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. 

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.

I peed into a cup. If there is a world championship of peeing into a cup without spilling or overflowing, I am that champion.

But I know what I'm missing.

Things keep falling out of my head. Mostly they are little things, the loss of which has no impact on my life, but that I am poorer for the loss.

Better now I can hear myself. The glass between me and my howling heart is thinner. This combination of medication has raised me and kept me above the quality of mind that can only be described as “surviving".

There is always a price.

My memory.





These things to fall out of my head may be small, but, they are important. And now they are gone.

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.

The Auxilaries of a Mental War

Knights of Seroquel

Quetiapine [Seroquel] is indicated for the treatment of schizophrenia, depressive episodes associated with bipolar disorder, acute manic episodes associated with bipolar I disorder (as either monotherapy or adjunct therapy to lithium or valproate), and maintenance treatment of bipolar I disorder (as adjunct therapy to lithium or divalproex)...

It is sometimes used off-label, often as an augmentation agent, to treat conditions such as obsessive-compulsive disorder, post-traumatic stress disorder, restless legs syndrome, autism, alcoholism, depression, Tourette syndrome, and has been used by physicians as a sedative for those with sleep disorders or anxiety disorders.

At very low doses (<25 mg), quetiapine acts primarily as a histamine receptor blocker (antihistamine)...

They prescribe this terracotta-coloured tablet to treat almost everything, from the look of it. Everything related to a fucked up mind, at any rate. And hayfever.

I do not have a prescription. The doctor dropped a sample box of 10 in my hands. "One of these every day," he said. "Immediately. It will take the edge off until the Cymbalta kicks in."

I think more appropriate wording would have been, "It will take you off the edge."

When I got home I immediately googled everything I could about the drug. It had taken a lot, too much, to get to the point of asking for anti-depressants. What I learned left me crumpled and weeping. Side effects. I didn't want to take it. I was afraid of taking it. I was afraid of what would happen if I didn't.

I started taking it.

The first tablet hit me like a brick. An intense sleep that was extraordinarily difficult to come out of. The struggle to simply gain a semblance of wakefulness left me without the resources to sit up, let alone get up. Gravity could not decide what angle it was aligned at. I had to sit down in the shower. That wasn't enough. I had to get out of the shower, throw a towel on the floor because I couldn't dry myself and lie there, hoping that soon, I would have control of my body again, and soon, the world would stop moving.

I was slow, incredibly spacey for the day.

At night I forced myself to take a second tablet.

The morning was still hard, but not as bad as the previous. As the days went on, the side-effects reeled themselves in. In a couple of days I was off the edge. I enjoyed knowing that taking the tablet would guarantee sleep.

On the Saturday, a week after I'd started taking Seroquel, I could not move. I did nothing but lay on my bed in a strange fuzzy stupor. My brain filling up with serotonin, I'm told. I cut Seroquel to a half dose.

After a few nights on a half dose, I fell apart. Upped the dose again. Halved it again. Determined to be clear of it before I ran out.

On the follow-up appointment a week later, I explained I'd stopped taking Seroquel all together and hadn't slept for three days. The doctor said that shouldn't happen, Seroquel doesn't work like that. But it did. I saw 4am three times in a row.

His solution was to give me another three sample packets.

Sappers of Cymbalta

The main uses of duloxetine [Cymbalta] are in major depressive disorder, general anxiety disorder, stress urinary incontinence, painful peripheral neuropathy, fibromyalgia, and chronic musculoskeletal pain associated with osteoarthritis and chronic lower back pain.

Duloxetine [Cymbalta] failed the US approval for stress urinary incontinence amidst concerns over liver toxicity and suicidal events; however, it was approved for this indication in Europe.

"One of these a day, in the morning," the doctor said. "This will take a few weeks to kick in."

My prescription was for 30mg. I went home and read and read and read and cried. There were so many risks that came with the drug, more than I had the strength to face. I couldn't take it, I couldn't not take it.

I took it, and told no one.

Side effects were immediate. Incredible bouts of yawning, accompanied by a super-saturation of oxygen in the blood, so that I had all the symptoms of hyperventilation without hyperventilating. My fingers and toes were constantly fizzing and thick, perpetual tight-wound energy in my belly, all of which increased dramatically if I should begin talking for any length. Laughing became quite the ordeal. My appetite vanished.

