Category Archives: Chronic illness

Internal dizziness driving me crazy!


For about seven weeks now my brain has felt as though it is a spinning top.

Some days it is bearable, others are filled with headaches, migraines, nausea and very little sleep as it worsens when I lie down. To be honest it is incredibly difficult to live with and I wish someone would put me in a coma until it was over. It is that bad.

It began when I was taking yet another approved drug for my condition and lasted several weeks, so I stopped taking that drug. My doctor, a wonderful woman, during my last visit said it could take a while to wear off. That was a month ago.

Since then I started another drug to help my chronic illness symptoms of complete body pain, incredibly sensitive and painful skin (every square millimetre), horrendous headaches, zero energy, the dizziness (I have had it off and on for nearly three years now) and general complete lack of quality of life.

It is, by my count, the eighth or ninth drug I have tried, perhaps more. Each time you have to build the dose slowly over time, then if it doesn’t work or you suffer a side effect (I’m good at those, there are dozens to choose from) you have to slowly reduce the dose to get off it. So months are spent doing this just to feel worse.

Why? Because they are all so incredibly dangerous. Eaxh one is highly addictive, has extensive withdrawal symptoms and can cause other significant damage if used too quickly, or just too much. All very dangerous to those who get fed up with feeling ill and so just keep increasing the dose, until they die. Opioid based drug (which the vast majority are) overdoses kill more people in the US now than car crashes.

Cannabis oil doesn’t kill anyone.

Placed on the skin and without any THC there is no high, are no side effects and no awful reactions if you increase or decrease the dose.

But it is illegal here in Australia without paperwork a mile high and a ‘luck of the draw’ response to your application. Less than a few hundred have been successful in over a year. You then need to resubmit more paperwork after six months.

You also need a letter of recommendation from a specialist, most of whom somehow choose not to believe over thirty years of pure and incredibly extensive scientific research into the positive effects of CBD (cannabis) oil.

Why? Perhaps because it is not backed by a big pharmaceutical company so it doesn’t come with trips to Hawaii for ‘education purposes’ or first class tickets to highly desired travel spots (‘conferences’) if you prescribe a set amount.

The only people who can make money out of it are governments, in 40 countries, who have legalised it and tax it. Some States in the US have completely paid off their debt and still have money left over for housing homeless people because the allow and tax this huge industry.

In Australia we do nothing. There is no financially backed lobby group that can take you to a conference at an exotic location to educate people of its benefits, just several hundred thousand sufferers (probably many more) who know it works yet are criminals if they use it.

Yet who are the criminals here? Those who choose to use a naturally occurring herb to take away their immense pain and suffering, or those who prevent the hundreds of thousands of others from doing the same because there is no patent and therefore no money to be made, no ‘promotions’ to offer.

The big pharmaceutical companies would make nothing from CBD oil and it is banned. Coincidence?

When will our governments, State and Federal, realise the amount of tax dollars they can make, the hundreds and hundreds of jobs that can be created, and most importantly the people whose suffering they can ease just by legalising a herb? It has more scientific research behind it than most of all the other drugs I have taken, combined, that cause emergency trips to hospitals and help overload our stretched system. Cannabis oil doesn’t.

It is such a clear decision, yet has not been made, that money must be the answer. Whose pockets would be lighter if people started to take something with no side effects or addictive properties instead of extensively promoted prescription drugs?

Pharmaceutical companies.

Wonderful to know what their main motivation for being is. In fact just read the Executive Summary of the recent interim report into our financial industry here in Australia and the same applies. Greed.

In the meantime I’ll just keep spinning. If you thought your last hangover was bad, try one that has lasted six weeks and counting.

I know what can help me, CBD oil, but greed and institutions with their aged heads in the sand prevent me from accessing it.

Aren’t we meant to be a humane society, where the sick are allowed to be treated with what makes them better, no matter who benefits?

It’s all going to hell in a handcart


Politicians found guilty of lying to Parliament by a Senate Committee but keep their jobs, rich Catholic schools receiving billions of dollars, family child carers and carers for ill family members paid below the poverty line, pensions not increased for over 35 years but top tax rates raised allowing the highest earnings with the lowest tax rates ever.

