Category Archives: Chronic Fatigue Syndrome

Variety + Priorities = Life

Life is glorious. If you’ve forgotten this, then maybe what you’re lacking is a little variety.  Change up your routines. Do something new, something you’ve always wanted to do–or something you’d never even considered doing before.

Variety is the spice of life.  Despite the inability to do much in any given day, there are a whole lot of things I could do. (Note how the “should be doing” is absent. Self-imposed deadlines are just that–self-imposed.)

I can read, write, blog, listen to music, watch a TV show or movie, explore the Internet, embroider, draw, paint, play a game, work on my website, alpha-read, organize something, go for a walk, dry flowers, help a cause, read blogs, spend time budgeting, write an e-mail or letter, talk to friends or family, plan a trip, dance to a song, research something, learn a new skill, take a nap, admire the paintings on my wall (you laugh, but it happens a lot), visit a museum, take a walk through the city’s gardens, go through a box full of memories, start a new project–

And have you seen my list of projects? If you haven’t seen my Storybox, know that this isn’t even the full list of things I work on off and on.

There’s so much to do and discover, even if I have little energy to give.

In fact, I have a list of 12 things that I can see from my bed for when I’m too braindead to do much or too much in a fog to think of something to do. I just look at the list, and pick whatever sounds the most appetizing.

Boredom, my friend, is far worse than pain.   There’s a huge difference between my ability to cope with my illness when I can’t think of anything to do and when I have something to enjoy.  So I keep that list handy of things that don’t take a lot out of me, and then I match the items on the list to however I feel.

For example, I spent most of today and my downtime yesterday (as I type this) watching the French musical Roméo et Juliette as recorded in 2001. It’s up in its entirety on youtube.  (Oh blessed be.)  It was both educational (exercising my French comprehension muscles) and fun and relaxing (the music is quite good and the lyrics are gorgeous).  What’s more, in all those hours of my brain simply not working well, I wasn’t bored.  The time passed quickly, and I am happier for the experience. Because I’m happier, then the people around me can be happy, too.  All-in-all, this little piece of variety to spice up my past few days has been good.

But for all the variety, if I don’t prioritize, nothing will ever get done.  Priorities, then, are what make accomplishments.  So out of all the million things I could be doing, I pick a handful to concentrate on.  That handful can change even from week to week or month to month.  For example, I was working almost exclusively on my novel The Witch’s Tower up until I realized that writing accurately about my illness was more important to do right now.  So I created Queen of the Eight Banners, my fiction project to that end.  Yes, I have been working on it for the past year, but I’m not as discouraged by this slowness as I was at the beginning.  Creating something new entirely wholesale, from scratch, is hard for me right now, and I’ve realized that’s perfectly fine, I’ll just keep going anyway.  But then I realized that I should write these nonfiction blog posts in the meantime. So, as I puzzle over a hang-up in Queen‘s part 4, I’m writing you these posts.

I have other priorities, of course, but they don’t relate directly to this particular topic, so I won’t go into them.  Instead, I will simply say –

Dream. Take chances. Try something new.  Have kind expectations. Prioritize.  Everything else will fall into place.


Great Expectations

Mwahaha, I did indeed steal that title from Dickens.  Yes, I did read the book, so I assume it’s allowed.  No, this post won’t be about jilted women who never change out of their wedding attire, but it will be about expectations and how weighty they can be.   What follows will be a concept that never occurred to me until my therapist and I went over it, but it’s one that has completely shifted my worldview and the way I try to live.

Now, with that weighty introduction and the pressure of the expectations I just set, let’s see if I can live up to it.  (I know, I’m terrible. You can shoot–or thank me–later.)

First, have some quotes to chew on.

“Make no small plans, they make no magic to stir man’s soul.” ~Unknown

“…it is better to aim for the moon and get halfway there than just to aim for the roof and get halfway upstairs.” ~Diana Wynne Jones

Now, to business.

Goals.

I am very good at being ambitious.  I have a million zillion things I want to do, tons of lofty goals to aim and shoot for.  I had a six month blip when I first got sick where I wasn’t sure if I was even capable of aiming for or reaching anything, but that passed and I was back to my old routine of shooting for five, six stars at once.   This is perfectly acceptable.  However….

The Stress of Expectations.

There are two ways Expectations can be a heavy burden.

  1. If you expect you will fail, then you won’t work hard enough or resourcefully enough to see that you don’t.  “I can’t” or “That won’t work” or “That’s impossible” or “There’s no way that…” then becomes a self-fulfilling prophecy.   All your energy will go into negative thoughts: worries, fears, stresses, panicking, disbelief–when it could be going into constructive directions: problem-solving, creative brainstorming, researching options, trying, failing, then trying and succeeding.
  2. If you believe everything must or should turn out a certain way, then you feel like a failure if it doesn’t.  Deadlines, schedules, task-lists, itineraries, plans, goals, perfectionism, and so on can hinder as much as they help.  If you don’t reach a goal in the time you allotted yourself, if you don’t manage to accomplish everything on your list for that day, if once again you lost your temper when you’d sworn you would never do that again, you feel terrible, crushed by the weight of your self-imposed expectations.
  3. (Technically, there is also the weight of expectations–real or imagined–that others put on us, but for this discussion I’m not going to deal with this one.)

They’re both related to each other, obviously, since they both deal with the expectations we put on ourselves and our situations.  Though #1 is about expecting failure and #2 is about expecting success or completion.

