Tag Archives: CFS

Backwards again…


There I was, feeling a bit better and hopeful of some more improvement.

Then my ME, CFS and Fibromyalgia decide to hit me with another dose of their vile junk. Who knows why, or what, as still so little research is being done into these illnesses. Millions of us around the world suffer but with so much illness these days (we must be poisoning ourselves somehow, it cannot be a coincidence) the research dollars go to areas of focus, which our ailment lacks.

Still, if I can feel better before then I can do so again, just need to get through this downturn and hang in there.

Please, if you suffer like me then try and do the same. There are better days ahead.

There have to be.

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.

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 I fall 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?