A Stopper For the Guilt Voice

There have been two giant obstacles to me blogging lately.  Anxiety/fatigue is the main one.  The other one is inflamed by the first.  It sits in the shadows till I notice and name it, so it took me a bit to work out what it was.  When I peered closer and thought about it, I identified it.  Oh. That again.  It's guilt, in its broadest sweep.  The guilt that says why do this, where is the value, where is the permission?  The creaking bridge that links those two giant hillocks is an abject feeling of uselessness.  I feel as completely useless as a great hulk of mouldy cheese, purposeless in a world of people busily achieving their quarterly KPIs. A big lumpy Bob Hatfieldy waste of space, while meanwhile my partner works eleventy six hours a week.   And so what right do I have to write?

If I could slice that part of myself out and I only had a blunt knife, I'd consider it.  It's an ongoing issue, this lack of worthiness thang.  I've written about it before on this blog.  It's an ongoing refrain not just of mine but of most everybody who writes, or sculpts, or paints, or does something creative in a culture that despite its Apple ads really does not value innovation from people.

This guilt is the most depressing utilitarianism.  It's the same harsh-scratching grey-robed dullness that says I shouldn't be writing by hand because it's not efficient.  I'm a major fan of writing by hand.  I find that there is something soothing about it so that though the dirgevoice says it's not efficient to write by hand, in actuality, for someone who is a raging fire of anxiety a great deal of the time lately it's quite efficient in the end, thank you very much.  It gives me the space to breathe, for time to slow down, just me and the pen moving across the page, the emptiness of the page something exciting, a container that may be filled by something that I'm not even sure of, even while I'm doing it.

CC pic by Jugni

Efficiency is not worth a great deal if you don't ever get started because you're cowed down by the voice that makes something fun into dreariness and repulsive cubicleness.  Do it this way.  This is the best way.  Only this way.  The world is full of those voices and they're really fucking tedious.  And yet here I have my very own in my own head.  Maybe it's an understandable virus of the age that says the only way for me to produce is to cubicle myself into chunks of bland party cheese.  Maybe I need to inoculate myself out of this idea that the best way is a depressing bland one that vampirically sucks all the joy out. I spent some time this afternoon  reading about well-known writers who also do this apparently insane thing of writing by hand.


I don't even hold to this efficiency-by-number-the-fastest-way-possible-is-the-best-because-time-is-money crap.  And yet it rules over me so much, like seeping wetiko.  It's so boring!  And anyway, why does whether I write or how I write have to be linked to worthiness, based on whether I've achieved enough over the previous week?  To prove my worth of existing on this planet?  Just because that's what I feel like my life has told me doesn't mean I need to hold to it in Inner Susieland.  If the kingdom of heaven is there, and all change flows from our insides outward, then this is exactly the place where I need to be pruning back that particularly ugly bush.  That bush of guilt and holding yourself back because you're not worth it is a giant bush of massive ugly hairy testicles with big bits of pus drooling from them.  Hell, not even pruning that bush ~ chop it down.  No herbicides because Inner Susieland doesn't respond well to those sorts of chemicals.  Cutting into the bastard and chopping out its roots and burning the whole thing in a bonfire that I dance naked in front of afterwards.

Pic by Eris-stock

Sheesh.  That dancing naked in front of a bonfire thing keeps popping up.  Whether I ever had the guts to do it would be another story.  I guess I should head up to Nimbin or somewhere to give it a whirl.  Or I could practice in the backyard.  Burn the house down.

So this voice, that tells me how and when to write, why is it linked to worthiness?  Why does it not ever put forward its case as a way to better health, for example?  If my own productivity is so valuable to it, then why not treat the vessel in a way that will ensure productivity, treat it with care, fill it with the things it loves, as a way to rehabilitation?  Because that would be a bleeding-heart left-wing type of action, and that voice, if it was going to vote, would surely be right in on this Abbott government and whatever other austerity-measure-forcing far right-wing governments it could find in the world that punish the less so the more can keep gorging.  That voice doesn't actually seem to be particularly focused on achieving good outcomes via the best way, but just on smashing me in the face with guilt.  So why listen to a voice that's so lacking in imagination?  I mean, I have to listen to those sorts of voices from the culture all bloody day.

Maybe that cultural familiarity is why I'm not tuned into switching that voice off quicker.  After all, it's not just simply a voice I took from the culture, but one that came ready-packaged from within the bosom of my own family from as early as I can remember, so why the hell would I not have created an extra deep rut for it to burrow into?  And the size of the rut is probably why I do not sometimes think earlier that it's really simply a case of reaching out with my trusty internal remote and switching that fucker's voice off.

That's it.  Simple.  I'm not listening to this thought.  Switch off.  And it is that simple.  But it's not.  The exhaustion comes from the relentless dirgelike way that it's back again the next day, and when you're a little exhausted to begin with you're weakened, dear boys and girls.  Susie is life-tired.  Sometimes, all the will in the world can't rise up because the plain exhaustion is there already, disengaging me from reaching for the remote and switching off an energy-draining voice.  It's the relentless surrounding culture, it's Tony Abbott, it's the ongoing lack of response from editors when I put my all into pieces and pitches that aren't accepted.  It's the inability of others to know what I need to do to be able to do even the little that I do.  It's the constant rushing drain of return not exceeding investment.  That's why some days I can't even get to the remote at all.  All sick people know this space.  That's why the breezy recommendations from those who are not here are so teeth grinding to hear at times.