Let me go back to the quote from Diana Wynne Jones: “…it is better to aim for the moon and get halfway there than just to aim for the roof and get halfway upstairs.”

Someone with Expectation Problem #1 will expect to fall short, so they probably won’t even try for the moon.  Or if they try, they will be kicking themselves and the people who might try to convince them of its possibility to the point where they won’t get very far at all.

Someone with Expectation Problem #2 will expect to reach the moon and then, when they only manage to get halfway, they will kick themselves and get depressed and wonder why they weren’t good enough to succeed, completely ignoring just how much they did manage to accomplish.  Their self-worth takes a huge hit to the guts, and they will only believe the praise of others when they’ve managed to accomplish something again.

Aaaah, yes.  Our expectations can be problematic indeed.

How this topic relates.

Because of my illness, my limitations and my abilities completely changed, meaning that all my old expectations of what I could or could not accomplish in any given day, week, or month were not just “no longer applicable” but placed a huge strain on my day-to-day life.

And yet, because of my illness, I was able to sit down and rethink a lot of my behavior and attitude towards myself.

Letting Go of Harsh Expectations.

Here is what I jotted down in my little pocketbook after a therapy session back in May 2011:

“Determination, pushing through, worked in the past–but now you can’t work yourself out of this. You work hard and you get sicker. You just have to learn to stop measuring life by tasks and learn how to be and live and hope for God to help and for whatever I do to turn out ok and trust that God is in charge.  Nothing wrong with hard work or determination, but there is balance and letting go of the things you can’t control or the things you simply can’t get done or do and just learning to live.  And breathe. And balance. Learn to live.”

Rambly, but hopefully it makes some sort of sense to someone not me.  Yes, you can tell from this that I struggle with Expectation Problem #2 a lot.  Hopefully I’m getting better at it.  I’ve made progress on it over the last year, at least, though even as I write this I have this self-imposed deadline of finishing up this blog series within the next week.  And if I don’t succeed, how will I feel?  Will I feel like an utter failure?  No, I’ve managed to temper my goals/expectations a little so they’re not as weighty or as all-important or as rigid as they used to be.  But I will still get a little kick of failure to my guts.

“Learn how to hope instead of constantly push through things. Hope sometimes is like a surrender.”

Good Expectations.

Let’s see if I can describe what good expectations look and feel like.  We’re not quite old friends yet, but we’re tentative acquaintances, so I’ll try to paint a rough sketch for you.

Good expectations are

  • forgiving
  • kind
  • patient
  • reasonable
  • hopeful
  • flexible
  • resourceful

In my interview with Charlie Holmberg, when talking about how my illness helps or hinders my writing, I said, “…writing daily keeps me going, mentally and emotionally, health-wise. Though I am no longer able to tally up my self-worth based off of how many things I can accomplish in a given day, week, or month (which is a blessing, I’ve found), creating something personal daily and crawling towards my goals still brings me great satisfaction and stability. Time—and the expectations of arbitrary deadlines—have gradually lost meaning to me. Now it’s more about the journey, more about the present, the moment, and of being who and where I am.”

An Example.

Right now I have an expectation: I would like to finish this post (and blog series) before I leave for Chicago next week.  Expectation: I would like to do a good job talking about this subject.  However, I have some conditions: I’m tired, and a bit burned out.  This isn’t the first thing I’ve had to think through and piece together today, and part of my face is going numb, among other things.

How I’m tempering/adapting my expectation:  I’m using a lot of quotes and already-written materials to try to express myself.  I’m reminding myself that if I don’t get this post done before the end of the day, it really isn’t the end of the world. Also, I’m curbing my perfectionism–this post is just a post. It will go up tomorrow (Friday) but it doesn’t need to be spotless, or perfect, or even completely coherent. I can always take a hint from the film industry and fix it “in post” if it comes down to it.  And yes, even if I only reach  my moon-goal halfway and only half of this post makes sense or does what I hoped it would, then that is okay, too.  It’s infinitely better than no attempt at all.  And you know what? I’ve had a lot of people telling me how much these posts have opened their eyes and taught them something new.  So that is something I can smile about and be proud of.  Rather than take a hit to my self-esteem, I’m going to choose to take some points.

Now my expectation about this post is a kind one.  It doesn’t weigh as heavily on me as when I started.  It’s hopeful about what this post can accomplish, but it’s patient with my limitations and forgiving about what I fall short on–and will fall short on.  It’s also resourceful in acknowledging that I will come back and reread and tweak this before the day’s ended.

Now that I’ve finished, I’m done with brainwork for the day, so it’s time to rest up. And tomorrow, I’m going to one of my favorite places around the city, so that will be refreshing and something to look forward to.

Wherever my best work brings me, whether it’s half-way to the moon or only a quarter of the way there, then that is good enough.


Healthy Living

I can already tell this post is going to be scattered. If I could label it “miscellaneous,” I would probably do so, only–miscellaneous things are supposed to come at the end and I feel like the topics I want to cover today should go here, rather than there.

Again, I’m going to result to bold (emboldened?) headings.  Proceed with caution.

Belief.

