Depleted - redux

I want to expand on a thought I expressed in an earlier post, "Depleted."  I wrote of feeling as though I need to be perfect, but I don't know that I fleshed out completely what I mean. I wrote:

If I could be perfect--perfectly organized, perfectly disciplined, I would feel better and be able to do so much more. But I'm far from perfect, and getting there requires that I overcome what the perfection would solve--in order to acquire my panacea, I must solve all the problems it will fix. 

I am almost never sick in the traditional sense. (I feel a winter of plague about to descend upon me... ;-)) What happens to me is that I get worn down--exhausted in epic proportions, I feel crumpled, depleted to the core, emotionally fragile, mentally compromised, functionally deficient. (This article from BMC Musculoskeletal Disorders gives a good picture of exhaustion in fibromyalgia.) What I need is a "reset" day. I need to sleep 10-11 hours and just do nothing--hang about in my jammies, let my brain sink to the back of my skull, relax, not stress, and recharge.

In my head, I can do the math:  1 reset day > 7-10 half-functional, crappy days where I'm grouchy, mean, stressed, want to cry, in pain, and functionally worthless. This does not, however, seem to make it any easier to take this time. Even with a reasonably supportive work environment, I feel guilty if I call off and I'm not hugging my toilet bowl or incapable of standing up for more than 10 minutes. But why? Why, despite knowing that I just need the day to replenish my energy supply, is it so dang hard to give myself permission to do it? Why does it kick up so much guilt, shame, anger...??

Because I'm not perfect, and in my damaged little head--I should be. If I were perfect, if I could manage this condition perfectly (and on my own, of course), and I wouldn't have this problem. I wouldn't collapse anymore, I'd be somehow almost cured, and able to pretend like this doesn't exist. If I could manage my sleep and exercise and diet and stress and workload perfectly, I would be fine. I would be able to crawl into my protective shell of denial and you all would never know that anything was wrong, right? Then, if for some inexplicable reason, I had a bad day, I'd be able to take the day off because it wouldn't be my fault.

That, there, is the real twisted little crux of this problem.

Somehow, I've decided that, unless I do EVERYTHING 100% perfectly, my suffering is my fault, and, as such, I do not deserve any sort of break. Which is really screwed up. How many diabetics or people with heart conditions take lousy care of themselves? Yet we somehow still do not blame them for their conditions (even if we admonish them to not eat that Primanti's sandwich and box of donuts and to get some exercise), or for the corresponding issues they suffer from not caring for themselves. I don't completely ignore what I am supposed to do, I am trying to figure out what works. I do try to take care of myself--my problem is that doing so is one. more. thing. that I have to do. One. More. Thing. to add to everything else. More time, more energy--that I don't goddamn well have.

It requires giving things up--I can't give up the job that feeds me and gives me money to spend on caring for myself. I can't, at the moment, give up school which I hope to be the ticket to a career I find meaningful. I could drag that process out, making it suck even longer, or give up and resign myself to spending 40 hours a week doing something I dislike. So what then? Give up the things that make my life feel meaningful? The things that keep me from going crazy? Give up caring for my friends and spending time with them? Or, you know, if I could just be more efficient at everything--cut out all the slack, all the time wasted on account of being too mentally or physically tired to do anything actually productive (solve the problem for which perfection is the panacea...)--I could get everything done. If everyday was scheduled and regulated, meals planned, time blocked off for everything that needs to be done--work, school, exercise, PT, mediation, assignments, community service, 8 hours of sleep--and executed with no deviation--if I could be perfect, I could make it all work.

Unfortunately, I left my cape and "S" on the bus, I think.

Mind you, I know darn well that a) perfection is not possible, and b) that there is no proof that, even if I were able to discern what it is that I need to function and could give it to myself, I would not still have bad days or struggle in spite of it all.

