She has spoons and I have pennies.
My girlfriend has RA (among other things) which is a b*tch of a thing to have. She goes through days where it hurts her to breathe and that’s if she’s laying curled up in bed on as many painkillers as we can pump into her. We came across an article, years ago now, that perfectly detailed what she goes through every day titled Spoon Theory (or something like that). Essentially it explains that she gets given a random number of spoons every day and that every action requires that payment of a spoon. Once she is out of those spoons that’s it, she’s done. Did I mention that the amount of those spoons every day changes? So fun.
We have always made this work though. I have no problem with working around her varying amount of spoons and chronic level of pain. She's the brains of this operation and I'm the brawn. I don't care. I like it this way because it's the way that it is. I can be there when she needs me. I can help with whatever needs to be done. If she's having a good day I can ride in the car with her and we can go shopping till she drops, and then help her show it all off to the kids and family when we get back home before putting it all away. If she's having a bad day, I'm more than happy to fetch drinks, hand over medicine (after opening all the bottles and the drink), fluff pillows and comfort just as much as I can. I always pick up the stuff from the floor, because bending over is never an option, and we laugh, and play, and work, and cry through it all with each other.
I have recently been diagnosed with Fibromyalgia. According to the article I read on the Mayo Clinic website, I should think of my daily allowance of ability as pennies in a piggy bank. I can use my pennies as I see fit but I’m only allowed to take out a certain amount. After that, I have to refill my piggy bank before I can use any more. They recommend that I plan out my daily activities including breaks and rests in order to get the most out of my day. It suggests things like meditation and yoga practices in order to maintain as much mobility as I can against the inevitable bad days. I’ve also found out that stress appears to be one of my major triggers (like a lot of sufferers), and that it combines with my already existing anxiety wonderfully, creating a vortex of hellish pain whenever something new or unexpected causes me to begin my panic mode. They strongly recommend remembering that when a flare-up happens, there is nothing that can be done and over taxing myself will only make it worse. And that flare-ups obey Murphy's law and will happen at the worst timing possible.
I understand all of that. Really I do. It's all scientifically sound and medically proven. I know.
What the hell are we supposed to do now? What are we supposed to do when I'm trying my hardest not to cry and curl up in a ball of my own and she can't get out of bed for the pain. When the kids are sick and everyone else is exhausted or hurting on their own. How is "take it easy and remember you can't actually do it" an option when you've both been in pain for so damn long that DCF comes knocking at the door and you HAVE to get the house clean by yourselves right now. I know these aren't normal concerns, but I'm not talking about normal concerns. I'm talking about when the chips are down, and it's the thirteenth hour, and all bets are off and there is still sh*t that needs to get done. What then? When the choices are going until you break and risk losing everything, or lose everything, who would actually choose to walk silently towards mutually assured destruction without a fight. When it takes every penny I have and every spoon she has to get the kids out the door to school in the morning and there's still things that HAVE to be done, what then?
Understanding all of the medical, mental, and any other reason for the Dr's advice of sit the h*ll down and don't kill yourself aside, I would love for some Dr, or scientist, or specialist, or really anyone to give some real world advice to the rest of us. Those that don't have an endless supply of family or friends to call on that can help. Those of us without any family, or whose friends are in just as bad a shape as we are, or who can't help for one reason or another. What is our best option? I understand that the best medical advice is to not do the thing, but if I have to do the thing, what is the next best course of action. Assume that I can't say ok, I'll get some help, or it'll wait until tomorrow. How do we manage the repercussions of our actions knowing that we are actively doing what we shouldn't be doing but we are because we have to? What coping techniques are there then? Advice for those of us who are dying but don't want to be would be so amazingly helpful. At this point, any little bit would help. Why doesn't any article or Dr address that?