I did promise not to dwell too much on religious or spiritual subjects, and I’ve kept that promise. However, I would be remiss if I didn’t mention anything spiritual here, as it’s one of my main coping strategies.  My beliefs give me a sense of stability: I can rely on God to be there for me, when I’m otherwise alone.  I can rely on Him to understand me, when no one else can.  I turn and ask God, if I’m ever confused about what I should do.  My faith also allows me to trust that, well, my illness isn’t the end of the world.  It keeps me from pitying  myself too much, and gives me the courage to meet my challenges.  Through the lens of God’s immortal eyes, I can see how much I’ve gained: compassion, for one, knowledge, experience, and patience are worth the price I’m paying for them.

And the hope: everything will work out in the end.  If it hasn’t yet, then that simply means it’s not the end.  Goodness exists.  Happiness can be found in any situation, yet sorrows are real, too, for even God weeps.  I have worth no matter how I feel or what I can or can’t accomplish, and so on.

Healthy Living.

The old fall-back is, of course, “eat well and get your exercise.”  For all the things that are wrong with me, my vitamin levels are actually doing quite well.  I try to eat as balanced a diet as I can, with plenty of fruits and vegetables, and a variety of foods in every meal.  Even when nauseated, I try to eat something and keep my blood sugar up and my body fed.  Sometimes I have to result to sipping Sprite to keep my food down, (probably about twice a week), but what works, works.

As for exercise, I take a 20 minute walk about four days out of the week.  It’s highly refreshing to be in the sun, the fresh air.  I can’t necessarily look at things around me.  Everything is kind of blurry, and I often only have impressions of things here and there.

For example, on my route, a tree has bled sap all over its side, leaving a cloying stench in the air.  There’s another tree with an overhanging branch that I touch as I pass, to remember what the texture of bark feels like. It grounds me.  One house has a little yapper-dog that greets me angrily with every walk.  At one point, I try to be sure to stop, because the vista is worth focusing on, and if I don’t stop and wait, I won’t be able to see it.

But suburban nature or not, the sun, the air, the walking refreshes me in one way and exhausts me in another.  Both are worth it.

Biofeedback + Guided Meditation.

In my post on symptoms, I mentioned briefly that at the Mayo Clinic they taught us how to reset our stress responses manually, since my body can’t regulate itself.

One of the ways they taught is called “biofeedback.”  Essentially, it’s breathing slowly, evenly, deeply and from the diaphragm.  6 full seconds in, 6 full seconds out, ideally for two fifteen-minute intervals per day.    There are many things about how our bodies operate that we can’t control just by thinking about them, but how we breathe is one of the things we can control.  So, deep, relaxed breathing even when the rest of my body simply can’t relax, helps the body to slow down and ease out of the tight coils of stress and panic.

(There is more to it, like being aware of if our muscles are tight and clenched, or relaxed and loose, but for this discussion we’ll just stick to breathing.)

However, as I’ve already mentioned, I have a hard time concentrating. I can’t focus on something for more than a couple seconds at a time.  So how am I supposed to focus on my breathing for over 12 seconds?  It doesn’t work, no matter how many times I’ve tried.

Again, I need help.  But I’m not going to ask a friend or family member to sit with me saying “Breath in, breathe out.” That’s a little ridiculous.  Instead, Mayo Clinic also introduced us to guided meditations.   Basically, they’re recordings of a professional speaking, guiding the listener to imagine or think about specific things in a soothing way.

I was first introduced to the idea by a couple of “hippie” art teachers in junior high.  The guided meditations I listened to with them were about beaches and mountain paths.   Pretty, yes. Relaxing, yes.  A little strange, but kind of fun? I thought so, at least.

The ones I listen to now, however, are by Healthjourneys.com by Belleruth Naparstek.  The collection I use most often is “Relieve Stress,” though I also own the one she did for “Fibromyalgia and Chronic Fatigue.” I lie down, I listen to what she has to say, and I breathe.   Our imaginations–and what we believe about ourselves–are powerful things.   Admittedly, turning ourselves over to another person–even a recorded person–makes us vulnerable, and I am well aware that not everyone reading this is willing to do that, or to take time out for themselves.  However, I’ve found that what she has to say and how she says it are so spot-on that sometimes when I listen I find myself crying.  She gets it.  Like a deep-tissue massage she goes right to the heart of it, and eases the trouble away.

Music.

Anything that relieves tension is what I need.  So…I find myself listening to a lot less rock than I used to.  Rock is like candy now, for special occasions.

I won’t go into my full list of current favorite musicians, but I do want to promote one singer and harpist, because when it comes to my illness, she’s been a true heroine.  Yasmeen Olya has kept me company through a lot of dark nights and troubled days.  There’s just something intrinsically sublime and heavenly about her music.  She sings and plays from her soul, and though few of her songs have anything resembling traditional lyrics, they’re not needed.

I only have her 2008 album, but I intend to get her others.

Humor & Stories.

I have never appreciated the power of humor as much as I appreciate it now.  I never realized how much of a burden intense and dark stories put on their readers before I got sick, either.

One of my main coping strategies is to escape into the world of fiction and story.  This actually bothered me quite a bit for a long time.  “Escapism” is a derogatory term, and reasonably so.  Men make fun of women who read nothing but romance fiction but can’t manage to have a good, healthy relationship of their own and point out the mirage the books create as the cause.  Others mock the geek for burying himself in science fiction novels but, despite knowing how spaceships work, he can’t for the life of him operate on a person-to-person level in the “real world.”

However, my “real world” is filled with pain and hardship.  Is it a weakness to want to leave it for a few hours? Rather than grit my teeth and bear everything?

