Pyrrole Disorder Q&A Sesh #1

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This is the first in a series of interviews where I speak to people who have embarked upon treating their pyrrole disorder/pyroluria.

The disorder is being increasingly taken seriously by some in the medical field - although much more by those in allied health fields.  (There are historical reasons for pyrrole disorder not being accepted in the general medical community - it's generally not even known about there.  We will talk about that in a future post).  Many people with chronic or systemic health issues go where they will be heard, aided by what they've read of the experiences of others on the net.  Often that tends to be what is considered in our current paradigm to be the fringes of acceptable medical practice.  Hopefully that will change in the future and more GPs will come to understand the value of supplemental treatment for pyrrole disorder.

Today, our very first cab off the rank is Kristy P.

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So, can you give us a bit of picture of the differences in your health and life pre-treatment compared to now?

For my whole life I’ve been described by close family and friends as ‘moody’.  When something annoyed me (and a LOT of things annoyed me), I could go for weeks giving whoever annoyed me the silent treatment – even people I lived with, ESPECIALLY people I lived with.  My mum is the same and I always just put it down to me being just like her and I didn’t really think there was anything that could be done about it.  I was always a shy child but came out of my shell in my early twenties.  During my hours/days/weeks of annoyance, I often couldn’t process what had actually annoyed me, because generally it was a number of small things that had built up into something huge and seemingly insurmountable.  It was very difficult for me to vocalise what was wrong and why I was upset and by the time I worked it out in my head, everyone had given up asking me and had left me to ‘get over it’.  Once I was in a state of withdrawal like that, I almost enjoyed being there, hating everything and everyone and wallowing in my own self-pity.  I was a nightmare to live with.

My diagnosis came about accidentally.  I had taken my toddler to see a chiropractor for a general checkup and the chiro was doing kinesiology testing on him for foods and chemicals and the pyrrole vial came up positive.  We were a bit surprised because my son is one of the calmest kids I know.  After researching about it, I knew for sure I had it as well.

I have now been on the supplements for about six months and it’s like I’m a whole new person.  Now, when things annoy me, I am able to say something straight away – no more wallowing, no more holding grudges, no more silent treatment.  It’s as though my feelings are more even and structured and not so jumbled.  I’m able to process very quickly what I’m upset about and deal with it then and there and it’s over.  During periods of stress, I do tend to slip back into old habits temporarily but it’s now a case of me being upset and withdrawn for an hour once every two months instead of twice a week for hours on end.  I feel as though some sort of brick wall has been knocked down and allowed me to communicate better when emotions are involved.  I feel more organised inside my head when I’m emotional ... if that makes sense!

Did you have testing and did you work under a practitioner?

I had the urinary pyrrole test done through my chiro and then blood tests through my naturopath.  My naturopath works out what supplements I need.

What supplements do you take?

Mornings:
Pure Innovation Activated B Complex x 2 caps
Pure Innovation Iodine x 1 cap
Pure Innovation Folinic Acid x 3 caps (MTHFR heterozygous A1298C & C677T)
Mediherb Evening Primrose Oil x 1 cap
Thorne Molybdenum x 1 cap (this is only temporary until my copper levels come down)

Evenings:
Metabolic Maintenance Cal/Mag D +K x 2-4 caps
Thorne Zinc Piccolinate Double strength x 1.5 caps
Mediherb Evening Primrose Oil x 1 cap

Has treating pyrrole disorder been the fix for your health problems, or do you have other issues as well?

At the age of 16, I contracted glandular fever and in the years after that, I developed many food intolerances and was constantly tired.  I went to many traditional doctors and specialists over the next 10-15 years with no relief or diagnosis except for vague terms thrown at me like ‘IBS’ or ‘chronic fatigue’.  I’m sure ‘hypochondriac’ was in their heads too.  So I turned to alternative therapists (naturopaths, chiropractors, kineisiologists, etc) to see if I could get some answers as to the cause of my issues.  I found a lot of relief using alternative therapists, but my body would never hold their adjustments or I would give up taking herbal medicine because it didn’t agree with me.  I ended up having to have my gallbladder removed at the age of 29 and then two years later at the end of my first pregnancy I developed cholestasis (a condition where your liver can no longer process the pregnancy hormones).  I decided to see a new naturopath who discovered the connection between my liver issues and glandular fever and she got me on the right track for a healthy body.  Finding out about pyrrole disorder was the final piece of the puzzle for me and I now feel fantastic.  I’ve recently also cut out gluten and feel even better!

What would you say as encouragement to those considering being tested or starting supplementation?

Do it!!  What have you got to lose?  The results can be unbelievable once you get the supplementation right, but be prepared that your symptoms may get slightly worse before they get better.

My result for the urine test was only 20.2 (over 15 was positive) so I only have a mild case, which is probably why I've had such good results so quickly. For others it can take longer.

If pyrrole disorder is so prevalent, how come no one's heard of it?  

During my health journey, I worked out pretty early on that mentioning to a GP that you see a naturopath or chiropractor and *gasp* actually trust them with your health just invites negative comments and isn’t worth the bother.  Each specialist believes their ‘brand’ of medicine is the best, which is understandable.  If GPs aren’t taught that pyrrole disorder actually exists, then they can’t be expected to know anything about it.  Throw in the fact that a lot of naturopaths and alternative therapists DO know about it, GPs then write it off as ‘airy fairy’ and ‘make-believe’.  It doesn’t help that GPs are given incentives by pharmaceutical companies to push their products onto patients.  The treatment for pyrrole disorder negates the need for pharmaceutical help, which could be a big reason it isn’t recognised by the vast majority of traditional medical practitioners.

Do you think the colour orange is unfairly discriminated against?

Just the other day, my son told me that orange is his most ‘favouritest’ colour.  And we all know that 3 year olds know everything.

If you had to listen to the same song on rotation for an hour straight, what would you pick?

“The Song That Doesn’t End” from Lamb Chops Play Along (circa mid 1990’s). Super-annoying for anyone else listening and the title fits perfectly for a song on rotation!

Is Pyroluria Trauma?

Last year I saw a psychotherapist.  It was very cool because it wasn't just simply sitting in front of someone talking, talking, talking.  It involved also using my body.  Sometimes I would draw what I was experiencing in my body and then we would use different techniques like emotional freedom technique (EFT) and eye movement integration, etc, as part of working through them and understanding them.  It was a little strange and discomfiting, but it also kinda rocked because it fit into paradigms I am entirely comfortable with (namely, that we go way deeper than we are consciously aware of).

Once, near the beginning of our sessions, I wrote down on index cards the different effects I could expect in my life once I had successfully resolved the troubling, traumatic, long-standing and deep-seated situation I was seeing her about.  When I had written something on each card and drawn an accompanying representational picture, I then put them down on the ground to form a path, and walked through the middle of that path.  It was a literalisation of the process we were undertaking.  It felt good.  It felt stupid.

