What does it mean to you to be able to do something? To be unable?
What does it mean when you can do something? When you can't?
I have always had a somewhat nebulous notion that ability is a binary function. That there is a bright line between can and can't. That there are certain consequences serious enough to push one activity over into the "unable" pile. And that those consequences have to be pretty damn dire.
Trying to work this out through examples.
I can't mow the lawn. That is, literally: I am so weak as to be unable to move the mower. Not even an inch.
That one is obvious, right? Most people will give me a pass on that -- that is, pass on scrutinizing my claim. (When you live with a chronic pain condition, you become quite used to people scrutinizing every single thing you claim to be able to do or not do, analyzing your every statement, trying to catch you as a faker. No, I am not paranoid. I invite other invisible-illness-ers to back me up in comments.)
But what about something else?
I can't wash the dishes. Let's break this down to try to understand it better.
I can hold the sponge. I can push it around the surface of a dish -- that encompasses both the arm/shoulder movements and the mild pressure applied. I can stand at the sink for an extended amount of time.
But. After a couple minutes, I start to feel the pain in my lower back from standing for so long. The temperature of the water becomes increasingly painful on my hands, feels as though they are being held in a hot fire, though they are not actually burning. As time goes on, my legs begin to feel wobbly, although I look perfectly steady to any outsider. The pain in my back, hips and legs gets worse and worse as time goes on, to a point where it's blocking my ability to think -- the only thing I am aware of is the pain I am feeling.
And then I sit back down here at the computer. And after a couple hours, I might be fine.
So. Can I or can I not do the dishes? Is it that I can do them, if my symptoms are not outwardly visible? Is it that I can do them, if the pain clears a short time after? Is it that I can do them, if the pain is not so severe as to render me physically unable to stand? Can I or can't I?
How about something a little harder:
I can't go out tonight. We'll break this down again, but this time I need to provide some context.
I can go out tonight, that is, I am physically able to somewhere that is not my home.
I can go out tonight, that is, I have no other activity set for that block of time.
For the sake of this experiment, let's also say outright: I can handle whatever activity I would be doing tonight. (Attending a concert, shopping, working, attending a sport game, visiting a friend's home, etc.)
So that is, I can lift and lower my arms to fix my hair. I can wear outwardly presentable clothing, I can put it on myself, I can handle wearing it for an extended period of time. I walk out the door, I can drive my car wherever I am headed. Once there, I can stand upright, I can sit down. I can be social. I can handle light physical activity. I am well enough to make it through all of this and drive myself home. I won't be absolutely sapped of strength after all is said and done.
But I insist: I can't go out tonight.
Why?
Let's say: I have already participated in several outside-the-home activities in the last week.
Let's say: I have something big coming up that I know will take up a lot of energy.
Let's say: I just came out of a flare-up within the last month.
Let's say: I am starting to detect signs of a flare-up coming.
Let's say: I have been having shoulder or neck pains today, and even though those pains haven't traveled to my head quite yet, I know that the more I do, the solider the chances that they will.
Let's say: I have a sense that I would suffer later if I went out tonight, even though I feel fine now. (Sometimes my pain does not register as pain -- I don't feel anything -- yet I still recognize something wrong.)
Let's say: I just don't feel like going.
So? Can I go or can't I?
With fibromyalgia, and I'm sure with other chronic pain conditions, the problem is not simply pain felt in the immediate moment. Pain is not a binary transaction, where each activity either causes you pain every time you perform it or else doesn't cause you any pain any time you do it. Pain is not a simple spectrum, from smiley-face to crying-face, from "fully abled" to "completely disabled." There is not a point on a 1-10 scale at which one becomes unable. Disability is not a matter of the pain being too severe.
This is not how chronic pain works.That's what it's not -- but it's not very easy to explain what it is. The spoon theory does a pretty good job. Others have used the same concept, but with a different object for the metaphor: marbles in a bowl, etc. For my own life, I feel they miss the multidimensionality of the pain. The metaphors are a good shorthand, and they are excellent for explaining how chronic pain can affect a person's life to people who don't quite understand. But they only cover one plane, so to speak.
This is going to be complicated. Bear with me.
Pain builds. But it does not build in a strictly predictable way. I can participate in activities that cause a certain amount of pain, pain which is not disabling at the time it is felt. But while I feel the pain in that moment, my brain also stores that pain in a "cache" of sorts -- which only has a certain capacity -- where it stays until it is flushed out. The body is continually working to "flush" the cache entirely, which happens bit by bit when I am at rest, and which I can help along by resting my body in a soft but supportive place, in a comfortable position, with not too much light and noise (but that can interact with my anxiety, where if I am feeling awake, I have to have something to feed my brain, be it reading, music, or some low-energy mundane physical task). Heat helps relax my tense muscles. Making sure my medication is taken on time is imperative, no matter what. I can take painkillers if necessary, which don't work by flushing the cache so much as they work by blocking my knowledge of the pain. I do have medication that helps flush that cache, but it is maintenance medication, that is, I take the same amount all the time. So if I am dealing with extra amounts of pain, I can't simply take more of that medication. So basically, I cannot force my body to flush the pain from that cache, I can only enable it to do the work it is trying to do.