I have a hard time reconciling what I know with what I do. Being of a cerebral nature, I feel like there should be an automatic connection between knowledge and action--that is, the simple act of possessing knowledge should spontaneously result in the corresponding right action. We all know, however, that to create new habits, we have to practice things. We can study skiing for a year, but until we put the sticks on our feet (well, you crazy people can--I know enough to know that I'm not doing it... ;) ) and hurtle ourselves down a hillside, you don't know how to ski. I have a lot of information, but weaving it into the fabric of my life is a lot more complicated than reading a book or a journal article. Regardless, it is this failure to do so for which I hold myself accountable to an inappropriate degree.

I'm not entirely sure how to fix this, so I've taken an approach that I find to be fairly effective, if a bit inelegant. Even when it cuts against my inclination, even when I know that I haven't worked it all out, even when I know that it will throw me off balance and make me uncomfortable--I just stop. The anecdote to a brain filled with crap is action. I work with my body in yoga, and it helps to heal my heart and my mind. So it is also with this--and I do it OH SO very imperfectly, but my plan, my hope, is that with repeated action will come habituation. If I just say "$#%& it" and give myself a break, despite what "people will think," despite whatever narrative I have running inside my skull, perhaps I'll get better at it, more graceful, more at ease in my own skin. And, perhaps, if I cut myself some slack it will become easier to deal with the lead-filled bones inside that skin, and that will ease the tension in my chest, which will make my heart softer and my thoughts more calm.

So often, to get what we want we have to act counter-intuitively. If you want abundance, practice generosity. If you are angry, practice forgiveness and patience. If you want to act with more ease and grace, do what knocks you off balance and makes you struggle. If you want to be perfect, be imperfect and at some point, new habits will form and (it is my hope anyway) perfection will no longer be (perceived as) necessary.

Depleted.

I know I'm different from the average bear, but sometimes it's hard to tell in what ways and to what extent. I've never fallen asleep quickly. For example, I gave up napping at 7 months.  I remember staying awake pretty much the entire night as a kindergartener, just me and the stories in my head. I can recall going to sleepovers and being annoyed because everyone would just fall asleep. At some point in my life, I learned that most people in the world fall asleep within 10-15 minutes of going to bed. My jaw dropped. Totally unbelievable. It had never occurred to me that such a thing was a possibility, let alone a norm.

So when I say I know I'm different, I don't just mean in that meaningless, bland way that we're all 'special' and 'unique.' I mean that my body and brain do some strange things that other people's bodies don't (apparently) do. And when I say that I don't always understand how that works, I mean in that way that if you only have one point of reference, it is nearly impossible to realize that there are other perspectives, let alone imagine what they might be like--you are blind to your blindspots.

I'm always tired. I'm always in pain. The extent of either varies from day to day, hour to hour. My desire always overreaches my capacity, and I push and collapse, push and collapse.  If I could be perfect--perfectly organized, perfectly disciplined, I would feel better and be able to do so much more. But I'm far from perfect, and getting there requires that I overcome what the perfection would solve--in order to acquire my panacea, I must solve all the problems it will fix. If I didn't feel like my bones were filled with lead or like I had just been beaten with a rubber mallet and my muscles were covered in mini vice grips, hey I could probably get more sleep and not skip the gym and have more stamina and be able to plan meals, study productively, and stick to a rigorous schedule that allowed me to both accomplish my obligations and enjoy my leisure time, rather than feeling like I'm in an endless loop of ripping off Peter to pay Paul. I seethe with frustration and self-hatred, neither of which reduces my pain, improves my sleep, nor helps me achieve anything. For all my loathing and misery, I'm no thinner, more organized, nor more compassionate; my house isn't cleaner, and no items get checked off of my to-do list. Then I hate myself for not being able to lay down the hate, anger, and frustration, and isolate myself from people because I believe they'll be as appalled as I am should they peer inside. But it is people that I need.

My life feels empty. People advise that you should be happy alone, blah blah blah. It's not as though I don't have friends, because I do, however, actually seeing them with any regularity is another story. It used to be, back in the day, people just hung out.  There were always people at my house, I had friends at work and at school.  There was a tribe of us who loosely hung together, not always all at once, but some of us were always together. Now it takes a lot of effort and scheduling. Everyone (including me) is consumed with their own lives--work, school, kids, houses, hobbies, whatever it may be, so it is just much harder to make things happen, to have those regular interactions that allow relationships to deepen. I do like to be alone. I am, most definitely, a woman who likes her solitude. I like quiet. I like sitting alone in the woods, breathing cool, sweet air, with none but the birds and squirrels for company. I have never felt lonely in the forest. And I do plenty of things alone because otherwise I would just sit in my house for eternity. I go to movies alone, I go take pictures alone, I go to yoga class alone, I go for walks alone, I go to Phipps, museums, events, lectures, and drink tea alone. I even enjoy much of what I do by myself, even if I would prefer to share the experience with someone else.