I was off the edge, and lost in space. But off the edge. Off the edge.

When I stopped the Seroquel entirely, and a few days had passed for anything like withdrawal to wear off, I was okay. Just okay. Merely okay. Solidly okay. Lower than the odd bout of mania that had struck me when on both drugs, not without sudden squalls of horror and despair, but far more level. Able to cope with the work place, the supermarket, the world we live in. I was sleeping okay. The yawning never really stopped, and my mouth is continually dry, but they are minor side effects, considering.

Cymbalta is slower to work, more insidious, but gentler too.

My dreams are stronger. This I love.

Siege Engines of Cymbalta

On the follow up appointment, the doctor issued me a new prescription for 60mg, to begin when I'd finished my current one. He didn't say why, and I, out of my mind, didn't ask.

The first day, my stomach began churning, and without warning I was vulnerable. Anxiety and dread. I went home early.

I could not sleep. At all. The following day this was augmented by the onset of restlessness. My bones ache. My muscles constantly feel as though they are about to spasm. I feel forever just shy of the peak of some massive eruption, and explosion of mayhem and energy and pure flailing.

Insomnia is no stranger. I could deal with insomnia. But restlessness? I don't know restlessness. Apparently I've taken for granted for 29 years my ability to sit or lie still and and comfortably.

It slays me. I thrash and thrash and thrash, mind and body together, doing absolutely nothing at all.

Nights of Seroquel

I am glad the doctor gave me these spare packets.

Half a tablet is not enough.

I take whole tablets. Last night, I tried a half dose. Just shy of midnight, I got up to swallow the other half. This morning, I was driven from bed when my body began to ache and the urge to thrash made my eyes hot.

...The Counsellor Asks Questions

I support the idea of counselling entirely. It does real good for a lot of people, guides many in the processing of difficult realities. I've encouraged many to pursue it, stick with it, simply consider the idea as an option.

Personally, I hate counselling. The idea is abhorrent. The verbal articulation of my emotions and thought processes is...look at the title of this blog; Silence Without. Because I cannot speak my demons aloud, and that is what counselling involves. There are a myriad of other reasons which I will not get into here, but suffice to say, counselling is exactly what I do not want.

I accepted the referral.

He listened well, very well. A good listener is an incredibly rare treasure. He paid good attention to the words I chose. The usual tactic of sitting without speaking to goad me into filling the silence of my own volition didn't work. I fear no silence. It was he who eventually broke every silence. I couldn't look at him, and when I cried I didn't want a witness, and would spend those hours with my face covered with my hands.

All his questions I answered frankly, not offering more than what was requested. I was trying, and that was the best I could do.

We did not agree philosophically. He belonged to a school of thought that focused on positivity, with a motto similar to, "You just gotta believe." His aim was to restore hope to me, to find a positive way out.

"There must be a positive way through," he said in the first session.

"Does there?"

He was taken aback. "Yes. There must be."

I wasn't challenging the idea out of despair or pessimism. I merely acknowledge that there is no 'must'. We not owed anything. I may get better. I may not. Both are equally possible.

I had my last appointment with him on Tuesday. Because he pays attention, he asked if I thought I had got any benefit out of these sessions.

In the balance of things...what benefit there may be is outweighed by the dread and anxiety they cause. These sessions leave me wrung out. They bring everything to the surface, and it takes me a couple of days to recover before I can function properly as a social creature again, and then I simply move on to dreading and stressing about the next session. I am not in a position of strength. This is more than I can cope with.

And no, I did not think there was much benefit to be had. There was nothing he had said that I had not already considered myself.

I tried. Knowing my own bias against counselling, I tried, and gave more than a good shot at it.

I never want counselling again.

What am I?

I'm on medication for bipolar. The counsellor said he saw something that looked like Post Traumatic Stress Disorder in me. I can function. Am I okay? My hands have been much worse these past few weeks. I'm on prescription pain killers too. The door trays of my fridge make me look like a junkie. I have the alarm set for 6.30 on the weekends so I can take my dose on time. Grocery shopping is impossible with no appetite. Is there a future here?

No.

Something has to change.