Despite the beliefs of the relentless positivity brigade, switching off the negative voices isn't the end of the story.  You could be excused from thinking, by reading the derisive way we comment to each other on online news spaces, that everyone is simply lazy, that willpower and force and application and a good positive outlook are all that's needed to get you to where you need to go.  It's the neoliberal sexual fantasy.  That way, whatever misfortune occurs to you can be blamed on you. But it's not that simple.  Never that simple that a satisfactory result of a complicated situation is going to be something that would spurt from the same spout as the sort of kneejerk reactive blamethink we see on the net, and that we may even engage in ourselves ~ even if it's only from inside our own heads to ourselves.

We need more than willpower and application, good though they are.  We need new containers to pour ourselves into.  Completely new jars, whose frame will shape whatever new society we are going to come up with next.  One that's worthy of us pouring ourselves into, and that recognises our inherent worth.  Those sorts of containers contain natural stoppers that block out those voices that are so destructive and do so much damage.  The ones that say some should get at the expense of others.  There's classier containers than that.  Like the one that says that what happens to the least of these is what happens to the most of these  That's the type of container I'm dreaming of.

CC pic Byrev

The Daily Waffle, Thursday Edition

I was going to have a break from writing here, where barely anyone reads anyway (except for those of you who do, who I like very much).  Sometimes blogging feels like a luxury and I feel like I should turn my energy towards something more worthwhile, like some half-written essays that are collecting a bit of dust on them, being written by hand and then left in piles on the floor or on tables.  I'm feeling encouraged to return to essay writing (I love her so) after a big morsel of recent encouragement from Creative Nonfiction, who think they might have possibly found space for a piece I submitted something like nine months ago and while they understand that someone else might pick it up in the meantime (being a classy and understanding unit that accepts simultaneous submissions) could they hang onto it for a bit longer? Well, I figure another few months isn't going to make much of a difference, and I understand the difficulties that come with being a small enterprise having to plough through submissions from the world over. So while I understand and yet feel frustrated, I also feel heartened that a journal I love is considering putting some of my words inside it.  Even though payment won't extend to me being able to compost some of it back into a new subscription because I'm so bloody broke.

Sigh. Money.  I'll repeat here my mantra that money is meant to be a tool and a device that allows us to share our stuff amongst each other.  While there are lovely cinnamon-smelling whiffs of people doing it differently, money has on the whole become something that keeps us slogging and slugging and serving the machine instead. This HAS to change - and it will. The most surprising thing is that so little has changed half a decade after the GFC, except in pockets of sanity like Iceland, and even then that's not a systemic change but a facing of damage done.

Gazing into my crystal ball of future trends, I'll say expect to see more and more discussion over the next months and years about interest (or usury as it used to be called in the days where it was widely recognized as a great and destructive evil) and the concept of demurrage, which is something I'm still getting my head around but which basically is an element inserted into the economic system which would mean that the longer you hang onto money the more you lose because it will lose some of its value, so that hoarding it ends up becoming a ridiculous concept.  Which means that money again would become something that is meant to flow, not something some of us hang onto in a bid for security, and just this one thing would change so, so, so, so, so much.  We would begin resembling again the gift economics of the past and less the beholden and enslaved populace we are now.

~

I began panicking a little yesterday morning because when I woke up, I felt simply awful.  I felt like the sinusitis that's plagued me over the last year was making another return.  Congested head, dizzy, nauseous.  Buddhism talks about learning to face the things we are averse to, that cause a strong reaction of disgust within us.  I struggled with this aversion yesterday morning because I have had four weeks where I have begun to have a bit more energy, and where I have actually felt happy, and where my creative juices have begun dripping all over the floor.  To have to return to this small and ugly area was not something that I was savouring in the least.

So I tried to work with it.  I didn't want to be there, but instead of being averse I tried to embrace it.  Which meant going back to bed.  I surrounded myself with my phone, with some books, and with some paper and pen, and I wrote a complaining blog post, and I began putting my meandering thoughts down for a competition I've been meaning to begin exploring for a while.  And eventually, the aversion felt like it loosened its grip a little.  I even felt happy while feeling awful.  And so I chilled, drank lots of neem tea, flushed my sinuses with a xylitol rinse, and got through the day.  It was not where I wanted to be, but I managed to chillax with where I was.  I was very pleased.

I'm feeling so much better today than yesterday, but still weak.  But what felt like the beginnings of a full-blown sinus infection I think may have simply been a strong reaction to the smoke haze that hung like curtains all over the place yesterday from several fires on the outskirts of northern Melbourne, most of which have been deliberately lit by people who really need to get a handle on whatever shit they're projecting onto a bunch of innocent animals. 

I struggle so much with feeling so vulnerable with a body that does not work properly.  It really is a vulnerable position to be in.  And yet I keep reminding myself that vulnerabilities can also be strengths.  They help us stay open, and compassionate, and understanding of others who feel the same way.  They slow us down in certain areas, which may be exactly what other parts of us are screaming for.  I guess it's all in the way you get to look at it, if your anxiety levels will distil enough to let you see the sandbars. 

What I Have Learned

• That having a break from the reprehensible Western capitalistic slavery bullshit is very good fuel to keep fighting it for the rest of the year.

• That health is the scaffolding for everything else.  That freedom is more important than anything, and that lack of it is worse than death.

• That Bendigo is a lovely town, and that even if it's only an overnight drive-in/drive-out, I feel like I've had a real, true break.. 

