Living in the Moment

It is not long till midnight. I am typing in the dark, the deep dark outside a chink in the curtain, the screen illuminating enough for me to see the papers on the grotty desk in front of me, the outline of that cool porcelain sculpture I did quite a few years ago now, the still-unfired one, which makes me happy when I look at it and reminds me that I really need to go and buy another bag of clay and start doing something more now I have some extra bouts of energy in which to do so.

Oh, man, I love that sentence.

Creative commons - free to use but please link back here.

There is something to be said, I suppose, for health issues that force you to see how you're always walking on the edge of where the ocean meets the land just like you're walking on a wire in a circus (thank you, Adam Duritz). That line that is invisible but weaves its way through every single day. For a long time it's been a particularly drab and shabby line, like it's made out of old wool that's got balls on it like an old jumper that's been around too long, and it would lead from the bed to the couch and to the kitchen and the bathroom and often back to the couch.  Other times, like recently, it's been a line that's opened up forests on one side that I can trip off into.  Nothing major or extraordinary for anyone but me. Going to the supermarket and going for a walk in one day.

Other days I walk along that thread and fall into the sea.  Sometimes it's a bit heartbreaking. I never know when I've overdone it.  I'm asked again to give up what I've been given.  Which is the whole of life but with so many couch-filled days in recent years I have a tanty and lose perspective when I fall back into the fog again.  Even if I know that these days it's not going to be a life sentence, that I will climb back out at some point.

On Sunday things were good enough that I went with my mum to see a local Aussie muso, Billy Miller, play live at the Caravan Club. We stood for about three hours. That's nothing to people who do that every day but for me it was a really big deal. There was no way I would have been able to replicate it the next day.  My feet were so fucking sore.

The recplication the next day is the biggest test of CFS. The point isn't so much whether you see me today, walking in Belgrave, coming from the doctor's, into the Book Barn to buy pens, to the library to drop off a book and pick up a new one, to the post office. Doing chores. Flittering.  I would have seen quite chipper to you, I'm sure. But you see the adrenalised version, not the ATP-deprived one the next day who spends more time on the couch.

Still, I've had lucky days recently where I've done something like that and had No Payback The Next Day.  That feels miraculous but really it's just functioning mitochondria.

It's not what happened on Monday though. The day after Sunday's three-hour-standfest the world had that greyness to it unrelated to the sky.  As did Tuesday.  Feeling the anxiety running through my body, different from a mind-manufactured sort.  A buzzing kind that at the same time puts a sense of doomish urgency into everything.  Why are you sitting on this couch?  You need to be not sitting on this couch, or else if you just sit here like this that will be a terribly wrong thing to do and something bad will happen.

This kind of anxious body-fuelled thinking is problematic at any time, and I can generally take steps to ease off its push.  But Tuesday it was difficult because the next day was the funeral of my ex-father-in-law, which I very much wanted to attend. We still kept in touch from time to time. The last time we spoke was via email a few weeks before.  We had great conversations when he lived in the granny flat and Mark and I lived in the house.  He was a gentle man, a kind one too, and I wished to go and pay my respects not only to those who are living, but to him.

I don't believe that we are gone from the earth when we are gone from our bodies.  In our age of one-size-fits-all knowledge, the sort that is peer reviewed, double-blind, placebo controlled, many have little time for the perceptions that come from the subjective space.  That sort of knowledge is good but it brings with it hubris if it's the only kind you ascribe to.  It upsets me, really, this disrespect for our subjective life.  It's my life in here.  It's just as real as the life that is out there.  It can't be branded, it can't be monetised, it can't be shared, it can't have its privacy taken away from it, and I won't allow its dignity to be annulled by those who claim the experience in here is inconsequential just because they cannot measure it with a measuring device.

My ex-father-in-law is gone, but I don't think or feel that he is gone. Even anxious, fatigued, inflamed, the strange toxicity that comes when these fatigue situations happen, as if something in my body is struggling to work and instead is spinning its wheels, splattering genetically dysfunctional mud all over me.  I wanted to be there.  Even though I began worrying about what other people would think.  Paranoid things.  Like, would my ex's sister glare at me at the funeral and refuse to say hello?  Would they all think I was a freak, in my childless, cloistered life?  Would I drive off the road halfway there and cause a multi-car pile-up because I was spacey?  Would people believe me, if I didn't go, that I wasn't pikeing out because funerals are difficult but because I actually didn't physically believe I could get there?

