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Yet Another Essay About Chronic Fatigue

September 17, 2014 Leave a comment

So, here’s the thing about living on the margins of disability with chronic fatigue and brain fog of uncertain etiology (i.e., unexplained symptoms).

Have you ever had a bad cold or hay-fever and you had to take a big honkin’ dose of Benadryl or Nyquil one of those other medicines that makes you all spacey and dopey? If you have, start with that (if you haven’t, I have no idea how to even begin explaining this to you. We might as well come from different planets).

Assuming you’ve had such an experience, think back on it. Think on the grogginess, the lethargy, the difficulty concentrating, the intense desire to just lie on the couch all day and not do anything that requires any physical or mental effort. You don’t feel up for much besides munching snacks and watching soap operas. Yeah, you can get up when you have to– you can, in fact, walk, talk, answer the phone, slouch your way into the kitchen for more snacks, check your email… but just barely, and not for any length of time. It’s not so much that it’s physically difficult to do any of these things, although you feel achy and clumsy and slow and would rather just lie still. It’s more that it takes serious and deliberate effort to remember what you’re doing, even while you’re doing it, and almost immediately afterwards the memory sinks away again into the soft mental blurriness of not-really-thinking about anything. It’s so very much easier not to do anything at all.

Imagine feeling that way most of the time. For at least part of every day, if not all day. Imagine fighting that feeling in order to get up every morning. Feeling that way as you try to make appointments, pay your bills, answer your emails, fix and eat meals and clean up afterwards, drive to work, do work, run errands, come up with the list of errands that need running in the first place… And on and on and on. Everything you can think of, you do while feeling this way, at least some of the time. Phone conversations with Mom. Putting away groceries. Deciding what to wear. Choosing whether or not to accept a friend’s invitation to dinner.

Imagine this. And then forget it, because what I’ve described so far only just touches lightly on what it is like to actually LIVE this way.

It says nothing about the guilt and dismay and despair you still have, 15 years after the fact, over losing yet another good friendship because, for the better part of a year, you just plain couldn’t muster whatever it takes to pick up the phone and call someone, anyone. Or answer a simple email. You tried to explain what depression means, how it eats away entire chunks of yourself and everything in your life, but few people can understand this unless they’ve experienced it themselves. It sounds unreal, even to you, even now. You wonder why you couldn’t have been a better person, why you couldn’t remember or focus or make the effort or drag yourself out of moping or whatever it was to spend a stupid five minutes making sure that someone else knew you valued them as a person. How can you explain, even to yourself, that even when you thought of doing so, the thought faded away mere moments later? That in some strange way you were barely aware of your own existence, let alone theirs?

And how do you square that with fact that, since no one stuck you in a hospital or an institution during that time, you must have been maintaining some semblance of a normal life all those months? You ate, you bathed, you dressed, you laughed, you went for walks, you went to work even! You appeared to be a fully functional person. Perhaps a somewhat lazy and irresponsible person, sure, but a real person all the same. You even felt normal most of the time, or at least normal for you. When huge chunks of your own life and self are missing from your awareness, you don’t really notice their absence most of the time.

You go about your daily business until something brushes a spider-web thread that jostles a memory, and then the bottom drops out of your world. The bill comes in the mail that says “3 months overdue!” or you get another phone message from the friend you can’t seem to keep in touch with, or a photograph slips from between the pages of a book and reminds you of an entire crucial section of your childhood that has somehow gone un-thought-of for ages. Or worse yet, that photograph has been sitting on your desk all along, and your eyes have passed over it time and again without registering the meaning behind what they were seeing. It’s a dizzying, jarring feeling when you realize these kinds of things, when you suddenly notice that time has been passing without your being aware of it. It doesn’t seem quite possible, no matter how many times you experience it.

But you suffer from a curious sort of out-of-sight-out-of-mind syndrome taken to the extreme, as though your mind were a pool of murky water and the vast majority of its contents visible to you only when they bubble up to the surface seemingly of their own will and very nearly at random. You can hold something at the surface to look at for a while, but the moment you let it out of your grasp it may sink again.