This is the new Australia, and I for one am devastated that in ‘growing up’ we have become, at the top and fast filtering down, just a bunch of selfish hyperactive kids out for what we can get for ourselves. Five Prime Ministers in five years is testament to this.

Local Councils charging exorbitant rates that grow above inflation every year, some of the highest electricity prices in the world, car registration costs tripling (or more) within the last five years so now old and worthless vehicles cost more to register than they are worth.

People in institutions like unions, Councils, government found to be spending as much as possible as if it is their right to do so, not caring the money was paid by us, the electorate.

Fines increased by multiples, not even a backwards glance at the CPI.

Banks and Insurance companies charging us for services we do not receive, for products we do not need, even if we are dead.

We complain about a seemingly corrupt-ridden USA, yet in our own society we trample on the rights of individuals, charge way more than necessary for vital services (unless keeping a growing beurocrocay well fed is some sort of benefit to us all) and keep a vast number of our fellow citizens below poverty, with pathetic allowances that are meant to help those who fall between the cracks, not actively widen those cracks.

And we wonder why many of our best and brightest move overseas? If I had the option I would seriously consider it myself.

We have far too many rules and regulations, our nanny state is now a baby state. The fines for minor transgressions are so high that those just surviving are pushed one step closer to poverty, even with both couples working.

The reaction to all this from the majority of our ‘leaders’ and politicians? They ignore their duties and have no KPIs or accountability to those who voted for them and pay their wages and perks. Instead of working for us, as they all promise to do prior to each election, they spend their time fighting for pre-selections, factional votes, ministerial positions that cover areas they have no experience in, and ultimately chase how many ‘numbers’ they can control which somehow defines their own importance, and therefore how much power they can wield.

Already the sixth Prime Minister in five years is jockeying for position, even before next year’s election.

Carers and volunteers contribute far more to this nation than our politicians yet live in poverty.

Either a massive shift is coming from someone with the guts to make serious changes, or a quiet revolution of a significant number of independents being elected, or worse, will cause our country to have the massive look in the mirror it desperately needs before it implodes.

Since when is it a crime to want to get better?


I share a chronic illness with millions of people worldwide.

It gives me, on an almost daily basis, more pain than I have had in my life in total, until now.

All of the drugs that are recommended for us have significant, serious and irreversible side affects.

Alzheimer’s, migraines, nausea, liver issues, high cholesterol and on and on and on.

So why are they recommended? Because big pharmaceutical companies make them, doctors (who are too tired, overworked, disinterested or just don’t care) prescribe them, and they make billions of dollars. For Research and Development we are told. Or maybe bonuses and conferences.

Why, in 2018, can I not get access to the one medicinal supplement that has more than thirty years of extensive, proven, large sample size research? Because it is illegal to do so here in Australia.

In the US it is legal in many States and Canada will be making it legal nationally this month. The US has reaped massive taxation benefits and Canada will follow.

We could have been manufacturing this by now, and collecting taxes I would be more than happy to pay.

Even if South Australia went ahead and completely legalised it’s distribution but controlled it’s growth, the tax benefit would pay for the new South Road within ten years.

So why not here? Why is Australia yet again at the bottom of the pile of innovation and acceptance of irrefutable evidence from over a dozen countries?

Perhaps if our Federal politicians popped their collective heads out of the sand, followed by the presently archaic national president of the AMA (Australian Medical Association), instead of fighting over who has the biggest office, we might actually move forward.

So tens of millions of us worldwide, and approximately two million Australians, suffer excruciating pain every day of our lives because the very people who are meant to have our best interests at heart cannot see past their own reflection.

Wake up. Eminent scientific researchers worldwide agree that Cannabis Oil eases our pain, does not have any side affects and is not addictive. And we will pay taxes on it.

Not addictive? Well then no long term money in it for the pharmaceutical companies to produce it, and so overdoses of OxyContin (the leading recommend drug) kill more Americans than car crashes each year, and we are following closely behind.

A stroke of a pen would give us back our lives, yet it is more important to get a spot on a shock-jocks radio program or to discuss who gets what Ministry.