I first had experience of therapy that incorporated something greater than just talk when I began doing art therapy about six years ago.  That was such a profoundly awesome experience for me.  To be surprised by something you make, or a picture you draw or paint, to have it reveal things to you about you, slowly and meaningfully, so that you can see something you couldn't before, as if you have externalised something of yourself that is now giving itself back to you ~ it's hard work and it's awesome.  I have forever been ruined for straight talk therapy that doesn't involve using your body and/or your creativity.

If you're overly logical and a little weak on imagination, then maybe doing stuff like this mightn't work.  It requires laying down of the security that a logical way of approaching life offers and looking through a rather different lens.  It's an entirely different kind of practice; it's subjective.  It's also real, powerful, potentially massively meaning-making, something which can garner great internal change - surprising yourself about yourself and healing things that are broken.  Those spaces have always been dangerous thresholds to cross.  They continue to be so.


Doing this kind of stuff, though challenging, is powerful if it's your bag.  I suppose some of the techniques we used would be classed as neurolinguistic programming.  That is a compartment with a big pseudoscience label stuck on its outside.  Now, just because it's a cultural belief that anything pseudoscience is therefore false and wrong and stupid doesn't mean that's not a simplistic distinction.  Sure, some of what's called pseudoscience is peddled by shysters and snake oil salespeople, and we do not wish to be taken advantage of.  However, it is simply not possible for everything to be effectively funnelled into a scientific tube, into something externally measurable and quantifiable.  If something sits outside science as pseudoscience, then what that means is determined by what it is.  It can be bunk ... or not.  It depends.

One week I talked to my psychotherapist about pyroluria.  It was the latest thing I was working on and I was hopeful that it would help me with symptoms I was experiencing, namely massive fatigue and anxiety.  The next week, she came back and said that she'd read up on it a bit, and that while she did not wish to minimise in any way my diagnosis, that those symptoms sounded very much to her just like trauma.

I recognised the resistance in myself as soon as she said it.  Straightaway, it felt like she was dissing a new, possibly large, jigsaw puzzle piece that would help further explain what was wrong with my body.  The same body that had been causing me grief for the previous 15 years.  In 1999 I contracted glandular fever, and since then things have never been the same for me.  Chronic fatigue syndrome, adrenal fatigue, all wrapped up a bundle that has caused at best medium and at times severe limitations.  To have felt that I had come upon something that might give a physical explanation, and then to have someone suggest that it was maybe, like, emotional ~ no, I didn't want that.  I wanted it to be entirely physical, because that way it was simpler and cleaner.  If pyroluria turned out to be the physical manifestation of trauma, where would that leave me?

It would leave me feeling weak.  There's the rub, and here's the split:  a purely physical explanation would get me off the hook.  It would be mechanical.  Or it would somehow be my ancestors' fault.  It wouldn't be mine.  Whereas if pyroluria was trauma, then somehow it would automatically all be my fault.

Funny, isn't it, how we make those distinctions.

In practice, the body is not a dead piece of machinery with a big long stick coming out of it with a mind or a brain attached.  It is all one thing, and it is a joy to experience that.  And you can't understand it from a study (though we do know there is a type of brain function that occurs in the gut, and also in the heart).  You have to experience it yourself.  So is pyroluria trauma?  Maybe.  Maybe what we see with pyroluria is the long-term effects of trauma on a body, on the blood, ending up with a greater need for B6 and zinc, amongst other things.  Maybe we see the spiritual, emotional and mental effects playing out on the physical plane, like wind on water.

There is often just as much power in the immeasurable relationship between the things as in the things themselves.  It does seem as a culture we are finding it easier to recognise the spaces between things and how everything is affected by everything else in ways that are not always easy to forecast (especially in terms of globalisation and climate change). I tend to think that though Descartes' thoughts that translated out into the mind-body split still run like water down through the middle of our culture, causing division only in our perception, that we are beginning to close that particular gap.  In one way you could say that that is the defining argument of the age, one that surely must be felt in the area of science most keenly and confusingly.

Slowly, Slowly

Bruno's, Marysville (pre-fire)  Pic mine - free to use but please link back

Yesterday, I took the next few steps towards seeing if this creative space idea of mine - Liminal - is viable.

I created a survey (which I would love for you to fill in, if you could be ever so kind, especially if you live in Australia).  I created a Facebook page.  I already have a Twitter account.  And I sent out the first newsletter.

After all of that effort, Speedy Snail is a little exhausted today!

Unable to identify image creator - apologies

This is so how I felt this morning.

My hope was that I would at least try to do some basic yoga stretching,  some breathing, and some meditation, to start off the day right.

It's hard to do that when you can't get yourself out of bed, though, so I did the next best thing - I just stayed in bed and did it all.  Sure bed yoga entails reduced poses but it's not like I would be doing downward dog first thing in the morning anyway, so it's all good.

Starting something new - or at least dipping your toe into the idea of starting something new - is terrifying, isn't it?  It feels daunting because it's big and it's changey and we aren't very good at change.  But still, right next to the terror is excitement.  It reminds me of how often this state felt as a child and a teenager, and how as we get older it's easier to sequester ourselves away from new experiences.

Especially true for me after 15 years of chronic illness.

But the good thing about having a chronic illness is that it has forced me to confront my limitations.  I'm not very good at managing them, even after all this time.  Sometimes, if I'm extra ultra anxious, I can easily feel like pacing myself is simply not allowed, as if something outside says it is not permissible to do things your way, in your time, at your pace.

It's the insides that are making me feel like that, and what is inside is anxiety.  It's been probably the hardest symptom for me to manage in recent years and I only now feel like I'm getting on top of it again.    This racing mind has thoughts rushing through like traffic, in combination with a fatigued body, so I end up feeling sorta somethin' like this:

CC pic by Andrew

But of course, there is also something outside my own body that says that I can't go at my own pace and neither can you.  It's this stupid, childish, ridiculous, amateur culture we're all stuck with while we slowly realise we can change it.  The one that tells us to conform to it, not the other way around.  The one that does not fit us right.  Our culture is like a one-size-fits-none jumper made of scratchy wool that's 11 sizes too small that we have to wear all summer, and which has too many holes to keep us warm in winter.

Stepping outside of what you've been born into is the equivalent of that saucepan frog jumping out.  It's scary and hard to see what one day ends up being so clear.  But it's doable.  Being aware of our culture's stupidity, and that your desires to do things your way are perfectly acceptable - sane, even - makes it just that much easier.

And so the fears I have about starting up something like this with limited stamina are not so surprising in the light of the inside and the outside.  I can't start up something like this.  Why not?  Because I don't have the energy.  Well start it part-time.  But you can't start up a business part-time!  Why not?  Because it doesn't look professional.  Who says?

Good point.    But I can't do it by myself.  Then get other people on board.  I don't know where to start with that.  Well, just start.  Build it and they will come.  Was it really necessary for you to insert a corny film line?  Yes.