7am is not so much of an issue for some people. For me it's been one for more decades than I care to count. Perhaps this was one harbinger of the CFS that would come in my late 20's, the endocrinal dysfunction that made getting up such a holy horror. 7am for me feels maybe like what 3am feels for some other people if they've got drunk the night before. I dunno. Maybe. How can we compare our own internal experiences to each other?

What happens when you know you have to get up at 7am and you're worried how you'll feel? You wake up at 5.30 and don't go back to sleep.  And so I finally conceded that this wasn't going to happen for me.  That to drive when I felt like that was an irresponsibility.  I would have had to leave home by 8am, drive for two hours in peak-hour traffic, and then turn around and drive back again a few hours later.

And so I just had to be there in spirit instead.  I guess if I'd died and some people couldn't make it to my funeral but were willing themselves there in spirit, that would be fine with me.   Maybe I'd see their colours anyway, flowing out like ribbon, connected to everybody and everything wherever they happened to be.  Time and space not always so constraining.  Do we sense people after they have gone? I feel like I had some kind of communion with Mike in the days after I learned he died. (How lovely of Mark to let me know. He didn't need to). How can we tease out the strands of what we wish to be true about life continuing after life, what we may be inventing, or what we may be perceiving on a plane that's not visible to us, not parked at any airport, not existing at all according to many and yet which many others claim to swim in their whole lives?

These kinds of experiences are between you and yourself.  They are the last bastions of privacy in an internet age :)  Nothing to be proven.  Nothing able to be proven, just felt, or sensed, and wondered at.  A space, like the negative space between two objects that you are taught to see when you are drawing.  Once you see it, you can't not.  You draw better when you draw the shape of the space in-between.  That nifty little technique brings all of the world into the fore.  All the empty spaces fill.

Because I Don't Want to Be Any Trouble

I saw the Great Dane puppies again today.  They are 16 and 17 weeks respectively.  One is blue and one is spotted black, white and grey.  This is the second time I have seen them in a week because I have been for two walks this week. I don't know the last time that happened.

Both times I have gone walking in abject frustration and with simmering fury at my body and the way its limbic system has revolted against everything ever since I was a teenager, as if a whole swarm of bees or a sabre is constantly threatening to end my life there and then.  No wonder I developed chronic fatigue syndrome.

I went walking both times furying and frustrated at this reaction that occurs without my permission to things that aren't even there and didn't happen last decade or even the decade before last, let alone now.  Having said that, I'm pretty sure that I'm traumatised from having this stupid disease, and at finding myself back in this relapsed state after being quite convinced I was healed forever of CFS.  Won't make that mistake again.

I went walking without the heart rate monitor, which is the CFS version of riding the top of a train or snorting cocaine with a bunch of hookers, or going out drinking all night.  Walking without the heart rate monitor is walking on the CFS wild side.  On the other side of the wild side is perhaps some kind of post-exertional malaise but I don't even fucking care because I've been able to go walking twice in one week!

When I walked on Tuesday (or was it Wednesday? All the days blur one into another in my stupid life).  No, it was Wednesday, which means I have gone for two walks in two days.  I reckon the last time that happened Hawthorn wasn't the premier.  At least.  Maybe it was even a Geelong premiership year.  We play Geelong tomorrow night.  I'm not scared of playing Geelong any more, not like when they beat us 90 squillion times in a row.  Which doesn't mean they won't beat us, just that it doesn't feel like we're their bitch anymore.  I would say if anything that it's probably more like Geelong is our bitch, but I don't like saying that kind of fate-tempting stuff the day before we play them because really, either team could win tomorrow night and really, I don't like saying another team is our bitch because I'm not 15 and I'm actually quite zen about being beaten.

When I walked on Tuesday I saw these puppies for the first time and they were just so beautiful.  One of them looked quite like this:

Jonathan Willier (creative commons 2.0)

The other one looked a little like this, only bigger and with different spots.

Bryan Peters (creative commons 2.0)

Or a little like this, only smaller and with different spots:

Jay Iwasaki (creative commons 2.0)

The woman who is the dogs' pet told me that her previous Great Dane had died a year ago at the hefty age of 13.  That's ancient for a Great Dane, who tend to live only till they're about nine or so.