I think I might join the exodus and move to Canada.

Cannabis oil still ostensibly illegal in Australia


Cannabis is a herb, so why don’t we make tumeric illegal instead?

I’m sure it has the same amount of side affects and addiction concerns.

“Turmeric Contains Bioactive Compounds With Powerful Medicinal Properties. Turmeric is the spice that gives curry its yellow color. It has been used in India for thousands of years as a spice and medicinal herb.”

Sound familiar??

Why is one accepted and the other not?

Exactly like the flu virus, only completely different


The flu virus changes every year, making it difficult to treat and meaning a different vaccine is needed yearly.

With ME/CFS and Fibromyalgia the treatment changes almost for every person, so different treatments and drugs have to be tried for every person to find one that helps.

And you get better from the flu, you don’t get better from what we have.

So in fact it’s completely different from the flu virus – my bad.

So how do you find a cure for something that affects those who suffer it so differently? There are so many stories of different drugs that ‘gave me my life back’ that it is impossible to engineer one cure for us all.

Of course I hope I am completely wrong.

There is of course one supplement that actually works for over ninety percent of us – cannabis oil. No THC so no high and therefore no possibility of addiction, but because of the word ‘cannabis’ it has more opposition than an Australian Prime Minister.

There is more than thirty years of science that proves it works, has no side affects and is not addictive. Had it been developed by a large pharmaceutical company it would already be on the shelf.

Unfortunately for the pharmaceutical companies they have no money invested in cannabis (to my knowledge) so they help form the ‘against’ argument – no profit, no health.

If I won the lottery I would start a business here in Australia producing cannabis oil and I would pay taxes, making the government a fortune and a few hundred thousand people feel human again.

Why is it so difficult?

If we have trouble describing our illness how can we expect others to understand it?


For my fellow sufferers of Fibromyalgia, ME and CFS we have a unique issue.

To all outward appearances we appear perfectly healthy, and yet, as I have explained in many previous posts, we are anything but.

I will spare regular readers the long list of ailments we suffer from. The main ones for us all are pain all over our body that never quits, dizziness, brain fog and devastating exhaustion.

I think this is enough for people to realise that we cannot be judged by how we appear. And yet many do.

Unfortunately if someone asks what we suffer from we cannot say ME or CFS (at least in my experience). Firstly they have no idea what ME is (say the full name and watch their eyes glaze over) and secondly mention CFS and you risk receiving “oh you’re one of those” looks. Everyone is tired in today’s world, and if you call it exhaustion people have difficulty making the distinction.

Fatigue, exhaustion, aren’t they the same? Well no actually. Fatigue means you are very tired whereas exhaustion for us is not being able to get out of bed, sometimes for days at a time.

Still, it doesn’t quite get through to them.

Fibromyalgia though, well that’s a lovely long and confusing word so it must be important, plus didn’t one of those pop stars cancel a tour because of it? But she’s alright now though isn’t she, so when are you getting better?

Hmmmmm….give us patience.

Telling people there is no cure still doesn’t seem to sink in, because the next time you see them you are usually greeted with, “Hey how are you feeling, any better yet?”

So, what part of ‘no cure’ did you not understand?

Actually, I believe it is our fault that we receive these reactions. If people do not understand them it is the message and the messenger that are failing, in my opinion. Harsh that might be, but I believe we need a simple, easy to understand explanation of our illness or we will never be understood.

Suggestions? Mine is rather simple and to the point.

“I have Fibromyalgia. Basically it means every nerve in my body has decided to tell my brain I am in excruciating pain 24/7, without any reason, and there is no break from this as no-one knows why it happens or how to fix it.”

I know this leaves out many of our symptoms, but I find it gets the message across. If they want more information then go for it, but in the interests of raising awareness for our condition I find it is a great place to start.

If we try to tell them everything they will remember nothing, so baby steps are required.

If you have a better response please, tell me so I can use it!

By the way, as a conversation starter and to add to the credibility of our condition, please visit The Awareness Store and get yourself a Fibromyalgia bracelet or necklace or, if you’re daring enough, a t-shirt! No, I receive no commission or benefits whatsoever, I just think they are a great idea and my wife and I wear their purple bracelet.

