Boredom, the new disease

So I have ME/CF (I refuse to put the ‘S’ at the end for it is NOT a syndrome) and Fibromyalgia and am taking all sorts of medication, but the worst (after the symptoms, and the symptoms the drugs cause) is the boredom.

I, like most others with a chronic illness, still think and feel the same now as I did before my diagnosis. Yet I have zero (mostly negative) energy to do anything. Which leaves me with thoughts and feelings I cannot act upon for lack of energy.

Meaning I’m bedbound yet crave to do all the things I have always done, but even going to the local cafe by myself is impossible as I have no way to get there. No car (can’t afford a second one) and I can’t walk that far.

So what to do all day? Reading sometimes brings on a dizziness attack, walking to the living room leaves me breathless so the rest of the house is pretty much out of bounds.

And I hate daytime TV.

Last year I wrote a book on my phone, one hundred thousand words by thumbpressing, but do I have the energy to go to my computer, turn it into an ebook and upload it to Amazon after finding out how to do that? Nope.

I have no money so I can’t online shop and get excited about a delivery. The only mail I receive are bills.

So what to do? Damn good question.

Lyme disease, in Australia?

The Australian Government strictly states that Lyme disease does not exist here.

This is despite over a hundred doctors recently gathering from around the country to discuss this insidious disease and the fact it does exist here and the Government needs to change its stance.

For now, if a GP notes on a patient record ‘Lyme Disease’ they are taken to task and given hell. Treatment is non considered as it doesn’t exist.

Yet I check the symptoms and damn, they’re pretty darn close!

I recently went on a drug, when all others had failed over the last two-and-a-half years, that treats diseases like Lyme and have noticed a small improvement. No more than 4-5% but at least something.

Note for the Australian Government – denying something exists does not make it so. But then they believe this on so many levels, why any different for a disease making thousands of people’s lives miserable? Better for them to be miserable and lose their jobs and futures than admit an error, surely.

An expert in this field was told my symptoms and his response was immediately, “So what bit him?” But no it doesn’t exist!

So now I’m being treated for something that bit me, although we don’t know what, or even if, because tests for Lyme Disease are so inconclusive here as to be useless.

Just like the Australian Government.

“Dizzy” – by Tommy Roe

A great song, I used to love it.

Used to.

That is until the inside of my head has impersonated a spinning top for the last nine weeks or so, without stopping for one microsecond.

I’ve had dizziness before with my illnesses (Fibromyalgia, ME and CFS) but it has always just come and gone, sometimes violently. This time it’s a constant whirring, with someone controlling the speed remotely. One moment it is a reasonable one or two out of ten (on the dizziness scale) then suddenly it’s up to seven or eight, with accompanying nausea and a feeling of having absolutely no control, over anything.

It’s a bit like being in a spinning, plummeting airplane. Or at least that is how it feels and how my imagination pictures it to be.

I’ve given up all drugs except my painkillers, which I have also reduced by two thirds in the hope of the dizziness stopping. I thought it was a side effect, as it started when I began a new drug. Now I just have more pain…and dizziness.

Maybe it’s not though, and that scares me more than anything. What if it is here to stay? I’ve barely maintained my sanity for nine weeks, I have no idea how I would survive nine months!! Oh please god no!

So now I hate this song, yet cannot get it out of my head. Much like my dizziness.

What is so damn difficult??

“Pain specialist Dr Marc Russo said his clinic in Newcastle treats about 2,000 new patients with chronic pain every year.

“And I’m very worried, and as many of us in the faculty of pain medicine are very worried, that ultimately it will lead to the prescription of more opioids as a sort of back-stop measure and we know that this carries significant risk and often very little benefit,” he said.”

So opioids continue to get a bad name, and cause more deaths by overdose than car accidents per year in the US because people take so many to try to stop their pain.

And yet CBD oil, which would earn the Government tax dollars instead of costing them by subsidising prescriptions and paying for opioid patients using hospital beds.

It is such a simple, straight forward decision with SO many benefits, why are we not following 40 other countries and giving chronically ill people the ability to buy it??

As usual in our society in the last ten years, in many areas, it makes no damn sense.

Reference here.

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.

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?

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.

Hallucinations…and definitely NOT the good kind!

I have been waiting (and suffering) for two years in chronic full body pain, so have tried many, many different painkillers.

Unfortunately most of them (perhaps all) have been opioid based, meaning they are incredibly addictive. And they all come with potentially wicked side effects. In fact overdosing on opioids is in the top five killers in the US, so you would think it would be a method of last resort.

Nope.

But hey, I didn’t care as long as they worked! I much prefer to be addicted on a low dose than live the rest of my life in full body pain, every waking moment. It gets to you after a while.

Then finally I was introduced to Endep. Not only did it help with the pain but it gave me a bit more energy as well. Bonus!

One of the (many) side effects of Endep is liver damage, so I had mine tested after three months. I went to my doctor to find out the results, very anxious because these drugs had made an actual difference to my life.

Good news! No signs of liver damage!

Then we discussed a few more symptoms I had been having, and my doctor started to look concerned. Never a good sign.

Apparently the minor hallucinations and forgetfulness I was experiencing was a direct result of the Endep. Some hallucinations can be fun, but I can assure you these were not.

Apparently I could keep taking these wonderful drugs but I would have dementia within ten years. I had a choice of course; simply stop taking them, which meant all my pain would return plus my bit of energy would disappear.

After crying like a baby on my way home I realised I really only had one choice. So, back to pain and no energy for me.

