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?

Recognition for Volunteers


I have no idea how many volunteers there are in Australia, or the world, but I do know they need more recognition!

What would we do without them? They care for the sick, give the lonely company, arrange fund-raising events, give of their own time in their busy lives, save governments (local, State and Federal) millions of dollars by looking after those who cannot look after themselves, support local sporting clubs that would not be there without them, assist local schools to raise money to help our children, look after children that are not theirs (grandparents) because many children’s parents cannot, take care of their partner when they cannot do it themselves, fight fires for us and pick up rubbish that is crudely discarded by unthinking morons.

The list goes on, and on, and on and on.

They do all of these things expecting nothing in return except for an occasional “thank you”.

I have a suggestion; why don’t we recognise them officially and publicly on a regular basis. Thank them more as a whole community and reward their sacrifices in some way that says “If you had not contributed your time for free, nothing would have happened and our entire society would suffer as a result”.

My suggestion is that we award volunteers points, perhaps one point for every hour they contribute to making the world around us a much better place?

Then, at the end of the year, their points are submitted and based upon the number of points received they receive something in return. Perhaps it is a plaque they can put on their wall to make them feel proud and appreciated, or a dinner out whilst others look after their family for once, or a reduction in their income taxes (much cheaper for the government than having to employ people and systems to fill the gap), or a range of gifts they can choose from donated by corporates and those of us who don’t (or just cannot) volunteer ourselves?

The more points they accrue the more their ‘appreciation gift’ is worth.

Volunteers are constantly overlooked, taken for granted and have their contribution ignored by governments that would be penniless without them.

Many volunteers, indeed most of them, contribute expecting nothing in return and I believe they should. If we continue to take them for granted they may very well withdraw their services and would have every right to do so.

We desperately need these amazing volunteers, yet do little in the way of acknowledging them and this imbalance, if allowed to continue, could result in all of us paying higher taxes to employ people to fill the significant gap that volunteers currently provide. Or we go without the services they provide, and our lives would be the lesser for it.

Volunteers are the backbone of our society, and sustained and meaningful acknowledgement of this fact needs to occur in order to keep the volunteers we have, and to encourage others to contribute.

To fellow CFS sufferers


One of the crazy, stupid symptoms of this part of my illness (CFS – Chronic Fatigue Syndrome) has to be sleeping.

Well, not the actual sleeping per se but how it behaves.

For example, it is currently 4am. I have been awake off and on since 2am, but right now I am so awake that I want the day to start now.

It is called wired-tired, and normally occurs around 9-10pm when it is time to go to bed and sleep and all you want to do is party (although you can’t, of course, because if you tried you would last about two seconds before you collapsed with total exhaustion).

The other side of this insidious illness is that I know for a fact that when I finally go to sleep and wake up around 8.30am, it will be physically impossible for me to stop myself from falling asleep again.

What the?

An example is yesterday. Being a Saturday I was determined…no, determined…to stay awake so I could spend the day with my precious wife.

I finally got out of bed at one-thirty in the afternoon (??).

This is the stupid part I mentioned earlier.

I sat up in bed at 8.30am rubbing my eyes until they were sore, drinking iced coffee, reading, doing anything and everything to stay awake. However, and I would be interested to hear from other CFS sufferers about their experiences, it felt as though someone had each of my eyelids between their finger and thumb and were forcing my eyes shut.

The first I knew that I had gone to sleep again is when I woke up, head down, book in my lap and a very stiff neck. Angry, I redoubled my determination to STAY AWAKE!!

Crap, I’ve woken up again and my neck is very sore this time. Alright, I am getting out of bed and getting dressed (it is around 10.30am now) because I do not want to waste a Saturday!! Here we go!!

What the?? Head down again, and hell does my neck hurt! Bastard, I went to sleep again!

Alright, it is now about 11.30am and I WILL KEEP MY EYES OPEN AND STAY AWAKE!

Owwwww!! What?? No, could not have happened again, I control my body and I was staying awake damn it! Just after noon??? And I am still so tired that if I closed my eyes for more than a second I would be asleep again…wait, no you don’t, this time it is out of bed and WOAH my legs are collapsing and I am trying to walk and I am bumping into everything but at least I am awake! Take that you stupid CFS…what? It’s half past one??

