Losing the battles, Winning the War

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It’s a funny thing, if you had told me a year ago that I would be writing and publishing my memoirs for all and sundry to read on the internet I would have likely scoffed.  Don’t get me wrong, I had thought about writing a blog long before I actually got round to doing it.  It was just one of those things that I thought about sometimes, a bit like climbing Mount Kilimanjaro, yoga teacher training in Bali, snorkelling in Palawan, a threesome with two blonde Scandinavians, learning to play the guitar, or starting a family.  Just another item on the bucket list of life.  Something to dream of, not necessarily achieve.  Yet here I am, ten months on since penning that first piece, just back from snorkelling in Palawan, still writing blog posts. Tick. And. Tick.

I started out with the intention to use this post to write more about my experiences in the Philippines, but as I sat down and began to type, I found myself drawn towards an entirely different topic.  Rather than deny my intuition, I’ve allowed it to dictate my pen.

So what have you got instead?  Well… Me.  I know.  Sorry.  To be fair, the blog is called ‘Redesigning My Best Self’, it was always going to be somewhat self indulgent twaddle.  A friend told me it’s not a blog, it’s an open diary.  Fair comment.  Before I get going on my chosen subject, I should warn you, this is not Fun Time Frankie content.  I said in my very first post that I would be honest to fuck, so here we are, yet again, laying myself bare.  It does, however, have an upbeat ending that I think is worth the investment of your time.

My first proper post last June (link here) came about after a crisis of health; it sounds dramatic, I know, but something has been going on with my body for several years, that no matter what I try, I have not been able to find an answer to.  It has undeniably been an almost constant source of frustration, angst, and illness; physical and mental.  I have seen countless doctors, including functional practitioners, at my own considerable private expense.  Some provided theories and recommendations, others just shrugged and said “you’re fine, it’s all in your head”.  I have undertaken all manner of tests.  I have consumed just about every supplement under the sun.  I have eaten the ‘healthiest’ organic paleo diet of anyone I know.  I work out, I walk, I get in the sun, I socialise, I try new things, I try to do good for others, and I look on the bright side, most of the time.  I do everything one is supposed to do to live a healthy, happy life.  What has been the result of these endeavours?  I am a bit better than I was two years ago when I was barely functioning at all.  I am, however, not well.

Anyone who reads this blog regularly will probably have gathered that my health has been an ongoing problem.  Sometimes I disguise my torment with stories of experiences, escapades and observational theories about life; at other times it has been all too obvious from my writing that I am struggling, with ‘something’.  Nothing, and no one, has been able to give me an answer, or a solution to that ‘something’.  Not even my fave personal development guru, Tony Robbins.

Until now.

It is the “something” in that sentence above that has been the most problematic.  Symptoms can be tolerated, managed to some extent even, but the not knowing why I have those symptoms has been by far the most difficult element of the experience.  The complete inability to label what I am experiencing has lead to feelings of weakness, inadequacy, confusion, frustration, desperation and loneliness.

It’s not loneliness derived from a lack of people around me, I have friends, but without a label for what I have been experiencing, it has been nigh on impossible to explain, or relate.  Unlike an alcoholic or a cancer patient, there is no forum or support group.  I have not been able to identify a fellow sufferer who gets what I’ve been going through, or can tell me that it will get better.  Occasionally I try to explain to people how I feel; chronically tired and unwell; that I have weird symptoms that come and go; or that my brain simply doesn’t work properly a lot of the time.  Inevitably I walk away from such exchanges feeling deflated, boring, lost, and honestly? Like a pathetic hypochondriac.  I hate it.  I’ve lost interest in my career.  I’ve lost interest in relationships and sex.  I have lost interest in food, and drink.  I rarely play sport after a series of little injuries culminated in a broken ankle late last year.  I used to be quite the socialite, now I’m borderline reclusive.  I used to religiously read the news, today’s current affairs hold little interest. To be completely honest with you, dear reader, there is little that I get excited about anymore.  Not even Netflix.

