the pain was part of some mental illness, depression brought on by the loss of my mother or this trauma or that trauma. Then it was labeled as lingering pain from childbirth. Doctors liked to ignore the fact that I had been living with it for so long it couldn’t possibly be any of that.
There isn’t just pain at this point, but it is difficult to recall what else came with the pain and what is just a result of other things. My muscles twitch, spasm, and sometimes lock up completely. I have horrible digestive problems. My breathing has never been quite right. I have heart ‘flutters’ about once a week. My memory is shot to hell, I’m tired all the time, and focus is extremely difficult. I’m incontinent, moody based on pain level, and very limited on what I can do safely.
It isn’t always easy to find words to express this to people. I don’t have a diagnosis or official disability label. What has helped is using the word spoons from Spoon Theory – and so much credit and appreciation to this wonderful person for sharing their story.
So when I say I’m out of spoons, that is what that means. I’ve probably got one hidden in my pocket, but using it means tomorrow will go over an 8 on the pain scale and I might be in bed for a week after that.
And if I use spoons spending time with you, please don’t feel bad. I have to limit myself and I’ve limited myself to being with you for a reason.
Or I’m playing Tetris with my furniture.