And yet, what do I have to gain from staying and letting the spiraling sink hole get me when I could leave and travel alongside someone else for a while?  (If the sin is gluttony, not fiction, then let me beware and find balance, rather than feel guilty for escaping.)

And so I delve into fiction, and the humorous stories are the ones that have eased my burdens the most.  Here are a few of those I’ve read and reread:

The stories that have helped me the least are the darkest or most intense ones, where the authors believe in “highest stakes, no matter the cost” principle.  As in, the stories ratchet into higher and higher intensity, greater and greater stakes, with few breaks or places for the reader to rest their emotions or receive some sort of resolution.

These stories actually damage me, and I’m left quite ill, sometimes for days afterwards.  If I’m listening to one of these stories as an audiobook, say goodbye sleep.  Just last night I was listening to a new audiobook where the stakes/intensity were too high.  My body went all out of wack. I couldn’t get back control, and so I had to stop listening and put in Howl’s Moving Castle again, just so I could have some help relaxing.

My defenses are fewer than they were, so I have to choose everything carefully.

Looking for the Good.

Finally, it’s important to remember there is good in every situation, no matter how bad it appears.  I’m going to do a post on this more later, but I thought I should point it out here, as well.  No matter the disadvantage, there’s an advantage to be found in it.  No matter how dark, there is still light.  No matter how badly things are going wrong, there is always something that can turn out right.

From February to October 2011, I kept a daily pocket-journal (which I bought at Mayo Clinic’s hospital shop) that helped me specifically to look for the good in every day, and to record my concerns so that I wouldn’t have to keep them rattling around inside me.  I’m pretty good at spotting the good in what I do and how I live each day now, but at the beginning it was difficult.


Dreams Come True

Alright, here goes nothing. I’ll admit to procrastinating writing these next few posts. For some reason, talking about self-management and coping strategies is hard.  How do I sum up my day-to-day in an organized, understandable manner?   How do I demonstrate for you hope, humor, perseverance, and patience? How do I approach the topic at all? Chronologically? By theme?

I jotted down ideas all over a notebook page, but I’m out of time: I’m going to need a few days to write and rewrite for clarity, so I’m going to wing this now and hope for the best.   By the time this post goes up in a couple days, hopefully it’ll be lucid.

(Is it cheating that I rewrote/edited the “I don’t know what or how to write this ” paragraphs above so that they made more sense?)

Knowing is half the battle.

(We’ll treat that bold phrase as a heading this time, though in previous posts bold phrases were something I only meant wrote as an emphasis. )

There is a phrase we all know and use rather flippantly, “Knowing is half the battle.” But however cliché or flippant, it’s true.  If you don’t know where the enemy is, how can you begin to fight them? If you don’t know how to make a rocket, how can you ever hope to reach the stars, let alone leave Earth’s orbit?

And if you don’t know what’s wrong with you, how can you fight the plague of fear and doubt? It’s very difficult.

For over six months, I didn’t know what was wrong with me.  When I finally was diagnosed, there was a night and day difference.  A huge pressure lifted off me.  I knew for certain I wasn’t crazy, I didn’t have to fight that fear any more.  I knew for certain that I wasn’t alone, others had walked this path before me.

I knew for certain my illness wouldn’t be curable in a matter of days, weeks, medicines, or months.  You might think it is strange to hear how liberating this was.  But consider this:

I knew for certain I would be like this for a while, that this was my Present, and I no longer had to fight it or worry about it, or wonder at it.  I no longer had to try hard to be normal or be just like everyone else or fulfill anyone else’s expectations.  Knowing myself, my limits, my Present, was half of my battle. I could channel my conquered fears into constructive rather than destructive directions.

I began to turn my focuses around. No longer did I have to keep track of my symptoms in order to explain to doctors what was happening to me.  Now I only had to test my limitations, keep track of the differences so that I could explain to others how to understand me and how to help me when I needed it.  One is fear-driven; the other, compassion.  Compassion for myself, compassion for and patience with others.

Dreams Still Come True.

But besides my diagnosis, the single most important epiphany I had when I learned what was wrong with me was that my dreams could still come true.  I still had the power within me to further my dreams and do the things I longed to do.

I have great limitations, yes, but “no power in the ‘verse can stop me.”  (Like River of Firefly, my brain and body may be hijacked or broken, but that doesn’t mean I’m helpless.)

Before my diagnosis, I saw my limitations (memory loss, inability to translate, rapidly losing hold on my languages, inability to hold thoughts in my head for more than a few seconds) as crippling my ability to make my dreams come true. How in the world could I write stories like this?  Translation was nigh impossible, no matter what I tried to do.  How in the world could I do martial arts or dance ever again, if my body was destroying all my chances?

After my diagnosis, I realized that now that I knew what to expect, I still had the power to take back control over my life.

  • So what if I’m losing my memories?  That’s why we write things down and reread them.
  • So what if I can’t translate? I’ll edit the first translated draft in English, piece by piece. (I finished editing 17.5k in 7 months)
  • So what if I’ve lost much of my language capabilities in one fell swoop? I still have English, so I’ll use that for all its worth.  Besides, I always wanted to write on the side and be an author, anyway.
  • So what if I can’t read adult books because they’re too hard for me? I’ll read children’s books until I can. (It took me over 6 months before I could read adult books, and then only on a Kindle with large text.)
  • So what if I have horrible insomnia? I’ll listen to audiobooks and pretend like it’s my choice to be awake.
  • So what if I can’t be a professional translator? I’ll write and submit stories instead.
  • So what if I can’t afford to buy my own books? I’ll alpha-read and get free books that way.
  • So what if I can’t dance regularly or for very long any more? I can have impromptu dance parties of my own for a song or two.