There are so many ways we can limit ourselves.  I'm a hardcore mistress at it.  But to be honest with you, I have absolutely NOTHING to lose in pushing to see what happens with this idea, and everything to gain.

At the very least, I will be able to say I tried.  And that's something.  

Public domain

Snails have been featuring prominently for me lately.  I wrote a short story a few weeks ago for a competition.  The winning story goes onto a wine label, which is all kinds of cool.  My story involved a woman at her daughter's wedding who is voyeuristically watching a couple of snails having sex.  Can say I don't write about the important stuff, now, can we?

Making the Shift - Pain versus Pleasure

Goodness me, this post from Michele Rosenthal at Heal My PTSD could have been written for me.  One of the biggest challenges of my entire life is about this ~ about getting past pain and allowing myself to experience pleasure.

This seems to be a rather common occurrence among some of us - we do not feel that we are allowed somehow to experience pleasure.  And by pleasure I don't mean flopping ourselves in front of the TV.  I mean doing those things that really bring us joy in some way.  Why is it so?  Don't we all experience suffering in some form?  If the answer is yes - and it's always yes; even charmed lives have their share of suffering - then why do we not comfort ourselves with pleasure?  Where does this puritanical tiresomeness come from?

I have a friend who does not seem to have this battle as much as I do.  She allows herself to experience pleasure whenever she wants, and her life, as a result, even though filled with suffering, also has a certain kind of ease that is awfully attractive, not least because I feel like my life does not have that ease. And it seems to come easy to her, but when I talk to her about it, really, what the difference is between she and I is that she has the same sorts of thoughts and feelings I have around letting go and doing things that give us pleasure.  It's just that she ignores those thoughts when they come, whereas I treat them as if they are some great god thundering from a mountain.

Enoughness.

I think, if I am really very honest, that so many of my struggles to sit down and write - and pretty much all of my struggles to sit down and play with clay - are because somewhere in my mind, and somewhere very obviously in my culture, I don't feel like I am allowed to do these things. I'm not allowed to do them because I enjoy them too much, and because I'm not working enough, and until I spend enough time each week working at a stultifying soul-destroying job in some capacity, I have not earned the right to do those things.  Because everyone knows you have to eat your meat before you have your pudding.  How can you have any pudding if you haven't eaten your meat?

What would happen if what the world needs most was a whole bunch of people all eating their pudding at once?

That walk from the TV to the clay, from the TV to the computer to sit down and waste time writing stuff - or whatever your personal bliss is that you don't feel you have the time for - is the single most challenging and enlightening walk that you can take.  One of the most important ones, but the absolutely hardest one because it is a walk you need to take alone while the internal voices shouting that you don't have time and haven't earned this are completely meshed with the outside societal voices that are in total agreement.  And too often we listen to those voices.
 
How very strange, to be in a situation where the most courageous acts I can do are to do things that bring me intense pleasure.  How very, very strange.

But not uncommon at all, I don't think.  When life is pulling us in directions that distress and/or depress us, our first instinct is to try harder.  When in fact, what we really need to do to rest, and recuperate, and recreate ~ in the very best sense of that word, re-create ~ is to stop trying so hard, let loose, loosen our hair, take off our glasses, pick up that guitar, have a shag, listen inside for some whispered secrets that may well surprise us about what we really want to do that would give us joy, because even though L'Oreal has co-opted the saying, we really are very much worth it.

Let us all eat pudding.

Pic by Ucumari (under a creative commons attribution/no derivs/noncommerical licence)

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.

Eight Months into the Pyroluria Journey

I've been taking pyroluria supplements for about eight months now.  For a few months before that I was taking B6/zinc in pyroluria-sized doses.  So have I noticed an improvement in my health in that time?

Well, I wish it was that simple.  When it comes to health issues, sometimes you have to go backwards to go forwards.  And I think that's what's going on with me.

If pyroluria existed in one compartment of my body and affected no other parts, and if taking supplements meant that I simply fast-tracked from point P to point A, then I would be able to have a much clearer indication of where I'm at and what's going on.  But sometimes getting your body to do what it needs to do can create some extra problems along the way.

I know from hair mineral analysis and by my doctor's assessment respectively that I am a slow oxidiser and an undermethylator.  This means that my body has accumulated a whole lot of gunk in its travels that it's been unable to get rid of through the proper detoxification channels.  This is why I need to do extra things like have saunas and coffee enemas to help it along.  It's why my body has sequestered away in its tissues certain things like copper because it didn't know what else to do with them.  Better to shove them away in a room wherer you can close the door than let them float around in your system doing constant damage.

The problem with the process of taking stuff that my body needs to function better is that it begins opening up all those doors where it shunted things away in years gone by and it begins doing some spring cleaning.  But the spring cleaning can happen too fast, and if your body struggles to get rid of it of all of this vacuumed-up stuff, like mine does, then it can tend to recirculate in your body.  Not nice.  All of this spring cleaning has put extra pressure on my kidneys, my adrenal glands, and suddenly I find myself back in the land of adrenal fatigue and pending sickness benefits.  So I am suspecting that maybe I got too excited about spring cleaning and went too fast.  But you sometimes don't know these things except in hindsight.

When my doctor told me that it can take undermethylators up to two years to get right, I didn't really want to hear that news.  But it turns out that I think she may just well be right.  Time to climb up onto that Zen ledge, the one that sits above the raging waters of loss and frustration, and watch my emotions and frustrations pass.  Things are as they are.  There are ways of finding peace no matter what situation you are in.  You just have to stop believing that commonly-held idea that a bad situation means no peace to be found.  It's not true.  It's just hard to get there.  Impossible if you don't believe you can.

Adrenal fatigue is a true shocker ~ you can't really know how unsafe and vulnerable a body can feel until you're stuck in one that's lost its muffler a few corners back.  Makes it harder ~ but not impossible - to lean into the curves and ride it out.

Knowing why this is happening is helpful.  Doing what I need to help my adrenal glands heal again is a long process ~ a full-time job all its own.  And knowing that I am on the right track is comforting, even while it feels like it's flung me backwards into the saltbush. 

Messing about with clay - one of the things I need to return to
to help my body heal itself.

What Other People Think of Me ...

... is none of my business.

Rinse and repeat.

And then repeat it and repeat it and repeat it like a mantra.  What other people think of me is none of my business.

I often feel pulled one way and then the other by people's desires for me and opinions of me.  The desire to please, to be the sort of person who is liked and accepted, is strong.  There are parts of me which I wish to express but then I worry that people will not like me if I do.

But then, in that instance, what other people think of me is none of my business. Being true to myself is.