But everything has its limits, and we are social creatures, pack animals, by nature. If a baby is given all its physical needs, but no affection and attention, it will die. People can, in fact, die of a broken heart. Sometimes I feel mute, as though I'm trapped behind bulletproof glass--my words hit and lodge in the wall, never making it out. I try to explain what things are like for me, but at times it feels like I'm speaking a dead language. Sometimes I feel like there is a rotting wound in the middle of my chest, emptiness gnawing through flesh. Almost every day, I wake up and wish I didn't, wish that I never would. Everything just gets so exhausting. My world becomes so heavy. Every movement, every word, every action. Every. Thing. My relationships with others suffer because I lack the energy to "rise to the occasion," because I forget to lie when I'm asked how I am.

I'm out of gas. I run on fumes. I try to pretend like I'm not different. I try to pretend that everything works just fine. I try to pretend that, if I just act like it's true, it will be. That my legs won't give and that I'll be able to run the race, that I can win. But there is no race, no winning.

Just an endless trudge up the hill, pushing a rock.

National Chronic Invisible Illness Awareness Week

Some of you know that I was diagnosed with fibromyalgia in 2007. Few of you, or anyone else for that matter, including me, really know what that means.  I know what it means to live with fibromyalgia.  I've read articles, books, and medical journal pieces about it, but there is no clear, definitive answer as to why this family of symptoms seem to hang out together.  No one fibro case is exactly like another.  The medical community is even considering changing the diagnostic criteria (specifically the 11 pairs of "tender points") because they're not as definitive a marker as they are oft made out to be.

For an introduction to the syndrome, see the National Fibromyalgia Association's webpage.While I would never downplay the utterly devastating effect that chronic lack of sleep and exhaustion and pain have on my life, one of the worst things about having an invisible condition, let alone a very poorly misunderstood one, is that if I want people to understand what I'm experiencing, I have to tell them, lay it all out. And that can be annoying and frustrating in itself--I'm tired, I feel like I've been beaten with a mallet and someone filled my bones with liquid lead and my brain with fog. The last thing I want to do is to try to explain that to someone at the time. If I don't, however, I'm viewed as inexplicably "grouchy," "negative," "unhappy," "insert your favorite unpropitious adjective here."

I just want to be "normal" (whatever that means)--I want to be able to have full, filling, days, come home at night, take care of what I need to do at home, go to bed and blissfully slip into sleep. I would like it to not take 20 times more energy to deal with basic interactions because I'm fighting the desire to just put my head down on my desk and sleep, or trying to ignore the sharp pains and dull aches in my arms, hips, shoulders, neck, back, legs... I would like living to take less effort so that I could have more patience with others.  As it is, I'm so frustrated with myself, that extending patience to others becomes doubly difficult. I realize that that still makes me suck as a human being--that's why its on the list of things that I would like to change. I also know that there is no miracle cure, that drugs have limited application, and that I have to be committed to maintaining a lifestyle that allows me to function at the highest level I can, which, as anyone who has tried to make any positive lifestyle changes knows, is much easier said than done, especially when you are lonely, ambitious, and have a wide-range of interests.

I also don't much like talking about living with fibromyalgia because I know that a) I sound like a whiner, and b) even if I don't, people don't much like hearing endless negative crap. Yet, this goes back to the beginning of this post--I have to talk about it if I want the people in my life to understand me...and to be able to help me.  I don't just mean in the sense of helping me do tasks that need to get done, but to support me with the lifestyle  I have to maintain (exercise, meditation, relaxation, sleep, healthy eating) and help me sort out all the crap in my head and heart that hurts. If I want them to understand that I'm not just a miserable, angry, negative person, but that I'm miserable, angry, and negative for a reason. I don't want to be pitied, and I certainly don't want my anger and negativity validated--they don't serve me and they don't help me serve others. I need to lay them down, but part of getting to that place is feeling heard, connected, understood; feeling like I can ask for and receive help without feeling like a burden or useless or ashamed.