• That I love my partner and that I hate being stuck in a dying artifical system that puts so much strain on both of us, all for the sake of money.  That I feel in my saggy old uterine waters that this year will be less about the grindstone and more about wonderful new change for both of us.  

• That this year I would love to be able to go away on day trips and overnight stays and chill the batteries more than last year because that damn thing is FUN.

• That d-Ribose seems to work for me with my fatigue levels.  How much it works remains to be seen but honestly, when you've been floored with fatigue and held captive for so long in your own body, to see some sort of evidence that you have come upon something which is going to help level out the stamina field so that maybe those bike rides can be a thing of the future is like being reborn.

• That a wonderful idea, which is itself a creative scaffold awaiting the arrival of more and further ideas to put inside it, is a big enough incentive to spark you out of the looming depression that the holidays are over and it's back to the grind (even if the grind is waiting for work that doesn't come while your partner works way too many hours).  Wonderful ideas that look towards the future/past ways of doing things that move past the reprehensible Western capitalistic slavery bullshit present are golden and healthful and full of wholesome flavour to boot.  And they're 99% fat-free. 

Milking It.  Part of the wonderful Little Dudes series by JD Hancock

The Alchemy of Illness

"Much as sick people complain, ofter vociferously, about their isolation and the lack of sympathy from others (we constantly switch doctors and friends in search of the "good ear"), many come to recognize that this invisible wall between the sick and the well protects both.  Laura Chester wrote that "the isolation of illness did not seem to be a bad thing," for she was "left alone to revive the inner seed, which had withered under the intensity of interaction."  There came a point in the depths of my illness when I realized that the people closest to me could no longer bear to hear of my despair, which was inconsolable;  it seemed to short-circuit their capacities for attention and compassion.  After a long night of self-confrontation, I decided to keep that bitter nest of despair to myself from then on - and a curious shift occurred.  While I felt scared, like a lost child whose cries could not be heard, I also felt infused with power, a power I associate with mountain climbers and deep-sea divers, people who face their destiny and know their survival rests in their own two hands.  I felt, to use Chester's words, "my soul opening and strengthening, like a muscle."

Not only is it better for the sick to be left alone at times, it is also better for the well to leave them at times.  Healthy people can be contaminated by the gloom and depression of the ailing if they come too close or have too much sympathy;  it is commonly called burnout in the helping professions.  If that were to happen too often, as Virginia Woolf surmised, "buildings would cease to rise, roads would peter out into grassy tracks, there would be an end of music and of paintings";  for culture is created and maintained by those with the energy, enthusiasm, and idealism of health.  The well need to be well for the world to continue, just as the sick need to be sick so the world can be regenerated.  Each has a necessary job to perform."  Kat Duff - The Alchemy of Illness

I happen to like grassy tracks.  But the end of music and paintings?  Okay then, let the distance remain.

Undermethylation and Overmethylation - the Rollercoaster Ride

Seriously, for someone who is very intelligent, the way my brain often works is really frustrating for me to handle.  I am Speedy Snail - my racing mind drags my fatigued body behind it.  That racing mind also combines with fogginess and blogs and strange debilitations that make me feel like I have the mental capacity of a squid (apologies to squids).

It's a paradox.

Some things just seem to take AGES for me to get sorted out in my head, even though I read about them countless times and experiment within my own body.  Understanding my own symptoms is very hard.  And it's all so complicated to sort out.  If you don't make copious notes of why you're taking a particular supplement, it can be lost to the pre-Alzheimer's fog even though it's a major component of your journey towards health.  Weird.  Being a person with a chronic illness in this modern day is an complex exercise in complete body biology.  In an age of genetic mutations and single-nucleotide polymorphisms and methylation cycles and the ability to test those things and the internet, hours of profitable research can go by and yet the confusion can still remain.  Even if you have a treating physician.

I've been supplementing as an undermethylator for the past year, because that's what I suspect I am.  And as far as I knew, you are either one or the other.  But all the while, I've also been rather confused because there have been times when I have been able to readily identify with some of the symptoms of overmethylation.  And I've also found by experimenting with occasional doses of niacin when I'm feeling overanxious and horridly wired that it's calmed me like a baby being rocked.

It's taken me until the last month to realise that people may be one or the other, but their bodies are still able to flip from undermethylation to overmethylation very easily - thank you, Dr Ben Lynch.  And flip back just as easily, if you know what you're doing (I am learning;  mainly it's a morass of confusion and experimentation and greater learning up ahead).

I have begun taking 5-MTHF, which is an active form of folic acid.  The first week I took it, a light came on and myself returned to myself.  I felt good, relatively speaking.  Still fatigued, still a little anxious, but the depression lifted.  That's the real me.  I need to remind myself and those around me who see me when the light's on that THAT IS THE REAL ME!  Please do not confuse substitutes.  And please do not take it personally when I am irritable, paranoid, suspicious.  Because I simply cannot help it :(

So I had a week of feeling great and then wham - down came the shutters.  Just like the experience of so many others (see example number 2).  But I know I'm onto something.  It's just working out how much my body needs, because taking them overmethylates me even further than I already am at times. 

Some people are so sensitive to certain supplements for whatever reason that they need to start with tiny, tiny dosages - the amount that can fit onto a fork tine, in some cases - and build up slowly, slowly.  It may seem ridiculous that such small doses of things can work - but work they do.  It's why I'm hesitant to dismiss homeopathy out of hand.