Sometimes I worry that the way people see me is in conflict with how they would see me if only I had the courage to truly be myself ~ and that's coming from the kind of person who is quite often truly myself.  I have been told by more than one person that I am brave in my sharing of myself.  And so I realise that though I feel so terrified to express myself, maybe other people are even more terrified to express themselves, and suddenly I think that maybe I am actually more myself than lots of other people are.  Which amazes me, really.  Because it doesn't feel like it, and it scares me.  I have a strange and scary ongoing feeling that something bad will happen if I am myself.  It is one of my many terrors, and is a delusion that persists.  It has wings.  Or balls.  (Although, as someone said, "Why do people say, 'grow some balls'?  Balls are weak and sensitive.  If you wanna be tough, grow a vagina.  Those things can take a pounding."  But I digress ...)

If you have a strong inner life, there is always a disconnect dealing with other people because you know that you are never going to be able to truly share that rich and vibrant space with them.  They will never see the whole of you.  And because of that, we don't really ever know how we come across to other people, and some of that richness inside may not get expressed well or at all, and so then we can be surprised by others' reactions to us.  We just never really truly know how other people see us.  And we all want to be seen for who we are and accepted for who we are.

But still, despite that true and lovely desire, what other people think of me is none of my business.

It is so easy to feel invisible in this world.  And the online space can make that feel even stronger.  When people stop reading my blog (which has happened a whole stack over the past few years), I wonder why.  I start wondering if I should change the content, make myself shinier.  When people don't hit "like" enough on my Facebook page, or at all, I can feel rejected.  Some days I feel lonely on Facebook because the people who give me the most encouragement are people I have never met, across the other side of the world, while the people I know in real life are saying nothing at all.  I feel redundant and alienated and like maybe some  of those people that I know in real life don't really see me at all.  I feel like the best way I express myself is in writing.  And I feel like maybe some of those people that I have known for years, who know me as Sue the transcriber or whatever, might think that I have a few tickets on myself, calling myself a writer.

Luckily, what other people think of me is none of my business.

Or in a face-to-face conversation someone might make a joke of something that is important to me that I'm never spoken about before so that then I don't feel like I want to ever to say anything about that particular subject for fear of being rejected.  Because I'm so fucking totally oversensitive.  Sometimes this pyroluric freak will take to her bed because rejection feels like its running down her leg and out through the floor from something someone did or didn't say (often on Facebook), and it's a rejection that ultimately has no basis in reality.  It is hard to accept that these delusional sorts of feelings that are so strong are not real out there in the world but are more indications of what is going on in my body.  At those times it is a solace to remember that what other people think of me is none of my business ... and that quite possibly what I think they are thinking about me is nothing even close to the truth.

I have been having a bit of success recently in a small way when it comes to writing.  In the last six months I have had an essay published for the first time for payment.  Last week, I had another essay published in the inaugural autumn issue of The Tincture Journal.  On one particular day a fortnight ago I had three different email conversations with three different editors.  One of those was saying that they would like to see a piece of mine that I had suggested.  Another was to say that they loved my original piece of writing and would publish it on their website.  Another filled my heart the most, because it was from The Griffith Review, which I love, and though it was a rejection letter it was the most encouraging one, telling me that my essay passed through the first round with flying colours, despite the fact that it was over their usual reading limit (over 4000 words), and that it was only because of issues of space that they had to unfortunately reject it.

Writing is a strange pursuit.  When I first write something, though I am ultimately hoping for other people to read it, I have to write it as if I'm only writing it forever for myself, or I won't be able to write a word.  It's as if I have to go inside, close the door, walk down the hallway right to the back of the house, climb the stairs, go down the laundry chute into the wine cellar where there is a hidden, winding staircase that nobody knows about up to a level where there is a flying fox that flies above the clothesline below to the the hidden room that is only accessible by said flying fox, being situated at the top of a 17 foot pole.  And it's here that I write.  Writing is a solitary activity that is about as personal as swimming around in your own guts, and then when you come back out of that space and return all the way up to your everyday house with a piece of writing to share, then, though you want pepole to like what you have written, and though you are doing a very intimate thing with them by sharing it with them, even if it's the whole world you're sharing it with over the internet, you still have to remember that what other people think of you is none of your business.

Repeat:  what other people think of me is none of my business.

For some people, being themselves comes easily, but I suspect for most of us it is a difficulty.  It is the tug between the pull of the herd and the call of your own wild.  It turns out that one of the hardest things to be is yourself.  Who would have thought that?  And there are so many multiple layers to being ourselves that I suspect we can go through life with doors left unopened, that opened we would be surprised and maybe even dismayed to find contained undeveloped talents that would knock us a little sideways if we only knew that they lay hidden under a big pile of clothes from 1979 that we forgot to put back in the cupboard.  Or they lie under a whole lot of "No, no, not that.  It's not possible to do that.  It will cost too much."  And so there it lies mustering in the middle of the room under a pile of Keds and pairs of black shiny pants and shimmery boob tubes and fears until one day we forget that it's there at all when we glance in that room.  Now there's just a pile of stuff, and it becomes easier to simply close the door and walk down the hallway to a different room.

Once you know how hard it is to be yourself and you feel it, then it sometimes becomes easier to at least begin the process of either discovering who you are and what you want (there are always surprises) or else in the even harder work of coaxing and cajoling those parts of you that hide, wanting to be seen, terrified of being seen.  Those parts need the most gentle looking after, and if being kind to yourself feels like a weakness then they have probably found a ledge in your soul that they have climbed up on, away from your searchlight gaze.  Those undeveloped parts of you need rose-coloured light to shine on them.  They already feel a little dead, so if you walk in on them and shine your torch of scrutiny on them, the one that contains energy-saving cold white light, they will stay hidden away on their ledges.  They are already in the morgue.  Candlelight and rose-coloured light.  They're the sorts of light that they like best.

They will also run from comparison.  They are just themselves, and when you compare them to other people's shiny bits that have been Photoshopped for public consumption, they will run away from that.  This interaction is just between you and them.  Because what other people think of you is none of your business.

When I say that mantra to myself, what it does is it provides a space for me to climb out of the raging ocean of paranoia and insecurity when I'm worried I have stepped on someone's toes, hurt their feelings, said something they may not like and therefore may reject me and not like me as much.  On and on it goes, that raging ocean.  And those words when I say them ~ what other people think of me is none of my business ~ work for me.  They send shoots of gold through the water that point out the ledge on the edge of the cliff that I can climb onto, above those waves, and see them for what they are.

And then I feel the bigger me, mySelf, and those fears subdue, and then the space and the hope flood in.  Like the tide.  As they always do.

Meditation by Tonyelieh

Pyroluria Blues

Sick of seeing career opportunities pass me by and not being the one to be chosen.  Sick of not having the time to write because I'm using up my energy doing work I don't like.  Even worse ... sick of not having enough work that I don't like to pay the bills.

Sick of feeling like I am vastly, vastly underemployed but that people can't see my worth.  Sick of part of the reason for that being these health issues that have plagued me for decades.  Sick of feeling like very few people really see me and even fewer understand what a struggle it is and how hard I am trying. 

I am sick of not being seen.