Whenever I think of Great Danes I think of the Little Golden Book I had as a child.  One of the pictures, by that illustrator that I loved most called Louise someone or other, was of a Great Dane sitting next to a baby.  Gentle giants they are considered, and the dogs' pet said so too, and I could see it in them both even at this young age.  They are obviously well looked-after and of the pedigree variety of Great Dane, and are going very well at their doggie obedience classes.  The spotty one especially was quite smoochy, and sat very nicely.  Today they only jumped up a little bit and stopped when their pet said to stop jumping.  If there is any dog you must teach to not jump it's a Great Dane.  Well, any dog really 'cause jumping is very uncool, but if you lapse on training a Great Dane not to jump you'll accidentally kill your Aunt Martha when they jump on her in greeting when they're three.

When I saw the two dogs coming towards me today I felt a fluttering in my stomach because dogs are pretty much maybe my favourite thing ever.  They calm the limbic frazzle.  I may possibly have squealed a little, I'm not sure, as I approached them but I likely used my puppy voice.  I apologised to the woman.  I said, "Agh, you're going to start cringing every time you see me coming. Here's that bloody woman again, stopping me from walking my dogs."

"No, no, it's fine," said the woman, and I didn't believe her because my confidence is a tattered blood-stained period rag.  "It's good for the dogs to meet people," she said.

I patted the dogs for a bit and then shared what I had just been pondering before I came upon the dogs and their pet.  I was walking down the recently newly-opened track, the bit I'd never walked down before a few months ago because by the time I came upon the scene it was closed because of damage from the 2009 fires.  Six years later there is hardly any evidence of the fire anymore, just little bits here and there if you care to look.  Like on the rather beautiful, straight ghost gum tree.  Large, so that I just had to touch him as I walked past, almost white.  One of his branches had a branch running off it that was black.  But the rest of him was burnless, his skin intact.

"I was just thinking," I said to the woman, "how nice it is walking down here.  It's such a lovely track and seeing it now it's regenerated is cool."  Or something like that.  I can't remember what I said because it was more than two minutes ago.

But as soon as I said it, this pondering, ruminative kind of statement, it fell to the ground straight after coming out of my mouth.  The woman agreed in a dull kind of way, and I just knew that she was gunning to get going again, to walk her dogs so she could get home and do the seven tasks, and make dinner, and get online and blah, blah, blah, blah.

And I felt, as I feel so often, that I really need to just restrict that kind of pondering, ruminating to writing, and to talking to Andrea and my mum, and to not hardly ever speak a ruminative word at any other time because I'm so tired of this feeling that I'm like the old lady in the street that you try and avoid because you know she's going to ramble and you don't have time for rambling.

As I left the woman in my wake I continued feeling bad things about inconsequential things.  I felt that familiar feeling that accompanies me almost constantly these days, of being half invisible, a pointless blot on the landscape, a useless thing.  And I felt it rise up in me, this extreme dislike for people I don't know who I'm interacting with in a public place, who seem more and more like fucking zombies when I do talk to them.  And then it reinforced the same feeling that is probably reinforcing everyone else and making a giant snowball that will roll down the hill and smash us all to pieces, that people are crappy and closed off and disinterested and not worth talking to anyway.  I don't truly believe in my heart that people are crap, but it feels like they think I am.

Actually, as I walked away, I felt like the next time I come to walk here I will make sure it is earlier or later so that I don't run into this woman again, even though I really, roolly, truly want to run into her dogs again.  But I feel like I will feel uncomfortable next time, as if I can sense off that she feels uncomfortable, that it will be a burden stopping and letting this inconsequential woman pat her dogs.

And the inner witness part of me talked back to me and it said, "No, no. This feeling is just your paranoia talking. That's not necessarily how it actually is."

But the feeling that she might think that way about me is enough to make me react, so that next time I will happily cut myself off and go walking at a different time just to avoid it.  Because I don't want to be any trouble.

I've referenced Glaxo Smith Kline on here more than once in derisive tones.  They are a placeholder for the revolting capitalist corporate greed that we are all tired of because now we've realised that it doesn't have to be like this, it just is like this in the story that we're also sick of and are wanting to change without knowing quite how.  However, despite Glaxo being as tossbaggy as any other corporation, I find myself taking one of their products, lamotrigine, which I have grudgingly begun taking because it's good for people with CFS (I took it years ago for years until I stopped and forgot all about it.  Why I stopped is a reason consigned to the great Londonish fog of memory).