And so now for me it's working out how much of that stuff I can take without having adverse reactions.  And just to add to the confusion, it feels like beginning methyl B12 and 5-MTHF has thrown everything else out of whack now too.  All those supplements I have been taking as an undermethylator, like SAMe, my lifesaver for depression and suicidal ideation?  Seems to be making me anxious now.  Because SAMe is a methyl donor, and when you're overmethylated you have too much methyl going on (hence the use of niacin - it mops up excess methyl donors going on in the body).  Which is hard to get used to when I have felt for ages that I haven't had enough.  And yet looking back in hindsight, I can clearly see now that the entire time I have been flipping backwards and forwards from undermethylation to overmethylation.

When I woke up this morning I felt the common wired-but-tired feeling.  My mind was racing but I felt sluggish.  Depressed.  Despairing.  Stuck.  Paranoid.  The paranoia is the worst;  it cuts me off from people faster than anything else can.  And so I took 50mg of niacin, and now here I am several hours later, feeling much more myself again, with the paranoia gone.

Orthomolecular medicine is the new kid on the block and it is going to change in the future how people with mental illnesses are treated.  I think with sadness of the people who have developed schizophrenia in the past, locked away in wards, when something as simple as niacin may have helped with their symptoms.

So anyway, all of this realisation about overmethylation proves the point once again that the problem with me (despite appearances to the contrary) isn't so much that I'm not trying hard enough.  It's that I regularly and constantly try too hard, want to go too quick, and don't even realise that that's what's happening half the time!

Back to the supplemental drawing board again.  A drawing board which needs to be wiped clean regularly, in the complex health issues I face.

Economically Unviable

According to the Melbourne Institute’s Household, Income and Labour Dynamics in Australia Survey, the majority of Aussies are better off now than they were ten years ago.  I am not one of those people.

I am in the process of applying for a disability pension.  It is horrible enough filling in page after page of personal details for faceless bureaucracy.  If I wasn't feeling small and losery and ashamed to begin with, this process would instill in me the levels of shame required for those who will claim support from the government.  After all, you cannot make this process too easy or else everybody will be rushing from their cubicles onto the social security bandwagon.

As a further insult to my flaccid confidence levels, as part of my application I have to provide details of my sole trader economic status for the transcription work I've been doing from home for the past three years.  Problem with that is that I haven't been keeping up with my tax payments.  Money’s tight, especially when you have a chronic illness, and managing my money well has never been one of my strong suits.  Which adds to my already flailing confidence because we are expected to juggle fiscal balls along with all the others  imposed upon us by a system that serves those at the top far better than it suits me at the bottom.  If we don't perform well in the areas that have been assigned to us as recognised markers of adultness – like being able to earn dosh – then we are failures, even if we happen to write some pretty good poetry, even if we say so ourselves.

This system pits its slaves one against the other, so that rather than feel sympathy for someone who’s struggling some may well be inclined to look down on me for being a financial mismanager.  It may be an occasion for them to pat themselves on the back, glad that they are not me.  It will also serve the purpose of getting them to focus on me, instead of the system we live under.  It serves its purpose well, (although there are signs of it crumpling round the edges as more and more of us question why the way we live is so completely alienating to us, the tellers of our own stories).

Some may be inclined to be glad they’re not me because of my chronic illness/pension-claiming/tax-dodging status.  Hell, I would.  Being me is not something you aspire to.  Unemployable (apparently, if job applications are anything to go by), I have been out on the edge of financial vulnerability for years.  I am the type of person who perpetuates that starving artist in the garret scenario by stupidly choosing as their passion writing, which does not pay well, if at all, and which is notoriously difficult to break into, requiring a hide of steel that was not made available to my genetic subset.  But then again, we do not seem to choose our passions;  they choose us.

I am the type of person who feels sorry for themselves, who complains on my blog about my situation instead of sucking it up and getting on with it.  But that's the problem with chronic illness – you can't always suck it up because you're ... well, you're not well.  I am the type of person who you cannot begin to understand because my illness is invisible and it's chronic and you can look at me and say, "But you look so well!" while I feel sick, and poisoned, and toxic and unhealthy.  I'm the type of person who is in bed for part of the day and then suddenly cleaning the bathroom at 10pm because I'm feeling up to it and feeling good and I want to contribute, and be useful, not a liability.

But I am the kind of person who has got myself into a bind so that before I can impose my small and defeated self upon the Department of Human Services I first have to fill in three tax returns and lodge them before I make a claim to the ATO to tell them that yes, paying this tax would mean that I would be not buying food or paying rent or paying for medications for myself.  Yes, it surely would, and would they mind it if I didn't pay it at all, or else if I paid it in lump sum installments?  And some most likely faceless person working in the cogs of those machinations will decide my future.  And whichever way it pans out, I will feel shit.  And some will judge me for not contributing.

Because there’s nothing we’re scared of more than someone else getting away with something we can’t.

But if it makes you feel better, whatever the ATO decides I will feel like I want to curl up into a small ball in the corner, a ball so small that I will complete some amazing magic trick of scientific law-defying and disappear into my very own black hole of economic unviability.

