Mechanical Animals - Two Bees Dancing

Preorder MECHANICAL ANIMALS here and here.

Two Bees Dancing is the first (and only) story I've written since "all that stuff happened". There's a reprint of Acception coming soon, but reprints require exactly zero angst on my part, so in this instance it doesn't count.

Angst, man. What even.

How long have I known the story was accepted for publication? Ages. Um, possibly more than a year.  How long has the cover art been sitting in my inbox, with links to the preorders? Months. Have I advertised the anthology? Nope.

HOW GOOD IS THIS COVER?!?!?!

This is not bog-standard writer insecurity, which I've had. And to be fair, still have, but it is entirely eclipsed by this dread sitting heavy in my belly and choking my words. I just...can't...draw attention to myself.

So this isn't a post letting all know that I've a story coming out. This is a record documenting the evolution of the story, and it's just for me. Just a little bit of sleight of mind.

I'm always surprised when editors solicit me to submit. It's not that I doubt my craft - I'm not winning awards, but my writing doesn't suck - it's just that my publication record is so very thin and sporadic. My rate of production is so low I'm surprised I remain on anyone's radar. But S did ask me, and the theme for MECHANICAL ANIMALS is just, I mean, c'mon. How could I not?

I had no story lying around to cannibalise, so I had to start from scratch. Pretty early on I settled on mechanical bees as a tool of state surveillance. Metadata and the government's desired powers over it were topical at the time, so privacy was high on my mind. I spent months fleshing out the infrastructure of these bees, brainstorming sessions with friends and so many pages in my notebook just thinking in longhand. Concept is my strength. Finding the narrative/plot in that concept is not. The bees were not telling me a story.

I don't remember how or when the narrative actually came to me. I think I recognised that, still burnt and wounded from "all that stuff that happened", the narrative structure needed to be simple, and the voice not so removed from my own. At that point, I didn't have a voice. To a point, I still do not. But this felt like learning to trust myself as a writer all over again. Small steps. Strip the concept down to bare bones and bloody hell don't make the POV some corrupted AI bee-bot.

The conflict between surveillance and privacy remains in the narrative, but now playing harmony with the disempowerment of the disabled and chronically ill.

Because I was, then, just dragging myself out of deep incapacitation. Trying to conjure a future for myself when my present was still open wounds and trauma and the horror of minutes that never end, knowing that if there was only a little more support, I could-

Two Bees Dancing feels like the spiritual sequel to Acception. Actually I look at them and I'm like, Tessa, you've written the same story twice now. Perhaps that's simply because the journey to the end product was so similar. Perhaps because they're both born of deep-welling magma. But they aren't the same story. (THIS ONE IS ACTUALLY WITHIN THE WORD LIMIT. IT IS ACTUALLY A PROPER SHORT STORY. ARE YOU PROUD OF ME I"M PROUD OF ME.)

S gave me a chance to prove myself, to myself. It's surprising to be invited to submit, but also gratifying and humbling that an editor have faith that the story produced will be worthwhile. This opportunity gave me far more than publication. I've no idea how to make 'thank you' convey everything I want to convey. Two words and I'm a writer undone. Regardless, thank you.

MECHANICAL ANIMALS offers a table of contents that is quietly jaw-dropping and promises to offer a deliciously diverse range of interpretations on the theme. And the titles! Gracious, the titles. Not going to lie, a good title will win me over every time, as coming up with even just an 'okay' title is hard. Like this, The Hard Spot in the Glacier. How enticing and tantalising is that? I need exams to be over so I can eat this.

MECHANICAL ANIMALS will be shipped on 27 November. 

Nothing in this blog post will be news.

Fuck, you know, I've tried to fucking "sculpt" an opening paragraph three times now. This isn't going to be a technically skilled piece of writing. It isn't going to have a structure that means anything to anyone but me.

Last night was not so much a breaking point as a an unexpected bubble making it to the surface. The tearstorm came out of nowhere. A conversation about devops suddenly careened into empathy and then I found myself sobbing into my hands and blubbering all over J. Which, being someone with depressive issues, isn't actually that out of character, but I hadn't spotted it coming. In fact I'd had a good day, was feeling fine. I thought I was.

Originally I'd been working 11 till 4. My own confidence growing and some crunch time at work led to an extension of my hours and my joining the 9-5 crowd for a week. Only one week. Not counting Wednesday. That's all I lasted. On Wednesday I slept until 3pm. On the weekend I did the same. Right now I'm using a mouse only with my left hand, because the increased hours simply resulted in me doing myself an injury. With a computer mouse. To my right intercostal. Which affects everything I do, including breathing.

It's a pattern established over six years. Change my work routine and set up, and something inside me will break. When I was a House Elf I had tendonitis from scrubbing the fucking showers in the bed & breakfast. At FOI I had to go part-time. Before that at my data-entry role, my body...broke. And I had to just leave and get another job. Actually that's what I did with FOI as well: I left the country, became a House Elf, and failed differently. Six years of failing, and being in pain for trying.

This time I'm in a completely new organisation, and it feels like having a fresh audience. In front of which I am failing. Again.

How can I plan for my future when I can't even control my capabilities in the present? I'm coasting along on the goodwill of others, and that's what my future requires, and it isn't something that can be taken for granted.

I'm just so tired of this. A positive frame of mind doesn't even come into it. I'm happy if I can keep my mind quiet, because it takes so little for all my frustrations and anguish to stir and stampede. It all just feeds my depression until I just look at the massive beast it has become and shrug.

There's no way out but through.