EDITED TO ADD: I left this post slanting somewhat in the wrong direction. Apart from more coherent dreams (which I adore, but for people who are used to actually sleeping while asleep (MADNESS!!!!!), instead of saving the goddamn world, they can be the worst side effect of all; see Dooce's experience with Cymbalta, which led to her eventually switching medication), the Cymbalta appears to have sorted out my blood sugar, or metabolism, or whatever it is that our fuel systems are based on.

Previously, I had shyte blood sugar. I rarely had the opportunity to be hungry as a blood sugar crash would make itself known before minor things like an empty belly had the opportunity to occur. Some people get grouchy when they're hungry. I get faint, weak, dizzy, and pretty much live in constant fear of fainting. When that happens, I have to eat something, anything, right then. If I'm out and about I make sure I have food on me all the time. That's how ridiculous it is.

Now? Dude. Apparently this is how most people feel? You know, all...normal and...not about to collapse.

BIZARRE.

I am so totally okay with this.

And all side effects aside, the meds are working.

There is distance now between me and the horror, enough distance for me to cope with being a living waking entity, to take care of myself and even, occasionally, take care of others. I am not a zombie. (Well, apart from the tail end of the Seroquel in the mornings, but I was never a bright spark in the mornings anyway.) I feel. When I laugh, it's because I am laughing. I can have a good time and carry that good feeling away and inside me for the rest of the day. I can be upset and angered and brood like the champion brooder I am.

I can do all that, and I am not on the edge.

I don't want to be medicated. I remain afraid, very afraid of what the drugs are doing to my mind and thought processes, especially as I cannot control them and do not entirely understand how they work.

But, they do work.

I am alive because of I am medicated. I am alive. Because of that, I will not regret taking medication, nor will I be ashamed of it.

This Is Not Patience

Useless I

Breakfast has never been a regular feature in my diet. Unless it's special, like eggs benedict or pancakes, it doesn't exist. Recently I've been forced to add it to my day. I dislike the weight it has added to my hips and belly. I don't need any more cushioning, but my stomach does.

Most mornings I take a painkiller before I've finished getting dressed.

Job Interview

He said: "So, what qualities do you bring to the position?"

I said: "That's a pretty broad question."

She said: "This is your opportunity to tell us how great you are."

I said: "Oh! I'm awwwwwesome!"

The above conversation based on a true story. "Based on" meaning "word for word".

Useless II

Some mornings it doesn't matter that I've eaten, or what I've eaten. Some mornings my body won't have a bar of it.

It usually hits on the train into the city; a slab of nausea; an intense cold sweat that leaves me dehydrated in seconds; and that heavy distance between me and my body; all the harbingers that indicate I am about to collapse and/or puke.

Speaking of Puke

So I suck at breakfast and I suck at dinner, but I take lunch very seriously. Usually because by that point I'm starving.

If it weren't for habitual thinking I would have used lunch to illustrate this post, but to be honest, it would have been equally tedious. I cook batches, freeze batches, and eat the same thing every day for weeks on end.

The last batch I cooked was soup that deviated from my normal vegie soup, so of course it was scrotum. I've been eating poo soup for months.

Last week I decided to experiment again and have a go at making dal makhani. Which would have worked fine if I had black lentils instead of black beans.

Oh well. Can't go too bad with all those spices.



All last week, except Friday when I had peanut butter toast.

Useless III

Like today.

Tempus Can Go Fug Itself

I feel I should comment on the changing light, the newly opened sky, and the longer warmth in the days. They say that people who live with marked seasons feel the passage of time deeper than those close to, say, the equator. Any other time I would have rolled all over this unwrapped season, welcomed that passage of time. Not now. I have had to draw myself in close to these passing seconds. I cannot support the weight of my future, or the burden of my history, I've had to recoil and instead of smearing myself across time I am a small concentration of awareness. Here. Now.

Useless IV

The trials of living a lone are never so emphasised as when you are incapacitated.

They Won't Be Silent

When the sun is out, they come out. And sit in the court yards and cafés. And talk. And laugh. And talk. And talk. And talk. And their talk comes in my windows, and even here I can't escape the world.

Useless V

I need a doctor's certificate. I can't burn through my sick leave so fast, or I'll be forced to start taking leave without pay, and I can't afford that.

The medical clinic doesn't bulk bill. The money left in my account is needed for a train ticket.

The Best of the Horrible

Best of ASIM vol 2: Horror available for download as a PDF, and featuring Bitter Elsie Mae, a story I wrote about a vengeful ship. It made Ellen Datlow's Honourable Mentions. Not bad, little story, not bad.