And so on, and so on.

In March of 2011, I wrote this on my blog’s About page:

I was recently (Feb. 2011) diagnosed with a chronic illness, leaving me unable to work.

Every once in a while, life throws us curve-balls or takes us to crossroads and asks us to make a choice.  When I broke my foot at 16, I chose to give up ballet in exchange for the time to heal and to focus on school and writing.  My sophomore year of college when I realized I was never going to become fluent enough in Mandarin to be professional without going crazy, I switched to French, my hopeless, penniless passion. Now I stand on another threshold, where life is asking me “What will you do?”

My answer? Give my childhood dreams another shot.  My illness has stripped me of much that I once had–but I can still write, word by word, drop by drop, puddle by puddle….

No more is writing my side-passion, my shadow. Now it is my sole anchor, my focus, my lifeline.

My dreams can come true, because I’m going to make them, no matter how long it takes.


Interdependent

I’ve talked about interdependence now and then on this blog.  Well, “talked” might be a misnomer. I ranted about the subject last year, particularly on how it relates to “strong” female characters.

I was first introduced to the term and the “Dependence < Independence < Interdependence”  scheme by a teaching colleague of mine in Armenia, and it’s stayed with me ever since. Particularly now, being disabled.

At Mayo Clinic’s Fibromyalgia/CFS workshop, they taught us to avoid the “patient/caretaker” relationship.  Being entirely dependent on another person doesn’t really suit anyone well, (not even children, who often feel resentful of the way they are treated by adults). So, at the workshop we were taught to learn our limitations, to learn how to be resourceful and work within them, to keep as much of our self-reliance as possible.

But it’s unrealistic to say I should be completely independent.  There are too many things I can no longer do for myself.

However, the longer I’ve been in this position and the more I’ve thought about it, the more I’ve realized this is the way life should be.

For Americans, the concept of Independence is everything.  We think that being free from others and doing everything ourselves is the highest ideal.  We live in separate houses, with yards that divide us from our neighbors and from our relatives.  We’ve traditionally had isolationist policies, keeping us away from the rest of the world. We rarely think about our ancestors, or those who’ve gone before us.  Making our own choices, doing our own things–is everything. Children leave home at the earliest possible convenience.  Teenagers can’t wait to get a job so they can pay their own way through life. They start driving earlier than most other countries, and they have their own cars.  Female characters claim they “can do everything themselves, and they don’t need no men to fight for them”.  Having a career and a separate life of her own, rather than an interconnected family, is a modern woman’s dream.  And it’s shameful to admit that you can’t solve your own problems by yourself.  You should help other people but you should never need to be helped, yourself.  Asking for help from friends or family or government, going to a therapist, turning to God, these things we think are worse than doing or solving everything yourself.  We prefer individuals to teams: Superman, Spiderman, Batman–vigilantes, lone cowboys.  And when we put teams together, they often have a hard time working together–see The Avengers.

I’m not saying that Independence is bad, but what I am saying is that–I used to think it was everything, the final step in an ideal pathway, but now I see I was wrong.  It is a step, but it is not The End.

One of my new phrases is, “If God wanted us to do things alone, independently, he would have given us each our own planet.”  Okay, that’s a bit facetious, but I think it still makes my point.  There are what, 6? 7 billion people on this planet now?  It’s ridiculous to expect that we should have to do everything by ourselves.

We need to be self-reliant, yes. We need to be able to support our own selves, to love ourselves, have confidence in ourselves, to accomplish many things of our own will and our own strength and to fulfill our own dreams.  But we also need–I’ve found I also need–to be able to rely on others.

I’ve discovered the beauty in seeing others, in watching them make sacrifices and show kindness towards me.  Whether it’s making me a sandwich because that “simple” task is complex and hard for me, or buying me an audiobook, or taking the time to visit or drive me somewhere.  If I stubbornly tried to do everything myself, I would not get to know these people as well as I have, to see their beauty shine.  (Gyeh, now I’m tearing up again, but it means a lot to me).

Most of my new friends have come from people who have stepped out of their way to help me when I needed it. If I had dismissed them, if I had tried to resist and hold on to this “idealized image” of my own independence, I would have missed out on getting to know them, on having new friends.

I am not meant to go through life alone, and neither are you.  Life can be so much richer, if we are strong enough to rely on each other.  To tear down the walls that we erroneously build to protect ourselves, take a risk, and let someone in.


“Vacation”

A week-long vacation on the East Coast for a wedding has worn me out a lot, lot more than I originally expected, so the remaining couple of posts in this CFS series have been delayed. Yeah, I feel like I’m stating the obvious, however I also meant to add that a further delay should be expected as these posts take me quite a while to write. So, my self-appointed awareness “month” will get an extension into August.

I guess that was all an FYI, but it also serves as a reality-check that works with the blog series’ theme.  When I wasn’t helping out with wedding things, I was dead asleep or zoned out on the couch watching Terry Pratchett movies and/or dozing.  I never even opened my laptop. I was just too bone-weary.