The Dairy Drug

Once, the thought of going bareblack and milkless with a cup of tea filled me with horror.  Now, apart from occasional lapses and semi-regular forays into cheese Twisties, I've been pretty much off dairy for close to a year.  I'd been thinking literally for years that I needed to kick dairy to see what happened, but it was always the milk in the cup of tea that killed my contemplation before it could turn into an intention.  (Because have you ever tried any other whitener in tea apart from milk?  Across the board, they are all plain disgusting.  In a fit of desperation I even resorted once to buying some of that coffee whitener to see if it would help milk up my tea but it tasted like it was made from a combination of floor sweepings and pig fat.  Sorta like a Hungry Jack's milkshake.  Nothing worked - not that, not almond milk, not rice milk, not oat milk, and definitely not soy milk.  Nothing replaces the taste of cow's milk in tea.  Nuthin'.)

These days, milk in my tea isn't something I even think about anymore.  It's just not an issue.  Though I still crave cheese, acclimatising to black tea has been achievable, and I am proof of something I could not do for years.  Yeah, I know, I know - in terms of accomplishment it's probably not up there, but in lieu of a brilliant career I gotta take the wins where I can get them.  And anyway, quitting dairy (by and large) is a big win.  According to some sources, up to 75% of the population are intolerant to dairy in some form.  And though dairy farmers are struggling to stay in existence, the problem there lies with parasitic supermarket chains holding them by the balls rather than a lack of resource for their product.  That's an awful lot of people who shouldn't be drinking dairy but who are.  I'm happy with myself that I've made the changes, albeit imperfectly, that I knew I needed to make.  Changing your diet is hard.

Like other stupid things I have consumed in my life like Christian conceptions of hell (though they didn't last long and I was skeptical from the start), unintelligent boyfriends and cigarettes, the wisdom you get when you come out the other side of consumption almost makes the stupidity of consumption worthwhile.  There is a kind of achievement involved in overcoming things you do not believe you can overcome, and if you are not careful you will fall into a vat of Hallmark sensibility when trying to describe it because it's true, you are bigger and stronger than you thought you were before, you can cope with more than you thought you could before, and you must stop italicising so many words in this blog post.

(Oh, and as an aside, I must say I didn't have any problem overcoming the thought of hell as preached by modern Christians.  I mean, what a bloody ridiculous concept.  So not only do you send your son to die for the sins of the earth even though everybody's still running around all sinny, but then you negate whatever it was he did by sending everyone who doesn't believe in him to hell?  What sort of an omnipotent loving thing are you?  You sound more like a psychotic sook to me.  But then different religions have different conceptions of hell - as in Buddhism and also even from within Christianity itself.  CS Lewis was a most eloquent speaker of the idea that hell is not anywhere that you are sent to, but a place that you choose yourself, echoing the idea amongst New Agers that there are two camps - those who define their lives with a service to others ethos, and those blood-suckers who live in service to self.  I could maybe even entertain the idea of hell as a place you choose if the rules of admittance were restricted to those parasitic elements who thrive in our current dying Western paradigms, who enjoy extorting other people for their own gain and calling it the market, or profit-making, or the way things are done.  That is service-to-self if ever I saw it).

But anyway, this is a post about dairy, not about my conceptions of hell.  Do keep to the point, Susan.

Which is part of the problem.  Because I am really struggling to concentrate on anything at all for very long today.  And that is probably at least partially due to the fact that last night I went sick eating spinach spaghetti that had dairy/cream in it, followed by a bit of parmesan on top, and then concluded with half a bar of white chocolate.  And now today, I'm all over the place concentration-wise, I've been sorta anxious and sorta depressed and sorta unable to get out of my bathrobe even though it's 3 pm.  I woke up feeling like I was coming down with bronchitis, and feeling sick in my stomach.

Pic of cheeses from Queen Vic Market by Alpha under a
CC attribution/noncommercial/sharealike licence

I've been really good for so long, apart from those Twisties forays (everyone has their limits, right?)  And I've been able to get away with those - I think.  I've gotten used to going without the occasional chocolate eclair, and in a way to the idea of not having cheese though I wanted it, and apart from the occasional mini chunk slobbered after whenever my partner was chopping some cheese off the block.  After a while the thought of eating cheese substitutes didn't fill me with despair, and I got used to putting nutritional yeast on my gluten-free pasta instead of a bunch of parmesan.

Then a couple of weeks ago I started taking digestive enzymes.  And even though I suspect that I have a dairy intolerance that is based on an inability to absorb protein rather than the sugars in dairy and that digestive enzymes as far as I can see don't help with protein absorption, I did begin to notice that lately I seem to be able to tolerate the occasional bit of gluten, the occasional bit of cheese.

Hence last night's ridiculous avalanche.  Like a teenager who had a stubby the weekend before and now thinks he can tackle that four-pack of UDLs this weekend, I have overestimated my body's abilities and fallen into today's mass lethergy and depression-that-didn't-need-to-happen.  And I only have myself to blame.

And dairy.  Bloody stupid practice we humans have developed.  Can you imagine if emus went around stealing the milk from sheep that was mean for their babies?  Stupid dairy.  Stupid.

I must say though that after spending all day feeling like this but still eating last night's leftovers for lunch, even though I felt like shite and nauseous, that this stuff is powerfully addictive and I have been eating it forever, and I am a stupid dolt who takes forever to learn and so I must cut myself some slack.

The thing that disturbs me though in my addiction is that even though it made me feel like that, within a body which is struggling for homeostasis as it is, the fact that I earlier took a few things that seemed to help quell the symptoms only made me think in that druggy way that sees an escape hatch that ooh, maybe it means I can just feast on dairy until it clogs all my arteries and gives me a heart attack.  Irritating thinking.  But still, it's good to know that an extra bunch of digestive enzymes, a dose of betaine (which reduces homocysteine, which is the inflammation response that rises when your body perceives an invader), and some Lactase for good measure, I feel a little better.