ETA: I think it's especially sharp-edged this time as my current work environment is amazing. A small comfortable office in which everyone actually does their job and gives a shit, and few people actually complain. I want to live up to that. And I all my aches and pains mean I have to make decisions which ensure that I can't. I don't want to be dead weight.

Today I also discovered that typing, not just using the mouse, aggravates my injury. This cuts into my editing work. Nowhere is safe. 

Chronic

A dear friend of mine recently brought two articles to my attention. The first I read, Women with Fibromyalgia Have A Real Pathology Among Nerve Endings to Blood Vessels in the Skin, (pdf) is a concise description of an actual, recognisable, testable THING relating to fibromyalgia. The first. Ever. It's also the first time I've read something discussing the symptoms of fibromyalgia and had it gel with my own experiences. It explains my awful tenderness, which seems to be the longest lasting of my symptoms. When I think back to where I was living when my pain levels were at their worst - a one-bedroom flat with no insulation, no heating and windows that didn't seal - I can't help but wonder if perhaps there is not only some correlation, but causation.

A moderate climate would go a long way toward explaining my current state of wellbeing. 'Wellbeing', that is, not merely 'being'. Although I've deteriorated somewhat since it has become too cold to swim regularly (I took a dip not two days ago and fuck me I won't be doing that again), I have not done so nearly as much as I'd anticipated. I still feel pretty good. My energy levels are mostly in the green.

Definitely something to keep in mind next time we move.

The second article is What is Wrong With Me? (pdf), and it is written by someone with a chronic condition, for people with chronic conditions. It's a story we are all familiar with. Some peculiar flex in my guts forced me to stop reading when O'Rourke stated the years it took to get a diagnosis, which is a statistical average. She goes on to acknowledge the particular conflict a person with a chronic condition must contain within their being, in that we must advocate for our illnesses while at the same time be resistant to conflagrating these same illnesses. She acknowledges the resistance to a shifting baseline.

It was something I needed to read. It's probably something I'll need to read time and again. I encourage all who have any chronic condition to read this article. 

Jade & Free

J noticed it first. "I think getting out of the water made you sad."

It isn't enough to enjoy swimming in the sea. The ending of such enjoyment does not lead to sadness, which is a rare emotion to surface, so often with other feelings stealing its name. A small enigma. The next time I left the ocean I paid attention.

It's the tangible, palpable, measurable return of gravity that presses down on my heart. It's experiencing the return of the complete heaviness of my body, including the weakness in my muscles and the dense weight of my bones. Once again it requires effort to remain upright, effort to merely walk, effort to lift my arms from my side, effort to hold up my head, and all the threads of my movement, once again, sigh.

It's a raising of awareness of the corporeal prison I will never escape, and the nature of the long-standing frivolous agonies it contains. Not, I must clarify, a raising of pain. Simply a raising of awareness and direct attention.

This reminder shadows the experience of being in the water. Of feeling almost weightless, and all my movements, grand or fine, seem so easy. There is no heaviness in my body. I imagine I can almost be capable of grace.

It's jade. Varying shades of. When it is clouded this jade is deep, rich and dark, an incredible colour to gaze into. If blue sky is looking down then the jade is bright and strong, and if the sun touches the water it is slashed with bands of pale gold and it is almost turquoise. To immerse yourself in such wealth and purity of colour can draw out a gasp slowly. With grace.

I can contort myself freely. Treading water requires no energy or effort or even conscious thought, and so I can hang suspended and free indefinitely. I can climb up waves three times my height and only be breathless from squealing. Spiraling, diving, twisting and spinning. I will strain myself. It doesn't take much. A few seconds of vigorous swimming, or fighting my ridiculous natural buoyancy to touch the sea floor. Even then, the effort required is something different. Rather than straining against the limits of my body, it feels as though I'm straining against the water. The battle line is external, rather than internal.

That is what the water gives me. A moment of respite.

Getting out of the water does indeed make me sad. 

Extra Hours of Uselessness

I've had sleeplessness. Sometimes brought on by a racing brain, sometimes from shift-work broken sleep patterns, sometimes even just plain ol' insomnia that doesn't appear to have any cause. Sleep and I have always had an inconsistent relationship.

The last couple of years sleeplessness hasn't been an issue (which let me take a moment to say YAY). Instead fatigue has come to rule and now, while I still don't ever seem to be able to get enough sleep, I'm getting heaps of it. Without the structure imposed by core business hours, I will sleep more than 10 hours a day. Every day. Regardless of what those days may hold. It's easy to recognise that I just need more rest than most, but so far has been impossible to accept as I don't wake feeling rested and renewed. Sure, I really, really, really like sleep. Really. But this sleep is like fake sweetener, it does nothing for me, and fucked if I'm not mighty resentful at losing nearly half of the day to it. If I keep going like this, that's half my life gone. It already feels like there isn't enough hours in the day without sleep getting greedy.

Waffling on a bit. Brain is mighty woolly.

The night before last I just didn't sleep. At all. It wasn't anxiety driven, brain wasn't chewing over anything, heart wasn't stewing, had had a single cup of tea that morning, no sugar beyond the afternoon, easy exercise during the day. My body just didn't feel like powering down, and while I wasn't pleased to watch the small hours become larger hours, the frustration and annoyance that usually comes with sleeplessness didn't feel like playing, and mostly I just listened to podcast fiction between attempts to lie still and breathe slow.

Hell, I actually felt alright when my alarm went off, and the only reason I didn't go to work was because I knew the instant I got out of bed and started doing, that would change.