To that end, I'm posting this as part of National Chronic Invisible Awareness Week.  I've also included their meme:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: fibromyalgia
2. I was diagnosed with it in the year: 2007
3. But I've had symptoms since: the mid-1980s.
4. The biggest adjustment I’ve had to make is: trying to pace myself to avoid sprints and crashes. Asking for help.
5. Most people assume: that I'm young and in great health and/or that I'm "just" a grouchy person.
6. The hardest part about mornings are: getting up at all. Fighting through the exhaustion and stiffness.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: iPhone
9. The hardest part about nights is: getting to sleep, especially when I can't get comfortable either from pain or hypersensitivity.
10. Each day I take 1 pill & vitamins. (No comments, please) <-- Too bad. I currently take no medication for fibromyalgia. I recently weaned off the two I was taking because I wanted to see where my body is on its own and determine if non-pharmacological treatments could improve my situation as, if not more, effectively.
11. Regarding alternative treatments I: am pursuing chiropractic, massage, meditation, and therapy.
12. If I had to choose between an invisible illness or visible: I would choose: visible, and better understood.
13. Regarding working and career: It is a daily struggle to function, focus, and be productive. I could do so much more if I were well-rested and not in pain.
14. People would be surprised to know: how truly miserable I really am, and how hard it is for me to function.
15. The hardest thing to accept about my new reality has been: the isolation, the loneliness, and the mounting despair.
16. Something I never thought I could do with my illness that I did was: go to grad school and work full-time and maintain my 4.0.
17. The commercials about my illness:  make me want to punch things. Instead, I mute them.
18. Something I really miss doing since I was diagnosed is: I've been living with pain and exhaustion for so long that the diagnosis didn't really change anything.
19. It was really hard to have to give up:  It is hard to say no to things I want to do. It is hard for me to accept not being able to do things, so I push too hard and then fail.
20. A new hobby I have taken up since my diagnosis is: biking.
21. If I could have one day of feeling normal again I would: Heh - I do have good days, but one day doesn't really help much overall. In fact, they're almost depressing because I realize that a) if I act on the energy I feel, I'll have a flare, and b) what I could do if I could sustain that level of energy.
22. My illness has taught me:  This should read "...is teaching me," because I definitely have not completed my lesson. My illness is teaching me patience, compassion, and to ask for help.
23. Want to know a secret? One thing people say that gets under my skin is:  "You're too young to know about pain." Yeah, jagoff, only old people know what it feels like to feel like you've been hit all over with a mallet and someone filled your bones with lead and your brain with fog... How could I possibly know anything about pain?
24. But I love it when people:  Just help without me having to ask, making a production about it, or asking how I'm doing. When people neither treat me like an invalid, nor as though I'm "well." When they just understand that I always hurt and I'm usually exhausted, and a little help getting through the day is nice.
25. My favorite motto, scripture, quote that gets me through tough times is: "When you find yourself going through hell, keep going." -- Winston Churchill.  "Be not afraid of growing slowly. Be only afraid of standing still." --Chinese proverb
26. When someone is diagnosed I’d like to tell them: Take care of yourself, even when it's hard and exhausting. If you don't make it your #1 priority, you will not achieve anything.
27. Something that has surprised me about living with an illness is: how having a name for it doesn't make it any less frustrating at all because fibromyalgia is so poorly understood--even by the medical professionals who specialize in it.
28. The nicest thing someone did for me when I wasn’t feeling well was: give me a hug and clean some of my house for me so I wouldn't be annoyed by the dirt and doubly angry because I was too tired and frazzled to take care of it.
29. I’m involved with Invisible Illness Week because: I get tired of feeling alone and misunderstood.
30. The fact that you read this list makes me feel: like someone is paying attention.