Sick to fucking death of living in a world where if you don't market yourself to the max you have no value.  Sick of living in a species that doesn't seem to give a fuck enough about finding ways to do this thing better that we will push against the goads of the invisible ones who profit from our slavery if necessary to effect change.  We are slaves with learned helplessness tendencies.

This competitive, carrot-on-a-stick society has no place for anybody except for those at the top.  Have we really taken on their ways so much that we have become so heartless ourselves that we don't really care about anything any more unless it affects us directly?  Do we not know that what affects others will ultimately come to affect us ourselves?

Sick of having vision, of seeing what so many don't seem to be able to see. Sick of seeing how unnecessary the fight to survive is in this society, this stupid, stupid, insipid capitalistic dance, and having to dance the fucker anyway.

Okay, that's all.  I feel better now.

I struggle to say all of this because it is complaining and it is not being positive and who wants to hear it anyway?  Well, you know what, inner voices of fear that I am voicing my discontent?  This is my blog.  And if people don't want to read this, then they won't.  So shut up.

There, that's better.

Pyroluria Supplementation

Update June 2013:  My pyroluria supplementation has changed rather drastically since I wrote this post.  These days I am taking 50mg of zinc at night and 100mg of P5P in the morning, amongst many other things.  Every single body is different, and within every body are variances that make what is right for you at one time wrong for you in another.  It's a complicated process of trial and error finding out what suits you, that's for sure.  And as at September 2013 I have dropped my P5P back to 50mg.

~ ~

I have been taking supplements ever since my pyroluria diagnosis back in August.  Actually, I began supplementing even before I got the official diagnosis because I just knew that I had pyroluria.  I guess my strong knowing might have something to do with the fact that when my treating GP looked over my completed questionnaire she said she'd never had anyone tick so many boxes before.  I am, it seems, a pyroluria poster child.

(Which is nice, because I just thought I was a stuff-up).

I wonder, what would a poster look like for a pyroluric?  Black and white.  Lots of shadows.  Introspective and solitudinal gazing out of windows onto snow-filled landscapes.  Something along those lines :)

Give or take, it's been six months of 100 mg of zinc a day and about 750mg of B6 and about 130mg of P5P (the other form of B6) along with other bits and pieces that we sussed out after the blood tests*.  Those are tailored for me though and are very high.  Anyone who is beginning supplementation needs to start at a low level and build up because your body needs time to adjust.  Also, taking these things your body needs so much signals it to begin detoxifying from the high levels of copper you could very possibly be suffering under, and getting rid of copper can be a little traumatic.  Best approached as slowly as possible. 

I would recommend that anybody who is able to, find a practitioner versed in the Walsh/Pfeiffer protocols to help them along.  Don't count on your regular GP knowing anything about it.   At all.  And, as amazingly arrogant as it all is, if they don't know what pyroluria is, don't expect them to do some research to find out.  Many GPs seem unable to resist taking the route of making their patient feel bad about trying to find solutions to their health problems that they don't happen to know anything about.  Bizarre and frustratingly arrogant, but true.

If you are in Australia, a good place to start is with the practitioners who practise under the Bio-Balance umbrella.  (They also have practitioners in Singapore, New Zealand, the Philippines, Indonesia, Ireland and Norway).  Initial consultation can be expensive.  Having your supplements compounded is an expensive outlay, but then you're right for months on end.  As an indication, it cost me about $500 for testing and consultation, and then another $300 for three months' supply of compounded supplements.

Being sick is expensive.  It breaks my heart.

If you are having problems finding anyone that can treat you, or if you have come up against complications in your treatment and are a Facebook user, can I recommend the Pyroluria group.  I am a member, and there are a stack of good-hearted people there who will help you find your way.

The level of B6 I'm taking is apparently a bit controversial.  My treating doctor, Joanna Hickey at Wellness Medicine in Clifton Hill, who has trained under William Walsh (who, along with Carl Pfeiffer is one of the gurus of pyroluria treatment) has said she can't officially agree to me taking so much B6 because of the risk of nerve damage (neuropathy).  But I know my body needs more.  I can remember only a fragment of my dream last night, and that's on the crazy dose I'm already on.

I got a bit scared off about the high B6 when I first started seeing Joanna, and so I cut my B6 dosage right back.  But the distinction between the menstrual period I had before cutting it back and the one I had afterwards couldn't have been more marked and indicative.  The first period was a breeze.  Barely any period pain at all, and no sore boobs beforehand.  A bit of PMS (but then it's hard to define PMS when I have mood fluctuations for 31 days of the month anyway :)  The next menstrual cycle after I dropped the B6 had all of those symptoms return and greater levels of PMS to boot.  I have now since upped my levels again and monitor myself for neuropathy.

However, a doctor in the US who has trained under Carl Pfeiffer reports that he regularly treats his patients with a B6/P5P combination of up to 2000mg without problems.  According to him the neuropathy is decreased when using  P5P.  I am also taking niacin (B3) which also helps prevent neuropathy.  So I guess I am going to trust my body on this one.

I am an undermethylator, which means that my body is not easily able to get rid of toxins.  I know this.  In my years with CFS (and especially after antibiotic therapy to treat infections) I often felt "toxic".  I still do.  It's a system-wide malaise and it is frustrating because you feel so bad, but there is nothing you can definitely say that is "wrong" with you.  (Just everything.  Like a system-wide computer virus).  I have often wished for a broken arm so that people could see how bad I was feeling.  A cancer diagnosis would have got me more sympathy.  But CFS?  Being a walking too-hard basket makes anybody uncomfortable.  A pyroluria diagnosis (along with an understanding of how fragile my adrenal glands are) is freakin' fantastic by comparison.

According to Joanna Hickey it can take up to a year for the methylation cycle to work properly once you start treating pyroluria.  In that regard I can say that I am feeling so much better than I was.  I really do feel like my body is starting to clear itself.  I have been trying to detoxify my body in one way or another, intuiting that something was wrong, for so many years now.


As for stress, I still feel at times like I best resemble a paper bag.  Too much stress (that other people wouldn't even notice) and I crumple, and then I melt down, and it's a horrible and lonely and deadening experience. However, last week I had a stressful experience with a new client, and after hanging up the phone I could feel that familiar meltdown feeling heading my way.  But this time, with deep breathing and a good kind talking-to, I was able to head it off at the pass and move on with my day, though a little shaky.  But it beats having to go and lie down for a couple of hours till everything stops feeling overwhelming.

As for energy, my levels are improving.  I had an adrenal fatigue situation a year and a half ago, and it's taken me forever to climb back out of that space.  An understanding of how much stress your system is under living with pyroluria provides an understanding as to just how depleted your adrenal glands probably are.  I've found some real gains using withania and other herbs but again, rebuilding adrenals is not a quick fix.  Still, I am appreciating how much easier life is when those little walnut-sized glands that sit atop my kidneys are able to function properly.  It's hell when they don't.  But I have been gardening and exercising and stuff lately, and while most nights find me collapsed on the couch with a desire to do things that my body doesn't tend to possess, I have some hope that that is changing.