Fibromyalgia and RSI management requires sleep be respected. The meatsack relaxes in sleep in a manner that's near impossible to invoke while awake. The less sleep you get, the less time the nerves and muscles have to recuperate, the inverse result being that I simply get really fucking sore. And dumb. But mostly sore.

Fuck I'm waffling so much. So very dumb.

Anyway, I figured I'd sleep just fiiiiine last night, because my body's reaction to "not enough sleep" is "HIBERNATE FOR THE NEXT WEEK ALRIGHTY!!!!!!!!!"

And I didn't.

Annnnnnd it's actually really weird. This is not even close to the default behaviour of my body for the past few years, and I'm well and truly out of practice in managing sleeplessness, if my old methods would even apply.

And. And. And. I honestly can't remember what the point of this post was. Other than maybe just leaving a record for myself? Um?

I think it might have been to do with the fact that if I'm letting my body sleep as much as I want I lose too many hours being unconscious, but if I'm not getting enough sleep then I haven't gained any time at all because my mental faculties are – herein demonstrated – shitclogged and I'm so full of aches and fatigue all I can really do is sit and stare at nothing in a daze before gently keeling over onto a pillow that never feels comfortable and still staring at nothing in a daze.

I think it might have been something to do with betrayal, in that my default attitude toward my body is resentment, fury and contempt that it sabotages my capacities and abilities across the spectrum, and then this, whatever this is, comes along like a rogue planet as if to say, "You thought I was talented before, now check this out!"

I think it might have been better crafted. Nuanced. Actually a smooth, interesting reading experience. But this is the exact result of all this body betrayal. A whole lot of flibbertigibbet.

Man, I feel like I'm gonna chunder.

Have a kind day, yeah.

Disabled In The Water

Yesterday saw (after a couple of weeks of grumbling about key selection criteria) the opening salvo of job applications sent to Sydney. Exciting! I have to confess, the past month of navigating the absence of my lover has been, is, continues to be harder than I let on. The job hunt may be a hateful process, but I will go at it tooth and nail to close the distance between us.

The positions were with the public service, and at the end of the bemusingly complex online form, I was asked quite simply if I had a disability. The drop down list gave me two options: lie or dare.

I often fall into the thought trap of assuming myself to be normal. "Okay." I mean, I have a job I can do just fine, I can go out with friends, I can-

-not.

I'm part time because I cannot, can not, survive a full working week without pain and deep fatigue. My salary is so much lower than my friends and peers because of this, because I must balance my health before any sort of job advancement and stress, the fucking demon shitheap it is, can decay my wellbeing in mere minutes. That extra day off on Wednesdays I have is not really a 'day off'. Much as I like to plan to do things on that day, mostly it is used to rest. Sleep. To do nothing and use that inertia to keep the fatigue and pain in balance so I'm capable of another two days of sitting at a desk.

Whether or not to be open about this in my job hunt is a little imp of indecision and anxiety I can never quite crush. The fear that admitting I'm a lame horse will mean I'm passed over for jobs isn't unreasonable. The fear that this will see me waiting months before I can move up to Sydney is nauseating. However, if an office isn't prepare to accept my limitations, then it is not an office in which I want to work. I know this. It's the buoy I cling to.

So I chose 'dare'. 

It's the first time I've referred to myself as disabled. 

Some threshold has been crossed in my mind.

Then there was Chinese New Year (KUNG HEI FAT CHOOOOI!), and a house warming party, and a birthday BBQ, and I was all set to bounce into all three. The logistics were planned out, I had my outfit picked, I was fucking looking forward to the silliness and cackling.

Bones wrought of fatigue, a substance heavier than lead. After firing off my applications I crawled back to bed, hoping a nap would bolster me. It didn't. I didn't leave my bed until today. 

FOMO is close, but not quite the right trajectory. My own not-particularly-well-thought-out take on FOMO is that it stems more from the lack of invitation than not being present. We're adults now, I'm not being invited to events out of pity. My friends ask for my presence because they genuinely want it. That's a fine gift, and I do treasure these requests. I just can't.

Every time this happens, I think of all those passing remarks in which someone is referred to, with exasperation and a touch of disgust, as 'flakey'. That I am that person is anathema. I don't want to be unreliable. I don't want to be a bad friend. All your celebrations and achievements I want to add the happy too. In that joyous memory-making dance I want to play my part and add another thread of glee. I love your presence.

The apologies I send are weeping with penance and self-flagellation and regret, and I doubt anyone is blind to the fact that I'm not asking for their forgiveness, but my own. 

There is no way out of here. 

Confessions, a Train Ride Home

I have  been thinking about writing, and how I am not.

There is a part of me that wants to blame medication, even though I stopped writing before the medication ever came into play. This is not unfair as it has shifted the way I think and feel. The heart does not howl any more, or, I have forgotten how to listen to it. I think this silencing has in turn silenced my need to write, to capture and tame my storms with mere words, precise words. And this should not be a problem, but it is very close, only a step away from, having nothing to say.

Which is not true, cannot be true, yet is very true.

If the need to express a voice does not come from within, then, given all the noise being forced into the world already, how can I possibly justify adding to it? If I have nothing that I need to say, then output must be because there is something I believe others need to hear. The audacity and arrogance aren't mine, not comfortably, to assume I have the authority to decide this. Even though I may choose the platform so that the choice to consume lies with the reader - no. There is already too much noise out there. There is nothing I can say that has not already been said.

There is no requirement for need in the writing of fiction. Need in the writer's voice can lend power to a story, but it is not required. I could write simply because I want to. But when the power of need has fuelled you for so long, action by want seems pale and trivial by comparison.