More from the archives: talking too much; rumpelstiltskin.

Interesting to come across this again. So much still rings so true, and sorting it out continues to be a struggle...

At times, one of the most difficult things about living with a poorly understood illness like fibromyalgia (FM) is figuring out how to be sick in a healthy world. In her book You Are Not Your Illness, Linda Noble Topf explains how illness has a way of exaggerating our sense of "being different from others, of being special or unworthy, and of ultimately being separate and alone." Nevertheless, the experience of feeling connected to others is vital to both our physical and mental well-being. 
 
The sense of isolation people with FM may feel is exacerbated by the fact that our illness is invisible. As FM sufferers, most of us have probably heard the phrase, "But you don't look sick!" more times than we can count. Even when intended as a compliment, this simple statement can touch off a cascade of emotions: anger, confusion, shame, and self-doubt. It seems that no matter how long we've lived with FM, innocent comments like this from friends and strangers alike have the potential to touch a wound that at times feels surprisingly raw. 

Often the question people with FM most dread hearing from a friend or acquaintance is "How are you?" This seemingly innocuous ritual of polite conversation can be fraught with complexity and emotion for FM sufferers. We may long for the days when we could reply, "Fine thanks," without a second thought; but when overwhelming pain, fatigue, or other symptoms render us vulnerable and disheartened, this simple response may feel like a lie.

  [...]

We might find ourselves trying to justify our activity restrictions or insisting on the severity of our symptoms—after which we may feel guilt or anxiety about being seen as "complainers." Desperately wishing we weren't sick, yet wanting clear signs of illness to validate our experience, we're left with a sense of confusion and self-doubt. It can be difficult to know how to act because we're caught between contradictory wishes: wanting to appear normal and wanting to be understood.

 [...]

Many of us have always prided ourselves on being self-sufficient achievers. With the onset of FM, we may have to rely on others in new ways; it can be difficult to acknowledge these needs to ourselves, let alone communicate them to others. We may feel deficient, embarrassed, or frightened; perhaps we're afraid others will be resentful of our neediness or that they cannot understand.

I'm not adjusting to my "new normal" with much grace and aplomb.  I fight--mean and nasty, yet knowing that, ultimately, I'm the one who will lose. I don't want to talk about it, but I want you to understand.  And the friction from that Catch-22 is a constant source of irritation.

Yet, still I rise. If all those who have ever accused me of being whiny, miserable, or negative knew how much optimism is required for me to get out of bed every day, maybe they'd be the ones shutting up.

(Originally posted on myspace Tuesday, May 01, 2007)
talking too much.
Current mood:  tired
Category: Life

"You looking good," said Sethe.
"Devil's confusion. He lets me look good  long as I feel bad," said Paul D.
---From Beloved by Toni Morrison

Fibromyalgia & Friendship by Lisa Lorden Myers

This article talks a little about the difficulties of dealing with invisible illnesses and other people. I've been talking about what it's like to live in my body lately because of getting the diagnosis, reading more, trying to figure out what this thing is, what it is tied to (apparently everything) and trying to make sense of my experience. Not to mention the fact that I've been in a lot of pain.

I've suffered a long time, with no explanation. After 25 years, someone named my torment. No, I haven't talked about it much--what was the point? I just look like a cranky whiner anyway. I'm "negative," "irritable," "flaky," whatever the adjective du jour is...

So, I'll shut up again in short order, because people don't want to be bombarded with "bad news," even if that is the daily paper of your life.

(Originally posted on myspace on Thursday, April 19, 2007)
rumpelstiltskin.
Current mood:  tired
Category: Life

Like the queen seeking to save her young child, I have scoured the countryside trying to find the name of my tormentor. One week ago a man gave name to the pain I have lived with for over 25 years. Unlike the queen, I was not delighted to discover the appellation of that which has eluded me for so long. A first, I found myself descending into despair, as though I was being sucked through a whirlpool. I told myself that this feeling made no sense—this name changes nothing—if anything, it offers hope.

I shake, but the tendrils of despair cling to me.