Useless VI

I take these pills and sometimes they work and I can do my job, and sometimes they don't and I lose sick leave and time, and who knows what they're doing to my kidneys, and they constipate me and make me put on weight, and ultimately, they make no difference.

I still can't write.

Useless VII






Useless VIII

I can't bear the future or my past, and I can't say the present is easy to carry either.

Useless IX




Useless X

Is it self-pity if you can't-

Useless XI











Useless XII

I'm just lying here with a bucket for company, picking out these words a letter at a time.

To The Knuckle, Ya Hear?

After nearly a week back in Oz, I think I’ve expelled the last of the junk that China, Tibet and Nepal laid in my nose.

Most travels become centred on the excretions of the bowel, whether or not this is admitted in polite company. Mess with the diet, never know where the next loo is and have to conquer squats and cesspits – it’s all about the poop.

This trip was equally focused on the excretions of the nasal cavity, as you just can't have too many orifices expelling at the same time, and upon which I shall elaborate upon now.

Beijing

Beijing has no sky.



That is the first photograph I took on Chinese soil, the first thing I saw upon leaving the airport, and yeah, I totally freaked out at the thought of breathing for the next few days.

I’m exaggerating. Mildly. There were blue skies while I was in the city.

But the pollution. The pollution! Blasphemy.

At Tiananmen Square they raise the Chinese flag every sunrise, and lower it every sunset. It’s quite the ritual, with a squad of the People's Liberation Army marching out from beneath Chairman Mao’s portrait over the gate to the Forbidden City, perfectly choreographed so they take 108 paces per minute, 75cm per pace, and timed so that the flag comes down exactly when the sun disappears below the horizon.

It would be more impressive if the sun had not disappeared behind the pollution half an hour before hand.



There it goes.

I commented to a local who was “practicing his English on me” that no one would know if the timing was out with the pollution hiding the sunset. He told me that oh, the air pollution had improved so much since the 2008 Beijing Olympics, when all the big factories had been moved away from the city. It was so much better now, amazing.

This was an improvement?

Don’t think I did a good job of hiding my horror.

China Proper left black boogers in my nose, solid like concrete. Took some blowing and then poking to get them moving.

Tibet

The Tibetan Plateau is free of China’s air issues, much to my relief. It is, however, dusty.



No, I mean it. The whole country is dusty.



Seriously.



Really.



We spent a day in this dust storm. There was more dust than air about, visibility was frequently zilch and we spent a good deal of time stopped, hoping no one ran into us while the dust washed up against the windows like water.

And that shit gets everywhere, and you would not believe how much dust your nasal cavity can contain.

The air is also incredibly cold and bone-dry. Combined with the altitude, I had a permanent blood nose. No major gushing, but a perpetual ooze.

In this regard, the dust was useful. I let it collect and act as a clotting agent. While the others were occupied with clearing their noses at every opportunity, I only got the tissues out of an evening, and proceeded with the excavation before bed. With body systems slowing down with sleep, the body struggles even further getting oxygen around at altitude, so you need all the space in your nose you can get.

This did mean that I was blowing a day's worth of junk out, and oh my lord Buddha. Some of those chunks were as big as my thumbnail, no exaggeration. Green and brown, and with blood clots. First time I was afraid I'd blown out a bit of my brain. The stuff down the nostril passage was dry and caked on too. It was amazing. Seriously, could have used this stuff as mortar in the Great Wall.

Wasn't just the poor soft foreigners either. I have a very clear and distinct and unfortunately precise memory of witnessing a woman who ran a food tent snot into her palm, try to wipe it on her shoe and then turn her hand over to inspect it when it didn't come off. I saw. Oh, I saw. It was fucking huge. Then she gave me my pot noodle.

Nepal

Coming down from altitude, we were told we'd be near high with oxygen. Oxygen!

This was a lie, as the water to oxygen ratio in the air was about equal. Plus, Kathmandu Valley does not boast particularly clean air either.



Left over blood nose from Tibet plus pollution, but less dust and actual moisture in the air meant a downgrade in the alert status of what came out my nose, which, given that normally nothing comes out my nose, still meant those boogers had punch.

Didn't need to know all that?

This is the real world, kids. Snot happens.




