Tag Archives: CFS

Boredom – the real kind


I wrote a short post not long ago titled “What to do all day?”, a veiled reference to my complete and utter boredom.

I did my best to sugarcoat it, to look at it from other points of view and consider the fortunate aspects. But not today.

Today I am just well enough to stay in bed (as per every other bloody day) and watch TV. I hate watching TV.

I do not even have enough energy to continue the final drafting (my seventh or eighth, or maybe the twentieth, I think) of my book. The book I started writing over a year ago to help keep the boredom away. I’ve managed two hundred words or less a day, about ten minutes. The excitement is almost too much for my medication.

Damn, everything is so circular when you are chronically ill. I could easily cure my boredom by walking to the computer room, turning it on and playing a game, yet my illness has left me with not enough energy to get there. For weeks now.

So I sit here and wonder what the hell to do. I honestly have serious thoughts such as, I wonder what it would be like if I cut off my big toe? I mean, would I really miss it? It certainly would keep me occupied for a while!

I could also go to the living room where my poor suffering wife helped me to acquire a games machine. I also have a DVD player and a couple of hundred movies.

But I have no energy to leave the bedroom, and the chronic pain of my Fibromyalgia forbids it. Circular, you see?

Boredom is insidious. I used to never be bored, I always could rely on my brain to keep me occupied. Right now my brain is spinning slightly and too tired to produce any thoughts worthy of consideration. I mean, just take a look at this post!

So there you are. Completely bored out of my brain and no energy to even think my way out of it.

The specialists didn’t tell me about this part of the process, only that it would probably last for the rest of my days.

Great, at least I have something to look forward to!

No more than 500 steps for 2.5 years


For myself, and many of my fellow chronic illness sufferers, not being able to walk more than five hundred steps in a day is normal.

For me I have not done so, without serious repercussions, for the last two and a half years now.

Think about that for a moment.

How many steps is it from your bed to the bathroom and back? To the kitchen? How many trips a day does this allow you?

Yes a shower counts as well, as does walking to the living room to watch television or (if we’re extremely lucky) going outside to sit in the sun.

It is like permanently wearing a restrictive bracelet. If we walk more than 500 steps our pain from the Fibromyalgia expands exponentially. Our dizziness, skin sensitivity, headaches, body pain etc etc etc from ME/CFS increase as well.

It is like being in jail, except an inmate is allowed to walk further in a day.

So, very little exercise. In fact no exercise at all or our symptoms explode, no matter what some old fashioned idiot ‘professionals’ might think. We lump them together with those that say everything we suffer is ‘all in our mind’.

How we wish they could experience our lives for just a week, even a day!

So the next time you think it is a long walk to the shops, or around your garden, think of us who would give anything to do what you are doing, without our pain.

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?

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.

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/