I feel like my ship is being strengthened.  It's such a long and slow process that often it feels like nothing is happening and nothing is ever going to change.  I guess that after living on a ship that for 30 years has had some serious rickety factors, a strong and steady constitution takes a while to rebuild.  And not just on the physical level.  That stressful physiology has created some mountainous terrain that needs ironing out.  The combination of supplementation on the physical level along with a truly badass therapist on the other is causing me to believe that even though I can't see it, and it feels too good to be true, that a whole lot more peace and ease are coming my way.  I do admit I find it hard to believe, but I do believe that thought feels pretty damn good.

If you are ordering supplements, may I recommend Iherb.com?  Even including costs associated with ordering from the US to Australia, they are still the cheapest place to order online.  New customers can receive $5-$10 off their first order by quoting a current customer's gift code.  If you quote mine - ZEY804 - when you are checking out on your first order in the "Apply Coupon Code" section I will receive a discount of $5-$10 off my next order as well - and I can tell you, this broke writer would very much appreciate the extra help :)

Pyroluria Diagnosis in Melbourne

For those looking for a pyroluria diagnosis in Melbourne, Australia, I have begun seeing Joanna Hickey in Clifton Hill. She is one of a group of practitioners who follow the Walsh protocol (William Walsh, who was  an ally of the late Carl Pfeiffer) for treating pyroluria.

I've just started seeing her, but so far so good.  I mean, a doctor knowing what pyroluria is is good enough, right, but then on top of that she actually knows how to treat it.  The first visit takes about an hour and a half.  Consecutive visits aren't as long.  But a word of warning ~ it's a little exey.  For the first consultation and the numerous blood tests required, you will be looking at somewhere between $400-$600.

It's an expensive place to be, on the wrong side of the health fence, that's for sure.  The good thing about pyroluria is that once you've got the initial diagnostic stuff out of the way, treatment is all nutritional, via vitamins and minerals, and if your situation is straightforward you need only spend 20 bucks or so a week to keep yourself on the up.  But supplements can be expensive too.  I am taking a range of things to help deal with the copper detox symptoms.  I counted 22 separate tablets I took this morning.  It gets tedious, and it gets expensive.  But I'm glad I'm on the right track.  Some of those supplements I will be able to ditch after a while.  But in the meantime ~ hooray for iherb.com, is all I can say.

I'm not sure where to suggest for you to go if you are just wanting a barebones diagnosis.  My holistic GP that I usually see knows nothing about pyroluria, and while he was happy to refer me for a blood test, it turned out in the end to not be the best one to have.  Dr Hickey would have liked me to have had the test done that gives a baseline measurement of my level of pyroluria.  I was interested in having this done myself too, but an extra 70 bucks plus the fact that I would have had to have stopped both the B6 and the zinc for three days meant that I passed that over in favour of keeping some extra dollars in my wallet. 

Futility

Futile, futile, everything feels futile.

And I feel like I'm made out of butter when the world requires that I be made out of steel.

How do you live properly in a personal world that has told you for as long as you remember that you are both not enough on the one hand, and are far too much on the other?

And what do you do when you take all of those mean voices, all of those nasty spiteful words from people, and have absorbed them into your own self, so that every time you live, you come from behind and cut yourself off at your own knees?

All of the necessary questions contain answers only I am able to give.  Nobody else truly understands, nobody.  Nobody knows what another person is going through though they be right in front of you.  This is surely a great cosmic joke.  One that is only funny when you look through the prism of Oneness.

I have misplaced that prism right now.  I am tired of this fight to just be able to get through a day on an even keel.  I am so tired of this story.  I wish I could put down my own life and take up someone else's to live through for a change.

A Whiney Post About Feeling Crap ... Nothing New Here to See :)

Sometimes, outside validation is a lovely thing.  It helps you articulate things that have bothered you for decades but you haven't wanted to put words to it in case you get locked up.  In the case of pyroluria, having the symptom of "severe inner tension" listed right there on the page is a real validation.

Sometimes I feel like two people.  I've grown so used to having this "severe inner tension" that I can go about my day doing stuff and all the while it's simmering away there.  But it's not easily expressed.  For someone who is happy to talk to you about the state of her poo*, when it comes to talking about this I get strangely reticent.

Except, of course, when I'm talking about it on my blog.  Which is sorta weird, right?  I mean, so many people think blogging is a pointless waste of time.  Indeed, out of all of the people I know, at most only two of them reads my blog regularly.  I don't bring that up because I'm feeling snarky that people aren't reading my blog;  I bring it up because (a) if I have something published, a whole lot of people who don't read my blog will go and read that, because it's proper writing; and (b) I am way more able to articulate myself these days in written form.  It may seem strange to some who presume that speaking is more real than writing.  I am less able nowadays to form what I want to say into coherent sentences.  I am so much more myself on the page than I am in real life.  Paradox.

I'm tired today, and fed up.  I'm fed up with the fact that I can't seem to sort out my B6 levels.  I've tried small doses, large doses, varying degrees of standard B6 and P5P, and I just can't work out what to do.  I can't work out whether I am not absorbing it properly, or if I am absorbing it and I'm maybe taking too much, and that is contributing to feeling severely innerly tense, or whether I would be feeling like that anyway.  The problem with jumping off too quickly when taking new things is that sometimes, just because you are feeling worse doesn't mean you're not on the right track.  Sometimes there is what's called the Herxheimer effect, where you feel worse before you feel better because that's what needs to happen in your body as it stabilises itself.  But sheesh, I don't fucking know.

I'm fed up with the whole box and dice.  I'm fed up with how, when I am feeling bad in my body (which always passes after a time), I manage to make the whole thing totally worse by the "suffering" thoughts that flood in.  The victimised thoughts.  Thoughts like, "It shouldn't be like this," or like "I just want to be normal".

(Which isn't, by the way, true.  Normal people seem awfully boring and rather resemble sheep in their inclination to follow along after everybody else and watch the news on Channel 9 without feeling unbearable).

But normal people get things done.  And I really would like to get things done.

Like the bathroom, for instance.  That baby hasn't been cleaned for weeks.  That's not asking too much, is it?

Okay.  Whine over now.  Because comparison is the thief of joy, right?  And comparing myself to other people does make me feel worse.  Even when that comparison is with a different self than the one I currently inhabit.

~ ~ ~

* Some people are much more tidy on their blogs, and they only publish posts that are about something, rather than complaining about their health issues.  Some people resist the urge to write these sorts of posts because they are seen as self-indulgent.  They would, for example, skip writing this post and instead choose to write about the singalong me, Andrea and my mum went to last night where we sat with a whole lot of middle-aged  women singing songs with Rebecca Barnard and Billy Miller and which was really FUN! 

