Sunday, December 20, 2015

It's just one of those things.

So I've mentioned here before that I have fibromyalgia, and I want to write a little about the really confusing experience of having a chronic, invisible illness. It's gonna be a really long one, so bear with me.

I think I've had this condition for about 8-10 years.  I've had a diagnosis for less than one.  I say I think I've had it, because there was that whole maybe-decade of not knowing that the way I was feeling wasn't just normal.  It's hard to look back and think, "was that when it started?"  I've always said I felt like as soon as I left high school my brain started turning to mush, I just felt dumber on a daily basis.  Is that the so-called "fibro fog," or just what happens when your brain stops developing like a teen and you hit adulthood?  I might never know.  How about when everyone at my first retail job thought the massage chairs were heaven and I thought they were torture machines?  Is that a "tender points" thing?  Hard to say.

Realizations came in bits and pieces over the years, that what I figured was part of the normal adult experience was actually... not.  When you're with other late-teens and early-20somethings in a perpetually sleep-deprived college environment, nobody's a morning person.  Everybody's always tired.  It's hardly remarkable.  And because my lifestyle wasn't very physically taxing back then, I didn't have to contend with my limitations the same way I do now.  Sure, we lived in the city, and when we decided to trek all the way across town on foot to the Terminal Market I had to grit my teeth and steel myself for it, because I hated being the one who always wanted to take the bus when it was technically walkable.  And I'd be aching from head to toe and wiped out for the rest of the day afterwards, but hey - walking a lot of blocks is tiring, so that's not so odd, is it?

I do remember it was in my senior year of college that I learned from my housemates that it wasn't normal for my feet to hurt whenever I was standing.  That was a tidbit I filed away under "well my feet are kind of flat, so."

In the real adult world, things started getting tougher.  Fibro manifests differently depending on what you're doing with your body; whether it's too much, too little, or just right.  If I could be independently wealthy and free to structure my days around the perfect level of activity to keep my symptoms in check, I would not be on a hellish rollercoaster of medication side effects right now.  But alas, most jobs put you either into the "too little" or "too much" categories.  In retail, it was always too much.  I felt like I'd been hit by a truck at the end of the day, every day.  But I mean, 8-9 hours on your feet, that makes sense, right?

Sitting all day in an office, I had the same kind of aches and pains I get from sleeping too long: terrible hip pain, lower back and abdominal aches.  And I was mortified to find myself falling asleep on the job multiple times.  But the worst was the drive home.  For a while, singing along to music at the top of my lungs was enough to keep me awake at the wheel.  Then I'd be singing with my eyes closed.  I started slapping myself in the face when I was dozing off.  It was only a 25 minute commute, but it was horribly unsafe for me to drive it.  And I was well-rested and caffeinated.  People would suggest going for drinks after work and I'd have to resist looking at them like they had 2 heads.  What was this superpower, doing things after work?  Every time I stopped at the grocery store on the way home to pick up milk it felt like a Herculean feat.

Part of the reason I think these developments didn't strike me as too odd at the time is that I happen to spend most of my time with someone else who has chronic pain and chronic fatigue, though with a different cause.  So when you're a couple of premature 80-year-olds living together, you don't think too much of it.  You collapse at the end of the day and don't go out, you let the house become a total mess until an hour before someone's coming over, you let social engagements slide and sleep til noon or later on the weekends and well, it just means you're lazy and you suck at life, right?  Those are character flaws, not an illness.

That's what I felt like for a long time, and confusingly, it's how I still feel a lot of the time.  Even now, you might be reading this and thinking "Everyone gets tired and sore.  This doesn't sound like a real thing.  She should just suck it up and do the same things everyone else does, that's adulthood."  That is exactly what I thought this entire time.  What I still think, most days.  Even as I got older and the symptoms got worse, when I started waking up in the mornings with so much pain in my hips and abdomen I could hardly move.  When I would find myself at a low-key dinner party with friends, my ideal type of social activity, but I ended up on the floor instead of the couch and was hurting so bad I wanted to go home and cry.  When I started doing really physical work as a baker, the only thing I've ever both loved doing and been paid for, and realized that I had no idea how easy I had it before.

