Zombie Dance Party!

Tonight at dance class, my limbs felt like sloppy dead weights slashing desperately through the air as they chased the beats of the Rocky Horror soundtrack.  How appropriate.  T’was a horror, indeed. I was hoping we’d be learning the Thriller dance as previously promised as a Hallowe’en treat – at least I’d be more convincing as a born-again zombie.

And that’s how it feels like sometimes, like I’ve been in a tomb for a thousand years and I’ve suddenly been faced with the task of feeling connected to this strange container of mine, to move it despite the creaky joints, the weight of crushing fatigue.  It’s that, or I feel old.  I remember going to a naturopath and after a series of tests she determined that my body’s actual age was 73.  No offense to 73 year olds, of course.

It was cold and rainy today.  Windy as hell. Sock-less and disoriented, I got caught in the rain a few days ago when street construction left me in search of a temporary bus stop… which I didn’t find.  Coughs on the bus tense my shoulders and I try to escape into spaces of “unaffected air,” careful not to touch railings, my hands fetal in my sleeves.  I’ve had to work a lot lately, doing my best in my downtime to drown myself in tea and nest in the warmth of my bed.  I am desperately trying to keep myself healthy so I can last until work lessens into my regular half-time routine next week.  Getting through this week also has an added spin – for the first time in my working life, I will have full benefit coverage if I become ill because of a lupus-related condition.  I am grateful and very, very, very lucky, and holy crap, I better not screw this up.

Stiff and cranky, I stood listening to the wind howl against my window, the clock ticking ever nearer to the start of my dance class.  I was unsure if I was up to the task of taking on my body (or the rain).   In a fury, I suddenly whipped my pyjamas off (yes, I was already wearing them) and changed, figuring I had already had a 3 hour sleep that afternoon, and one hour of moving wouldn’t kill me.  It’s always a fight to keep the balance of rest and moving around.  Lupus fatigue makes you want to sleep all day (which I can), but then you’ll always be the sluggish zombie, whose limbs are out of practice.  As I was leaning against the barre taking advantage of a short break, a person in my dance class asked me if I was alright.  My instinct was to say I was tired because I have lupus, but I stopped myself.  Tonight was really hard for me, but there was no need for excuses. Instead, I chose to have a zombie dance party, to move what I could move and accept with campy jubilation what happened as a result.

Nest Escape

My second dose of the “Big M” last night has left me tired and dizzy today.  I feel cold.  I wrap my fuzzy blanket around me like a second skin.  Weary chipmunk.

It’s cold out.  I’ve climbed back into the cozy fortress of my bed two times today.  A makeshift nest of blankets lie rumpled around my current mode of escape; an 800 page edition of a fantasy trilogy lent to me by one of my most favourite keepers.  I’m grateful for it.  I need to forget my story for a while.

I’ve been watching images of some of the planet’s strongest and disciplined human bodies flash across the tv screen.  I smile in awe as I gingerly press into the skin across my chest, suspicious of increased inflammation.  The weight of my bra against my skin has been hurting me a little.  I’ve been more stiff then usual this week.  I’ve been finding new dark bruises on my skin.  The vein beneath is hard beneath my finger, which means I have more signs of vasculitis (vein inflammation).  I’m indifferent to these new discoveries.  It’s the vasculitis in places you can’t see which are the most worrisome, but since you can’t see them… well, why worry?  You’ll know soon enough.  

Perhaps the sudden cold snap is a factor in regards to tiredness and stiffness or  maybe it’s because I haven’t been sleeping very well.  It could be everything or one thing or none of the above.  Maybe the new drug surging through my system has nothing to do with it at all.  I don’t spend too much time asking why anymore.  It’s just nice that these days, since my decision to work less, I actually have the time to give myself over to nesting.  I can tell my body is grateful.

 I think I might have a lot of my mind, but I’m not allowing myself to go there.  I go to my book instead or I sit happily on the edge of my seat cheering for Team Canada.  Trudging through the bog of a heavy mind is no place for a weary chipmunk.  Please do not mistake the tone of this post, dear reader, the chipmunk is still content.  There is though, admittedly, an ever present tiredness that goes much deeper than the physical fatigue that headlines the “Lupus Textbook.”  I plan to meet it head on in order to clear the way… just not today.  