All that occurred in my life was for writing. All the learning and heartache and new experiences; all grist for the mill. It would all out in the stories one day. But now I don't need to cast my trials in such a light in order to make them palatable enough to see through, my lover stands by me throughout all fire and flood. It is enough to simply spend my days with him. But is it? Is a life that is enjoyed but to no end of any purpose? Writing was a purpose I gave my life in order to keep my life. Now that I am in no such danger, the purpose is no longer required, and yet to simply live is not enough, would be such selfish and wasted time.

I have already lost so much time. To waste more will lead only to self-disgust. Still, I cannot underestimate fear and the scars left by physical pain and emotional anguish that come into play. I lost my future, one I did not even know I projected upon myself, and so all I have and had done became untethered. Echoes of this singular horror I've heard from those struggling with Post-Traumatic Stress Disorder. It is not for me to self-diagnose, but it would be remiss of me to overlook this one and only echo.

To confront my identity as a writer, to consider reviving it, is to also risk the possibility of losing it again. Hope is such an awful creature. I had to give her away. She cost me too much. To survive I had to give her away. I had to.

Even from now, this place of strength, I can't dip into this subject matter without feeling it in my nerves and knowing that I will never be strong enough to survive the loss of my identity again.

There most probably lies the heart of the matter. Not all the medication and emotional well-being in the world will help me finish a story if I am afraid.

And I am so very afraid.

That Which Makes You Stronger

For three years now I have, before getting out of bed, before even sitting up properly, popped tablets from blisters and tossed one, two, maybe three back with a mouthful of water. Across time zones and continents, in transit, when accidentally away from home, when knowing I'm about to go straight back to sleep, when fighting off nausea. The image of all those pills sitting in one gigantic pile has just hit me. Green and white capsules, white round bitter coins, and clay tablets ranging from terracotta to stucco. Three years worth. Every day.

I can tell you that these magic medicines have kept me from suicide, alleviated my physical pain levels to manageable daily levels and lessened my depression. Because of these tablets I am living an absolutely amazing life, and will continue to do so. There is a lot to be thankful for.

And yet, even still I must every morning force myself to take them. Every morning it is a conscious decision to break the foil again. Some mornings I will lie still for minutes, putting it off. Pretending I don't need them.

Three years is not enough time to accept. Three years is not enough time to wear out resentment. 

A lifetime may not be enough.

Self & Prescribed

Three days ago I switched from taking Effexor to Pristiq, or venlafaxine to desvenlafaxine. The latter is a sort of 'remastered' release of the former, in order to keep the pharmaceutical patent alive, but although the molecular difference is cosmetic, the actual affect is quite marked. All anti-depressants have dulled my mind, bruised my memory capacity and generally made me vague and scatterbrained, but Effexor takes that dumbening to new depths. Unfortunately, Pristiq is not available in the EU/UK, so for the past year I have been endumbened.

It's amazing how little it takes to shake an awareness up and down. Mere milligrams is what I, we, the medicated sorehearts, take. Measures so small as to mean absolutely nothing in that small terracotta pill in the palm of your hand, which you're sure is comprised mostly of chalk and hope. Molecules, a mere additional arm, nothing, and these three days you've felt such an upheaval in your nethermind. Tearstorms and rotten softness where once you thought you were strong. You tell your friends and you tell your family; it isn't me. It's just chemistry. It'll be done in a week or so.

You tell yourself it isn't you.

We, you, I rarely speak of the faith required of medication. The invisible substance you take will alter you, and alter your ability to perceive this alteration. It will gift you with an emotional vertigo unwarranted by your surroundings. It will make you worse, so much worse, and the only thing you can do is trust, believe, hope, that it will get better. It must get better.

Please let it get better.

Last week I attended a PostSecret event at the Arts Centre. I've been following PostSecret for years, and so was not unprepared for the heartstring tugging that those hours contained. Strangers stood before a crowd of hundreds and confessed to personal crimes that stole their voices, a powerful and what should have been liberating and uplifting act, but when I left and stood at the station waiting for my train, I felt tired, deeply worn, helpless. There is so much hurt walking around these ordinary streets behind these ordinary faces. Tasting the scope of this suffering is to stop where you stand, close your eyes, and lie down right there.

There was one secret shared - the only man to stand and bare himself - in which the words spoken were a carefully crafted fish hook on a very long line, and I didn't realise I was caught and leaving a tangled trail behind me as I walked all over town.

He said that anti-depressants saved him,  have made him so much better, but it was before he started taking them that he has never felt so alive.

It's been years of medication and health obstacles, and nothing has changed except my perspective. I want to write, now. I'm not scared any more. Actually I've been bashing my head at writing for some months now, and a growing part of me suspects that this medication truly is interfering. Or is that the excuse I've come up with to hide behind? I don't know. I can't tell.

Still, strive for this. Stretch and strain. My application for part-time has been approved, and now every Wednesday is mine. The driving motivation for this was pain management, as the last three Fridays I've had a major meltdown from the stress of trying to hold myself together through the working week, as the pain signal gets steadily louder and more ragged. Fatigue has continued to dog my heels, so I must assume it is not merely the rigor of travel that was flattening me previously. Hopefully breaking the week in two will offer enough respite that I shall be able to keep on top of things, whatever those things may be.

Sadly that old paradigm remains in place, and on what should be a day of rest I will feel guilt for using my time for myself.

But maybe that's the medication talking. Maybe it's all just chemistry.