Lamotrogine is also good for anxiety, depression, mood stabilisation and PTSD.  Wish me luck.

Because I don't want to keep feeling like I'm being any trouble.

Salt of the Earth

My writing practice rises and falls with whatever is going on in my body.  In recent months I have been unable to remain standing for too long, and so I have been writing lying down.  Recently I have gone back to researching one of the basics of CFS, orthostatic intolerance, and began trying out some recommendations to address those symptoms.  The main one - which sounds odd to many ears - is to add more salt to your diet.  Yes, more.  More salt and two litres of water.  Lots of CFS people suffer with low blood pressure (yep) and also low blood volume (I think so, though I haven't been tested).  Many, if not most, CFSers have less blood in our bodies for some odd reason and what we find is that standing up can become a most uncomfortable experience - not because of the fatigue so much as that the blood in our bodies is pooling in our legs, and our brains start going a little nuts and mushy at the same time.  Lie down, and five or 10 minutes later you find your mind clearing to a greater or lesser degree.  The extra salt and water helps stop that from happening so much.

This brain blood drain can also be hindered by doing things like crossing your legs if you're sitting down.  Walking helps, too.  There's so many things going for walking when you have CFS.  If you're able to get out of bed to start, it can be as hard as meth to stop.  The fatigue falls away a little.  Your joints and muscles sway to the rhythm.  You feel some semblance of being alive.  Stuff the post-exertional malaise - this feels good enough for any payback.

Except when you're paying back.

Sometimes though the payback doesn't come as much as you thought it would.  Those experiences are as rare as Willy Wonker gold tickets though, so you celebrate them as miracles from the virgin when they do.  It's added irony when those moments come from the 101 category of  CFS management, orthostatic intolerance, when you've had this thing for 16 years.   CFS is such a complicated illness - there's so much going on in your body that keeping up with all of your symptoms is really difficult.  Note-takimg is an essential.  I wish I hadn't only learned that bit in about year 10.

I went to the footy last weekend.  It felt risky.  I hadn't even bothered the week before.  Anthony had to do the driving, Belgrave to Richmond and back, after driving from Belgrave to Tullamarine and back for work earlier that day. It required a 15 minute walk from the car to the ground, some of which I spent feeling awful and crying a little bit because of the two homeless blokes sitting on Swan Street on the way there.  It was loud at the ground.  I was worried i was going to fade, start sliding down in my seat halfway through the first quarter, feel trapped feeling awful in the confines of a large outdoor pit with 63,000 too many people.  But it didn't happen.  I have been following this extra salt/water thing for about 10 days now, and my symptoms are muchly flattened.

So increased ability of course means increased writing.  It follows the night like a day.  Extra space and the creativity pours in, grown more lovely from the unwanted respite.  And so I'm busy at work at the moment writing an essay about why I think Australia Day should be celebrated in August, marking the anniversary of the Wave Hill walk-off, and how that's a story for our time that goes way beyond black and white reconciliation, right through political ideology and right to the very future of our planet.

I also came across a new writing prize yesterday, The Richell Prize, named after the founder of Hachette Press who died too young last year in a surfing accident.  The prize is for new and emerging writers, a category that fits me despite me being old and haggy and prolapsed.  And so after I finish this essay I am going to work on my collection of train travel stories.  Excitement!

I also wrote a novella recently. It's the longest thing I've written, at over 13,000 words, and I think I'm happy with it.  But I'm so sick of it at the moment that it feels like a recalcitrant child I've bundled off to Grandma's and I'm happy for the peace.

So I'm well and truly back in the writing seat, and the only thing that has been missing is writing here on my lovely comfy, messy space.

The interesting thing about writing is that while everyone thinks they've got a book in them, not everyone can make it past the nasty gargoyle, the first draft ferryman.  Any hubris you have he will shred with his pitchfork in the time it takes him to ferry you from the beginning of your draft to the end.  If you can bear to sit for an entire ride with his foetid breath snorting in your ear hole, then by the time you get to the other side you will have a stinky pile to work with.  It's generally not pretty.  In fact, it's often such a mess that you despair that you'll be able to make even a satin purse out of this sow's ear.  It will send you into raptures about' how fucking pathetic you are as a writer and you will question whether you are not completely deludedin your insistence on persistence in this area.