But then I'm also mindful of the amount of people that have begun surfing into my blog with pyroluria tags.  I want to write about my experience if it helps someone else who is struggling with this maybe feel not so alone.  And anyway, I don't know why I feel like I have to apologise for writing things that might be seen as self-indulgent.  After all, if these posts bore you, I'm sure you wouldn't have got this far down before skipping to the next post in your feed reader.  Why do I feel like I have to apologise for writing about feeling crap?  Because I tell you what, I feel like crap.  It's interspersed far more these days with feeling much more normal again, but I just feel crap.  And I'm fucking well sick of it.

I guess I feel apologetic about writing about my health stuff because it's been going on for soooooooooo loooooooong.  And people's eyes glaze over when you talk about your health issues.  Because it's really boring.

But anyway, speaking of poo, I do intend to write about the colonic session I had last Friday.  Because I know you want to hear about it.  And I feel it's my duty to keep you informed :)

Grandmothers and gardening

The grower of trees, the gardener, the man born to farming,
whose hands reach into the ground and sprout,
to him the soil is a divine drug. He enters into death
yearly, and comes back rejoicing. He has seen the light lie down
in the dung heap, and rise again in the corn.
His thought passes along the row ends like a mole.
What miraculous seed has he swallowed
that the unending sentence of his love flows out of his mouth
like a vine clinging in the sunlight, and like water
descending in the dark?

~ Wendell Berry

Both of my grandmothers were gardeners. Tulla, my father's mother, lived in a granny flat attached to the house where my family lived for 15 years before my parents rustled up enough of a deposit to buy a house of their own.  Tulla was out there every single day from the day I was born, and years and years after we had moved, right up until the time she went into a nursing home in her late eighties.  I think Wendell Berry's words would have resonated in Tulla's soul.  She was a bitter old thing in many ways, and there was more than one occasion where I was bewildered by her bizarre suspicion even of members of her own family at times.  But her garden was her solace and her live, silent companion.  I would pay good money to have one more taste of one of her meals, cooked with the produce that came fresh from her own planting.

As far as I'm concerned we should have let Tulla stay at home and continue gardening until she dropped dead right there on the spot, and then bury her right in the middle of one of her garden beds that was full of worms and dark, rich compost.

When I was born my mother's mum, Grandma, lived in Boronia with Grandpa on a double block.  Their veggie garden was the most badass veggie garden I've ever seen.  That's my auntie, Dawn, on the left there in this photo, with her famous legs.  Grandma is in the middle.  And that's my mummy on the right, carrying me.

That veggie garden was rows and rows.  It was such a commonplace thing 40 years ago.  Everybody grew their own veggies.  I have heard it said that these days there is less than half a week's supply of food in our supermarkets.  The intervening years have been very strange, and now we find it's an act of resistance and a wake-up from an eerie slumber to indulge in the subversive and tiny act of growing some of your own food.

The fatigue that has encroached and retreated in various degrees for over more than a decade has lifted a little recently, and on Sunday I pulled some weeds and lay down some newspaper and mulch in the veggie patch in preparation for some seedling planting next weekend.  I think in hindsight I may have overdid it, as there was a tearful meltdown in there as well, but I don't know I've overdid it until I've overdone it.  It's like being premenstrual for six straight months ... except for the times when I'm feeling fine.  Bizarre.

I think I'm on the right track with the pyroluria/heavy metal detox treatment.  I guess the meltdowns are not surprising when you consider that my body is ridding itself of a toxic cocktail it's been harbouring against its will for decades of high copper, antimony, beryllium, barium, cadmium, thallium ~ things I barely know how to spell let alone understand how I accumulated.

Although the cadmium I know - that's the legacy of 20 years of smoking those stupid cigarettes.  And yet even it is fascinating to realise that the low zinc levels I have obviously suffered from for decades may have contributed at least in part to why it was that I began smoking cigarettes - the cadmium in the cigarettes is a compensation for the effects of low zinc, and provides a grounding feeling to compensate for the spaciness caused by high copper.  Who woulda thunk? 

When I'm not having meltdowns and feeling that horrible familiar vulnerability when the world just crashes in like a tsunami and my body crashes down and I just can't cope, I'm starting to feel good again.  The hellish paranoia that has fogged up my body like my own personal cloud is beginning to go and I will never be able to quite put into words just how glad I am about that :)

In the last 10 years I've noticed a greater desire to begin gardening more, and growing more of my own food, but it's been something I haven't been able to put into much effect.  The gardening bug seems to be one that hits people as they grow older, especially women.  It hasn't been able to hit me yet, though I invite its invasion.  It's hit my auntie though, Tulla's daughter.  I never knew her to have a green thumb before but now, in the past several years, her garden has become a flourishing beauty full of variety, and she a member of her local gardening club.

The propensity towards gardening as you get older I think is a deepening into an understanding of and connection to your roots, both literally and figuratively.  I invite the gardening bug invasion.

Wake up and it's that space again. Feeling these feelings that are so common to me, which have been so much a part of my experience of the last several decades. Sometimes for long stretches on the periphery, and then they return. When they have returned, I have thought that they were personality defects, flaws requiring psychoanalysing. To realise that they are biochemistry is like a reprieve I am still getting my head around.

Through the prism of those feelings I am trapped and enslaved. I project it out onto the world (where truly there is so much enslavement), but really, what it is that I am enslaved by is going on within my own body. But there is freedom. I feel it, when I'm not feeling like this. At those times it is like a fog which clears and I am back to being me again and it's as if this never happened. But then the fog closes in again, and sometimes I don't even realise.  I have been struggling against this particular fog for so very long.

I feel apologetic for the fact that I have woken up unhappy this morning. What chance do I have when on opening my eyes I'm already swimming in the stress space, with that metallic taste in my mouth?  But this too is myself. This has been myself for as long as I can remember, and it's been like something trailing around behind me, a stink, like a bunch of old sausages.

I don't like to write here when I am feeling bad. It feels totally self-indulgent. I feel like I always need to be perfectly upright, that to be down is a vulnerability that, added to the rest of the vulnerabilities I have been getting about with, feels like a straw floating down onto the back of a camel. Writing here when I feel bad is an imposition on a world which already has far too much ugly and far too little hope and far too little freedom.

In these spaces, the best thing isn't to try harder. The hardest thing is to try less.  It's very hard to resist trying harder when your mind is revved and agitated. But this morning it is filtering up to me, somehow, through the tiredness and the murk and the reeds from the bottom of the swamp, that trying harder is not good for my soul, that it will just make me feel more enslaved. That stopping and slowing down and going a different way can be a revolutionary act in my own mind. That if I have woken up into a bad day, that the different way is where freedom is, even if my inner moneymaker screams what about the bank balance, what about the bank balance.

Inside I have a three year old child who is furious that she is not omnipotent.

It has been so long since I have regularly meditated that now it feels like a dreamspace.