And because I'm a dickhead, I probably feel better enough that I won't be able to resist tackling half of the white chocolate bar that's still sitting in the pantry.  I'm a stupid bloody dolt because though it wrenches my guts and depresses my soul and makes me write in italics a lot, I still want to eat it even now. 

We are often allergic to the things we crave the most.  I don't need cocaine.  Dairy is my drug.

Symptoms in Body are Closer Than They Appear

CC pic by Barclakj

So I've had chronic health issues forever, right?  Like, 14 years since I developed glandular fever, which turned into chronic fatigue syndrome, and which has flowered out now into addressing issues of adrenal fatigue, pyroluria and possible genetic mutations.  (Many people with CFS have mutations in the MTHFR gene, and I suspect I do too, and I can't tell you how jazzed I am that if I have to have some sort of mutation it's in the gene that looks like a swear word.  Fitting).

The thing that has always surprised me about my illness is how hard it is for me to get a grip on my symptoms.  So often, trying to identify what is going on in my body, even if it screams, has the feel of looking through the wrong end of a telescope.  For example, yesterday I was speaking to the admin assistant for my CFS doctor who is writing up a medical report for me so I can claim some disability to make things a little easier.  She was asking me questions about symptoms for the report - did I have cognitive issues, did I have fatigue, did I have pain.

I answered no on the pain, even though right at that very time my shoulders were aching like a bastard.  The grand laboratory experiment that is Susie's body is always fiddling around with something, and lately it's been taking two different forms of folate.  Many CFS patients report doing well on them, as do MTHFR people, who often lack the ability to process the standard form of folate in vegetables and food.  After a consult with Dr Google I came across some people who report having problems using folinic acid, which is one of the forms of folate in this latest experiment, along with 5-MTHF.  And so after a few days of achingly sore muscles, I think I can safely say that giving the folinic acid the boot is the subject of tomorrow morning's experiment.

It gets confusing.

So when I was answering my doctor's assistant's questions, I answered no on the pain and then today had to email her and explain that actually, on second thoughts, I do have problems with pain.  I don't have problems every day with pain, but I do a lot of the time.  The report is a worst-case scenario of how you feel on your worst day.  So the pain symptoms go in too.  I feel so weird and silly when I do this sort of thing.

Even though I answered yes to every single symptom she asked me to report on, I still have this problem with applying for disability.  I feel like people are not going to believe me.  As part of the assessment for disability I now have to go and see a Centrelink GP.  And I'm scared that they are going to think I'm skyving, that they aren't going to think I'm debilitated enough because on my very good days I can work part-time and study part-time and walk the dog.  And I feel scared that they are going to think I'm skyving because I feel relatively happy at the moment.  As if I should be on the point of suicide in order to get disability.

It's a strange situation.

Yesterday I was doing some transcribing work, and I was wondering why it was that I was struggling sooooooo much.  Concentration is a big problem with me at times, and yesterday was excruciating even by my ADD standards in terms of being productive.  Did I take into account the fact that my shoulders were aching harder than they have in a very long time?  Not really.  I mean, I was aware of it, but it was like the synapse in my brain between cause and effect was old, dangly and stringy, like some Christmas lights from 1943.

Weird, that.  It happens all the time.  The strange distance between that which is so close to you that you sometimes cannot recognise what has crept up on you until you're on the couch.  Even while in another part of your brain you are achingly aware of it, and it is filling up all the spaces that clay and paragraphs would if that particular symptom wasn't there.

Like I said, it's weird.

So for those of you reading here who are struggling to manage yourselves, to understand what's going on with your body today, and to pace yourselves with whatever your health is throwing up at you, take heart ~ it hasn't become second nature to me either.  Not even after 14 years.

Writer's Block

Public domain pic

My body has gone backwards.  I'm really tired of this.  I can't tell you how many thousands of dollars I have spent on supplements and tests over the years.  Thousands.  I am struggling to work enough to crack 200 bucks a week.  So going on sickness benefits will mean that my income will effectively double.  Woohoo!

Health going backwards and fatigue flaring at the time when my partner could do with me contributing my financial share, cracks open the guilt vault (and I could drown in there), makes me feel more stressed, and then my adrenals have to deal with more, and so the snowball rolls.  This has been a snowfield I'm used to playing in in one way or the other.  Being back here though in the midst is the closest thing to hell I can think of.

What do the Buddhists say?  There are four different sorts of suffering?  I can't remember what the other three are but the fourth one is "Not being able to get what you desire."  That's me, that's my life, that's the roadblock (which granted I didn't put there.  But it's my responsibility to move it).

How do you say internalised oppression?  That's me.  I think The Secret has a lot to answer for but I do think there is several glimmers in there that are relevant.  I do think that in a certain way the reality we have is the one we've created.  And I have created, against my own wishes, roadblocks to being able to live the way I choose.  Nobody stopping me.  Just me.  And so it's a couple of rounds of EFT tapping every day, homework from the therapist:  "Even though I believe someone or something will always stop me living the life I choose, I deeply and completely accept myself."  EFT rocks.  It moves and shakes things.  I don't really believe it's going to move or shake this issue or others.  Hence the other round of EFT tapping about "Even though I don't believe anything will change ..."

Learned helplessness, anybody?