Enough stuff stays on the surface about your current life that you can pass for very competent in certain areas– work, school, a given hobby, a particular social group. The problem is that you can turn your attention from one of these things for what seems like mere moments, and an entire continent’s worth of material can sink, Atlantis-like, out of sight, so that you are horrified to rediscover, some weeks or months or even years later, that a major section of your life has simply vanished from your view, and all the important structures you had so carefully built and maintained have crumbled to driftwood. You’ve forgotten to follow up with that colleague you were so excited to meet, and surely that project you wanted to work on with them is long since finished. You’ve forgotten the name of the manager you worked with at the time, or even when you worked there, and most of the other details you’d need to put that job on a resume. And it’s probably too late to ask. No one you know even works there anymore, or if they do, they’ll be baffled to hear from you after such a long silence. How could you have lost track of something that once meant so much to you? You began to focus on a different area of your life, and in doing so, lost an entire other world.

Or it can be as simple as putting that bill down on your desk to go find your checkbook so you can pay it. Along the way something distracts you, and by the time you come back to the desk (without your checkbook, I might add), you’ve forgotten the bill’s existence, even though it’s sitting Right There, and eventually you’ll casually set another paper on top of it, or move it into the top drawer “momentarily” so you can use the space for something else, or even stick it to the fridge door with a magnet, where you will cease to see it because your mind glosses over unnecessary details most of the time, and when you go to get something out of a fridge, papers stuck to the door are surely unnecessary details. And then you get a notice that the bill is “3 months overdue!!” (how did that happen?!) and you feel like a lousy and useless person.

Or take the fridge itself. You bought a bag of peaches because you were excited to try a new recipe for some dessert. By the time you got home from the market, it was too late to cook, or you were tired, and you set the peaches in the fridge telling yourself you’ll cook them tomorrow. Only somehow tomorrow came and went, and you forgot about the peaches. And the next day you find a bag of peaches in the fridge, what a surprise! Oh yeah, that recipe! Let’s cook. But you look closer and the peaches have rotted and wilted away and you realize that somehow the “two days” since you bought them must have been closer to two weeks. You’ll have to throw them away and start over.

And after the fourth, or fifth, or is the fifteenth time that something like this happens, you wonder if you should just stop wasting food and money and eat nothing but canned soup and frozen microwaveable dinners for the rest of your life, despite hating the unhealthiness and the waste and all the packaging. You’ve tried all the little life-hacks. You left the recipe book on the kitchen table, where you’d be sure to see it, open to the page you needed. You stuck a note on the fridge saying “We have: PEACHES!!!” Sometimes these measures do work. Often they do not.

Why bother with anything? You can’t even invite someone over to share the peach dessert you finally cooked, because now your kitchen looks like it was hit by a tornado and smells like something died in it. Sure, you’re a normal, sane, responsible, decent adult person… who just happens to leave the dishes sitting in the sink for an entire week before washing them? Yeah, like anyone is really going to believe that. Would you? And it’s going to take three times as long to clean now as it would have if you’d scrubbed up right after cooking, and you know that, so why didn’t you just…?

Your life is a constant litany of “Why couldn’t you just…?” and “Why didn’t you just…?” and “Have you tried…?” and “Maybe you can…” Some from yourself, some from other people. The ones from yourself make you feel guilty and depressed. The ones from other people make you angry, defensive, and bitter. Sometimes you have tried. Sometimes you can’t muster the energy to try. Sometimes you mean to try, and forget. Either way, the fault always seems to lie, somehow, with you.

And inevitably, the vast majority of people in your life will come to the conclusion that you are lazy, or inconsiderate, or both. Never mind having friends over, do you have any idea how hard it is to find someone who is willing to LIVE with someone who regularly forgets to do the dishes? Who sits down to rest for a few minutes after eating and doesn’t even realize that she didn’t clear the table until it’s time for the next meal? Assuming you remember that there is a next meal to be had.

There are, of course, those days when you wake up with a bit of bounce in your step and do All The Dishes! and scrub out the sink and even mop the floor, and then suddenly it’s gotten to be 4 PM and you haven’t yet eaten anything or made any of the phone calls you needed to make and now you feel woozy because you didn’t eat and you have to go lie down for the rest of the day and probably won’t feel well tomorrow, either.

Then there are those rare days, or even weeks, where you’ve somehow gotten into a nice little groove– waking up, late breakfast, clean up after, run an errand or two, nap, check email, get an evening meal, relax with something fun to do, and you think “Oh, this isn’t all that bad after all. Sure I’m tired a lot and have to take things relatively easy, but it’s not unmanageable if I just keep myself on track. What a baby I was being all along! Why am I such a complainer?” and so on. And you start feeling marginally guilty about considering yourself disabled at all.