Nose is still bleeding, actually. I think it's a touch traumatised.

Meat

Today I did not go to work because I felt rotten. This happens exactly never, as I have an immune system that is never defeated, and because I'm one of those horrible people who just goes to work even when feeling a bit crook.

When the alarm went off this morning, I felt ghastly enough to decide that yes, actually, sleeping for the whole day was in everyone's best interests. So I did.

I haven't eaten for more than 24 hours. Considering my current condition and two seconds spend pondering my recent diet, I figured I probably needed some iron, so meat was the go. To the shops I shambled, and spent a lot of time staring blankly at the shelves and counting the money in my pocket because right now, counting and decision making are beyond me.

Eventually I found some 'spinach and meat cannelloni' on discount. Spinach AND meat! There's some good hearty iron. And I can afford it too, bonus!

Having just consumed a couple, I can state with all certainty that there was no spinach or meat involved, and what I just ate was in fact a couple of tubes of cheese.

I'm going back to bed.

For Those It May Concern

Recap: September last year, I went off the pill. I'd been on it for 10 years.

Current Status: I have just started my third period since then. That's averaging one ovulation cycle every three months. Which, to be honest, I'm not complaining about, but it is something to keep in mind if you're in the same situation and planning on making babies right away.

Possibly Unrelated, Probably Not: Insomnia dropped in for a visit Sunday night. I was still awake when my alarm went off, and spent most of the day quite deliriously cheerful. Lack of sleep, probably combined with the usual hormonal skirmish, sent me home with a screaming migraine. I slept till late evening, shuffled about in an unattractive fashion, then went back to sleep for a further thirteen hours.

Probably a good thing I did not plan on discovering cold fusion today.

Food. Food. And, also? Food.

Flavour Enhancer 621

Since Mum's ordeal with bowel cancer, I've become understandably thingy about food. Not in any sort of rational or consistent fashion, I'll admit. I'll look at the ingredients list on a packet, and if there are too many numbers or items in there that I don't recognise, I'll put it back on the shelf. (Of course, if I have cravings or am simply not in the mood to fight with the grocery shopping, I'll just not look and willfully indulge in ignorance.)

My latest illogical decision was against MSG.

Now, I have no problem with MSG. No reaction to it at all. I was practically raised on the stuff, and if I stop eating it I'll probably go into some sort of withdrawal. This decision was not based on all the bad hype surrounding it, but rather, the fact that it is commonly listed in ingredients as 'Flavour Enhancer 621'. It's a number, so it has to go.

Unfortunately, once I decided on this, I discovered it's EVERYWHERE.

And by everywhere, I mean, everywhere. How am I going to live without noodles when all sauces and soup bases contain MSG? Augh?

I found some miso soup in the organic shop around the corner that is lacking, thankfully. It's going to be a slow hunt to find more alternate soup bases.

Stupid neurosis.



Butter

After a successful(ish) writing date yesterday, my fellow tortured artists and I tried out a new feeding hole. I'd noticed "WAFFLES!!!" in huge letters on a window in Melbourne Central earlier in the week. That jedi mind trick clearly works well.

Raganeau Crepes. I don't remember seeing any crepes on the menu, but there were certainly waffles. One of them was soaked in melted butter. Far too much melted butter. To the point where it floated, as butter does, and collected at the top of my skull and gave me a butter headache. A butter hangover, to be precise. I'm surprised it didn't ooze out my tear ducts.

It was a mistake, a glorious mistake. When enough time has passed and I've forgotten what a mistake it was, I'll go make that mistake again.



Communal

Dad decided he wanted to go out for dinner. Specifically, to a Japanese restaurant. I told Mum that was not an entirely wise idea. Dad is firmly grounded in the methods of communal Chinese eating: a variety of meat, vegie, soup and tofu dishes in the middle of the table, everyone getting what they want, when they want as the meal progresses. No serving spoons, just double-triple-quadruple dipped chopsticks (this is probably why my immune system is so ridiculously overpowered). And rice. Rice for everyone. Rice without saying. Rice is the foundation upon which all other food rests, it brings meaning to the meal, it doesn't even get mentioned in preparation because rice is rice is assumed is rice.

Japanese cooking can work like that, but generally doesn't. There's a different methodology to the preparation and presentation. While multiple dishes still feature, each person is generally granted their own portion. All meals are insular. There will be no fights for the last piece of chicken.