I have made myself available for a less work than usual today. Because today is a day I am struggling, and my body has decided that it won't let me sleep any longer and I am tired and enslaved. I don't seem to understand my limitations very well at all. The inner promptings come from a long way away. Up from the murk and through the reeds another part of me which sits miles aside from the daily grind tells me to stop. She points me in the direction of the desk where I have not done anything creative for literally weeks. I am tired and cold and everything feels nasty. Though it never feels like it at the time, it is the best time to return to that desk and muck around a bit. After the sauna. Remind myself that I'm free. 

The Two Sides of the Pyroluria Coin

What a strange and bipolar health fortnight.

This is the good side:

The Friday afternoon before last, I was sitting in bed in a last-ditch effort to try to study.  I'd failed dismally so far, sitting in front of the computer and trying to make sense of the assigned readings while being distracted every three and a half seconds by something other than the assigned readings.  Earlier in the day I had given in to tears in pure abject frustration.  No matter how hard I tried, I just couldn't seem to focus on the words in front of me long enough for them to sink in.  I was already getting behind in my studies, and it was only week 2 of the trimester.

Then my partner came home with the envelope which contained the test results that said that I have a condition called pyroluria.  Even though I had strongly suspected it, it was still a surprise.  Pyroluria is a condition where the haemoglobin in the blood produces too much of a particular substance called kryptopyrroles.  This substance binds to vitamin B6 and the mineral zinc, and so when the body excretes the excess, it rather unfortunately takes those substances with it.  And so I find out that I am uber-deficient in those two things.  Unsurprisingly, both are used to treat ADHD.  Unsurprisingly, people with pyroluria can't handle stress.  That'll be me, sequestered away from the world for years on end while I try and deal with why my body is so fatigued, so depressed, so anxious, why I just can't bloody cope.  I think I have the answer.

And so slowly over the past two weeks I have built up my levels of B6 and zinc.  I am taking five times the daily recommended amount of B6, and I know it's still not enough (apparently the way to measure when you are having enough is regular dream recall.  Not even close to that yet).  And I am starting to notice a difference.  The B6 in the morning and the afternoon is giving me this lovely energy.  Oh, it's nothing normal people would be able to notice.  But for me, there is this new stability I am feeling in my body, an understanding that a piece that has been missing for a couple of decades has now been put in place.  I can only imagine this energy will continue increasing.  The zinc at night (three times the recommended daily dosage) is helping me sleep.  I am getting so tired at night some nights that I could go to sleep at 10 pm if I needed to.  I can count on one hand the success I have had in managing to get to sleep at 10 pm over the years.  It would be amazing if I could.

~ * ~

This is the bad side:

I have high levels of copper.  I first suspected it over seven months ago when I did a home heavy metals test.  The resulting symptoms when I tried treating the high copper were enough to convince me that (a) this is something of what schizophrenia feels like, and it's hell; and (b) though I was only a quarter of the way through the bottle that would help get rid of this excess metal from my body, this was as far as I was able to go with it.  There was something else that needed to give.  There was something missing which was making this attempt impossible.

Hence trying the test for pyroluria.  Hooray for intuition - I stand in awe at the powers of intuition I have developed about my own body, because I was right, and a handful of jigsaw puzzle pieces are starting to fit.  B6 and zinc both displace high copper levels in the body.  These levels have become high in the first place because of the lack of those two substances in circulation.  And so the blood, in its wisdom, noticing these high levels of copper circulating within it, began the task of secretion.  If it can't get rid of the copper in any other way, it will hide it away.  And so it does - in the liver, in the brain, in the lungs, in the kidneys.

And so now I have begun reinstalling B6 and zinc, my body is taking the opportunity to get rid of the copper, now that it finally has the chance.  And so out it comes, from where it's been hiding all these years, back into my bloodstream, and if I don't have a sauna, or shoot coffee up my arse (I never did make any pretensions to this blog post being romantic), then I begin to feel those hellish symptoms again.  Like yesterday, when I didn't have time for a sauna or to shoot coffee up me bum.  I am still trying to find workarounds for the emotional symptoms.  There are certain supplements which help in the detoxing process (and certain other ones I am taking, such as chlorella), but it's a process of working out what works best.

When I feel like this, I feel in hell.  Last night, my partner quietly but forcefully said to me, "I need you to stop talking now."  I hadn't realised that I was raving, but apparently I was.  But his comment came out of the blue, and I'm a fragile soul, and so it wouldn't have mattered how he said it, I still would have broken into 1037 pieces of glass.

Because it's such a weird dreamscape from here, when I am feeling like this.  The only way I can identify that what I am feeling is spilling over into the outside world is when feedback like this happens.  And then I think of other people I know who I suspect have high copper levels, and how they sometimes have a tendency to go on and on about certain topics until I'm exhausted.  And so suddenly I realised last night that that was me, and that was how I was being.

It makes me want to run away as if my hair is on fire and live in a hole at the bottom of a bridge until I get all this stuff sorted out.  It makes me never want to have to deal with another human being again.  That's how I feel when this stuff is running through my veins. Until I stop feeling like this - which could be any time now - and then I'm back to normal again.  Normal, hell, heaven - who the fuck knows what world Susie is going to experience next hour in the rollercoaster that is copper displacement?  Which nobody else in my world knows much about.  I'm really tired of having conditions that nobody else knows much about.  It's an extra slap in the face having to explain yourself to disbelieving people.  They should be comforting me, not me having to educate them.

But then "should" is a pointless weight to place on your shoulders in these times.

But it's just one more vulnerability to pile on top of the hell that already is dealing with this stuff.  But hey, at least I'm not like this full-time. Not like all of those poor bastards getting around out there with full-blown schizophrenia.  Not like the guy I used to see when I worked in the city.  He was the gentlest soul imaginable, a beautiful man, with no home and a dose of dealing with worse than this full-time.  God bless him.

The World Bank and the IMF are probably not particularly great choices of subject matter to be obsessing about lately.  But that's where my Medical Anthropology studies have been taking me the last couple of weeks.  Is there anything more frustrating and hellish than being able to clearly see the machinations of these psychos?  And to see how long we have put up with it when we don't need to?  And how many people are still asleep to it?  And how their policies affect the poorest of the poor?  And how awesome the world would be without their evil influence?

But like I said, probably not a great choice of subject matter when you're dealing with fluctuating levels of a substance that inclines you towards paranoia in the first place.  No.  Better to lay that one down for another week. Even though it's so hard to when I feel like this.  That's another gruesome fact - whenever I feel like this, the very things I should let lay low, I can't seem to let go of, and I gnaw at them like a dog at a thorny foot.

And so this is how things are for me lately.  Depending on what day you talk to me.  And on the bad days, it depends on what hour of the day you talk to me.  On the good days, everything is coming along beautifully and I can see this lovely vista on the horizon where life gets a whole lot easier, and I get more of it back.  These good and bad days are both the opposite sides of the same coin.  This is the hell side.  And while I say reminders to myself like "This too shall pass," it won't be a moment too soon when it all does.