(After all, if there were something really, properly wrong with you, they’d have found it by now, wouldn’t they? All those specialists and blood tests and brain scans. And you probably wouldn’t have these periods of near-normality. Maybe you really are just lazy after all. At other times, of course, you feel even more crippled than your peers who have diagnostic labels. You know wheelchair users and cancer patients and people with severe epilepsy who do more in a day than you do. Lots more. How do they manage? Are they just stronger, better, more determined people than you? Or is there really and truly something wrong with you? There must be. But for now, you’re doing well, so why worry about it?)

Eventually, of course, there will be a scratch in the CD, a nail in the road, a missing step, and the whole thing will come crashing down around you, and you may not even notice it happening at the time. A skipped meal, a forgotten errand, staying up too late one night chatting with friends so that you oversleep the next morning, a change in work schedule, just doing a little too much in one day and not being able to do quite enough the next… and the whole system simply unravels around you.

And then one day you’re looking through the 27 million unread messages in your inbox and you spy the email from a friend you meant to respond to right away, only that email was from… six months ago. And there’s a tab open in your browser for an event you wanted to go to, and you looked at it every day for a few days and then it got lost in the shuffle and now when you find it again the event was… also six months ago. How did you come to this point yet again? What happened? Where did the time go? How did these thoughts spend so long underwater?

I can make to-do lists and charts and calendars and set my bills to pay automatically (yay technology!), but there’s no way to write down everything that needs to be remembered on a regular basis, and if I did manage to write it all down, I’d never have time to read it. How can I know what things I’ll forget, and when? I can’t. So what should I do? Maintain an immense spreadsheet of every friend, relative, and acquaintance, and when I last spoke to them? Not a bad idea, actually. I’ll get around to trying it soon, or at least starting it. I’ll lose track a quarter of the way into making it, I’m sure. Or make it and use it for a while before I miss logging one call and slowly stop using it all together, and it will become one more forgotten file taking up space in my google account, until by the time I ever find it again it will be so hopelessly out of date that I’ll have to start all over.

Do I sound defeatist? I hope not. I don’t feel defeatist or defeated, actually. Over the years, tips and tricks and practicing mindfulness have gotten me to the point where I can usually manage the most important stuff most of the time, and that’s a darn good start, really. And I have friends who understand, and/or struggle with similar issues themselves, and that makes a world of difference to my ability to accept myself. I still lose a lot, but not everything. I may not be able to do much, or do things very often, compared to most people, but I do greatly enjoy the things I can do, whenever I can do them.

I have my moments. Writing this was one of them. More of an hour and a half than a moment, really. And here it’s 2:30 PM and I washed half the dishes and scrubbed the sink but I still haven’t had breakfast… I think I’ll go do that now. Writing this helped. It got the words out of my head and into something that will remember them for me, something that can reach out and touch other people’s lives. I don’t think I said everything I meant to say, but I came pretty close. It makes me feel more real when I can do this kind of thing. More worthwhile as a person. And more hopeful, too, because it’s a reminder that I CAN do things, sometimes even amazing things, and do them well. Just not very often.

A Letter to My Body

This is a really valuable reminder. It’s equally important to remember that 1) “behavior” isn’t always voluntary and 2) even involuntary actions have reasons and causes that need to be understood and respected.

growingkidstherapy

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A few weeks ago, my client, Ethan, came in for his session very upset and agitated.  We began our lesson and tried working through his irritation to no avail. Ethan was becoming more and more distraught. So, we took a short detour from our lesson to discuss the issue. I am a big stickler for doing lessons in RPM sessions – it is part of how RPM works – engaging the brain and then body in cognitive lessons. However, sometimes the situation calls for a change in plan and this was one of those days!

Elizabeth:  Let’s break for a moment Ethan. I can see you are really upset. What’s going on?

Ethan:  I AM UPSET BECAUSE I AM NOT KIDDING AROUND AND I CAN NOT HELP IT WHEN MY BODY ACTS OUT.

Elizabeth: Let’s try writing a letter to your body.

DEAR BODY,

I DO NOT LIKE YOUR BEHAVIOR TODAY!…

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Being tired is not the same as fatigue.

Yes, this. Very much this.

Ballastexistenz

Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.

I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.

I do get tired. I get exhausted. But even at my most exhausted it’s not the same.

Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.

I wish I could just upload the feeling into people’s heads…

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Interlude – “special” people

June 23, 2013 1 comment

Sometimes I see parents, educators, and others who love and work with disabled people (and especially disabled children) refer to those people with disabilities as “special” in some religious or spiritual sense. This notion has been around a long time: there is evidence that in many cultures and faiths, dating back beyond recorded history, people with epilepsy, schizophrenia, and many other physical and neurological differences, have been worshipped, revered, seen as having a unique connection to the divine, etc..

