Tag Archives: CFS/ME

Trying to survive the night


I am not sure if it is my ME, Fibromyalgia or CFS (or something else) but almost every morning now I wake up with a pounding migraine.

For example, until this morning I woke up with what I thought was the worst headache I’ve ever had, again, five nights in a row. In my teens I had migraines that were usually over one eye and pierced through me like a hot poker, but now my entire head pounds with the same intensity.

It usually takes ten hours or so to get rid of them, which is exhausting and quite debilitating. So my routine for the previous five nights was wake up between 1am and 4am with this whole head pounding migraine, try to get to the fridge for the packs of frozen beans (or wake up my poor suffering wife to get them for me), take a rizatriptan and a valium and remain awake and wait for the headache to go. If Infallible back asleep the headache returns to its full-on state. No, I have no idea why.

Sometimes the first dose of tablets kills it, but more often than not it reduces it by perhaps fifty percent leaving me with the choice of another dose or cope.

The rizatriptan only comes in four tablets per script so I am reluctant to take more than one, but sometimes the pain dictates that I have no choice.

I can try to take another valium but although this will help my headache it almost always will put me to sleep as well. When I sleep with the remains of a headache I always wake up with it worse again, most often the migraine has returned. So a bit of Catch 22 there, just for fun.

Last night I woke at 12.30am with the beginnings of a headache, my queue to stay awake until it goes. With CFS staying awake is incredibly counterintuitive but unless I want my headache to become worse, I must. So I stayed awake fighting the headache until about 3am. I then woke at 5am and the beginnings of one was still there so I took a valium. Then the fight to stay awake began, which this time I managed to win until 7.30am when my headache finally went. I was then able to sleep until 9.30am.

All up 5-6 hours sleep, not enough for a normal person let alone one with CFS who fights to stay awake all day.

However it is far better than normal, when I often fail to stay awake and fall asleep for several hours and wake up with a migraine. The frozen beans then come into play as does more medication.

When my chronic illness first began I would have two or three of these headaches per week. Now I am lucky to have one or two mornings without one.

So every night when I go to bed it is with severe trepidation as I know what sort of night I am going to have. The only unknown is how bad will the headache be and can I stop it from becoming a migraine that makes me want to chop my head off.

How did you sleep? Personally I’d prefer to never sleep again.

“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.

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.