Nickie Coby (puppybraille) wrote,
Nickie Coby

A chronic carnival

Does anyone remember those carnivals almost every little kid experiences? You know, the ones where you'd play lots of games with those little tickets so you could win a cheap prize?

Well, I've decided to hold a chronic pain/post-surgery carnival and you're all invited! Feel free to try any of the activities and see if you can win a prize!

The Princess Game: The object of this game is the opposite of the Princess and the Pea. The idea here is to attempt to get a good night's sleep with your chronic or surgical pain. The prize in this case are spoons which you will use in many activities to come. Those who manage to tollerate sheets on an RSD affected limb get a bonus.

The relay: The idea of this game is to attempt to accomplish several tasks. With each task (dressing, brushing hair and teeth, making breakfast or taking medication), you have the opportunity to depart with your spoon. Extraneous movements, falls or unnecessary activities will cost you more spoons. The goal is to balance as many spoons as possible. Some activities may give you the opportunity to receive spoons as well. Taking medications or eating may, in some instances help you maintain your spoons.

The occupation station: The occupation station can be compared to many of the activities (duck pond, ball throw, fishing and others). The goal, of course, is to obtain a reward. These are all secondary awards, of course, but can help you obtain things you need. The goal is to do your job, or accomplish something. Some with chronic illnesses or pain are able to work, and some accomplish other meaningful tasks. But they all cost spoons and you may not see your reward for several days. These reinforcements can be in the form of money, complements on a web site or blog post, clean laundry or even a sense of accomplishment.

Evening relay: This is the toughest. The goal is to use your remaining spoons to accomplish as many needed tasks as possible. Tasks include preparing dinner, spending time with friends and family, cleaning up the house/dorm/apartment, obtaining medications or groceries and spending time on leisure activities. You have to use your spoons wisely, however.

Of course, this whole idea is based on the
spoon theory
the sad part of it is that sometimes, RSD and pain are like a mean carnival. Instead of following the signs that say what each activity is supposed to cost, the pain steals spoons from you. An activity that's supposed to cost only one spoon ends up costing three. The pain isn't bad, so you don't take any extra medication. You end up waking up at 4, in pain, and unable to do anything about it in time to get more sleep.

But sometimes, you can get a real sense of satisfaction out of beating the evil carnival person. You end up with enough spoons to do what you want and you know you did everything right and you have a good day. It's not all evil. But it can be unpredictable.

One of the things with this surgery and the recovery is that I'm not used to how much energy things will take. I don't know how much limping I can do yet. I don't even know what 25% of my weight is. Friends want to get together and I am afraid to say yes. I've done nothing all day and I'm exhausted. Yet I'm sore and can't sleep. Since I use my arms a lot, I wake up feeling like I spent the night with a sumo wrestler.

But, at least I know that I'm not alone. I remember seeing the Spoon Theory last summer and thinking so you mean I'm not crazy?; I thought it was all my fault that I couldn't always get past the pain. Now I know not to wallow in it, but not to feel bad if I can't tackle it and do everything at once.

I guess instead of thinking of the carnival as something I win by always having enough spoons, I've changed. I try to do everything I can to have enough spoons. I will make mistakes, or sometimes things are out of my control and I won't always have enough spoons, but I can win with my attitude. I try to allow myself to hate the RSD and hate my limitations, but then accept them. Denying that I'm upset doesn't help anyone, least of all myself. Instead, I know when I'm upset, vent about it, then try to move on. I'm not perfect at this by a long shot. But I can sure try.


Tags: health, my writing, rsd sucks, sleep, stories with a point, surgery

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