The first thing I need to say before I delve into the topic is, “Limitations are real.” At least in our culture, we have a habit of saying things like, “Toughen up. Get over it.” As if ignoring something will help us get through it. We have a habit of shutting our eyes to the difficulties that come our way, gritting our teeth, and plunging through.
Or at least expect that other people should.
We want to pretend that mortality, life, trauma, injury, scarring, fear, and so on, does not happen to us if we simply refuse to let it. Sheer force of will. We get angry or frustrated as we grow older, when our bodies start breaking down, as if our body is insulting us by not withstanding the test of time like an immortal, by not meeting our high expectations.
So when I talk about these limitations, I want you to ask yourself if you think I am a whiner. When you read books with a limited or broken protagonist–such as Katniss in The Hunger Games who starts the book off already broken by her past, her father’s death, her mother’s withdrawal, and struggling to keep herself and her family alive–was your reaction one of compassion or did you think something like, “Stop your whining. Buck up. Quit being so melodramatic. Quit complaining how hard your life is. Get over it”?
I have a friend who was diagnosed with PTSD. What would have happened if I had reacted to her in that way?
Granted, many limitations are self-imposed. (Some common examples: worry, low self-esteem, a belief born of fear that you are incapable of making your dreams come true.) But many times they are not. We need to learn to tell the difference. But that’s another topic for discussion.
Limitations are real. To deal with them, we must first face them.
I’m going to repeat that, in case you’re like me and ignore bold things that look like headings.
Limitations are real. To deal with them, we must first face them. (Sounds like a Legend of Korra episode, doesn’t it? *amused*)
In Chronic Fatigue Syndrome, there are three main kinds of limitations.
- There are the limitations that my illness puts on me. I feel like I’ve lost a limb or I’m in a glass room where I go to walk forward and suddenly I hit a wall where before there were none. Or I go to take a step and my metaphoric leg’s suddenly not there to hold my weight.
- There are the limitations that come from fear and frustration. These were especially crippling in the earlier months of my illness, when I didn’t know what was wrong, what was happening to me, what to expect of myself and what I could and couldn’t do anymore.
- And then there are the limitations that I’ve created in order to take care of myself. This will sound odd, and I won’t be able to really explain this set until my post on self-management, but basically if I don’t say “no”, if I don’t learn to step back and do less, have kinder expectations on myself, then all I do is make things worse.
For a few examples of limitations, let’s see. I’ve already given several examples in my post on symptoms: the telephone call I spoke pretty explicitly about how I suddenly couldn’t function where I would have been able to were I healthier, as well as my sudden struggles with the language, my ability to converse easily in any language, and my sudden physical limitations getting groceries, walking for hours, climbing the plateau, etc.
Let’s see, what else can I use for examples. Many of the stories I can tell are too embarrassing, too personal, or have happened too recently for me to be comfortable sharing them. However, I should probably tell one story, embarrassing or not, because I think it illustrates the “glass room” principle fairly well.
Not too long after I was diagnosed, I spent an evening with a couple friends. –I should back up here and say the ideal is that ‘just because I’m chronically ill doesn’t make me a patient to be coddled and protected’, but in practice I try to make sure that anyone who hangs out with me knows that I have limitations, what those are, and for us to try to work out somewhat in advance a way to try to work within them. For example, I can only hang out for a few hours, and I can’t do anything too rigorous or else bad things happen. One such weakness that invariably happens if I go too long or do too much is that if I’m too far gone, I stop being able to express the fact that I’m struggling, that I need to go home, or that my logic feature is slowly breaking up.
Anyway, back to my story. It was a typical evening in the early stages of this balancing-act game of trying to live a ‘normal life’ while still acknowledging that I had limitations. As part of the evening, maybe after a movie?, we all went out for Subway. I managed to order myself a sandwich, which I was quite proud of, because that sort of thing is hard for me now. I also ordered a different enough sandwich that it would be obvious just from looking at it that it was mine. Flat-bread looks very different than all the other kinds of breads, plus it makes everything taste quite different. See? I was planning in advance, knowing my weaknesses and learning from past struggles. Unfortunately, when we got home, we pulled the sandwiches out of the bag, I looked at each one carefully and slowly, trying to very logically recognize and remember which one was mine. I chose it, feeling quite proud of myself for a job well done, then started eating. … Only it wasn’t mine, as a friend discovered when she went to find hers. For all my attempts to get it right, I didn’t. I think that was one night where it really hit home to my friends that I wasn’t all there, wasn’t all right, despite my illness’ invisibility. Such a simple thing, but it’s the small things that can have impact.
