My Story Part I

I am a writer, born in the UK and living in Brisbane, Australia. I have two precious kids, a house. In short, a nice life.

None of it is particularly remarkable except the journey I have been on in the past couple of years, which has given rise to this blog.

So I’m going to take you on a little trip with me here – a trip that saw me go from an alcohol-loving, stressed out, social butterfly grappling with first time motherhood (as we all do) to a person that lives and breathes health solutions and empowerment and mind body spirit wellness.

It started with what I call my health crisis.

Which happened at the start of 2014. In Darwin.

That year I was smashed with debilitating fatigue, shortness of breath, excess weight, muscle weakness, brain fog, memory problems, pins and needles in the hands, frequent urination and a boatload of irritability.

Not pleasant.

And that’s on top of my lifelong case of IBS, addictive tendencies and general ‘stress’ – which were things I had just learnt to live with over the years.

It was not until late 2014, when my fatigue actually started to lay me on my back, and stopped me from getting to work and looking after my child, that I started to discover the answers.

Basically in the nick of time…

A year of seeing GPs and asking what was wrong, and having every test from bowel cancer to Ross River virus, had proved fruitless.

In the end I was told that I had Chronic Fatigue Syndrome. Also that it may go on for some years (years!) and there wouldn’t be anything I could do about it.

I protested that it was actually stopping me from being a mum. And that I was wasting days and days laying in bed, feeling like my batteries had drained while the to-do list in my head just kept getting longer and longer.

I physically couldn’t get up and live my life, I told them.

I couldn’t go to work, I told them.

I was 37, I told them.

There was nothing they could do, they said.

Even the memory of being told this stings. It equally crushes and enrages me.

I felt like I was being left for dead. I felt like my child was being left for dead.

How could I just be told to accept the fact that I couldn’t actually function properly any more? While also being told that there was no reason anyone could pinpoint for this problem?

And how many other people were there out there in this same boat?

During this year of GP visits, I also had started seeking my own answers. Despite always having generally trusted doctors, I found it necessary.

They weren’t fixing me. It was survival.

On the advice of Google I had diagnosed myself with adrenal fatigue and started doing the full supplement and diet plan, started drinking kombucha and seeing a counsellor.

I had worked hard. I had stayed positive. I had tried.

And now I was left staring at this GP with tears running down my face.

She wasn’t nasty. She was kind. She acknowledged that fatigue on this level is not just depressing but actually distressing.

Panic inducing.

She was right.

‘I feel like I must be dying and no one can tell me why,’ I sniffed in a wild-eyed way.

She smiled encouragingly. ‘You’re not dying,’ she said.

And this was – no shit – the most positive thing she could find to say.

I started to gather up my things.

‘You could always go and see our local dietitian?’ she suggested casually. ‘Maybe he could help you get some energy back?’

I nodded, but on the inside I was shouting swear words at full volume. My counsellor had previously suggested I see this guy too. Apparently he was really good and kind of a big deal in Darwin.

But you know, I was probably dying, and he was a dietitian.

It was going to take more than mung beans to fix this mess.

Being that my other options were scant, I went to see him anyway.

After a long, extremely thorough, consultation going through many many details about my life – what I ate, exercise, stress levels, details of my first pregnancy, all past health problems, and even the type of person I was – Dr Dietitian said ‘We’ll have this figured out asap.’

I was aghast.

The confidence! The self belief! A dietitian telling me he could do what none of the GPs had managed to do.

Perhaps he was deluded? Or an overconfident narcissist? Or just mad?

But my best and only option was to wholeheartedly follow all his advice to the letter and hope he delivered.

Besides he was also a Nutritional Biochemist – which sounded impressive.

After some testing it turned out I had the MTHFR 677T gene and was heterozygous (which meant very little to me). I was told I needed to eat lots of leafy greens and try folinic acid.

I also was reading high in one of my four B12 levels – which actually meant I was low in B12, and had to have B12 shots.

Confounding.

These changes made me feel a little better. But the fatigue continued to smash me.

I embraced nutritional medicine as any journalist would, and Googled the crap out of everything which seemed remotely relevant.

‘What about my adrenal fatigue?’ I kept asking Dr Dietitian.

‘Let’s test and see what level of adrenal fatigue you’re at’ he finally, patiently, suggested.

And then two weeks later:

‘You don’t actually have adrenal fatigue.’

It appeared Google and I had made a lengthy and expensive boo boo.