What I want, what I miss, what I long for more than anything else is Loch Broom.   I want that cold North Sea water, a finger of the Minch sneaking into the west coast of Scotland to lie lazy between the hills. A beach of rocks worn delightfully smooth, older than dinosaurs and covered in lost kelp and discarded crab shells. The languid wail of herring gulls punctuated by the piping of oyster catchers. I miss the constant salt in the air, air that has been tossed over the isles and mountains and seas. I miss the hills, barren of trees but so full of hunched life, heather and gorse grumpy and gorgeous. I miss the way the sun  would play through the mountain passes and the clouds would curl over the peaks as though suddenly shy. I miss the certainty that, no matter how much turbulence I carried in my heart, I could look out a window and see-

Attempting to Settle With Fibromyalgia

There is only one bus for Ullapool on Sundays. Tonight I will sleep in a bed that will be my bed for at least a couple of months to come. On Wednesday I will no longer be Master of My Own Fate, I will be employed, with a boss, with tasks and responsibilities and my time will no longer be my own.

This will probably be good for me, but I have to admit the notion leaves me somewhat disgruntled.

Coincidentally, I'm coming up on the last of my medication. I was given a slab of Pristiq before I left, enough to last me through the uncertainties of travel in various countries in the EU, also enough that would see me having been on a stable dosage for in excess of six months. It doesn't pay to tweak dosage and medication too much, and my psychologist was quite adamant that before attempting to lower my dosage I should sit pretty for at least six months.

Pristiq, or Desvenlafaxine, is not available in the UK.

The doctor I saw in the Bank Medi Centre did a fair amount of checking her references, and qave me a prescription for Effexor, or Venlafaxine. She was thorough in calculating comparative doses. The prescription given will be a slight reduction, but less than dropping from 150mq to 100mq of Pristiq.

This will be a direct chop and change. As soon as the Pristiq is done I will commence the Effexor. Much as this sounds dubious, I did the same when switching from Cymbalta to Pristiq, and on the recommendation and assurance of both my GP and psychologist, with no notable side-effects to speak of. Apart from space-cadetness. Vague I can deal with, however. Amplified depression, not so much.

I am still shit fucking scared.

The Fibromyalgia Support Group in Inverness has not responded to my email, and further searching has not indicated any particular doctors with an understanding of fibromyalgia in the area. In this case, I figure I'll save myself the travel and register at the medical clinic in Ullapool. There's only one. There are a few practicing doctors there, so even if none of them have any experience with fibromyalgia there must surely be at least one I feel comfortable talking to.

This lead to me attempting to research how one goes about joining the NHS. Should anyone else happen to follow in my footsteps, I have some very simple advice: don't.

The websites, which I am not goinq to link to because they are all confusing and lacking in anything that looks like administrative process, have nothing, naaaasink, on how to go about joining, or information for expats. A friend who had already navigated this told me to simply make an appointment and register with a doctor, and it will sort itself out there. Cool? Cool.






And while rummaging around online learning all this I read about my medications all over again, and about fibromyalgia all over again, and the words THERE IS NO CURE have lodged in my throat, all the descriptions of pain, fatigue, depression, aches, all the limits and restrictions, the unending unceasing reality of it, I remembered these things all over again.

I start work on Wednesday. There is a frightening amount of hope pinned upon this menial job.

Three Months

A couple of days ago, four to be exact, marked three months since I left home.

Three months is generally a point at which things looks less than wonderful. New jobs become familiar and new relationships lose their shine. This vagabond life has had the edges worn off, and I'm looking forward to stopping, but I'm also quite comfortable being beholden to no place and no person. This form of travel is the ultimate indulgence in selfishness and freedom. My time is mine own, my decisions need refer to no one else for approval or compromise.

Today, I woke up to a letter forwarded to me, regarding the work cover that paid for my medical costs for my fibro and RSI treatment back home.

Hunched over my measly free breakfast in a pub on a Monday morning, blindsided by tears and a rising stress that shook me with its relentless and unexpected onset.

All the majesty of glaciers and blizzards, ancient castles and quirky museums, dingy hostels and luxurious private rooms, all these days are nothing but distractions.

This letter reminded me that, no matter how many times I tell myself this journey is something I always wanted to do, I nevertheless undertook it as a retreat, that I gave up the life I'd built because my hands, my body, and an overwhelming depression one by one closed the doors and windows and threatened to trap me, that everything I'm running from is traveling with me.

Three months, and the change isn't enough.

Some of us die in sharks.

Foz: http://chronicfatigue.about.com/b/2011/11/16/do-sleep-problems-cause-fibromyalgia.htm?_inv_out=24&_inv_cp=1927025 (in response to this post)
Me: I'm rather inclined to think that sleep problems are a risk factor for EVERYTHING. Even getting hit by lightning.
Foz: Sleep problems = DEATH BY RABID WEASELS.
Foz: Because you could've run if you hadn't been so tired.

Goldtouch Go! Ergonomic Travel Keyboad

I've been using this keyboard for the past year and abit. It is the only keyboad out there tha is ergqonomic AND portable.

As you can see, it just craped itself.

I used t he exat same keyboad a work, and of course since it sa far more use, it did this ealier. GQot it replaed on waraty no problem. I don't hae the luxury this time aound. It wa, incidentally, the exactly same problem. Somethingq in the wiringq gqoes nuts, and suddenly the keys don't line up.

I've looked, but been unale to find ayone else reportingq on this.

Feelingq, ater tha lat post, ater statingq my only gqoal for the da wa to sit ad write my diay, thwated.

I've left my job, my home, my family, friends, loves and country. Scuttled my life to try build a new one, better suited to me now.