I've always, since childhood, had a bit of a "delicate constitution," because for my entire life I've suffered from debilitating migraines.  I was always one stroke of bad luck or a misplaced glare of sunlight off a shiny surface away from being completely incapacitated, left stranded wherever I was, half-blind, maybe throwing up, rocking back and forth and praying for rescue.  When you're a kid, mom can come pick you up.  When it persists into adulthood, you start to realize that this monster that's plagued you for longer than you can remember, well, other people don't believe in it.  Maybe they get migraines but they're a lot milder (I didn't know a "mild migraine" existed for the longest time, but now I sometimes get them too.)  Maybe they just get regular old headaches but they think they're migraines because they don't know the difference.  And they judge you for bailing when one comes on.  They think you're faking or you're a wimp and not prioritizing your work.  It's the kind of pain that, 6 or 7 hours in, you start to deliriously wonder if you'd rather die or live through another hour of it, but some people are just lucky enough not to know it personally, not to grow up with knowing it's always waiting for you.  And so maybe they judge.  Maybe you call out of work and they think, "sounds convenient."

I used to pass out when I was a kid, too.  That stopped in adulthood because now when I feel it coming on, I sit down even if someone's telling me not to.  Took a couple of hard knocks (of my head on the floor) in my youth for me to learn that lesson.

So.. yeah, you could say I was already sensitive about letting on that I have physical problems.  It's annoying, it's frustrating, it's embarrassing.  I knew that these things were not character flaws, they were tangible and diagnosable and known to be real, but not everyone saw it that way.  Or they did see it that way, but they thought of me differently once they saw me in the middle of a migraine.  Once coworkers saw me stumbling around sick and blind and teary-eyed in public because I didn't know how I was going to get home- that's not always a side of you that you want everyone to be able to see.  I feared I'd be fired if people found out because I couldn't be relied on to show up.  I'm sure it crossed some employers' minds after I had my first attack on the job when I was working in particularly short-staffed fields.  This has led to me attempting to work through really bad migraines, even, I'll admit, as recently as two days ago.  Even though I know it's useless and a horrible idea and so terrible for me.  But I feel responsible to behave as if I don't have these problems, because no one signed on for a sick pastry chef.

So back to the matter at hand, last winter I learned that I have fibromyalgia.  I used to see the commercials for fibro meds on TV in the past few years and joke with my husband, "hey, that sounds like my life!" but I didn't really think I had it.  I was still managing, wasn't I?  Still working full-time, and maybe that was literally the most I could possibly do and every other aspect of my life was being totally neglected or going up in flames but... hey, it's hard being a grown-up, right?  But things started getting worse, and worse, and I started bringing them up from time to time.  I'd be speaking to someone in their 50s or 60s, giving me the "oh, just WAIT til you're my age," speech and tell them "Uh, actually I've felt like that since I was 18?"  Surprisingly, the most common reaction to this is anger.  Many older people get really mad when you tell them you hurt all over all the time and have basically never felt rested.  They don't believe you, but they're also insulted that you even said it.  "You're young, so that's impossible," is a common response I've gotten.

So that started to strike me as weird.  And I started to examine how I actually felt on a daily basis and question if it was, in fact, normal.  Maybe there was something wrong and I didn't really just suck at life?

The experience of working on my feet on a daily basis with fibromyalgia, at one point for as many as 55 hours a week, has a few different aspects to it.  Imagine if you will.  First is the physical fatigue.  This is different than sleepiness - though of course you never feel rested and refreshed, and caffeine is your lifeline, but you can almost dismiss that because it's hard to fall asleep on your feet anyway.  The fatigue is more like an anchor on your back.  And one on each of your legs.  Your whole body is lead, it's just heavy, almost like a limb that's asleep but without the pins and needles (though those happen too but that's another story.)  This is usually ever-present, 24/7.  This is the default state.  This is where you start out in the morning, before you've even lifted a finger.  So then you get in the shower, you get dressed, you get to work.  Do you feel up to it, ever?  No.  Of course not!  But where's the line?  Where do you decide, "today I just can't do it," when you feel like that every day?  Your whole life exists on the other side of "I can't."  So you go, because you have to.  You throw yourself forward without thinking, trying not to feel it, before you have a chance to throw in the towel.

You get in to work, and maybe you get an hour or two, once the soreness from sleeping has worn off, when you feel sort-of okay.  Tired, obviously.  Like a sack of flour.  Heavy and totally devoid of energy.  But you just push on because you have to, and at least it's not hurting too much yet.

Then the hour or two of activity that actually helps a little is up.  You're out of the goldilocks zone.  Now the invisible baseball bat comes around and starts beating you all over.  Sometimes if you're lucky and you just keep moving, don't take 10 minutes to eat, don't stop too long to pee, just stay on your feet and don't let yourself rest, you make it to the end of the day without really letting it sink in.  You feel stiff and numb and like you're a thousand pounds, you've been running on empty all day, but it's not overwhelming pain just yet.  Then you sit down in the car, you get home and park, and you try to get up again.  And that's when it all dumps down on you like a ton of bricks.  Your legs are so stiff you stumble trying to take a step and nearly end up face-first on the ground.  Every muscle is screaming "WHY DID YOU DO THIS?!"  Well, what was the other option?