Everything I do has been shadowed by this mystery illness.  Holidays, parties, days outs, weekend trips, gigs, work events, weddings, everything.  That isn’t to say that I haven’t tried damn hard to maintain and develop my life, but I have failed.  The scope of my life has gradually shrunk.  I have striven to keep a positive manner about me as the losses mount up;  Friendships, hobbies, interests, and general enjoyment of life have all dwindled.  Potential relationships have been tragically stunted before they had a chance to flourish.  But at no point have I given up.  I fight everyday to laugh and joke, to be good company, to see the good stuff, to hope for better days, but the sad reality is that I have come to the point where I have just one solitary focus:

Getting better.

Everything else feels like background noise.  Everything.  I have tunnel vision.  Maybe that is selfish, but devoid of any help, I’ve had to be that way.  When I’m not undertaking the basics of being alive and trying to keep my job, my mind has been interested in only one thing; Fixing myself (ok, and writing this blog).  I’m not depressed, there is no black cloud, I enjoy frequent moments of joy throughout most days, and my spirits remain remarkably high, but I am, underneath the surface, battle weary.  Fighting the good fight for the past three years has undoubtedly taken its toll.

So what are these symptoms that have had such a detrimental impact on my life?  Invariably I sleep badly, waking up through the night.  Most days I arise feeling sluggish and tired, my head aches, my eyes are puffy, with dark circles, my sinuses congested.  My energy in the mornings is low, I cannot remember the last time I sprung from my bed ready to tackle the day.  My brain fails to perform, especially in the mornings.  I forget what I’m saying half way through sentences, I miss words, I forget names.  I don’t know what the early stages of Alzheimer’s feels like, but I imagine it’s something like this.  In meetings at work I have to plan my sentences in my mind ahead of saying them, and hope they come out as I intend.  Often I miss my cue to speak.  My responsiveness, spontaneity, wit and creativity are all curtailed.  My digestion is crap, my skin gets weird breakouts, I have persistent muscle pains, especially in my back and neck, my joints crack, my toes tingle, and my libido is whack.  The neurological symptoms tend improve as the day goes on, but they nearly always return with a vengeance each morning.  It’s like I go to bed and someone slips me poison whilst I sleep.  It’s a problem, it’s not sustainable, and alarmingly, it has been getting progressively worse.

The miserable morning faces. I take these pics of myself when I’m feeling like shite to check to see if I look as bad as I feel. And occasionally when I feel great to remind myself what is possible.

Until, that is, I went to the Philippines just under a month ago.  After 3 or 4 days in Palawan, living on a boat and in bamboo huts on tropical beaches, diving in and out of the sun and sea all day, away from my life in Sydney, and modern life in general, things started to improve.  Massively.  “Wow, what a surprise, everyone feels better on holiday” I hear you cry.  Fair point, I hear you, but bear with me.  Within three days of being back in Sydney all of the symptoms had returned.

Here’s where I may lose you.  I have long suspected that my problems might be somewhat attributable to mould.   I sold my car last year as I became convinced that the air conditioning gave me a headache every time I turned it on.  Yes, I felt like a loony person.  No, I didn’t care.  I have gotten off of buses, walked out of shops and even avoided my own apartment when I have sensed mould is in the air.  Sydney has a hot and humid climate for much of the year, and it has a lot of old rental accommodation, complete with old carpets and poorly serviced aircon units.  It is fungus heaven.  If you vacation in the tropics you’ll know that their abodes typically have tile or marble floors. In Sydney, presumably because it’s cool for four months of year, it’s pretty normal to have carpets.  Mould loves an old carpet.

It’s the hypochondriac’s dream, is mould.  It can be blamed on all manner of bodily issues, from nosebleeds to cancer, but it’s not necessarily easy to spot its location in your home or workplace, and proving it to be a problem in the human body is even harder.  However, driven by the widespread mould toxicity following hurricane Katrina in the States, and therefore commercial viability, free market forces are doing their thing, and science is starting to catch up.  Amazon has many books on the subject (I own most of them).  Pubmed is littered with peer-reviewed studies.  iTunes has all manner of podcasts.  All focused on Mould Sickness or Chronic Inflammatory Response Syndrome (CIRS).  And now, finally, they have a test for it.