What more must I sacrifice?

Little wins. Let me have some little wins.

Traveling with Fibromyalgia

That I have deleted some six starting sentences for this post indicates that perhaps I am not yet ready to write about it yet.

To begin with, I am not as well versed on the effects of fibromyalgia as I should be. This ignorance was initially willful and deliberate; I was in denial about the whole thing and just didn't want to know, which is not a novel way with initially coping with the idea of a chronic condition.

Then tempus fugit and in the last couple of months in Melbourne I was busy failing to get my affairs in order for my departure and trying to see as many friends as possible. After that, well, travel is travel. I've been busy.

I can say with utter certainty that not spending 8+ hours a day sitting at the computer has alleviated my daily pain levels substantially.

I can say with certainty that lugging my rucksack and satchel around isn't really good for me, but so far I haven't done this for any great length of time. This will change as soon as I leave the US, but given most of my stays are several nights at a time, there is plenty of time to let my muscles rest.

Reasonable suspicion that sleeping on so many air mattresses, couches and sofa beds with all sorts of different pillows isn't doing me any good, but the effects haven't resulted in any impediment yet.

I don't remember what it was to live without perpetual pain and discomfort, and I know that sounds dramatic, but I don't want it to be taken that way. I just don't. Things seem to be holding steady, and that doesn't mean I'm feeling good, it simply means I am not stuck in the grinding cycle of work followed by aggravated muscles and pain, building up over the week until the weekend when I got enough time out - only to repeat it again. Things still hurt. I'm sitting here today, with the express intention of not going out but writing this and putting things in my diary, and I know I will pay for this tomorrow.

The coming price doesn't upset me as much as it used to, because now I have the time to recover.

Fatigue, however, has begun to worry me greatly. Fibromyalgia and Chronic Fatigue Syndrome are very closely tied, and do tend to come hand in hand.

I am flattened. Excitement and wide-eyed curiosity got me through San Diego and New York, although toward the end of my time in the Big Apple I desperately wanted to stop the ride and get off. North Carolina has being a wonderful balm of quiet and calm, and to the friends who have opened their homes to me I have no words. Thank you. For comfortable silence and big couches and your wonderful delightful pets. Thank you for letting me be boring and sleep. Thank you.

And yet, it doesn't feel like enough. As though there simply isn't enough rest in all the rest fields of the whole world for me to feel fully rested. My need to sit, not to catch my breath but simply to use less energy, happens far more frequently than it should.

I want to blame this on being unfit and failing to eat and drink properly (the latter of which always happens when traveling). Except I'm sitting here now, having done nothing but watch the #OWS hashtag and drink tea, and I still feel flatter than a pancake.

I don't know if I'm being reasonable or alarmist in even considering CFS, especially considering my own fibromyalgia is...

...I was going to say mild, but it isn't, is it?

I'm just good at ignoring it.

At any rate, my advice to people traveling with either of these conditions is to allow yourself plenty of opportunities for rest, whether that means allotting yourself time to sit on the train between museums or blocking out entire days to do nothing. Unfortunately, New York simply has TOO MUCH IN IT which makes not going out and doing ALL THE THINGS very hard, but, you know, try.

Common sense is, sometimes, not that common. Especially when you have shit to prove.

Only Symbolic

That was my last head doctor appointment.

It was a gesture only, in order to make sure all my medication is in order for the journey ahead. (It wasn't, by the way, thanks to my GP screwing up medications a second time. I will not be seeing him again. Thankfully psychiatrist actually knows her stuff.)

It should be a triumph to announce that was your last medical appointment, as usually that indicates you no longer require special care. I have to keep reminding myself that while I am free of all these appointments and receipts and referrals and specialists and tests, I am not free of the problem.

I've been on 150mg daily of Pristiq for nearly two months. As an anti-depressant it isn't too bad, probably comparable in effect to the Cymbalta; still hit some very low notes, but generally able to cope with life. No horrific side-effects, at least no new ones. Sleep appears to have been a bit better than previous.

Pain relief has been notable.

Which pretty much proves the psychiatrist, gp and rheumatologist right. I have fibromyalgia.

Which means walking away from a desk job will not necessarily have any impact on the perpetual discomfort in my body. It means I may just be stuck like this forever.

I'm very tired. I've pulled so much wool over my eyes to trick myself into going on a few more days, just a bit further, I don't know what or why or how the landscape of my mind grows. This grief continues, but I know longer know what it is for.

Go on. Keep going. Just a little further. Every day. For the rest of your life.

no more please no more

I think the cold has contributed greatly, in that aside from getting into my bones I spend most days wearing heavy coats, hunching my shoulders and hunkering down in them, with my hands in my pockets. Bad posture. Bad for hands.

Been chewing Nurofen Plus like they're lollies. Terrible bad lollies that, if I take two at a time and wait an hour or so, provide real tangible relief. They're the shit. They've also burned a hole in my gut and when I shit I stain the bowl bloody. Lots of it. Clots of it. Fresh and infringing on McDonalds red.

I stopped taking them of my own volition, and stuck it out until my next GP appointment. Told him this. He told me I should not have been taking ibuprofen with Celebrex. I don't recall this, I'm sure I've checked with multiple pharmacists every time I buy yet another box of Nurofen. I'm sure I've even checked with my GP, multiple times. But, these drugs, they make things fall out of my head. Maybe they made that fall out of my head.