I could probably also say here, in the spirit of killing two poor birds with one stone, that August is looking like a month of alpha-reading, finishing this blog series, tackling part 4 of Queen of the Eight Banners, and WorldCON: all of which makes me grin with slow, tired-turtle anticipation. Mmmmmm.

 


Comparisons

Here are some examples of who I was before I became ill and who I am and what I deal with now (for the past two years of being sick).  This isn’t the full list of differences, and it leaves out most of my symptoms, but it’s a start.  Some of these will be familiar, since I’ve talked about them in other posts, but I thought the format of comparisons might be helpful for some to see and understand more clearly.

Mental.

Then…

I arise at 7 AM, go to a full-time university course-load, work 20 hours a week at one job, squeeze in fifteen translation hours per week, plus my homework, plus my novel-writing, and collapse into bed around or just after Midnight.  All mental gymnastics work, multitasking, holding two languages in my head at once, juggling course-loads, deadlines, priorities, and so on.

Now…

I have three hours of non-stop mental work available to me per day.  If I use it all at once, then it takes me days to recover. If I pace myself and spread it out, do one hour of writing in the afternoon, take a long break, then do another hour or two of something else in the evening, then I’m usually fine.  I have to pace myself, take a lot of breaks.  Something like role-play (collaborative storytelling) is slightly different because I don’t share the whole load, and I have time to wait for replies, but I can no longer multitask while I do it.

(And since this is a writing blog,) Then…

Creating new ideas, new characters, new worlds, intricate plots that interconnected and made sense was a breeze. True, there were up days and down days, but —

Now…

Well, nothing comes out of the woodwork anymore.  Creating new characters is exhausting, like giving birth.  Holding whole novel-length plots in your head? Well, let’s just stick to scenes.  Problem-solving is infinitely more problematic than you remember it being when you can barely hold two thoughts in your head together….

Then…

I could drive. I could read in the car.

Now…

Now I can’t. It’s a sea of moving panic. I can’t focus on anything moving around me.  I can’t judge speed or distance very well. I have to fight the inexplicable feeling that oncoming traffic is going to kill us and that I should tell the driver to stop the car NOW.  I have to focus the entire time on just appearing normal, natural, and on watching the people in the car with me or looking above the city-line up into the mountains. There’s nowhere to run and hide.  It makes me nauseous. There’s no way I can manage to read. There’s no way in hell you’re getting me to drive.

Emotional.

Then…

Stressed? Fine, no problem. It’ll pass. You’ll get this done, it’ll be over soon.  Sad? Food and sleep will make everything infinitely better.  Discouraged? You can do it, you can conquer anything, you can do anything. You can endure anything, sheer force of will. Negative thoughts? A brush of your hand, you can clear them away, like cobwebs. You just have to make the effort.  You need little help because you’re a young, headstrong, independent, accomplished woman who is out to conquer the world.

Now…

Everything’s a battle. Take back control of your hijacked body. Fight the constant panic attacks. Everything’s ten times harder because you have to think first before you can do, and oh yeah, your brain is filled with cloudy, murky, mush so good luck on thinking rationally about anything. Progess? Molasses slow, but look for it, it’s there.  Hold fast to it, it’s glimmering like starlight in darkness. You can no longer endure everything off of sheer willpower. Maybe it was a delusion to think you could fix or do anything you wanted just by willing that you could. You’re too exhausted to make that work now, anyway.  Your head slips beneath the water more and more often the longer the day goes on.  But you can’t stop fighting, you can’t stop treading that water, because the moment you do, it’s hell.  And oh yeah, say goodbye to the “independent young woman” ideal, it was never God’s ideal to begin with, or else He would have given us each our own planet to live on.  You need help; it’s time to learn what interdependence means.

Physical.

Then…

I was a dancer, a martial artist, and even when not doing something rigorous, I could be on my feet and walking all day long, (let’s say 8 hours) without wiping myself out.  I could cart all my groceries home by hand on sheer strength and endurance. I lived as a pedestrian in college, in France, and in Armenia. I’ve never owned a car.

Now…

I take 20-30 minute walks every day. If I go longer, I pay for it severely one way or another.  By the time I’m done, I’m dizzy, have vertigo, am out of breath, but at least am feeling accomplished.  If I want to do something like, say, a dance party with my friends, I have to “save up” for it so I can dance in place, then I pay for it severely the next day. Sometimes it’s worth it, sometimes it’s not. Oh yeah, and there’s no way I can carry anything but myself.

Then…

I could get seven hours of sleep and be just fine for my day.

Now…

If I get less than ten, I’m miserable. My body is pretty much shot. I can still cope, but then again, we’re resilient enough to cope with just about anything. Yay?

Social.

Then…

I could maneuver crowds, scan faces, search out who was lonely and needed help, go and sit with them. I could read body language better. I could talk at a regular pace, think before I spoke, guess at what someone’s reactions might be if I worded something in a particular way.  I could control my maturity level, silly or serious, depending on my read of what  a situation called for.  I’m an introvert, so social situations have always been draining to me, but then it was at a manageable level.