I need to get my website up and running.   A digital container to put the work in, you know?  I have the idea for a logo.  Her name's Speedy Snail.  Lots of swirls around her.  Lots speeding on in her head, the body snailing along behind.  I went back to bed today and spent several hours reading.  Nice.  It's what I need to do.  But I fight it.  Because I feel totally useless.  I don't know how to not be well after 14 years.  I don't know how to do it gracefully.  I just don't.

I can feel this same sort of self-sabotage going on in my writing career.  Two different arenas have published two of my essays in the last six months.  Have I resubmitted anything to either of them?  No.  I feel a reticence to do so.  I even queried The Big Issue about whether they'd be interested in another My Word piece about roosters.  Yep, send it on through, Lorraine says.  Have I?  No.  Granted, I haven't written it yet and though I haven't done so, I've been writing a fair bit of other stuff, which is heartily inspiring.  I remember once, years ago, I wondered if I ever would clear the river.  I had writer's block - a desire to write but I didn't know what to write about.  These days, while I still have those times where I don't know what to write about, I know what fixes it - writing.  Anything.  And then within a day the river's rushing again and it's not so much not knowing what to write, it's choosing what I want to write most, and having the energy and time to do it.  Nice, eh?

But that self-sabotaging thing about not wanting to submit stuff to places I've published in before?  I don't know what that is.  It's in one of the deep caves of my unconscious where I see it's effects without knowing it's there.  Those unconscious beliefs are funny little things when they start to become conscious.  There's a part of you that is looking in disbelief at this thing you've just realised you think.  That you've thunk maybe for years.  And while part of you know that this is true, and that bringing it up to your conscious mind is the first step in clearing it away, another part of you sits numb disbelieving it all.   This being human is not only a guest house, it's a weird one.  A Tim Burton guesthouse with creaky bits and doors that open onto black holes and awesome oak staircases and coolness.  Sort of like that teddy bear video I posted on here yesterday - a little gross, a little creepy, but really, in one way, rather sweet (I mean, who doesn't want a bon bon layer?  Yeah, I know, I know, there can be problems with the bon bon layer, as teddy's operation so amply demonstrated, but that's what teddy doctors are for.  And good teddy nutrition).

That self-sabotaging thing about not wanting to submit stuff to places I've published in before is a known unknown.  It's one of the things I say to myself so fast and so deeply in the undergrowth that I don't feel it or see it or feel its swish as it goes by.  But I see the effects of it.  In this post, in the Virginia Quarterly Review, Erika Dreifus reviews the sorta recently released book by Facebook COO Sheryl Sandberg.  Titled Lean In:  Women, Work, and the Will to Lead Erika has this to say in response to it:

In this chapter, the overall message is that women suffer from underestimating their abilities more than men do. “[F]eeling confident–or pretending that you feel confident—is necessary to reach for opportunities. It’s a cliché, but opportunities are rarely offered; they’re seized.” From refraining from raising their hands in the audience to sitting on the sidelines rather than taking seats at the conference table, Sandberg shares examples of women holding themselves back.

For writers of fiction, poetry, and essays, one of the ways to “sit at the table” can begin, quite literally, with sitting at a table of fellow students and an instructor for a writing workshop. I won’t comment here on the ways that gender dynamics and stereotypes crop up in these situations, because I’ll digress to a point of no return (besides, you’ll get a glimmer of this in the next section, “Success and Likeability”).

But the VIDA count reminds us of other tables and other seats. Where are women “sitting” in those venues? Where do they show up at in the tables of contents and bylines and within prominent literary magazines and book reviews? VIDA and its proponents seek institutional change, but what if that isn’t enough? Some female writers who may not habitually submit their work may realize that—like the woman whose tweet is cited above—they need to take some steps themselves.

But as Sandberg observes, even when offered opportunities, women don’t always accept them. One of the most eye-catching accompaniments to this year’s VIDA count was Amy King’s interview with Tin House editor Rob Spillman, who described that earlier VIDA statistics had prompted Tin House “to take a deep look at our submissions.” One of Spillman’s most attention-grabbing revelations was grounded beyond the slush pile: “Although we solicited equal numbers of men and women, men were more than twice as likely to submit after being solicited. This even applies to writers I’ve previously published.”

 Yep.  I sure get that.  

Waiting Room

I’m sitting on the fourth floor of a hospital, in the waiting room with Andrea.  Not quite what Australian Crawl had in mind, though whenever someone opens the stairwell door at the end of the hallway a flood of sunlight pours in.  Outside is a golden May day of blue skies and autumnal-turning trees.  Inside, this waiting room is filling with women, most of whom are carrying large envelopes with x-rays inside of them.

“Don’t mind me if I go quiet,” Andrea says.  “I feel like talking at times, but then I drift off.”  It’s okay;  I understand.  I’m a bit of a drifter myself after all, even without sitting here waiting for a doctor to look at the lump I’ve discovered only two weeks prior.  And anyway, it’s before 9 am and neither of us have been morning people for a long time.  Not like when we were kids, and we got out of bed one hot summer morning and jumped into the swimming pool in our nighties.  I am still harbouring the hope that her lump is as benign as the sun coming through the stairwell door.  

One by one they are called – Anita, Barbara, Li.  I know Barbara’s name is Barbara because it is written on the side of her white envelope.  She has pink streaks in her hair to match her pink top.  When they call Andrea’s name the surreality goes up a couple of notches to 11.  What on earth is my cousin’s name doing, being called to go into that room?  She doesn’t have cancer, for fuck’s sake.  She can’t have.  It’s not fair.  But then when is it ever fair?  But both of her parents were claimed by it, and she has two kids and a husband and I don’t want her going anywhere for a very long time.  