I cannot accurately describe my emotional state—nothing quite hits it spot on. I want to know everything. I feel stuck in the fog of war. I feel wounded in a different way than I have all of these years. I feel vindicated, but with no sense of victory. I feel weary, and as though I am at the base of a mountain that must be scaled. I feel at once alone and as though I want no company.

I keep telling myself that in a name there is hope, but I have yet to feel that hope in my soul.

One worth saving -- The depths.

Originally posted on myspace on Monday, October 08, 2007  

The depths.
Current mood:  contemplative
Category: Life

My body has always been a very instructive tool. It will tell me things I will not tell myself--plunge me into places I do not wish to tread.  No therapist could ever hope to be half as effective. Today, as I lay on the mat in physical therapy, my body slowly being crushed by the frigid air conditioning to the point that I wanted to both throw up and cry--I went there. To that place behind the hard spot. I was forced to sit in the soft space beneath my carapace, feeling all the emotions that came from that moment of helplessness and despair.

I don't let anyone into this space. There are a few people with whom I can be when I'm here. They never try to get in. They just let me be. Sit with me until I can come back. Their quiet presence makes me feel safe, like I won't get lost. Some of them don't even know that is what they are doing.

The body knows everything, stores everything. The brain is good at disconnecting from the body, ignoring it's pleas for attention, pushing it to perform in ways sometimes good, sometimes damaging. All of the emotions we experience do not just shoot through our hearts and souls--they shoot through our muscles and bones. Especially the ones that do not make it to, or that are rejected by, the brain.

Whenever we mindfully and consciously delve into the body, whether to repair it, tone it, build it, master it, we find ourselves faced with everything we've stored in there. The less mindfully you've been living otherwise, the more shocked you may be.

It sometimes feels like I can't get through that hard spot inside me; my body reminds me I can, however, get underneath it.

ahimsa.

ahimsa

Indeed, violence starts at home—in the soul, where we cut ourselves most deeply. This is where we must begin if we are to find peace.

I am the most violent with myself, the most unforgiving. I dislike criticism, not because I cannot accept that I have done something poorly, but rather because I already KNOW that I did, and, frankly, I’ve probably excoriated myself much more thoroughly than anyone else can.

ahimsa
the principle of non-violence.

It begins with the self.

It begins with accepting where you really are, not who or what or where you want to be, but where you really, truly are.

It begins with being gentle with yourself and forgiving yourself for being where you are. You didn’t begin by jumping into a race, but rather with a few tentative steps as you learned to keep your balance and walk.

I live in a broken body; a body that limits both my physical and mental movement, so it is probably of little surprise that my spiritual practice also begins in my body.

I have been doing yoga for several years now, and I have learned how to stand, to walk, to let go and find strength. I’ve learned to find grace, balance, beauty, and relief. I have learned to begin—in my bones, in my muscles, in my exhaustion…and accept my body where it is, even if only for an hour at a time.

I have learned to forgive it for being there—for being in insufferable knots, for being stiff and heavy, for the exhaustion that feels like it goes into the marrow of my bones.

...and then to find compassion for myself.

The world is often a hostile place—so many things hurt or make the hurt worse. And my suffering is invisible.

So young! So healthy! What do you know about pain!?

…I know that I’d like to take the next person who says that to me and put his/her head through a wall--

but....
ahimsa

The principle of non-violence begins at home—in the soul…with acceptance of the truth of reality, with letting go of the harbored anger, and with compassionate movement toward something better.

My teeth still grind between my clenched jaw with anger that my life is work and trying to survive work.

Hatred and depression arise when I am filled with certainty that no one will want to spend her life with someone as broken and lame as I.

Hatred that I have no discipline.

Hatred of the slowness.

Acceptance
of
reality.

ahimsa

“Be not afraid of growing slowly, be only afraid of standing still.” (Chinese proverb)

Easier said than done.

Two hours of yoga and stretching only to be able to stiffly shuffle about, and I still feel like there is a golden eagle riding on my shoulders. It’s hard to not get depressed and resentful. It’s hard to come home and have to do it all alone (except for the kitty, who certainly helps my cause a-plenty).

ahimsa

The gentle returning of oneself home to oneself.

-|08/25/2007|-