Clearly the Celebrex was not enough, so he gave me a prescription for Tramadol, to be taken twice a day instead of the Celebrex. He told me it was an opiate, and there may be some nausea and drowsiness, and it was simply a matter of getting my dosage right. He's still treating me for fibrmyalgia, he says, so this will be targeting neurological pain. I asked him if it was okay to take Nurofen with this. He said no, I wouldn't need to take it you see. But you said we had to get the dosage right-

Off I went with my prescription. $38 later. The pharmacist sought me out. I shouldn't be taking Tramadol with Cymbalta, and should talk to my GP. My GP prescribed them. Oh. Well. They really shouldn't be taken together, so if you feel any nausea, any side effects, stop taking them immediately.

First tablet Sunday morning. No noticeable effect. Second tablet Sunday night. No noticeable effect. The pain could have been less, but it's hard to judge on weekends, there being considerably less time spent in front of the computer.

Third tablet Monday morning. Intense cold sweats, shakes and faintness on the train in, to the point of pushing for a seat and still not being sure that I wasn't going to keel over. This getting progressively worse during the day. Not having any flex time or sick leave without certificate to my name. Not being able to go home because I'm so behind at work I just can't justify it. Not being able to go home because I was certain I wouldn't last the trip. Spent five hours of work day mostly faceplanted on my desk and concentrating very hard on breathing.

Early afternoon the nausea took a step back, only to be replaced by drowsiness. "Drowsiness" is too light a word however. Diet narcolepsy perhaps. I did a quick dirty google on Tramadol. Lots of talk of seizures, and Serotonin Syndrome, and the fact that it is highly addictive both physically and psychologically.

I left work early to head over to Richmond, where I finally had an appointment with a psychiatrist.

Finally? I don't know. As if that is a good thing. The first session is always given to backstory and context, and I cried, because I can't break any of this down into small, easy to swallow pieces. It is either all - drowning and choking on everything - or nothing.

Cymbalta and Tramadol, the psychiatrist said. They should not be taken together, ever. The interaction can bring on Serotonin Syndrome, which isn't something that requires a dosage level be met, but can come on at any time. Stop taking it immediately.

Try Pristiq.

Who the hell comes up with drug names.

I've prescribed Pristiq to patients with both depression and fibromyalgia and had success, she says. You'll only have to take the one pill a day.

She does not give me a prescription, but sends a report to my GP, whom I am seeing later in the week.

For some reason, I am not relieved to be given professional permission to cease the Tramadol.

The drowsiness remains for the following day. I nearly miss my station. I nod off in a meeting I am chairing. I nod off while penning a sentence. I nearly miss my station again.

Questions. What the fuck was my GP thinking prescribing me these two drugs that would interact negatively? Does he have any fucking idea what he's doing?

Do I really want to try yet another drug?

And fail?

Friday. I see my GP. I tell him that the drug incapacitated me, and that the pharmacist and psychiatrist both stated emphatically that Cymbalta and Tramadol should not be taken together.

He shrugs and says "Well, that's where we're at now isn't it? We have to try these things, because we're running out of options."

He told me nothing other than it was an opiate and I'd probably get a bit of nausea. He did not inform me of anything. He made the decision for me. If I'd known, I would have decided against. I keep my mouth shut. He writes me a prescription for Pristiq. A box of 100mg and 50mg. Take the 100mg for a week, and then bump the dose to 150mg daily.

He doesn't tell me anything about this drug either.

I go home, and read about it. All the standard side effects you'd expect from an SNRI. Welcome home night sweats and muscle contractions, hello again insomnia and appetite loss.

What frightens me this time, what really frightens me, is that Pristiq has a much shorter half-life than Cymbalta. Pristiq is also marketed as Effexor, and I have read and heard many stories of people caught out by that - not randoms, people I know and trust - and being hit by severe withdrawal within hours of missing a dose, if that. Cymbalta has quite a long half-life. When I first started taking it I was prescribed Seroquel as well, in order to have a crutch to support me for the three to four weeks it took for the Cymbalta to kick in. Weekdays I take my dose when getting out of bed, at sixish. That's fine, that's regular. Weekends, however, I might not surface til 10, 11, 12.

Cannot do that on Pristiq.

Went to pick up prescription. Different pharmacist pulled me aside. Gave me advice regarding what other pain relief medications may be taken in conjunction with - Nurofen and Panadol with codeine are good for go. When I described the effect of the Tramadol, he said I'd probably had the beginnings of Serotonin Syndrome.

Had I? I didn't think- don't I know the effec- I've researched Sero-

The drugs. They make things fall out of my head.

$68 later, and I can tell you Pristiq are small, pink and square.













I am so tired of this. I don't believe I have fibromyalgia and therefore treating fibromyalgia won't help me. I hate these drugs. I hate what they do to my mind and so what they do to me as an idea. I'm in here somewhere. I must be. But I'm so tired of this. I'm so scared. I don't want to do this anymore.

The Good, The Bad, And The Otherwise

Back in February 2010 I was referred to a specialist, a rheumatologist. He twisted my joints, poked and prodded, made a couple of comments about Asimov and sent me on my way.

My Doktor, upon receiving the rheumatologist's findings, gave me a "...wtf?" look.

Regional Pain Syndrome

The symptoms of CRPS usually manifest near the site of an injury, either major or minor. The most common symptoms overall are burning and electrical sensations, described to be like "shooting pain." The patient may also experience muscle spasms, local swelling, abnormally increased sweating, changes in skin temperature and color, softening and thinning of bones, joint tenderness or stiffness, restricted or painful movement.