Today is for nesting.

Into the Fog

12:20 am and I drive into the fog.  This time it’s literal.  Things are inside out.  I think, “well, isn’t this interesting.”  I let my imagination soak up the metaphor…

My brain fog seeps out of my tear ducts in slow, deliberate puffs.  The fog is thick, solid.  The lamp posts stand idle and useless.  I give them sideways glances – “well, clearly you’re no help.”

For the first time in weeks, I turn off the radio.  It’s usually turned up all the way; till it hurts, till it’s nothing but noise, till I can’t hear my thoughts.  But I’m in the fog now, so for some reason that calls for silence.

Suddenly, I am willing to hear what I have to say.

My brain fog is different now.  Collateral damage.  It’s more of a physical sensation now, it’s more intense, heavy… but most importantly, it never lifts.  My perspective is always veiled with it.  I don’t think the same.

People find their way through a foggy night because they are confident that underneath the fog everything is exactly the same; the street names, that right turn, the restaurant on the corner. For months, my inflamed brain distorted my world, tricked me into buying into the make-believe.  In the aftermath, every moment of everyday, whether I am staring into the eyes of the person I am talking to or watching the lights change at a busy intersection, I wonder if what I am seeing, hearing, touching, feeling is the “real deal.”  I’m not sure if what I experienced before all this happened was the “real deal.”  I’m pretty sure none of that really matters anyway.

It’s not a bad thing.  It doesn’t make me unhappy.  It’s just different.  And somehow, even through the fog, even though I feel confused sometimes, displaced, detached from this body of mine, from other people… even despite all that, it’s like I’m not in a fog at all.  Clarity in disguise, perhaps?

I found my way home tonight, of course.  I always do. I’d like to think that we’re never as lost as we think we are.

Am I a human dreaming about being a butterfly or a butterfly dreaming about being a human? – Chinese Proverb

I am very “manic” today.  I would call it “chipper” but the 10 year old Elena didn’t show up today.  Nope.  Just the cranky, darkly explosive Elena.  She also cries a lot.  You wouldn’t like her.  I know I don’t.  It’s because I felt nauseous all day today, I guess.  I just didn’t have any energy in the reserves to hold her back.  Don’t worry, no puke, but I couldn’t eat very much either.  It was bringing back memories of the two months before I was admitted to the hospital for this thing.  Did I mention I lost a total of 21 pounds by the end of my hospital stay?  

Anyway, I was so tired today that I think I must have snapped at my beautiful, concerned parents about 50 times.  This one time I heard the footsteps of my mom in the hallway and I yelled out “I’m okay!!”  I scared her half to death.  She was probably just on her way to her room and not to mine at all.  Sigh.  I know I need to be home with them right now, but God, I wish that I still had my apartment on times like this; a place where I can hide away and protect my parents from being yelled at for nothing.  I won’t even go into my feelings about being a 28 year old woman living with her parents again, her newly retired parents who should be enjoying their lives.  

I try my best to be quiet on days like these.  I try to keep to myself, read, email.  I am finding that I need to do less emailing.  When I am feeling particularly manic or “hypercreative,” I end up writing long, intense emails to people.  Mostly to my favourite people, but sometimes to those I don’t know very well at all.  I think the latter is where I get myself in trouble and where I end up sounding as crazy as I feel these days.  Now these emails are always full of positive things and expressions of fondness and love, but I am sure the intensity of these emails are hard to receive, awkward even, for some and surely exhausting to interpret.  Great.  Just another way that I am hurting those around me.