It doesn't matter how many times Dad encounters this, he is still surprised when the dishes don't come out prepared for sharing, and rice is not automatically served. He does not approve of this, not at all, and then confuses all the serving staff with his attempts to turn a Japanese meal into a Chinese meal featuring Japanese cooking.

In light of all the cultural hooha I've blogged about recently, I feel I should mention this. There are some cultural differences that are irreconcilable. Heh.

NOW I HAVE YELLOW FEVER AS WELL.

Cholera doesn't taste that bad, you know. They made a huge fuss about how it was going to taste awful, and gave me a lollipop, and made more fuss. It tasted a bit like salty lemonade. Kinda like it. The nurse told me I was a freak.

Apparently it's typhoid that does the wreckage - makes you feel like utter shyte and gives you a massively sore arm to boot. Not feeling too bad now. Yellow fever is also cheaper than typhoid. [insert sigh of relief here]

Good Karma Right In The Vein

MELBOURNE,

Did you know that this Saturday is International Independent Record Store Day? No? Actually, neither did I until a week ago. It is only my duty to play chinese whispers and pass the message one.

Of particular note, I'd like to draw your attention to Polyester Records, who on top of celebrating their independent record store-ness, are doing a charity drive. 20% of all proceeds for the day will go to the Cancer Council Victoria.

So if there are a couple of albums you've been meaning to pick up for a while but just haven't got around to it, Saturday is the day to do it. Not only will you be supporting the musicians (something they always appreciate), you'll be supporting independent record stores (something they always like, and we must keep these babies alive or be bereft of so much joy), and you'll be donating to an organisation that is truly worth donating to. That's enough good karma to last you at least until the next time you jay walk.

I've carved a slab of my pay out for this day. A list of targets has been compiled. It will be ludicrous.

While this isn't NSFW, I don't think it's entirely SFW.

Gakked from Deep Sea News; a video of flat worms mating.

It's known as penis fencing, and the worms are the swordsmen. From the midsection of each flat worm, double daggers protrude. Each dagger is actually a penis.

Dude. Dude. I totally lol'd. Probably because I don't see a lot of difference between flat worm and human sex. The only difference being, half the population is unarmed.

Gakked from Zooillogix; seed beetles have the scariest penis in the world.

A new study of C. maculatus seed beetles has proven the worst case scenario for most men: size and in this case the number of painful, injuring spikes on their penises do in fact matter. The C. maculatus have a series of spikes and barbs on their members that, during sex, become embedded in their mates, acting as anchors of sorts.

AAAAAAHAHAHAHAHAAAAAAAAAaaaaaaaa...No comment. I don't need to comment. It speaks for itself.

Penis. Funny stuff.

Shall we talk about something else? I'm going to talk about my vagina. I HAVE MY PERIOD. A real, honest to goodness tides of blood period! I'm a real boy ovary storage cupboard!

This is my first proper period since going off the pill in September. Six months, if you're counting. Prior to this, I've had two other half periods, which weren't really periods, wimpy little messes they were, barely worth the effort. Bah. They came with no other symptoms either, just a mess.

This period I class as 'real' precisely because its coming was heralded by the Harbinger Headache, which wasted no time turning into a Muthafucking Migraine. Had another mild headache today.

Bugger. Was seriously hoping going off the pill would get solve the migraine issue. Oh well.

Have also been cramping, which is an entirely new and exciting experience. And by exciting, I mean uncomfortable. I am hoping these do not get worse with time.

Other than lacking the whole monthly bleeding from the vagina thing, going of the pill was a simply super move. Depressive traits have lessened. Somewhat. That they have lessened, but that I have not suddenly become a little ray of sunshine, indicates that I'm just stuck with this lousy personality. Oh well. It's worth it. Every little bit helps. Never ever ever ever ever ever going back on the pill. Which means condoms for the rest of my life. Oh well. It's worth it. It's so worth it. I bounce back faster. I let go quicker. I don't sink so fast. These things still happen, but it's worth it.

Tomorrow is a great day for a hangover.

"You can swallow a pint of blood before you get sick."

Well.

That was a total non-event.