Now…

I’m doing well if I can manage to say what I mean.  Everyone now speaks faster than I am able to compute. If I manage to sneak words in to someone else’s conversation, they are almost always off-the-wall, off-the-cuff, thoughtless, and borderline silly because there’s no time for me to stop and think about what to say, and my head’s so murky that’d be near impossible anyway. When I say silly, think “twelve year old”.  I’ve lost ten years of maturity in social situations.  Yes, I feel exactly like how I coped with social situations when I was 16 years old, minus the murky brain of tangled thoughts that I have now.   To cope, I try to stick to asking people questions and keeping other people talking. Questions are easier than explanations or answers. About the only things I can say well are things I’ve said before, things I’ve practiced saying.  I can’t scan a crowd; the faces blur and I panic.  Crowds moving around me make me want to run, flee the scene.  The longer I am in a social situation, the more drained I become.  I can’t think rationally.  I can’t figure out if what I said was wrong or right or even how to feel about it.

If I want to survive something, say, WorldCon where there are thousands of people and things everywhere, the best I can do is take a guide, a companion. Someone to protect me, lead me about, make my rational decisions for me, someone I can hide behind. They handle everything else, while I handle myself. Otherwise? I’m cooked.  Yes, this includes something like a public campus, library, or Church.

.

And finally,

Then…

Being drained means tired, wanting to take a nap or go to bed early.

Wearing myself out means that I’ll be able to sleep easily once I get to bed.  Sleeplessness means I didn’t get enough exercise during the day or I have other things to think about.

Now…

The more drained I become, the farther downward I spiral inside myself.  Spiraling, spiraling, until I’m trapped inside my own head and I can’t come out, I can’t speak, I can’t compute.

Wearing myself out has no correlation to how well I can get to sleep at night.  I can be utterly spent, exhausted, but my body doesn’t cross the sleep-threshold.  Exercise or thoughts in my head no longer matter. It’s like my body’s simply forgotten how to press that button or flip the switch.


Money

There are two topics that seem to be commonly taboo throughout various cultures: bodily fluids–and money.  Since I’ve already broken one taboo, I thought I might as well break the other.  Being disabled naturally has financial consequences, and so this blog series would be incomplete unless I did a post about this, as well.

My situation is also slightly unusual because I was a volunteer in a foreign country when I got sick, so when I returned home and went through doctors and tests I was 24 and already jobless.  Being frugal, I still had a little bit of money in my accounts, but not much.  Luckily, I have a good family, and so I was able to live with my parents and be under their insurance.

Still, the only spending money I had for about 7 months came from Christmas and Birthday gifts, and however I managed to parcel that out for dire emergencies, it still wasn’t much to go on.  I went from being financially independent for the vast majority of my needs to being completely dependent on others–others who had financial struggles and worries of their own.  Now, don’t misunderstand me.  My parents are willing to help out, but they’re not exactly rolling in dough, and I know my medical expenses were quite a concern for a while–luckily insurance paid for most of it.

Hmm. But how to explain.

Okay, story time. Hopefully this will demonstrate it.

So, one very long night, I was in bed, trying to sleep. The seconds were ticking by, the darkness–there’s no other word for it–was closing in.  With every first second that went by, I fought it. With every second second that followed, I’d lose my grip, I’d forget what I was doing, what unnatural fears, thoughts, what memories I was supposed to be fighting.   By the third, fourth, I’d have to try to fight it again.  I couldn’t relax, I couldn’t even remember I was supposed to be relaxing.  Minutes would pass, and eventually I would realize what was going on: the pattern. But recognizing it was happening wouldn’t save me, the cycle would just repeat, on and on and on.

I remember one thought that pricked me, told me to get up, gave me a way to fix it.  I got up, I went to my desk, turned on my laptop, went online searching for audiobooks.  I downloaded one that looked likely to be good, plugged it in, went back to bed to listen, and from there–the struggle, the battle eased.

I no longer had to fight to remember what I was supposed to be feeling or thinking about or not thinking about. I just listened to the soothing, calm voice coming into my ears.  I no longer had to fight the memories, the darkness. It was just about the story, the characters. Not me.  My battles no longer mattered.  They no longer had to be fought.

Gyeh, tearing up again. The above isn’t poetic because I’m trying to be melodramatic. It’s just–the only way I know how to describe it, what happens.

But the only way that help was possible–a late night emergency purchase–is if I had money, if I had access to money on my own debit or credit cards.  And since my money was dwindling, I had to do everything in my power to scrimp and save it.

Money is freedom.  Money doesn’t buy happiness, but without money, your options for living are severely limited.

As my money was slowly disappearing, I didn’t know what to do. Several people suggested I go on disability. But though I couldn’t work (not for lack of testing myself, for trying), I wasn’t sure if that was the right thing to do.   I honestly didn’t know if my situation merited it or if I even deserved it.  The one person I knew on disability is someone who must support herself almost entirely by herself.

When my therapist suggested it, I expressed my concerns.  She reassured me that disability is meant to help people, to give them back a measure of independence and self-reliance.   It’s meant to return freedom, and to help people who are struggling to take better care of themselves.  She said it would help me a lot, and take a lot of the stress off my shoulders–and give me back much of what I’d lost, in being so wholly dependent.

She was right. I made my decision, and I applied for disability.  I got it almost immediately, with barely any fuss.  (I will reassure you, if you’re concerned about how much the gov’t pays, yadda yadda, that it’s calculated to suit my situation, so I receive a lot less than others who need more do.)   When I reported back to her–and when I told others who are involved in the disability process–they were highly surprised. Most of the time, money is awarded only at the end of a long legal battle, apparently.   I think there are several reasons why mine was awarded so easily. I won’t go into all of them, but one of them is probably because of all the evidence I tried to provide them that I was trying really hard to prove to myself that I could work–and each time I tried, I failed.  Also, there are many basic parts of life that I just can’t do due to my illness, such as cook for myself or drive.  Whatever the reason, I started getting disability in June 2011, almost a full year after I got sick.

