A Year in Review

So, it's been while.  So long in fact, I had wondered if I would even remember how to do this.  Good news though, it would seem I haven't slipped into premature senility just yet.

So, a fair bit has happened since we last met. I finally got out of that horrid workplace. So, I'm now in a totally new job, which has brought along with it more than a few challenges.  Not sure that I've found my niche, but for the moment, as I find my feet, I am grateful to be in a workplace that values me.

My body and I continue to be at odds. Some days we stand eye-to-eye 'till one of us cracks, but then other days I'm waving the white flag from the floor.  So, it's still a bit of a juggling act, and lot of mind-fuckery.

It's almost a year since I joined the world of online dating, and... well... the thing is - nothing has happened. Which makes this little fun fact, a little disconcerting...

Every. Day? In The World vs. StrangeBird, the score  is 1 to nil. Or is that 3 000 000 to 1. That's a lot of fucking zero's. The Supremes said "you can't hurry love", but Jesu - must I wait until I'm a pensioner?

Other news that has adversely affected me:

Joe Manganiello got engaged dammit. And...

Joseph Gordon-Levitt got married!  I would've taken a hyphenated name for you Joseph?! 

And I found out these two pieces of news in the same week.  It's been rough.

Still, we gotta keep moving. Until next time, "take a card, take a seat"...

the other f word

Fibromyalgia is a pain disorder associated with an increased sensitivity in the pain related-nervous system, causing otherwise mild sensations to be felt as pain.  It is characterised by the primary symptoms of chronic widespread pain, sleep disturbance and fatigue together with multiple other symptoms.

Recently I attended a Fibromyalgia management workshop, because I live with this word now. I sat in a room filled with people just like me; damaged, worn and guarded - just like me.  It was nice not to feel like the only freak in the room.

I'm only beginning to understand what this all means.  Some days I think I'll be ok - that it's just another label - like 'brown' or 'shy'. But, unfortunately it's not so benign, nor is it as easily accepted as the colour of ones eyes, or their personality traits. There's no cure, no known reason and not much understanding.

While at the workshop, I began to feel empowered - the room was like a safety bubble for us Fibro-people. We couldn't hurt ourselves in there, we could say almost anything and not be judged, a 'well' existence, mental physical and spiritual balance felt like it was just outside the door, waiting to be asked inside.

But now away from that room, away from my comrades I feel fear biting at my ankles. I don't know if I know how to make room for the space in my life that this can demand.  Today I might be ok, tomorrow, I don't know.

Part of our job from the workshop was to go forth and educate at least one person on Fibromyalgia.  So, to you, my special nine - may at least one of you pass by, have a read and carry the knowledge forward into the world with you.  And perhaps, when you next meet a person who has Fibromyalgia, you'll know a little of what that means to them.

fear & loathing

Life has been 'interesting' lately. After my aforementioned meltdown I gathered some distance from things, and from Google. At this point in the monologue, it might be worthwhile saying that the long weekend helped too.

The journey of this condition is so varied, so complicated.  It's as if all the sufferers are snowflakes in a giant blizzard - or perhaps plastic pieces locked in a tacky snow-globe together, but each in the path of their own fall. Alone.

Hmmm... coincidence my Santorini snow-globe fell and smashed the other day? I think not. Alas, I digress.

I have been forced to take one day at a time, because that is all I can manage. I'm learning not to fear the aches, but to respond to them as they come knocking. The most difficult, embarrassing component is what some call 'fibro fog' - which seems to be a blanket term for general mental fuzziness, used to explain poor concentration, memory loss (particularly short term) and word finding difficulties.  Word finding is the bane of my existence, particularly on days when I am short on restful sleep - to feel this word, this word I know, dodging and weaving my grasp, so that I am left wordless, open mouthed, mortified... is hideous.  I'm not one for talking too much, so I like to think when I do open my mouth my brain might have the courtesy to back me up a little.

I'm trying to keep things under my hat - but in the long run, I'm not sure it's going to work for me.  Trying to maintain a full time job, act 'together' when I just really want to fall in a heap on the ground.  Still answering the "how are you"'s with not bad thanks when I really want to scream, fucking awful actually.  Part of me still has something to prove. That maybe I'm ok, that maybe I'll be different... that maybe I won't have to reveal my dirty little secret to co-workers, so I can avoid 'those' looks, 'those' judgements.

I want to become informed, become strong, be smart and confident enough to say "ok, that's enough for today". But it's hard.  My parents know, but I still don't think they fully understand.  I'm operating in the shadows, and sneaking rest where I can - but it's not enough.  It's not enough, and I don't know how to say it without disappointing others - without disappointing myself.

"Fear is the cheapest room in the house - I would like to see you living in better conditions."  - Hafiz

the meltdown

Last week I was diagnosed with a chronic pain condition, known as Fibromyalgia.  When my Physiotherapist suggested to me in December that this was a possible explanation for my lengthy complaint of muscular pain, migraines and other non-wonderful things - after the initial freak out, I thought, ok, good - maybe I'll have a name for what's wrong with me. I thought, if this is the absolute worst that life hands to me - I think I can handle it.

I researched it, and it made sense.  The way it was described sounded broad, but awfully familiar.  I got myself a referral to a Rheumatologist, I gathered my scans and my sad pain history and away I went. Whatever happens it won't change me, I won't let it define me, I told myself.

As I sat in the Rheumatologists office that day, detailing the journey that had led me to this exact point, I felt a sense of release, and relief.  How far I'd come, and maybe now, had found someone to understand, to shine a torch upon the mystery.  She poked and pushed at the pain and truth.  A small part of me wonders if I wanted to feel the pain, to be vindicated, to have a word for the collection of shit that I had carried for almost two years.

She finished her examination, and she sat, her lean legs delicately crossed, her perfect chestnut hair brushing her shoulders, and her mouth moved and contorted as if smothering a smirk, or chewing on some sharp words like a boiled lolly uncomfortable to place in ones mouth.  And then she said: "all of these things, you have been describing and experiencing could be explain by a condition called Fibromyalgia."

"It is a diagnosis of exclusion...." It sounded like a big fat 'maybe' to me.

Still, I accept that it's a difficult condition to diagnose, understand and treat.  As soon as I applied that label to myself, I felt the weight push down on me, as in my head I tried explaining this invisible curse to friends, family, myself... as I imagined conversations with coworkers, doctors and various doubters.  This hidden hurt would never justify being unable to lift a heavy box, or explain why I had so many sick days.

Since returning to 'normal' existence, with this new information - I have scoured and devoured countless websites, books, forums - for answers and understanding.  I screwed my head so much with all the information I was trying to take in - trying to be my own solution - I was wearing the hats of the scientist and the sufferer and it all became too much.

I sunk into a pit of doubt and fear, frustration and desperation and I sobbed my heart out, I cried so hard it took my breath away - hit by grief, all I could see were roadblocks and all I could feel was judgement.  My parents were around to calm me down, to plug the out pour.  I think at that moment, I was saying goodbye to my 'before Fibromyalgia'.

I still don't know where I'll go from here, or how I'll feel from one day to the next.  To some extent I've lost control of my brain and my body, for now at least - but I am not prepared to give in.  Piece by piece I hope to unravel my experience, and learn and cope as best I can - because it is mine alone, and another cruel part of life that I must accept.

...shoot me down, but I won't fall...