And that, dear reader, is the stupidity of CFS. I could easily get up now, at just after 4.30am. Yes I would still be exhausted – I only remember waking up feeling refreshed and actually, really awake once in the past thirty years – but I could at least stay awake.

When I go back to sleep, in half an hour or an hour from now, I know that I will wake up around 8.30am and have absolutely no control over my staying awake or not. Some days, when my wife is working, I just give in and wake up when she gets home around 3.30pm or so, still feeling like I could sleep another ten hours and knowing that if I do not get up I probably will.

Which is why I am writing this at…4.42am. Because I know I will have no control over my body until much later today, sometime in the afternoon. Maybe.

I hate it, despise it, if CFS was a small creature I would rip it to pieces and then stomp on those pieces until nothing remained. I am angry, furious, and yet I have no control over it.

Many people, on reading this or hearing stories of people with CFS react with “Wow, wish I could spend all day in bed sleeping.” Well my dear fellow human being you are completely missing the point and have zero understanding!

Yes, if I had full control over my body and was actually in charge of my life, a day in bed would be glorious. The point, however, is that I feel incredibly exhausted all the time and have absolutely no control over when I sleep or for how long.

Try having a life around that! You might get to work at three in the afternoon, then fall asleep at your desk half an hour later. How long would you keep your job for?

Or you make plans to meet friends for lunch and then completely sleep through it. Yes, even with setting an alarm. Alarms for me are now just a reminder of past years when I could force myself to get up, when I was still in control. Today they are simply a temporary annoyance that my body ignores completely.

Even worse, every second of every day you know that if you closed your eyes for around three seconds you will fall asleep. (You can relax, I gave up driving months ago – another effect I hate about this part of my chronic illnesses (oh yes, there is more!) is losing my independence. Thank you CFS, I now feel like a ninety-year-old who cannot drive anymore because they cannot be trusted to remain alert at the wheel).

Three seconds until I fall asleep? Except between the hours of three and five in the morning, of course, when you just lie there wired so tight that even though you are exhausted you cannot sleep.

So you write a blog instead, that will be read by, maybe, three people.

Yeah, that is what I call a glorious life, bet you are jealous!

A certain percentage of young people will always leave South Australia


It stinks, but it’s true.

Steven Marshall campaigned hard on this issue in the recent SA State election (which he won) and I for one am glad that fresh eyes are looking at this problem. However he will never be completely successful.

It remains a fact that 90+ percent of head offices are in either Sydney or Melbourne, and unless we want to double our size (in people, infrastructure etc) we will never attract more than one or two big businesses here, compared to the dozens interstate.

Of course it is worth trying but ANZ, Telstra, Panasonic and the very large organisations will never move here.

I myself spent four years in Sydney because I wanted to see how high I could go, and to enjoy the variety and challenge of working for a major corporation. I ended up as National Product Manager for IT Products for Panasonic Australia, a position I loved and never would have achieved had I remained in SA.

Mind you four years was enough (I spent over three hours a day commuting, thankfully in a company car), and family circumstances necessitated that I return to SA.

I came back to a position as a Corporate Salesperson for Ericsson. This was a big step down from travelling around Australia every few months, demonstrating the latest IT products and teaching distributors and major retail outlets how to sell them. I also gained valuable experience in presenting to the top buyers in Harvey Norman, Myers and so on, negotiating floor space and pricing.

I never would have had that experience here in Adelaide, where the biggest employer is the State Government.

I much prefer working in Adelaide to the traffic, congestion, polluted air and high cost of living in Sydney. However the upsides of working interstate, if you have ambition, far outweigh the negatives.

The attitude interstate is also much closer to the US and Silicon Valley. There, if you have started a business and failed they are actually impressed by your initiative and know that you learned some hard lessons. In Adelaide you are more likely to be shunned.

This attitude within our beautiful State will not change until the current ‘startup generation’ are well into their forties. Unfortunately this is a hard fact that we must face head-on.