Where's the pain and grogginess and pain and disorientation and pain and distress and pain and pain? I feel fine! I was apprehensive about waking up all druggy in a strange place, but to be honest, it wasn't any different to any other time I wake up. I really am just that bad in the mornings. I'm shocking, I'm dumb, dopey, off-balance, incoherent and pretty much a primordial mass, and as unattractive as that is, it's great practice for waking up after surgery. The guy beside me wasn't nearly as calm. Apparently waking up freaked him out.

Am not in pain. Some bits of the jaw are bruised and sore, and only when I poke them. So I'm not poking them. Easy. Have a totally square head from the swelling, which is hilarious.

Unfortunately, I missed out on a great photo. I had a nap in the afternoon, and the gauze in my mouth soaked through with blood. When I got up, I had blood all over my tongue, through my gums, in my teeth, clots in the gauze and had dribbled blood out the side of my numb mouth. The just-woken up dumbs meant I cleaned up before thinking of my camera. Dammit! Such a wasted opportunity!

I also forgot to ask if I could keep my teeth. Bugger.

There's no grogginess going on. The pain-killers are non-drowsy, and what with the nap, that means I'll probably have a right shit time getting to sleep tonight. Part of my lower lip is still numb, but everything else is awake. Something in the meds is messing with my joints though. Weirdly enough, my wrists are tingling. Full on and hard out, like they're pumping lemonade. My knees started too. Nothing else is doing so.

No nausea or delicate stomach either. Dad made up some congee yesterday, and I ran it through the blender to make it smooth. Tasty stuff. Ice cream didn't trip anything either. Clearly, I have guts of steeeeel. The bleeding has stopped too.

My secret identity is Wolverine. I have mad regenerative skills.

But I must still make the most of this, and pretend I'm much worse off than I am, and vege in front of the TV. STAR WARS MARATHON GOGOGO.

Socket

Getting my teeth pulled tomorrow. I imagine it will be not at all like this.

May try to blog coming off the drugs, just for the hell of it. Or, may be out of commission for a while.



Never you fear, sweet readers, Le Red Fin will take care of you. I will not allow her to indulge in asshattery whilst medicated. I stake my honor upon it, much as I would enjoy seeing her make an asshat out of herself, but oh, it is a shallow joy, since it comes so naturally to her...

oh, she found a hangover to hide under

Letters from India: Serving the Goddess looks at the lives of current day devadasi, a class of sacred sex workers who ply their trade in the name of Yellamma. It is devastating, the lack of choice many of the women who become devadasi had, and then heartening, the way some of them use their position to their advantage and improve things not just in their own lives, but that of friends and family, and then devastating again, because no matter how they try, it can only end badly.

On a Wednesday Night

Each text message I receive is a Big Event, as they're as rare as rocking horse shit. This text message is from my mother, and it reads "So this is what the inside of a black hole is like. Looks familiar".

I stare at this message for a very long time. My mum just sent me the most depressing text in the history of history. I don't know what to do. Should I go home? Today was her chemo-on day, maybe she's having a bad time.

No, this isn't mum's style, not her style at all. I have no idea what she's talking about. But what if she's flipped out, like really flipped out so much she'd send out of character and emo as all fuck text messages? This is serious. Should I go home?

No, really, no that can't be it.

But-

Wait.

"are you talking about that collider thing in France?

"Yes. It happened about 2 hours ago."

Ah.

A Yankee In London: From Hell Chapter Four Walking And Riding Tour is the report of one person following the steps of Sir William Gull and his driver Netley as they trot about London and Gull freaks poor Netley out with his vast conspiracy and ritual talk. It goes through many churches and sites of significant cultural, historical, and religious events, and on reading the chapter it is hard not to believe the whole shebang. Taking the tour today sounds slightly less magnificent than when Gull and Netley did so, but it remains an interesting read. That particular chapter of From Hell is my favourite, seeing it mapped out in photos is a treat.

On A Saturday Morning

I spend two minutes of my life waiting for the kettle to boil, and that is all those two minutes contain. The kettle clicks. I put the teabag in the cup, and pour boiling water, and little black shapes come whirling up in the currents.

At first I assume they're escaped tea leaves, but on closer inspection they turn out to be ants. Boiled alive. Six of them.

There are no ants in the tea box when I check it, and there were none in the cup. They must have been in the kettle. That could mean the insecticide I sprayed about got in the kettle as well.

