Tag Archives: health

An Awareness Poem for CFS/ME and Fibromyalgia sufferers


Suffering chronic pain in silence

Yet not even your medical licence

Makes my illness visible

I can hardly walk

And yet you talk

Of exercise, you’re so derisible

Spend a day with me

And you will see

What I do, just to survive

And yet you doubt

What my disease is about

You think you are so wise

What do I have to do

So I can prove to you

That my illness is very, very real

Perhaps spending a day in my skin

Would allow you to begin

To know exactly how I feel

Only other sufferrers like me

Can really see

The pain I suffer every day

So take your scepticism and leave

Until you come to believe

Because this may be you one day

No known cure nor cause

I deserve a round of applause

When I stand and walk five paces

Pain and headaches go on and on

Can’t tie laces so now wear slipons

A stranger to my favourite places

Now add dizziness, nausea and much more

To understand why my soul is so sore

Your disbelief is ignorant and baseless

Ninety plus per-cent of my days spent in bed

A cold compress and pills for my head

I pray for the day this will all end

Perhaps then you will welcome me

And be ready and willing to see

That this is real, my dear ex-friend

Concrete legs..how common are they?


My first symptom that something was seriously wrong (I have Fibromyalgia and ME/CFS) was the feeling that my legs were incredibly heavy.

Not just heavy, really, but “are you sure they haven’t turned into concrete?” type heavy!

This lead to me, whenever I walked down a corridor, for some reason to lean to one side until I hit the wall, literally.

It affected my brain somehow, these concrete legs, and I had absolutely no control over where I was going. For the life of me I could not walk straight, and you can only use the excuse “You know, I should really stop drinking at work!” so many times.

It would also happen suddenly. I’d be walking past a student’s desk (my last job was as a teacher) then suddenly head straight for it and…bang!

My legs felt so heavy when I sat down that the relief was palpable, but then slowly, over a few minutes, they would feel even heavier…massively heavy in fact so that I was scared the chair would surely break and then I would fall through the floor and keep on falling until I hit something heavier than my legs. I had no idea what that was and very little ambition to find out!

Lying in bed at night it was the same. I was constantly amazed that the bed wouldn’t collapse under their enormous weight.

Obviously walking itself, and getting up to walk, was massively difficult and I could hardly move forward. One of the simplest things we do in life, walking, we do not even think about it and yet it was so incredibly difficult because my legs, I was convinced, were made of concrete.

They are slightly better now, but not much. For example at present I’m lying in bed using my phone to write this (apologies if it shows!) and my legs feel so heavy I just want to stay in bed forever. Please don’t make me feel the pain of getting up!!

However I also want to spend some time with the love of my life (no my wife, not a dog!) so shortly I am going to have to stand up and I am dreading that moment.

One of the worse things about this illness and in particular it’s symptoms is that you cannot see them. Therefore people had no idea I feel like I am fighting to stay alive. Instead I would get comments like “You’re looking a lot better”, and “You look so healthy, you must be glad that’s over!”

No, not really, I feel so heavy and dizzy and have a huge headache and I am seriously considering whether I can continue working.

I would arrive home after work and would have to literally wait for my wife to come to my car and help pull me up and out of it, such was the feeling of massive exhaustion and heaviness. If she didn’t hear me come home I would ring her from the car, which was in the garage, to come and help me get up. Pathetic, isn’t it? And I felt pathetic, and useless, and a burden unable to contribute in any way to our home or, indeed, contribute at work.

It all became too much for me, even when I cut my hours down to just one day a week. I wouldn’t have recovered from that one day until it was upon me again. Yes, it takes me that long to recover from ‘activity’, such as working, even if I sat down all day and only got up when I had too.

My lunch became protein drinks because I didn’t have the energy to chew.

So eventually I had to give up work, which financially was terrifying and also filled me with dread and massive guilt.

Soon after this we sold our dream home and moved further away from the city (we received very little from the sale of our home, unfortunately). Fortunately my superannuation insurance policies paid out my Total and Permanent Disability (TPD) claims and are also paying me a couple of years in income protection payments. So we can save, hopefully, a little bit of money to live off of for about thirty years. And when I say little I mean it, as it will be less than a years income and will have to last whilst both of us are not working. I think the word I am looking for is ‘tenuous’.