This isn’t the only time that I’ve shamed or embarrassed myself with my inability to function the way I should, not by a long shot, but it illustrates the principle of what happens each time. I think about things slowly, carefully. I analyze, I try to remember, but something fails to connect, and I don’t always recognize it, not for my lack of trying.
Again, don’t let the logical flow of my writing fool you. You don’t see behind the scenes, you just see the finished post.
What “post-exertional fatigue > 24 hours” really means.
One symptom that I didn’t explain at all in my symptoms post is “post-exertional fatigue”. On the surface, it sounds very simple: you get tired after you do something, right? But, actually, it’s a doctor’s term to mean something quite a bit worse.
The more I try to do in a day, the worse it is for me the next day. For example, if I try to write for three hours throughout the day on Day One, on Day Two I am in bed, exhausted, limbs heavy, mind filled with the thickest fog, nauseous, losing all the food in my intestines in any direction it wishes to come out, dizzy, and–the list goes on. If I go out with friends on Day One, on Day Two I can’t do much of anything but be in bed. If on Day One I do this, then on Day Two, I pay the consequences.
For example, when I went to LTUE this year, I went for two days–a few hours each in the afternoon. However, since I went by myself and had to take care of myself, I spent whatever time I wasn’t at LTUE in bed, and then if I remember correctly I spent a few days after that recovering–again, mostly in bed. CONduit was better. Though I got up earlier and I spent a longer amount of time at the convention, I also went with a friend whom I trained (thankfully I can babble about my limitations on autopilot now) how to take care of me and what I needed, and I ended up not, well, suffering as much for the experience. Yet the next day (Sunday) I spent mostly in bed, recuperating.
For however hard I get hit on the day I do things, it’s always worse the following day. It’s the strangest thing, but it’s true.
I should probably mention here that I nearly had a breakdown at LTUE, since we’re talking about limitations, and this story is apt. LTUE was held at a different university this year, one I am unfamiliar with. It was in the student center, which to my mind was labryinthine and crowded, with people walking every which way. I had to find each classroom on my own, as embarrassingly childish as that sounds. Focusing on finding my way, on listening to the instructors, and so on–words can never express the difficulties each of these simple things entails for me. Anyway, by lunchtime I was in a bad way, just barely functioning. Luckily, one of my colleagues from Armenia found me–a fortunate coincidence–at the precipice of a breakdown. He steered me to the cafeteria, watched over me enough to make sure I could get food, eat it, and return to the convention all right. I’m not sure if he knew at the time that these were things I could not do for myself, or how daunted I was by the prospect of how to do them on my own.
Gyeh, now I’m tearing up. But I’m still immensely grateful to him for what he did, skipping his class just to help me. I know for certain he didn’t understand the full impact of what he did, or why I even needed it.
Okay, now back to the topic at hand.
So, imagine for a moment that one day you wake up and you feel “fine”–or, y’know, at least “better”. You feel somewhat refreshed. Your hope burgeons and you smile and say, “Today is going to be a good day. Maybe I can do more today.” So you do more, but then–the next day? If yesterday you rose thirty miles towards the sunlight, the next day you fall a thousand because you dared to do too much, even though at the time it felt okay. I’m not exaggerating the percentages, either. Up thirty? If you do too much, you’re down a thousand.
There is a disconnect between how I supposedly feel and how my body actually is. If I don’t limit myself on my “good” days, I will be in bed for days after that, fighting misery.
This, in effect, becomes a two-way limitation. My body limits how much I can do, but then I also have to moderate how much I actually do in fact do, because if I don’t moderate myself on top of my body’s limitations, my life will be far worse than it already is.
So, earlier I said that to deal with our limitations, we must first face them, and that ignoring them doesn’t do us any good. I should probably address what I mean and how that relates to my situation.
As I explained in the “post-exertional fatigue” section, if I don’t acknowledge what happens to me when I do xyz and plan accordingly, then I only end up in bed the next day. However, when I acknowledge my limitations and try to work within them or plan accordingly, I can live a much more ‘normal’ life. Moderation actually means I can do more not less. It sounds strange by itself, but in practice it works wonders. If I take care of myself, pace myself, I end up being able to have a larger percentage of “good” days where I’m functional enough to write for a bit or take a stab at translation or go to a movie with friends or alpha-read. If I don’t look at my limitations in the face or acknowledge them and say ‘I’m not afraid of you’, then all of those days spent in denial just mean that I feel worse and can do less.
Facing our limitations is like facing our fears. When I first became sick, I was afraid that being sick and having so many limitations meant that I couldn’t fulfill my dreams, that they were lost to me. Now I know better. I know there’s always a way, and that taking care of myself, being patient with myself, and not getting frustrated is it.
We don’t accomplish more by ignoring what we can’t do or what has happened to us. We accomplish more when we see ourselves clearly.