The beauty of having written for a bit is that you begin recognising that this is just a stage of the process.  Like one of the lines of the I ching says, "Waiting in the bog invites the arrival of robbers."  If you can believe that there is gold hidden in this pile of poo you've written, then that's when the real writing starts - revision.  Out of that lump of clay you've crafted from out of the air, you work it up into something good.  Sometimes it's even really good, so that you start strutting and thinking you're a little bit fancy.  The same way you overdo it as soon as you get a tiny bit of energy and start planning all kinds of things and then find yourself on the couch.

That's okay.  Strut and overdo. Have your fun.  The loamy, salty dark mess of the next first draft is waiting, just around the corner if you're lucky, to slice a bit of that strut off, keep you humble, ground you back to the beautiful earth.

Just Call It Albert ~ On the difficulty of renaming an unsexy and underfunded chronic illness

I developed chronic fatigue syndrome when I was 29 after a bout of glandular fever.  Fifteen years later I'm still dealing.  I really loathe that stupid name, chronic fatigue syndrome.  Sure, fatigue is a large and scary component, but it’s nowhere near the only one.

A panel of CFS experts from the Institute of Medicine proposed a new name for CFS in February - Systemic Exertion Intolerance Disease.  Which is none too soon, given that a cruddy name like Chronic Fatigue Syndrome doesn’t particularly assist people in having their illness believed, by doctors and others' and especially not in a world that is itself exhausted.  I helped run a booth in a shopping centre several years ago just before CFS Awareness Day.  A woman breezed up in a flood of perfume that smashed itself into my nasal cavity and made me feel dizzy.  After hearing our explanation for the booth's existence she breezed, "Oh! I might have that. I'm soooooo tired all the time'" before flouncing off for a bout of pleasure shopping.  Now, no new name is going to puncture that sort of breezy self-absorption, but in a world full of people whose adrenal glands are taxed and pushed, a differential between garden variety 21st century tiredness and CFS is beyond overdue.

So I welcome the idea.  It’s just that systemic exertion intolerance disease is not quite working for me.  I mean, it's a start, but it's certainly not a stop.  At least it gives the impression that it's not just about feeling really tired.  It impresses that it's bodywide.  It even maybe gives a bit of a hint that for those CFSers who are well enough to not be bedbound, there is a variation in the amount of energy your body is granting you today which is often predicated on whether you've overdone it yesterday or the day before.  Which means that the person you're hanging with over an extended cafe sesh today, and who looks really well and seems rather together, may well be the one paying for it tomorrow or the day after by spending most of it on the couch.

The problem with finding a new name is there's not an umbrella big enough under which to fit the wide variety of symptoms that come with CFS.  It is truly systemwide, and its flow-on effects mess with your endocrine system, your digestive system, your central nervous system, your organs.  They range from bedbound people requiring care to athletes who are able to still compete as long as they monitor themselves the rest of the time.

And perhaps we shouldn't even try to find a new name for CFS unless it’s marketing-savvy.  I loathe the mere existence of marketing departments, but nevertheless, if we want greater recognition of our illness – which translates into more funding for research to find its cause – perhaps we need to sex this bugger up.  Systemic exertion intolerance disease is about as raunchy as Fifty Shades of Gray.  Plus it’s really boring.  About as boring as calling a newly-discovered star EPIC 201367065.

So I propose instead we call it Albert. Or Glimpf.  Or Smuggleglupp.  Easy to remember (after a fashion).  Much easier for the marketing department to invent a readily-remembered little logo dude to raise awareness around.  Smuggleglupp would be like a cute purple blob, smiling weakly from her spread-out morass on the floor.  Albert would be frizzy-haired, for reasons best known to my odd imagination.  I kind of like the idea of personalising something that has wreaked havoc on millions of bodies ~ makes it somehow more palatable, workable, in a way that systemic exertion intolerance disease probably never will.  That thing is better than CFS but it still smells like it was invented by a committee.  And how do you pronounce its acronym, SEID?  Is it SAYED?  SEED?  I personally reckon if it makes it through the goals as the new CFS name we go with the latter.  I’ve got just the logo for it – a flaccid, flabby sperm lying on the floor of the fallopian tube.  Too stuffed to swim anymore towards the fuzzy-edged egg screaming all wired 20 metres away.  That’s as good a place as any to define a disease that rides us right down to our cells.

Albert has a better ring, though.

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.

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.