When I say “crazy” I don’t mean to insult those who actually have bipolar hypermania.  If I have learned anything in this whole drama, it’s that mental illness is a powerful and horrible thing to have to live through, so much harder than what I have gone through physically with Lupus.  I only have to deal with the physical pain.  Ok, yes, all those with chronic illness also suffer through emotional trauma, but nothing like this.  The stigma, the guilt, the fear that comes out of having a disease in which you cannot control what you say or do, to never know what is to come out of you whether it be tears or screams or threats or joy.  To not know if you could potentially say or do something that would ruin the lives of those you hold dearest, to think that there is a possibility that you could physically harm them… to live with that in addition to knowing that the majority of the population think that you are doing these things on purpose.  That you’re not “trying hard enough” to stop doing and saying these things.  I have found myself thinking sadly of the mentally ill man who beheaded the young man on that Greyhound Bus not too long ago and of the young man’s mother.  How can anyone expect her to understand that the man did not want to do that.  That he is ill, that he was probably there watching inside his head, watching in horror as he did that horrible thing, helpless to do anything about it?  

All my days in the hospital and even now I am standing there too, in my mind, watching myself, trapped.  An outer body experience I guess you could call it, but I definitely feel like I’m still inside my head.  I watched everything, EVERYTHING, watched myself make an utter fool of myself, singing and talking nonstop and kicking walls and screaming and throwing things and threatening… I watched everything, everything except the moments when I left entirely.  Yes, there are whole days that I don’t remember because I literally left my body.  I guess I died.  Well, isn’t that what you call it when your conscious self leaves, when the only thing left is your outer shell?  The only difference is that she was still talking and screaming and throwing things.  But that wasn’t me.  I know it wasn’t.  Because I wasn’t there.  Now, if that isn’t the scariest thought ever, I don’t know what is.  But it wasn’t a thought people – it happened.

I came back of course, somehow.  I’d like to think it was the love of those around me that awakened me.  It sounds more beautiful that way.  The doctor folk will probably want to say that it was probably the mix of drugs that did it or something.  My brother says it was like I was on LSD, that I was on some psychedelic trip.  Perhaps I was.  At the current moment, I don’t really care.  What happened next was that I started to figure out how to control the different Elenas that sprung out of me from moment to moment.  It was slow, too slow for my liking, so I did have my share of outbursts, but I quickly learned that those outbursts would not get me out of that hospital room.  I forced myself to calm down, to be strategic in controlling my symptoms.  I figured out that one of my most obvious symptoms was talking nonstop, so I learned to be quiet and listen.  Eventually the doctors started to feel better because they were noticing that my behaviour was improving.  They started letting me out of my isolation room and eventually they released me, but they did it because they thought that the steroids were improving the inflammation in the brain.  When they decided to release me they hadn’t even given me the first dose of chemo yet.  And as I have established in my previous posts, my bipolar symptoms are largely unchanged at the moment because the chemo hasn’t kicked in yet.  They say it takes 6 – 12 weeks.  We’re on week four and a half, I think.  And yes, the steroids have been fabulous in eradicating my arthritic and costochondritis symptoms and giving me my appetite back.  I can’t even remember feeling this pain free for this long, but the memory loss, the bipolar mania symptoms, the OCD, the vision loss in my left eye, the brain “fuzz” sensation I feel around my head, the cognitive blips… they are still there.  And they were there when they sent me home.  I fooled them into thinking I was better.  I had to.  I knew I would never get better in there.  And they would never take my word for it alone.  They needed proof before they released me and through their scientific reasoning they must have reasoned that the steroids were finally doing a good job on the whole brain thing, or starting to anyway.  Or I could be wrong, who knows.  Maybe they could feel that I could deal with this at home now.  Maybe they believed in me instead. I think I’d like to choose that ending.  Did I mention that the steroids, in addition to making you an insomniac and a moon-faced freak, it also aggravates and brings out bipolar-like symptoms.  I think you’re starting to see that, I’ve got a lot of things working against me here.  And it’s not even the drugs that are the worst of it, it’s that essentially, I am in a battle with myself.  Constantly in battle with these distorted versions of myself.  I don’t even know which one is real anymore.  I don’t even know if a “normal” Elena exists.  Maybe she didn’t come back at all.

I had a moment of fear today that I am actually bipolar.  There is nothing in existence right now that can prove without a doubt that I have inflammation in my brain.  The prospect of knowing that I possess the actual mental illness, that I was not the lucky one who only has to deal with this for a short time, it was paralyzing.  And I still sit here paralyzed.  Paralyzed at the thought of it.  

I don’t think I’m that strong.