Each time I reduce the dose, more of the pain returns. I have now cut back to half of what I was taking and the energy it had given me has completely gone.

Apparently cannabis oil is very effective for people like me and it is impossible to become addicted.

Yes please! Sign me up!

Not that easy, as government red tape never is.

Not only do I have to find a specialist doctor who treats patients with pain and who is happy to write a letter endorsing me for a trial of CBD oil (and most doctors admit they don’t know enough about canabis oil to prescribe it, or are totally against it because they think it is addictive. It’s not, because it contains no THC which is the bit that gives you a high), then my regular doctor has to fill in forms and wait.

In the meantime I suffer in pain.

If I am fortunate enough for someone in the health beaurocracy to agree with my doctors, I am allowed to get a massive two months worth. Wow. Considering it takes medication a while to show any benefit this is cutting it fine to say the least.

Of course I can extend my trial beyond two months but that requires a whole stack of forms to be submitted and is not as likely to pass inspection.

So, yes the oil is available as per Federal government announcements, but only if I jump through twisted hoops and am lucky enough to pass.

This would mean being on the CBD oil for two months, then off it to see if my extension is approved, then go back on it and hope.

I might get used to the pain, but I will never get used to governments pretending they know what is best for me, and certainly better than my doctor whom I have been seeing for nearly two years now. It seems there are rules, regulations and red tape around anything that might be good for us. At least that is the impression we are given and unfortunately most of the facts confirm it.

How lucky I am that my Federal government is looking after me, otherwise I might actually get better.

My illness fights back…

For the past six weeks I had been feeling the best, healthwise, since around June 2016.

Less pain, more energy, oh how I was loving it! Endep (amitriptyline hydrochloride) I love you!

Then silly things I dismissed as stemming from my exhaustion became more real, then downright worrying.

I was hallucinating, which was funny at first, just like the worsening brain fog.

‘Haha, silly me, what a laugh’ soon became ‘what the hell is happening to me?’

Obviously my symptoms were feeling neglected, poor things, because they sent hallucinations and extreme brain fog to get me and shake me out of my new (relatively) comfy world.

I would have a conversation with my wife, and the very next day I had no recollection of it whatsoever… I still don’t! And those hallucinations? I was reading a book when the lines started to appear as though someone had highlighted them in green and then yellow. The next thing I remember is thinking wow this huge piece of hot fresh bread in my hands looks delicious (any bread is a no-no for my diet) and I was going to take the biggest bite possible!

Then I was back in the real world, only to find myself about to take a large bite out of the book I was reading.

Yes all the small hallucinations and forgetfulness was a bit of a lark to start with, but now it wasn’t funny anymore!

Last Saturday I had my monthly appointment with my wonderful GP and told her of all my symptoms. She got out her information on Endep and read out the horror side effects that ‘could’ occur.

Then she said it was my choice, a reasonably good life for about ten years then Dementia, or I go off the drug and all my symptoms come back. I would be back to square one with my pain, dizziness, sensitive skin etc etc.

Chronic illness 1, me 0.

So last Saturday I reduced my dose from 150mg to 125mg. Not much, so how hard could it be?

Extreme nausea, thumping headache (that lasted hours and hours and hours) and hello sensitive skin! Gee, how nice of you to return to make my life hell. Now, as before, anything touching my skin (including air) was once again a source of sharp pain.

So what now? Unfortunately the other drugs I could try have the same possible side effects. Indeed the only medication that has worked with me over the past two years was CBD (cannabis) oil. I managed to score a small sample and it was wonderful.

No side effects, no addiction possible because the THC (the stuff that gives you a high) is removed.

But of course our moron politicians would rather spend our hard earned tax dollars and subsidise my expensive drugs, rather than allow me access to a native oil that I would gladly pay for myself. It would help tens of thousands, and has a multitude of peer reviewed studies showing how amazing and side effect and dependance free it is.

And it is available in the US, including one State (Colorado I believe) who paid off their entire debt within one year of allowing people to grow and sell this oil.

I shall say again for all those conservative and ignorant wowsers out there, NO the oil DOES NOT include the THC that gives you a high, hence the fact it cannot become addictive.

Yes, our wonderful Federal Government did say a while ago that we could have access to this in Australia. What they didn’t say was it is only available if you get two doctors to say in writing that you have tried all other available medication (which can take years) and they support your application for CBD oil.

If, by the glory of the public service, you are approved, they only allow you two months supply before you have to fill out a stack of other forms! So yes it is available but only if you spend all your time going to doctors, trying drugs that wreck your brain, and filling out a bazillion forms every few months.

I think I would rather be ill.

I did hear that some people were buying it from overseas and getting it shipped here. Great!…except the ever spreading moronity within our government then banned this. Isn’t it nice to know that our government is taking such an interest in our health? Here in South Australia they built the world’s most expensive hospital and ran out of beds within two weeks. So sure, we trust them!…..don’t we??

There is a naturally occurring plant that can be grown here, where the THC (and hence the ‘high’) part of the plant is removed, made into an oil and sold to over a hundred thousand sufferers as their only relief from devastating chronic pain and suffering. And a side benefit is that the government can tax it and make a fortune.

But no, far more efficient to keep it all at arms length, make hundreds of thousands of their subjects go through hellish illnesses and ignore the massive income stream they could receive.

Much better to sit back and wait for opinion polls, to see if they would gain more votes than they would lose, before helping the sick.

“I’m from the government, and I’m here to buy your vote.”

If you want to read more; https://eternalplants.com.au/news/medical-cannabis-red-tape-forces-thousands-turn-black-market-pain-relief/