It’s a great conversation/awareness starter, and they can be found here.

No, were are not antisocial. Just chronically ill.


One of the biggest issues I encounter with family and friends is, “why don’t we see you much anymore? You have withdrawn yourself away from us?”

My standard response is, “I’m home 98% of the time so you know where I’ll be, just let me know before you pop in so I can try to look respectable or, worst case, ask you to please visit on another day.”

We are not withdrawing, in fact we crave contact with others. It is just that we often have no energy to hold up a conversation and it can take us days to recover from one.

Nothing personal. In fact we love you dearly and appreciate enormously your support and concern for us. You have no idea what that means in our daily struggles and we simply cannot tell you how grateful we are!!

So please understand we really want to see you, our lives are utterly boring without you, just let us know before you pop in.

Unfortunately many will still see this as you withdrawing and some will take it personally, but we need to put ourselves first or our condition will never improve.

We love seeing people, it makes us feel normal and is often the highlight of our day, we just have to be careful as to which day we choose.

Forgive us our daily absences, they are not an intentional barrier. We prefer human contact (as do we all), just don’t expect a tidy house or me in anything other than my PJs.

Most days we are silently screaming for a break in our boredom, so come on in, you know where we are, we’re not going anywhere!

What’s in a name? Everything!


The world renowned scientists in Israel have 30+ years of verifiable studies showing that CBD oil significantly reduces (and in some cases erases) chronic pain with no side-affects, and it is not addictive.

Other studies around the world have had the same results. Even medical studies here in Australia.

Yet we (those of us who suffer daily, with no or very little quality of life) are not allowed to access it because ‘wowsers’ hear the letters CBD and react with, “That’s cannabis! You just want to get high! Just like those 60s hippies!”

CBD (cannabis oil) contains NO THC, the stuff that gives you the high, so NO we CANNOT get high, we just want our chronic, debilitating pain gone. Oh, and to live a life approaching normal would be a huge bonus, thanks.

So if it’s the name that is causing all this resistance, why not change it? Call it something in Latin, people seem to love that. Or just something unpronounceable and therefore important-sounding like all the other drugs on the market, that are addictive and have a list of side-affects that take fifteen minutes to read and over two hours to understand. Then there would be no overreaction.

If they changed the name to simply ‘vitamin oil’ there would be no problem. Vitamins are easily imported, advertised and sold with claims that they ‘may’ assist every sickness known to man. I am sure it would be government approved within days, if government approval was even required.

But it currently has the name ‘cannabis’ in it so I must be a strungout hippie, chasing a high.

It’s all in the name.

People cannot get past the image that pops into their head when you say ‘cannabis’, of smoke filled rooms and people rolling around in their own psychedelic world. Yes, it should be their problem and not mine, but I have been in constant pain for over two years now because people cannot let go of their deep-seated biases.

I must admit that, until I became chronically ill, I probably would have thought the same – hippies out to legalise their highs from smoking weed.

It is a very deep-seated stereotype.

So I cannot blame anyone or get angry, there isn’t any point. I will, however, continue to write about it here and to my local politicians because chronic full body pain, with not a second of rest in over two years, can really get you down.

Then there is the massive financial saving.

I read daily of people with my condition, or worse, calling ambulances and going to hospital so they can be placed on higher pain medication for a while. Each visit costs you, the Australian taxpayer, thousands of dollars and clogs up an already stretched health system.

Personally, over the next few years I could save you all tens of thousands of dollars if I was allowed to buy what I know helps my condition.

Yes I can try jumping through hoops and attempt to navigate a mountain of red tape (and I really mean a mountain because I have seen it), but that costs a fortune in time and money (a medical professional has to fill it out, paid by Medicare out of our tax dollars) and I don’t think I would survive the stress.

Red Tape. If only we could grow cannabis oil as quickly as Red Tape, everyone in pain would find instant relief.

The money we sufferers would save the government in unnecessary ambulance callouts, hospital stays and subsidised (addictive) painkillers would be in the millions. Money I am sure you would rather the government spent on other things, or even better returned to your pocket.