She disappears into one of the doctor’s rooms, and is being told as we speak that yes, she does have cancer (she knew from the start), that it hasn’t spread, that she will need to go for a biopsy next week to determine what sort of cancer it is – slow-growing or aggressive.  We’ve known each other all our lives.  Our friendship has been solid since we were eight – the same age as her youngest son is now.  Her name just does not compute with people who have cancer. 

Across from me in the waiting room is a nervous lady with grey hair speckled with brown and sadness spilling out her eyes.  When she opens her wallet I see a picture of two cats.  She has a scarf round her neck and a nice shade of plummy lipstick on.  She looks scared.  She has frown lines and a big blue bag that she keeps shuffling through.  I wonder if her bag is as chaotic and disgusting as mine, with its bits of raggedy paper and random empty packets of things and crumbs lining the bottom.  She too gets out pen and paper from her bag and begins writing notes.  We are a couple of old-fashioned writers in a sea of smart phones.  Later, she examines the pictures on her hankie.  It is the same hankie I had as a child, with Australian flowers and their botanical names on it.  She looks so scared that I try to catch her eye to smile at her, but then I lose heart when she doesn’t look at me straightaway and I take to examining people’s shoes instead.

There is a plethora of coloured shoes going on at the moment.  Ballet flats that were last fashionable to wear back in the 80’s.  Still black predominates.  I count a tan pair, an orange pair, a pink pair, a yellow pair.

There is a TV on the wall which is broadcasting the usual muck and slime of morning commercial television – either fearmongering or saccharine sweet but little that has any relevancy for any day I ever live.  The Pick A Part ad comes on.  I was wondering where it had gone.  I know every word to that ad but I can’t remember what I walked into the room for three seconds ago.  It would be very nice to be able to take some parts of your brain that are holding useless information and transfer those bytes over into the short-term memory compartment.

An older woman comes in, accompanied by a couple steering a pram.  The older woman carries a bag that has a reproduction of Bieres de la Meuse, a print from the late 1800’s.  It is Art Nouveau and all curves and flowers and pretty women, and I wonder if her x-ray envelope is hidden inside that bag, or if she is a pro, who has been initiated already into the clan and doesn’t need to bring her x-rays along anymore.  

The couple with their baby take centre stage.  I look at the worried woman across from me.  Her face has softened and she smiles, like many other people, at this squalling little thing, who we were all like once.  Somewhere around four to six weeks old, I’d guess, she is wearing pink mittens to stop her scratching her face and matching pink booties.  She’s making snuffly mewling noises.  “Shhh,” her dad says.  “Shhh.”

I wonder whether the woman who is here for her appointment is the mother of the woman or of the man.  I take a guess and say the man.   The baby cries.  The mother of the baby, who is wearing red and black, moves into the most inconspicuous corner of the waiting room to feed her baby.  The woman, the mother and the father all watch.  This small little creature has them all tired and captivated.  “She’s on there.  She just doesn’t want to feed,” I hear the mother say, and she takes her baby out when she keeps crying.  Such a little thing, so dependent on them for her every need.

Everyone is on their phones.  I feel sick.  Different people get up and go into different rooms when their names are called.  Nadia, Anastasia, Marjorie.  The woman next to me is looking at pants on her mobile.  Row after row of disembodied legs sporting red, yellow, teal, black pants.

A woman in a mustard top receives a visit in the chair next to me from one of the hospital workers.  “Agnes is in Korea for four weeks, so I’ll be looking after you today,” the worker says.  “Yep, I’m still here!  How long’s it been since you were last here?  Three years?”

I was wrong.  The woman is related to the baby’s mother, not the father.  The mother and the woman speak to each other in a Eastern European dialect.  The woman hands the baby to her husband.  “Shhh,” he says to his baby, multitasking on his phone while she sleeps in his arms.  “Shhh.”

Out in the hallway there is a woman on a gurney, swaddled in white sheets and blankets and black straps, whether to restrain her or stop her falling off I’m not quite sure.  But she doesn’t look like she’s capable of doing much fighting to me.  The straps aside, she looks very cosy and comfy in her bed.

Most of the other women here probably have breast cancer.  They’ve been sent as a matter of urgency by their doctors – well, as urgently as the public hospital system allows for, anyway.  

It’s the waiting that does your head in, Andrea says, when we are out of the hospital and in the car on the way home, out again in the sun and under the sky.  When you know what you’re up against, at least you can do something about it.  She’s been reading online, accounts of fellow sufferers who found the experience of treatment easier, when there was something they were doing about it.  Once you have beaten the cancer, sometimes the depression can set in because you’re back again, waiting.

That’s understandable to me.  We need to frame our journeys, make a story of what is going on in our lives.  It’s why I’ve sat in this waiting room writing about the people in it.  When you are actively fight against something, like any captivating story it’s one that’s sharp, with contrasts, with heightened emotion.  When you’ve come down on the other side (if you’re lucky enough to have an other side), and you’re waiting for something to not return, that makes it a little bit more difficult.  Many people who have beaten cancer are surprised at the emotions that come out the other end.  How do you frame waiting in a captivating narrative?

It’s a problem I wish upon her, a waiting that is hopefully one of the extremely long variety.