The pain of CRPS is continuous and may be heightened by emotional or physical stress. Moving or touching the limb is often intolerable. The symptoms of CRPS vary in severity and duration. There are three variants of CRPS, previously thought of as stages. It is now believed that patients with CRPS do not progress through these stages sequentially. These stages may not be time-constrained, and could possibly event-related, such as ground-level falls or re-injuries in previous areas. Instead, patients are likely to have one of the three following types of disease progression:

1. Stage one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.
2. Stage two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.
3. Stage three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening and thinning is more dispersed.

Upon reading the symptoms, I returned the "...wtf?" look to my Doktor.

The only symptom I had and have in common with this condition was pain. And you know, that's a symptom I have in common with, say, piranhas. Does that mean I have piranhas? No. No, it does not.

As such, we elected to overlook that diagnosis and continue with physiotherapy, which had been making significant improvements. For a while. Well. Yeah.

Hands started to deteriorate again, no matter what I did or did not do, which lead to the prescription of Cymbalta among other things, and, eventually, another referral to the rheumatologist.

My Doktor had specifically chosen Cymbalta as it has been proven to be effective in the mitigation of chronic pain. Curious, I asked my physiotherapist about the idea behind Regional Pain Syndrome and the theory my Doktor appeared to be latching onto in regards to overactive nerve activity and a brain that no longer filtered properly.

"Absolutely," she said. Although the problem with my hands may have started as a very straight-forward Repetitive Strain Injury, it had gone on long enough that the nerves would have changed with the conditions they found themselves in. In layman's terms; the nerves expect pain, so they make it. The brain expects pain, so it receives it.

I had my doubts when my Doktor explained his reason for the Cymbalta. Pain is not something that should be covered up. It's there for a reason, it's the best warning sign you get that something is wrong. There have been many, many steps backward on this "road to recovery" my hands have taken me on. One of the biggest was late last year. The Doktor had given me Celebrex, with instructions to take one a day for a month, and see how that helped. I was having adverse reactions to over the counter painkillers, and thankfully the Celebrex had no such effect. It's a slow-acting medication. Not designed for quick pain relief, but for chronic pain relief. It only kicks in after a few days, once appropriate amounts are in your blood.

It was lovely, being without that pain. Lovely.

At the end of the month, when I went off the Celebrex, the pain returned and was significantly worse than previously. I could only assume that without the pain to hold me back, I was working too much and not realising, and doing even more damage to my hands.

That terrified me. I wouldn't take any more painkillers after that, except at night when it was the only way I would get to sleep. The pain was necessary to keep me in check. I needed the pain, to listen to.

However.

I was getting better.

I could see it when my physiotherapist tested the tension in my nerves, and I could feel it when she went at my muscles and nerves with her frighteningly effective hands. I could feel it when I moved and when I stretched.

Improvement = more pain?

No comprende.

The rhuematologist twisted my joints and poked me hard enough to bruise and made some more comments about Asimov, and then wrote on a piece of paper "fibromyalgia" and peered at me over his glasses.

Fibromyalgia is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure...Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as post-traumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms.

"I've seen this," I said. "When I was reading up on Cymbalta."

He gave me his recommendations - to raise the dose of Cymbalta or stay on Celebrex indefinitely - and sent me on my way.

My Doktor was well pleased to hear this, his hypothesis being confirmed by a second source, until I pointed at that at the current dosage of Cymbalta I had noticed no different in pain levels and given the somewhat UNRELENTLINGLY ARSEHOLEY side-effects currently afflicting me, no way in hell was I going to start a higher dosage.

And that's where we are now. I'm to stay on 60mg of Cymbalta for the next couple of months. Should the current side effects of RAGING INSOMNIA and SOB-INDUCING RESTLESSNESS abate, I will try a higher dosage in the hopes it alleviates my chronic pain. If not, I'll drop back to 30mg of Cymbalta and stay on Celebrex for...however long.

I've done my reading around on the intertubes, and I have my reservations about the diagnosis. Fibromyalgia itself is something of a controversial condition, and when I look at the symptoms and requirements of diagnosis, my face gets a little skeptical. I'm not sure I tick all those boxes.

But, what my physiotherapist said makes sense to me, and she is the one who knows my condition best. I trust her opinion.

The majority of those I have shared this diagnosis with have expressed quite sharp-edged dismay, to my surprise and gratitude. Yes, well. The idea of living with chronic pain isn't exactly a happy ending. It's not something that really featured in my plans for the future, you know?

That said, I'm descended from people who pay sweet bugger all attention to pain. They shrug off cuts and don't notice bruises, strain and pull and twist things and simply treat them gently till they've calmed down, barely even notice when they're sick because, hey, it isn't actually stopping them from getting on with things. One of the problems in talking to my medical posse about my hands, for the entire duration, was being able to express the "level" of pain. When it's bad enough to keep me from working, then I notice it. Beyond that...look, I'm uncomfortable all the time, so I don't really pay it any attention, sorry.

The pain was there to stop me from doing damage. If my nerves are simply crying wolf, and there is no damage being done?

Fuck yes I will live with chronic pain. Fuck. Yes.
Fuck yes I will take medication indefinitely. Fuck. Yes.

Because what this means is the damage is not that bad. What this means is physically I can and am recovering.

What this means is I can think about writing.

I have a future, again.

BOOYAH.

Which isn't to say I can throw all caution to the wind. I'm currently filling another position at work, a role that involves more computer work than my own, and combined with the recent spate of blogging; I feel it. Oh boy am I feeling it. Ouch. Ow. Argh. Getting a bit carried away with this heady air of possibility. Oh air. Oh air.

This may be the first breath I've taken in 21 months.