So I stopped covering my food with flaxseed oil and eating dried seaweed, and next cut out gluten – on Dr Dietitian’s advice – to see if it would help with my stress, fatigue and IBS.

After a couple of weeks, this no gluten thing actually seemed to be working. Despite the trauma of gluten free bread, I felt even better still.

So I stayed off it.

I had Leaky Gut Syndrome, I was told, which meant probiotics were a good idea. And that explained why my habit of drinking kombucha daily (for my non existent adrenal fatigue) had been the only thing that had made a difference to my energy levels in the past few months.

Google was partly redeemed.

And then a few more investigations and a bit more research on my part led us to have this conversation:

‘I’ve been reading about this thing called Pyroluria.’ I said. ‘I think I’ve got a few of those symptoms.’

Wry look.

‘You don’t present like someone with Pyroluria,’ he said.

‘What do they present like?’ I said.

‘Like shouty, angry, out of control people with pale skin and often, red hair. It’s associated with criminal behaviour.’

[I’m paraphrasing, but this was the gist.]

I thought about myself, my history, and I thought about my family.

‘I’ll do the test please,’ I said.

My pyrrole reading came back at 46. This was a big yes to Pyroluria.

Levels for normal people are 10 and under.

I am not sure if you have ever had the experience of being diagnosed with a disorder, and being thoroughly over the moon about it. But this is how I felt in that moment.

Elated.

Like the world was about to start making sense again.

Because my random symptoms weren’t random any more.

There was a name for what I had! I could explain it to people!

And with the diagnosis of course came a treatment protocol. A solution.

Hope.

In a very abbreviated version of the truth, Pyroluria (or Pyrrole Disorder) leaves you short of B6 and zinc. All your B6 and zinc leaves your body in your urine.

So, the main mode of treatment is to supplement with large doses of B6 and zinc.

Now this isn’t always a quick fix, and takes some people a bit of time to build up to these levels, and some a long time to feel better.

But for me, and for lots of people, it is and was a quick fix.

Three days after supplementing with my Pyrrole Primer, my ‘chronic fatigue syndrome’ went away. Altogether.

I had energy. I felt great. I hadn’t felt so good in a very long time.

I couldn’t have been more gut-wrenchingly relieved about it. It was like waking up from some sick dream where your whole life has fallen to bits around you, and realising it wasn’t real.

Emotional doesn’t cover it.

Two weeks later I was in the gym. And I started going four times a week.

This was doubly amazing as I have never been someone remotely interested in going to the gym four times a week.

I was clearly just punchdrunk on all the energy I had.

My skin broke out into blackheads as I went into some sort of detox. And when it cleared up I looked better than I had in a long time.

My hair looked nicer.

And I slowly started to wonder what this new found feeling of relaxation was. Everything was easier. Life was happier. Calmer somehow.

After pondering it for some time, the realisation started to dawn on me that I must have spent my entire life thusfar in a state of anxiety!

My. Entire. Life.

This newfound feeling was not some post-nutrition high. It was normality!

It was the way most other people felt.

Because, it turns out, other people don’t ruminate over something someone said 15 years ago, or think that they always have to overcater in case they ran out of food, or check that their child is still breathing. At least not all the time.

Dr Dietitian was fixing things I had never realised were actually wrong.

Big things.

I had to watch my supplements, have B12 shots, monitor what I was eating, stay off gluten, stay on kombucha. Eat a whole food diet where possible and get plenty of sleep.

But I felt like a new person. My weight started to drop, and my energy levels went steadily up.

As it turned out, this experience really was the start of me becoming a new person.

I was like religious convert about nutritional medicine. I still am.

Once you have seen the truth about the massive role nutrition plays in everybody’s health, you cannot unsee it.

You also cannot unsee the failure of the medical system to fix problems that nutritional medicine – simple supplements – can fix.

It’s wrong that this happens.

I have found many of my answers – and even more beyond the bounds of nutritional medicine – but there are so many others out there who have not.

And it makes me want to weep.

I stayed on this path through necessity, learning and investigating, as is my wont. Tweaking and dealing with other issues as they have come up.

I have had more health revelations since then.

But suffice it to say, I have come out a changed person. A better person. Being that I can now function and raise a child and exist without struggle.

And that makes me healthier – and obviously far happier.

So I hope telling this story can inspire people to find answers too.  Don’t wait until you are half dead like I was. Have a browse through this site and see what you can find that might help. Investigate and try things.

You deserve to feel well. And you have to find the ways to make that happen.

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