Which leads me to my final point. With dozens (closer to hundreds now) of studies over decades as proof that CBD oil is safe, not addictive, not capable of giving anyone a high and yet people are stopping us from accessing it, can we sue these people for the pain and suffering we go through every day?

It is criminal, in my pain-filled opinion, that I know what helps my chronic pain, I’m prepared to pay for it myself and save the government thousands in subsidised medicine, but I cannot buy it because the government here disallows anyone to import it, or sell it without a pathetic initial prescription that lasts just two months.

Alas it is all in a name. How about we call the oil Fred? Fred oil sounds pretty harmless to me.

Understanding is nearly non-existent in a world that doesn’t believe


Horrendous full body pain, from head to toe, for years on end. You either come to terms with it, or it destroys you.

I have read research papers (yes published in A Class Journals for those of you who don’t listen to anything else and are therefore, to some extent, blinkered) that state the pain that fellow sufferers and I endure is very similar to the pain a cancer patient suffers during their final three months.

I even read an online post from the family of a woman who died suddenly. She had suffered our dreaded invisible Fibromyalgia and ME/CFS for many years but her sudden death was a mystery. After her autopsy it was revealed she was riddled with cancer, cancer that started many years after her Fibromyalgia and ME/CFS.

Her pain was so bad she did not even realise she had cancer, and died oblivious.

Why do we have to come out with these stories? Israeli medical research (and US, UK etc) has 30 years of proof that cannabis oil can and does ease our suffering, yet very little action is taken.

Our Federal politicians would say they are taking action, but progressing as slowly as possible is not action. It is only minutely better than nothing.

If cannabis oil had the same amount of research showing it helped cancer patients, it would have been widely available years ago. The hue and cry demanding it be made available would have been thunderous.

And yet because our illness is not visible, it has words that make people question it’s validity (Chronic Fatigue, really? Are you sure you don’t just need a good night’s sleep and some exercise??), and the oil that can help us is called ‘cannabis’, everyone in authority seems to not believe us. Or not want to.

I wish they could experience what we go through every day, but just for twenty-four hours. I wouldn’t want anyone to suffer more than that, I am not cruel by nature.

Then we would see access to what helps us open up in record time.

If they will not believe dozens and dozens of papers published over the past thirty plus years then perhaps they would believe their own pain receptors.

In the meantime we, their fellow human beings, continue in agony for years. The heads of medical associations do not believe these trials have conclusively proved the benefits of cannabis oil.

If that is the case, then perhaps they should learn how to read. But don’t ask me to teach them, because when you’re in this much pain, patience is very thin if non-existent.

In twenty years they will all be seen as fools. Which means I have to suffer for another twenty years?

Heaven help us all.

Oh how I hate nights!!


They say that no matter what sort of disease or illness you have, nighttime is the worst time. You feel worse, suffer more, and daytime is so damn far away…

I’m currently feeling the worst pain I have ever been in since this journey (over a pothole filled road with boulders and lava to negotiate around) began.

It’s probably subjective because I have almost got myself off the drug that actually made me feel barely human. Unfortunately we discovered that it was also making a meal of my brain and would send me into dementia within ten years.

Yes I did pause, briefly, to decide what would be worse. What I had before was the worse pain in my life, but then I kind of enjoy my brain. Plus there is no way I could put my wife through that slow slide into dementia, something only evil could conceive of.

So here I am, struggling through horrid nights. I’m afraid to go to sleep these days because I know I’m going to wake up like this, just before my next dose of painkillers.

By the way my painkillers are addictive and their overuse is something like the third or fourth highest killer of people in the US. Don’t big pharmaceutical companies make safe drugs anymore?? It’s almost like they want you to suffer side affects so you have to buy more drugs to fix them as well.

But I’ll fix them! I’m on a very low and safe dose of painkillers and, as I said earlier, the other painkiller and energy/lifegiving drug I’m almost rid of.

So just me and my pain. I’ve got those pharmaceutical companies beat! I just take extremely low doses or get off them completely! Ha! Didn’t see that coming did you!!

Of course there is the massive pain to deal with, but every fight has casualties.

I just wish I wasn’t one of them.