The insurance companies had a waiting period of three months (for the income protection payments) so we went into debt. I then decided to do one of the hardest things I have ever done in my life and started a crowd funding campaign for us. It had a target, and vain hope, that we would get enough money to stay in our glorious home. However enough was raised so that we could live until the house sold, and for that we will be forever grateful to those who contributed in our darkest hour.

People do not realise what you feel (myself included, although I am far more aware now and not so quick to judge) and what you go through emotionally in times like these. They think they do and try to be helpful by saying “It’s only bricks and mortar.” Maybe, but it has been our home for nearly 18 years and it is embedded in our hearts and souls.

I must add though, that when the insurance companies paid out my TPD claims we were able to purchase a beautiful home we now both love, with a mortgage but a significantly smaller one, about another fifteen minutes further away from the city. It really is wonderful, and a lot better than moving in with my parents or being homeless, which were our other two choices.

So life has settled now, the dust has fallen after the whirlwind has passed and our sorrow has turned to greatfulness.

Finally, and the purpose of this article (sorry but I am easy distracted….oh look, a bird!…….sorry again.)

I would be interested (if you are a fellow sufferer of these invisible illnesses) if you have, or had, the same symptom of concrete legs?

I was King of the world… temporarily


So, I’ve been on a new drug for several weeks and yesterday (it’s just after midnight) morning I woke up feeling a bit better.

Sure, my hands and feet were still in a lot of pain (7/10) and when I tried to read I kept falling asleep and hallucinating while reading. Oh, plus my terrible itching from just below the knees down and a headache that was trying hard to become a migraine, and my skin (yes everywhere, all over my body) was still very sensitive and in some pain and all my joints are incredibly sore… but apart from that not bad at all.

Possibly the best I’d felt in a couple of years.

So what did I do? I overdid it of course, as we all do.

Hey look I can walk 30m with just a stick and don’t need my wheelchair!

So I ended up walking just over 700 steps when I’ve been under my 500 limit for ages.

Oh, and it felt good!

Until I woke up just before midnight (twenty minutes ago) with excruciating pain in my knees. And yes the itching, hand and foot pain are all still there and have been joined by neck and back pain.

And insomnia.

Why do we do this to ourselves? Because for two years I had pain all over my body, head to toe, and today (well, technically yesterday) my middle felt reasonable. Not in a ‘let’s go dancing’ reasonable but in a ‘hey, my pain is not as bad in places’ type reasonable.

And now I am paying for it. Just 200 steps over my self-imposed limit (try walking just 700 steps in a day and you will realise how pathetic my 500 steps are) and my knees are on fire.

So did I learn my lesson and will I take it easy next time I have a ‘good’ day??

Of course not!

Wired-Tired, the joys of ME/CFS


Last night my wife wanted to go to bed early as she’d had a very busy week, and since she takes care of me, wouldn’t survive without her and love her with all my heart I agreed.

One of the benefits of #CFS is that you can sleep anywhere at anytime, and yes that is part of the curse as well!

So 8.30pm and I get to sleep reasonably quickly (about an hour instead of the several hours it normally takes). Then I wake up, check my watch and I think it says 12.30am. Wow! Four hours straight for me is excellent!….yes, another side affect of this lovely illness is I don’t sleep well. I also have #Fibromyalgia and the pain keeps me awake most nights, fighting against my Chronic Fatigue and winning.

Then I check the time again, with my glasses on, and it’s only 10.30pm.

Bugger!

And now I’m wired-tired. This is the symptom where my brain is screaming at me to jump up and run around the block a few times (the wired part), and yet I know for a fact that after I jump out of bed I will collapse on the floor and have to do nothing for days, maybe weeks, to recover.

So, I’m dead tired yet my brain wants to run around the block. So I lie there and try to rest, concentrate on my breathing, and in the silence I am now more aware of my pain, dizziness, tinitis and have no energy to even turn over in bed. And yet I want to run a marathon. My body must really hate me!

Time ticks by, very slowly, not much I can do about that. So I compose this post in my mind to distract myself from those symptoms and, eventually, get back to sleep.

And wake up again every hour, to go through the same process again.

I hate nighttime!