Are you going to meet up with a friend after work now?  Stand up in the kitchen some more and cook dinner?  Sweep the floors and take out the trash?  Are you going to, as clueless people just love to "helpfully" suggest, exercise?

Unlikely, right?

This was basically how I functioned for years.  Both before and after my diagnosis.  This is how I've gone over a year without seeing friends who live 5 miles from me - months without seeing friends who live less than a mile.  I plan to plan.  But I fear to really commit, because I know how I'm going to end up feeling.  When Friday night comes I'm going to be sad we didn't get together, but I'm also going to be saying "Thank GOD I didn't make plans.  I would die if I had to do anything right now."

And this is also how fibromyalgia has insidiously become an artificial part of my personality.  I mean true, I'd take hosting friends for dinner and a movie over going out to a noisy bar any day.  To some extent, I've always been a Grandma type.  But the part where I look forward to being alone on the couch more than anything?  That's not me.  That's not what I really want.  Abandoning my hobbies and letting friendships slide and letting everything fall apart around me, that's not me.  But it has been for so long at this point, that I guess I can't claim it hasn't become me.  But I hate it.

So I got the diagnosis.  At the time, I was actually really excited.  There were a thousand odd little things, besides the giants of pain and fatigue, that I'd been experiencing for so long that now made perfect sense.  I thought, this weight has been lifted now.  Sure, there's the possibility of treatment, which is great, but more importantly I can stop feeling bad about myself.  I know now that I'm not just a terrible, lazy person who can't get her life together.  I can go a little easier on myself.  I have something to tell people to explain myself so I don't just have to awkwardly play off my failings.  This is going to make my life better.

Unfortunately, it hasn't really worked out that way.  The long-ingrained feelings of inferiority when I can't hack it like a "normal" person, causing me to constantly push myself too hard, are not so easy to dismiss.  Because no one else is judging me on some special standard.  No one else can see how I feel, so to them it's not a consideration.  And when I thought that once I told people, they would understand a little more, I wasn't really looking at how it would sound in their shoes.  It's some word they've maybe never heard before, whatever I can quickly manage to explain about chronic pain and fatigue before they tune out.  And then I get the same responses as I did before I had a name for my diagnosis.  "That's impossible, you're young.  You can't feel like that.  You should exercise more.  Wait til you're my age."

Then I still get a lot, even from the people closest to me, "Are you feeling better yet?" even when I'm not on any medication.  It's a basic thing about chronic illness that's just really hard to wrap your mind around.  Because... no.. that isn't just going to happen.  Or when I'm feeling so badly that despite the "invisibility" of fibromyalgia coworkers can actually tell, and they ask me what's wrong, and I say "Remember the whole chronic condition thing I explained to you last time?" and they say, "What, still that?"

The label I thought would save me from my shame becomes itself this obnoxious name-dropping thing that I just loathe to do, because most of the time it just does not register with the person I'm talking to, it doesn't help anything, and I hate hearing myself repeat it and become that sick person who has to remind people she's sick.  I don't want to be reminded.  I don't want to have to remind anyone else.  I'm a nuisance, a burden, a dysfunctional person with some hand-wavey diagnosis that doesn't sound real and god, hasn't that gone away yet?  And when I started looking for fibro communities online, I found a lot of people who are all "look at the purple ribbon, this is part of my identity, I am fighting chronic illness every day and kicking ass" and I just can't bring myself to be one of them.  As much as I would love everyone to have the basis of empathy for what I'm dealing with, I have basically tried not to bring up anymore in real life if I can avoid it at all.  It's not like I'm in a wheel chair or even walk with a cane.  I manage, don't I?  I don't have some kind of pride I'm entitled to for this.  I should just suck it up instead of trying to keep justifying myself.  Because I'm still ashamed of not being able to manage enough, to do enough.