These days, I most often see people referring to autistic children, for example, as lessons to others, or as having special spiritual qualities, or being more angelic than other children, and so on. I know it is meant well, but there are problems with this viewpoint. While I certainly prefer this opinion to the notion that disabled people are worthless, burdens, disposable, or even a threat to the future of humanity (as many eugenicist still argue, despite ample counter-evidence from the biological sciences), I still feel the need to speak against it. Here’s why:

1) It puts a lot of pressure on the person in question, whether child or adult. Not only do they have to deal with being stared at, avoided, pitied, and misunderstood, but in addition to that, they are expected to behave in a way that is beyond reproach. In reality, however, children with disabilities get cranky, misbehave, and have bad days. People with disabilities can be as mean or petty as anyone else. They get angry and sad and jealous and selfish, just like anyone else.

2)  This leads me to the second point, which is that, no matter how big the differences in how they look, think, function physically, or communicate, people with disabilities are more like everyone else than different, and they deserve to be treated as such. To consider them otherwise — even in a reverential way — is to do them a grave disservice.

I don’t usually express myself in religious terminology, but if I were to do so, here is what I would say: People with disabilities are neither angels nor demons, neither possessed by evil nor unusually touched by the divine. They are human beings, and like all of us they have hopes and fears, dreams and dreads, petty concerns and big questions. The life of an autistic child is no more nor less sacred than anyone else’s. No people with disabilities should be placed above or below the rest of us. They are simply people– all individuals, all with the potential to do great or terrible or mediocre things with their lives, but no better or worse than any other person simply by virtue of being disabled.

3)  One more point: sometimes, those who love disabled people see how much they suffer and struggle, and feel that it is only fair that in return for this undeserved pain, they must be given some kind of gift as well. Most of us know, somewhere in our hearts, that life is rarely fair, but this doesn’t make it any easier for us to understand why some children should be born into lives that are so much tougher than others. Our world can be a cruel one: children are born into war, into poverty, into families that will hurt them, or into bodies that must work so much harder to keep up with others.

But to see disability as inherently tragic is also to do a disservice to the disabled. The fact that disabled children are more likely than others to be abused and abandoned is a societal problem, not a fault of disability. The fact that so many people with disabilities end up poor, uneducated, and struggling to support themselves is also a fault of the world they live in, not the body or brain they were born with.

Some disabilities cause physical pain, it is true. But far more often, they pain they cause is emotional– and avoidable. Some disabilities result in a shorter life, it is true. But very few disabilities necessarily result in a lower quality of life. Don’t take my word for that, please, and don’t take it for granted that I am obviously wrong. Instead, listen to the only people who can truly answer that question one way or another: those who have spent their lives being disabled.

If we truly want to respect and help people with disabilities, we should not see their disabilities as inevitable burdens and pray that they be compensated accordingly. Rather, we should all work for a world in which the disabled are truly included and accepted, a world in which being disabled does not carry stigma or cause undue hardship. Every human being deserves  respect, care, and a fair chance to make the very best of the life they live. And until we offer these things to every person in equal measure, we should not look to any power beyond ourselves.

It’s Blogging Against Disableism Day!

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Thanks to Dr. Nightengale of Samarkand for reminding me. I didn’t think of a specific post for today, but in a way, every time I write a post on this blog, it’s an instance of blogging against disableism. I also have in mind a post or series of posts I wanted to write today anyway, whose topic(s) dovetail nicely with today’s idea. Without further ado, I’ll get to work on those. Hope you’ll take that journey with me!

Meaning Well Is Not Enough

December 6, 2012 1 comment

Re: http://www.autismspeaks.org/about-us/press-releases/tom-hanks-will-ferrell-derek-jeter-betty-white-william-shatner-sound-off-for-autism-speaks

My heart is broken.

A number of truly wonderful people, including my idols Sir Patrick Stewart and Betty White, are participating in a fundraiser for Autism Speaks, presumably because they are unaware that Autism Speaks is widely mistrusted and hated by the demographic it claims to be helping, for reasons ranging from financial mismanagement to an outlook about Autism Spectrum Disorders that verges on eugenicist.

I’m not up to explaining right now why these celebrities should NOT be helping Autism Speaks, of all organizations. A good list of such writings is available here:

http://autisticadvocacy.org/tag/autism-speaks/

Please help me boost the signal, spread the word, and get the message to the people involved that they made a poor choice of charities this time.