When I am doing something that causes pain, the flushing mechanism sort of shuts down (unless it is an extremely low level of pain -- which is why I spent a lot of time at this computer -- keeping the brain well-fed to keep it from going crazy, while minimizing stress on the body). The more pain that builds in the cache, the slower and smaller that flushing mechanism becomes. And the real kicker is that the more pain that builds in the cache, the more painful activities become. Standing upright may cause me next to no pain one day, but another day when I have been doing a lot of work and have not had adequate time to rest over the past several days, standing upright will cause a good bit of pain.
And things fluctuate. Sometimes, standing upright causes me some amount of pain while sitting down causes none. Sometimes, sitting down causes moderate pain while standing upright causes almost none. Sometimes even lying down is untenable. (Especially in the mornings, when my bones are very stiff and my muscles very sore from being in the same position for so long -- to my husband's disappointment, on the weekend mornings when we like to cuddle for a while before facing the world.) Sometimes, even on a day when I have otherwise been doing well, I will experience pain doing something that is normally painless for me -- or even find something easy that normally causes some pain.
Then, the great cosmos throw you several curveballs. First, sleep. Having the exact right sleep habits will also enable my body's flushing mechanism to move along smoothly. But it has to be exactly right. I have to go to bed when I feel tired, and I cannot wake myself earlier than I would wake up naturally. Yes, you read that right. I have to allow my body to sleep as long as it needs. I have found that inevitably, when I wake myself early, whether it be five minutes or five hours early, my "pain flushing mechanism" is pretty much completely destroyed for the rest of the day, and possibly reaching into the next couple days as well. Whether I get myself out of bed the first time I wake, or stay in bed and fall back asleep until I can't fall asleep anymore, depends on whether I am in a good state or whether I am needing any help I can get to get rid of the pain. I have found that I can get away with waking up early a few times a month -- two or three -- and not too close together. Any more than that, and my ability to flush the pain out of that "cache" is decreased more and more.
Second, stress can affect pain; they are interconnected. On a day when I am well physically but am dealing with a lot of emotionally heavy things, pain will begin to build in that cache, even though I am not really doing anything to cause that pain. Or if I am, the pain will be multiplied by a factor because of the stress. And say it with me now: that multiplication factor is not correlated with the severity of the stress. Sometimes a very small amount of stress will mean much much worse pain. Sometimes a great amount of stress will hardly affect my pain at all.
Third, pain is not the only thing you are dealing with. Ha! Did you really think you could get away with that? Fatigue is another symptom, and it builds too, although it does not operate in the exact same manner. Fatigue is not simply a matter of not having had enough sleep, although that certainly contributes. To simplify, fatigue is more a matter of not having the energy to get up and do the things that cause me pain. :) During the more severe times, it is when I feel that in the fight between my body and gravity, gravity is winning. It is when any small movement takes concerted effort. It is when the body feels dense and heavy. But other times, it is when I cannot seem to force myself to do something, even though physically I feel pretty much fine. When I need to get up and, say, do the dishes, but I can't seem to force my body to stand up and walk to the sink and start the chore. I stop whatever I was doing before, and I prepare myself to stand, but my body just sits there. And my mind goes blank. And eventually I get myself up and do it, but then I sit right back down when I'm done.
There are also cognitive difficulties, and of course, they are interrelated with all of the above, and all contribute to each other -- that is, great amounts of stress and pain may contribute to cognitive issues, though it is not 100% predictable. I can be in serious pain, but my brain is operating perfectly (in which case I get very frustrated because I can't do anything with my brain!!). Or I might be feeling ok physically, but find it difficult to concentrate. I'll be staring at words on the screen and not even be able to register them as words, and read them, without great effort. In that case, I can forget trying to comprehend meaning and form my own thoughts about them. There are other manifestations of said difficulty -- for instance, I am very imprecise with my words, which is probably noticeable to an extent here, but is particularly bad in speech. That's because my brain is putting its processing power into forming sentences from thoughts; it doesn't have much processing power left for searching the brainular vocabulary files for the exact right word. Mostly, I try to sketch out a vague shape of the idea in my head, and go in and add detail when I can afterward; I usually don't have the brain power available for being precise when speaking.
That's just a sampling. All of this is quite a lot to juggle. Managing my pain takes up a great deal of my mental ability. I have to devote serious thought to how every little thing is going to affect me. I can't just "forget." I am always aware of this. I have to micromanage my entire life if I want a chance at doing anything that I want to do. This means, to bring this conversation back full-circle, sometimes avoiding activities that I might be able to handle in the moment, but which might contribute to a worse physical state in the future.
Hopefully this paints a clearer picture of what it means to live with chronic pain. And, I hope, we can use that picture to inform how we think about ability. To almost every abled person and even many pwd, it is a simple concept, easily distinguishable. It is one or t'other. But for me, it's not. My ability to do one thing or another takes a lot of thought and consideration. And sometimes, I get it wrong -- that's what happens when you are dealing with something that is, at its core, basically unpredictable. But that doesn't mean I don't understand my body at all, and that when I tell you I am or am not able to do something, I can't be trusted to know. But I suppose that's another post altogether.
Please do leave your thoughts in comments. Fellow chronic-pain-ers, let me know if what I've detailed here matches up with your experiences, or if it's not quite right. Give me your thoughts on what ability means. I think it will gives us a lot of insight into what disability means too.
