Tag Archives: pain

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.

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?

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.

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.