It is now 5.40am and I can’t cope with this sleeplessness any longer, hence I’m writing this post. Then, like every other day, I will fall asleep suddenly only to wake up with my head in a very awkward position and an accompanying neck ache.

To try to stay awake I’ll play a movie on TV, and have to rewind it four or five times as I keep falling asleep. I also have no energy to get out of bed to get the breakfast my wonderful wife has made for me.

This goes on until early afternoon when I drag myself out of bed, get my breakfast and lunch (so I don’t need to get up again, it’s too hard) and take them back to bed.

At about 4pm I get up to join my wife in the living room and collapse into my reclining chair, fighting off sleep and the need to, still, run a marathon.

Then I eat dinner, maybe stay up another hour if I can, then it’s back to bed.

Repeat. Ad nauseum.

Welcome to my illness (well, part of it anyway…oh yes there is more, but I don’t want to give it all away at once!).

The final insult is my brain fog, so sometimes I’ll struggle out of bed to get my breakfast and lunch, yet when I get to the kitchen I can’t remember why I went there. Cursing I’ll go back to bed, hunched over my stick like a 90 year old man, until I remember what it was I’d got up for.

Cursing, I’ll go back to the kitchen saying to myself; “breakfast and lunch, breakfast and lunch” so I don’t forget this time.

The joys of ME/CFS and Fibromyalgia. And yet the majority of doctors still don’t believe it’s an illness. Thank goodness more research is being done in this area now.

…..I’m sorry, what was I talking about?

Centrelink – epic fail!!


Centrelink is there for the needy, sick and disadvantaged, and yet provides the worst service of any government agency.

The top level of management needs to be sacked immediately, along with their middle management that publish outrageously incorrect phone answering statistics.
Then, and I know this will cost us, but there needs to be a Royal Commission into the whole Department and the policies currently in place. It could easily be a case of the right people being tied up by stupid beaurocracy. Until such a public, complete investigation is done those most in need of help in our society will continue to be treated with disdain.
We should all be ashamed (especially the policy makers who make it so difficult for Centrelink staff to do their job) for treating our people so badly.

RAH HELL!


No wonder Jack Snelling left when he did. This is the disgusting state of health care in SA and after Labor spent $2.6bn!!! Waiting times longer than before, no beds available… basically a complete disaster!

And we have the most expensive hospital in the southern hemisphere!

They should all hand their heads in shame and all the heads of the Health Department should be fired immediately! No excuse for such complete incompetence in looking after our most vulnerable!

Medical Expenses Tax Offset to be Axed!


More evidence that governments attack those who can’t fight back, namely the ill and the poor.

The net medical expenses tax offset will no longer be available from 1 July 2019.

From 1 July 2019 if you have to buy a wheelchair to get around, the tax offset you were allowed (a pathetic 10% of the cost, but at least something) is being deleted. How lovely and caring of those on over $200k p.a. and couldn’t give a stuff.

“From the 2014-15 income year until the end of the 2018-2019 income year, taxpayers can only claim the net medical expenses tax offset for medical expenses that both meet: the current definition and eligibility requirements, and relate to disability aids, attendant care or aged care”.

How lovely of our caring government to kick all sick people in the balls!

Centrelink policies a DISGRACE!


Centrelink is there for the needy, sick and disadvantaged, and yet provides the worst service of any government agency.

The top level of management needs to be sacked immediately, along with their middle management that publish outrageously incorrect phone answering statistics.

Then, and I know this will cost us, but there needs to be a Royal Commission into the whole Department and the policies currently in place. It could easily be a case of the right people being tied up by stupid beaurocracy. Until such a public, complete investigation is done those most in need of help in our society will continue to be treated with disdain.

We should all be ashamed, especially the policy makers who make it so difficult for Centrelink staff to do their job, for treating our people so badly.

To read the original story click here.

Do it now!!


You never know when your working life will end.

This time last year I was looking forward to the next stage of my career, now I am ill and will never go to work again.

I say this not for sympathy, as those close to me give me more than I deserve already, but to plead with you to act now on what you want to do, start that study, or knock on doors for that start you crave, or change careers NOW.

You have no idea how long you have, and regrets hurt far worse than all the “No’s” you’ll receive before you get your yes!

Go for it, or resign yourself to decades of regret, your choice.