I spend another minute of my life considering whether or not to drink this cup of tea, six dead ants and insecticide, and that is all that one minute contains.

As far as merchandise goes, I would love to have this t-shirt. Although the lack of visible collars bothers me. Ties without collars just don't work.

In the Sunday Smallhours

There's blood all over the toilet paper.

Ah.

Surprise blood isn't that surprising any more. There's plenty of reasons to start randomly bleeding from the vagina. This blood isn't the colour of menstrual blood, it's brighter.

Maybe going off the pill brought it on. Maybe stress brought it on. Maybe a night full of alcohol brought it on.

Let's be honest, it's probably all three.

Let's be even more honest, I don't care.

NIN Dazzles With Lasers, LEDs and Stealth Screens looks at the light and video set up involved in the current Nine Inch Nails tour. The amount of interaction between performers and stage set up is brilliant, to the point where they're not just playing instruments, they're playing the whole stage. There's a video included, showcasing some of the incredibly nifty stuff they've pulled off. One thing the video demonstrates is the sort of crowd that goes to these concerts. The dull roar of people not paying attention to the quieter pieces, who are impatient with the soft piano and just wanted to bang their heads up and down, this vexes me. They show no respect to the music. I love those pieces most of all. Were Trent Reznor to tour alone, playing only the piano at tiny little venues, there'd be no upper price on what I'd pay for a ticket.

On a Sunday Afternoon

I put the tea bag in the cup, and pour boiling water. One dead ant swirls in the currents. I watch it sink to the bottom.

Sharks, Velociraptors & Pills

Recently, I realised I've been taking oral contraceptive for about 10 years, another of those sobering even when sober things. When I moved back to Melbourne I stayed on it because it kept my periods shorter and lighter than off it.

But...bloody hell. 10 years? That's my entire adult life. I remember having TIDES OF BLOOD which lasted anywhere from 7 to 10 days, but 10 years? A lot changes in 10 years. Given my chances of having sex are less than zero-- actually, they're even worse than negative numbers. The potential for sex in my life has strayed into the realm of imaginary numbers, oh yes, the square root of minus one.

Wait, I have to stop laughing at my own joke.

Okay, done now. Where was I?

Control of my period, while convenient, doesn't seem quite enough of a reason to stay on it. I'm not travelling, I'm not fucking, and I don't know that the pill has done much to alter all the crap that heralds the arrival of a period. Cramps have never been much of a problem for me. The pre-period headache might have developed under the pill, but I honestly don't remember. Being crazy and cranky is...a negligible side-effect, yanno. I'm quite capable of doing that on my own.

Finally, when it comes down to it, I'm not comfortable with unnecessary medication.

Initial scouting around the intrawebz was eyebrow raising, considering there seemed to be very little adverse affects occurring from long term use of the pill. Eyebrows went up even more when I came across mentions that the pill can increase depression in already depressed people and oh hellfuck really? OH REALLY? IS THAT A FACT? GET ME OFF THIS THING RIGHT NOW.

Plus, my boobs might shrink. Booyah!

That's all well and good, but I don't believe stopping hormone control cold turkey after 10 years is something that won't have side-effects of its own. More scouting brought me to this thread.

I'm only up to page 5 and I'm scared shitless.

There's all sorts of contrary accounts of side effects from the particular brand I'm taking, some people stating they piled on the weight and the depression, other people saying it was great and nothing changed at all for them, and a couple even said it helped lessen their depression. I haven't been able to find any statement regarding withdrawal symptoms when coming of it, so maybe that means what effects occur may be mild...

I don't know what to do, now. I don't have a particular reason to stay on the pill, and I don't have a particular reason to stop taking it. It can take a year for your body to sort its hormones out and start running normally again. There are people in that thread saying 'oh, 4 months later and it's a bit better, I'm still miserable and depressed though.'

I just stopped drowning. I don't want to start again.

I didn't take my pill this morning.

I don't know what I'll do tomorrow morning.

ETA: Aha! Pre-period migraines are pill related. Stoopid pill. Also? Read the whole thread and decided the sensible thing to do is sweet fuck all. Huge intense depression plus dizziness plus fatigue for the possibility of mildly less depression and smaller boobs after a year or more of processing versus staying on something that gives me migraines and might be increasing my depression is...I don't know. It's a decision that can wait till next month. Too freaked out about it right now.