Four weeks ago I paid $900 and sent off some yellow pee to a specialist lab in New Mexico, USA to have it checked for mould waste products, or ‘mycotoxins’.  I won’t bore you too much with the science, but lots of the common mycotoxins are bad bad news, and what’s more, roughly 25% of the global human population has a genetic makeup that makes them poor detoxifiers of these mould toxins.  If you somehow obtain a massive slug of such toxins, as I probably did when I first moved into a dark, musty smelling apartment in Bondi back in March 2016, and are one of the unlucky 25%, as I probably am, serious health issues could well be on the horizon.  Unfortunately most doctors are completely clueless in regards to any of this.

So could mould be my problem?  I’ve spent a lot of time over the years suspecting that gluten was the issue, I stopped eating it eight years ago because something was seriously messing me up, and it worked, I improved, a bit.  But here’s the thing: grains, the glutenous ones especially, are often ‘mouldy’ due to the way they are stored.  All these years of digestive and cognitive issues – could they actually all be down to my genetic inability to expel penicillin and his mouldy cousins?  I’d read enough scientific literature to believe it entirely possible.  I’ve spent tens of thousands trying to find an answer, $900 felt like a bargain, if only to rule it out. I’ve lived in fear of gluten for years, assuming my ongoing issues were in response to repeatedly eating or drinking something contaminated.  What if I was right to be fearful, but I was fearing the wrong thing…

Well…. on Tuesday last week an email from the lab in New Mexico landed in my inbox, and finally handed me the answer I’ve been searching for, for a decade….

GPL Myco

So what does that all mean?  It means I have a bunch of ‘mycotoxins’, specifically Ochratoxin A (from the common mould ‘Aspergillus’) floating around inside of me. Constantly inflaming my bodily tissues and activating my immune system.  So what does that mean…? Well here’s the really ‘fun’ bit.  The same report goes on to state:

Ochratoxin A (OTA) is a nephrotoxic, immunotoxic, and carcinogenic mycotoxin. This chemical is produced by molds in the Aspergillus and Penicillium families. Exposure is done primarily from inhalation exposure in water-damaged buildings

Ok, so that holds up my theory that this may have really kicked off when I moved into a damp apartment three years ago.  It also means that this stuff inside me is kidney-killing (nephrotoxic), cancer-causing, and immunity compromising.  Awesome.

Minimal exposure can occur through contaminated foods such as cereals, grape juices, dairy, spices, wine, dried vine fruit, and coffee.

Would explain the facial flushing, sinus congestion and headaches that I often get when I consume cheap wine, aged cheese or crap coffee.. Oh and the cereals…like gluten-containing wheat, rye and barley?  Ohhh…..

OTA can lead to kidney disease and adverse neurological effects. Studies have shown that OTA can lead to significant oxidative damage to multiple brain regions and is highly nephrotoxic.

Oh great, so it is destroying my brain after all.  That would explain the sleep issues, the forgetfulness, and the headaches. Good to know.

Nb. There’s something interesting to note here; my dear mother has suffered with crushing migraines for as long as I can remember, and she has problems with her kidneys… I hope she doesn’t mind me telling you this, but I am made of her genes, and this is a genetic problem. She’ll read this, and I want her to take me seriously, attempt a low mould diet and have her home checked by a professional.

Dopamine levels in the brains of mice have been shown to be decreased after exposure to OTA. Some studies have hypothesized that OTA may contribute to the development of neurodegenerative diseases such as Alzheimer’s and Parkinson’s.

Dopamine: The ‘feel-good’ hormone.. The neurotransmitter responsible for pleasure and reward.  That would explain a lot.

Treatment should be aimed at removing the source of exposure.  Studies have also shown that OTA is present in sweat, which supports the use of sauna as a treatment to increase the excretion of OTA.

Removing the source of the exposure…. sounds like it’s time to move. They say you can’t run from your problems. This is an exception.

Ps. Who bought a sauna 9 months ago?  (link here)  And was widely derided as ridiculous for doing so..

THANK FUCKING FUCKETY FUCKY FUCK FUCK

Finally.

Earlier in this post I said I was battle weary, which I am, but I’m not beaten. Up until now I’ve been like the US military fighting the ‘war on terror’, confronting a faceless enemy, and so it’s been an impossible campaign.  I know my enemy now.  It may have won the early battles, but it’s time for some new tactics.  It’s my war to win.

It’s on. Bring it.

 

2 comments on “Losing the battles, Winning the War”

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