And this was where I was before the flare-up of September '15.  Which is ongoing.  I am so, so incredibly fortunate that I have a job that has allowed me the flexibility to cut my working hours in half from what they were 6 months ago.  I am so lucky that we're financially stable enough that the fact I'm making half my former income hasn't ruined us yet.  And even so, it's not enough.  I'm working 5-7 hours most days and I'm still falling to pieces.  Desperately trying medication after medication on a rollercoaster of side effects just trying to find some little piece of relief, but instead I'm working with dizziness and nausea and my head feeling like it's a mile away, I'm having to miss work for mutant monster migraines, I'm just coming apart at the seams trying to keep up with what little I can before I lose my career to this stupid freaking condition.  I am so lucky my boss likes me enough to have kept me on through the past few months.  But every day I'm torn between wishing for something to finally work, to allow me to do as much as I was managing with before so I can keep going with this job, or wanting to just walk away from it because I'm simply too tired.  Even the idea of getting better exhausts me, because I can't really imagine what it's like, I can only imagine trying to do more with the way I feel now.  Maybe I've made a terrible career choice with my condition, but I don't want to let fibro dictate that I can't keep doing the only thing I've ever loved doing.  But then again, I just want to quit, because I'm just so tired.  But what would I do?

To everyone who's ever asked what's wrong with me and I've kind of brushed it off and tried to give you the five-word answer, well, here's the whole of it, with all the ugly embarrassing bits attached.  To anyone who knows someone with a chronic illness and can't really understand it, I hope this little window into my experience helps.  It's no clever metaphor with spoons, it's just the best I can do to describe the constant tug of war with myself, trying to be believed by others but also not let them see what's wrong, trying to believe myself and also dismissing it because it's not a "real" disability.  It's just this stupid thing I have that dictates everything I do and affects every second of my life.  But it's just, you know.  One of those stupid things.


  1. Thank you for sharing this glimpse into the last year (and whole) of your life. It will get better eventually, and your talent in making amazing things will always be a part of who you are. <3

  2. jesus christ D: Hope you find some meds eventually that can take the edge off and make pursing your cake related dreams easier. My sympathies; just found out I'm on the autism spectrum this year: 'this explains a lot and also I can do jack all to mitigate it! awesome'

    1. Thanks Birdy! <3 I'm on Savella now, only up to half the full dose, and I'm tolerating it pretty well which is the best I can say for the meds I've been on so far, but have yet to see if it helps. Only problem is you're not supposed to take NSAIDs while on it which is part of what I take to treat migraines, so when I get one it's like HAHA WHAT IS MY LIFE.

      You may not be surprised to learn that Jay is almost definitely on the spectrum also. And even if he could do something about it, probably couldn't be bothered, haha. But I hope knowing what's up at least gives you a clearer perspective on things and makes it easier to cope with stuff cause you can understand it better. I do think it's better to know, even if it doesn't solve everything or anything, really. Hugs! I miss you guys!!

  3. So much of this post resonates with me. I have been “sick” for the past seven years. The migraines that make you wish that you were dead, lesser migraines that simply leave you unable to function and the daily fatigue that completely saturates my body. I have been poked, prodded, tested, medicated but there is still no official diagnosis. The possibility of “Chronic Fatigue Syndrome” has been raised recently and that seems to fit more than anything else. My GP isn’t too keen on the idea, has told me on numerous occasions that he thinks I would be so much better if I would just work out every day and lose a little weight. The last time he brought that up I cried the whole way home because was so tired from working all day AND going to the appointment that I was going to have to home to take a nap so I’d have the energy to sit on the couch and watch TV with my husband.
    Earlier this year my neurologist had me stop taking all of the medication I was on in preparation for another blend he wanted to try (one that would allow me to get pregnant). I ended up in the hospital and had to take two weeks off of work while he decided what to do, ultimately to keep taking what I had been. The worst moment of the whole situation was having to tell my husband that it meant we probably couldn’t have children. If my body couldn’t handle a week med free it most certainly wouldn’t be able to make it 9 months. I’m telling you all this not for sympathy, but so you know that I mean it when I say I understand what you are going through and I think you’re an incredibly brave and strong person. You are not weak or lazy or antisocial, you struggle more in a single day than most people do in a month yet you still manage to live your life the best you can. I find your journey so inspiring and it has meant so much to me to read this post a feel like I wasn’t alone. I hope you have a wonderful holiday and I wish you so much hope and joy in the new year.

    1. Thank you so, so much for this Julie. It's so wonderful and inspiring to hear the story of someone who understands, and I'm so sorry for everything you've been through. I've been lucky to avoid the "losing weight cures everything" doctors, but I've gotten that from plenty of people as unsolicited advice. And I am really really lucky that I've just never wanted kids because if I did, I just can't see how I could possibly manage when I can barely care for myself. I can only imagine how heartbreaking it must be to realize the possibility of carrying your own children may be closed to you when that is something you've wanted so much. Thank you for sharing your story with me. You're heard and understood and I hope you are able to find some answers that may help things get a little easier. <3