I wish I could end the post here, but I can’t.  I will say that I used my new financial freedom for very practical things: paying back a loan, new clothes since all of mine were severely worn out or impractical, audiobooks to keep me sane at night, a ticket to WorldCon to help further my dreams, and so on.

Then in January of this year, I turned 26.  According to the law, I could no longer be on my parents’ insurance. This meant that suddenly–I had none.  When I applied to get insurance of my own, I was denied, due to my “preexisting conditions”.  In other words? Bluntly, I was punished financially for being sick, though Chronic Fatigue Syndrome has no heavy medical bills besides the diagnosis.

Lacking other options no matter how hard I looked for them, with my mother’s help I got on COBRA. If you don’t know what that is, it’s a sort of fail-safe insurance for people who can’t get any, and it’s highly expensive. How expensive? Well, I receive $465 a month. My COBRA premium I had to pay was $450 a month.  (Yep, there’s the taboo. I just told you my income and expenses.)

Suddenly, I was broke again. For the six months I was on COBRA while I was searching for alternatives, it was awful.  I hate being broke. I don’t mind being poor, but I hate being broke.   I kept looking for a way out, but I couldn’t find any.  It was like being in a cage, where the bars are slowly sliding inward as my savings diminished or as I had to ask my parents to cover this or that month for me when they have financial worries of their own.

I won’t go into the reasons why it took so long to reach this point, but–then my therapist suggested I go on medicaid.  (Actually, she suggested medicare, but I don’t qualify for it.)   The problem with medicaid is that it doesn’t cover as much and fewer places accept it, since it’s the gov’t dictating how things should go.  I weighed my options…and I applied to switch.   I would much rather be on an insurance that isn’t always helpful than have to worry about the $2000+ for six months of insurance I’m not going to need to use.  I would rather have money.  I wanted my freedom back.

So this month is the first month in the last six months that I can breathe again, financially.  I’m still dirt poor, but frankly I don’t care.  True, I live with my grandparents, and true I could probably get whatever I need or ask for from them, but whatever I ask cuts into their financial future which grandma is carefully saving for. Someday soon my grandpa will have to be in a special care facility. He has dementia and we’re not always going to be able to take care of him. And you know what? Full-time medical care and attention is really, really expensive.

I’m not really sure what the goals of this post are, except awareness.  There are many people out there who are not as lucky as I am.  I have people who can take care of me, fix me meals, and give me a quiet place to sleep.  I have money to keep me sane and prepared, and I have insurance now in case something goes wrong.  I have my freedom, but not everyone does.


Writing Days

One of the main reasons I keep track of how many hours and words I do per month is to reassure myself that I really do deserve to be on disability.  (I’m not actually measuring “progress”, because real progress comes in story and development). I know, that sounds crazy, but when a vast majority of people around you believe that sick people on disability are lazy and/or draining the gov’t’s money for no reason, then you have to reassure yourself that you’re not like that.  You have to prove that you actually can’t work, be hired, or make a living on your own.

I generally don’t have a problem with being disciplined, getting stuff done, and so on.  My procrastination demon is a little, minor-nuisance guy.  So when my productivity is low, it’s low for a different reason.

For an example, let’s look at the numbers for May and June.

In May, I worked on Queen of the Eight Banners 11/31 days.  This means that on the other 20 days I was either feeling too poorly to write or I had to use my main source of energy to do something else instead.  I worked on Andromeda 9/31 days.  Some of these days overlapped with Queen, some did not.  I generally write in the afternoons and work on Andromeda in the late evenings, after I’ve had some time to recuperate.  I clocked 7.5 hours (over 11 days) on Queen, and most of that was plotting and meta-work because only 1k got written, but I’m not worried about that because there were some very difficult scenes to figure out.

In June, I worked on Queen 11/30 days again, and I clocked in 10 hours.  I’d managed to figure out how things should go in May, because I spent most of my time in June writing, and I got 5k in.  Unfortunately for Andromeda, I only managed to work on it 3/30 days, which is more disappointing but I’m also doing a much harder task for me now–bilingual edits.

July? Well, the only thing I’ve managed to do in July is this blog.  My family was here on vacation the first week–which took a lot out of me–and this second week I’ve been helping friends prepare for a novel-workshop and critique.  The third week I have free, but I have some library books to finish and some alpha-reading to do which I’m behind on, then the fourth week I’m gone to attend a family wedding.

This is all compared to what my productivity used to look like, which was – I originally translated Andromeda in two months.  It’s taking me years to do what I used to be able to do in months.  I used to be able to write 2k a week on my novel while going to school full time and having two jobs.  Now I’m lucky if I get 2k done in a month.

So you see, Mr. Disability-skeptic? I legitimately need help.  I wrote a short story in an hour and a half once in March and threw up directly after and spent the rest of the day in bed, because I just wanted to get it done no matter what it did to me.

But yes, clocking in time, keeping track of days, words, these things help me breathe easier.  They also help me look back and smile: I won’t let this get me down.  My dreams will come true.


Limitations are real

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 realTo 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.

  1. 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.
  2. 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.
  3. 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.

Facing limitations.

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.