So how do we keep young people from leaving SA? By being more forgiving of their mistakes and encouraging them to try again. By recognising that a certain percentage will move interstate no matter what you do, and helping the rest to make the move back ‘home’ an easy one.

You can accomplish this by having a small department that keeps in contact with these talented and adventurous young people, encouraging them to explore outside SA (they will anyway) and yet also ehticing them to return by offering a more welcoming attitude. This same small department could assist them in their transition back to SA, without them having to go backwards in their careers, by facilitating them to find a relevant position here that is of sufficient interest to them.

This small (keep it simple and focused!) government department could help them find interesting roles by assisting local businesses here to create them. This can be achieved by finding the already successful small businesses in SA (of which there are many) and assisting them, without mountains of red tape, to grow.

Up until now most of the emphasis has been on opening startup hubs and announcing unrealistic figures on how many jobs they will create. Yes we need to foster our local startup community but it needs to be coordinated and supported properly. This would involve assisting them by providing long term mentoring, cheap access to accountants, lawyers and investors to steer them in the right direction. Also vital is utilising the founders of already successful startups in SA, by encouraging them to introduce local business people to respected contacts they never would have met otherwise.

All this needs to be done in conjunction with identifying small businesses that could easily become large businesses with the right backing and support.

Such a coordinated effort would make it more attractive for our young people to stay here, and for those that leave it would encourage the talented ones to return. That involves keeping track of them and using a CRM (customer relationship management) system within government, to keep in touch and to entice them back.

This means it would be essential for this arm of government to be run like a business.

I, for one, have hope.

Bloody Migraines!!


Well, 3.35am and my latest migraine is now ‘just’ a bad headache.

I had one last night too. In fact they are so regular, I do not think I have gone a whole week without one since my illness started around June 2016.

It nearly always starts the same way. I am asleep, I wake up and need to pee (please excuse my crude language but I do have a very bad headache) and at this stage I feel alright, in that I do not have a headache. Then I get out of bed and it hits me, hard, usually on one side of my head.

This causes me to stumble and crash into the walls, furniture, basically everything, when I am trying very hard not to wake my wife (fail!). She gets up at 3.30am for work so she needs her sleep. This makes me feel guilty and my headache responds by pounding the side of my head even harder. It is the right side today (just in case the suspense of not knowing was too much for you).

So, I go and get the ‘beans’. We always have two packets of beans in the freezer, wrapped in tea towels so I can rest my head on them. Yes, two packets, as some of my migraines last for quite a while.

So now I am at the point (this point arises, at some time, with every migraine) of deciding whether to take a Maxalt, which is a tablet specifically for migraines. I place one tablet on my tongue and let it dissolve. The reason I hesitate is because they used to cost just over $6 a tablet, which quickly adds up when you have several migraines in a week.

Fortunately now I have qualified for the Disability Support Pension and with that comes cheap medication. So, now they cost me just over $2 each.

So why am I waiting, you ask?

Just take the tablet and get rid of the pain? Well, you see, if I took a tablet for every headache (as all my headaches can turn into a migraine within seconds, literally) then I’d be taking around 4-6 tablets a week, or between $468 and $624 a year.

My illness already costs me enough in Doctor and Specialist visits and all the other medication I have to take.

So I hold off on taking them until the pain is so great, and has been with me so long that I cannot stand it anymore.

I know that many people with ME/CFS and Fibromyalgia experience these same headaches, which I take some weird comfort in. So thank you, but I hope your headaches leave you for good.

And now the time has come. I cannot stand this any longer so I am going to crack open the piggy bank and take some drugs.

I really hope they work! They do most of the time, but sometimes…well, I better not think about that.

My fellow sufferers of broken sleep and agonising pain, may your headaches be mild and your painkillers cheap!

Amen.

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!

SA Election, March 2018


SA Best pledges $7.5M for something so Labor promise $8M, then the Libs promise $10M for something else and SA Best promise $11M… it’s basically a bidding war to see who can buy your vote, especially as these promises are not legally binding and therefore meaningless.

Please, use your own judgement and vote for who you think deserves it, not just because of some promise that will most likely never be honoured.

It is monumentally stupid that political promises are not legally binding, and until they are I’ll call it for what it is – a laughable vote auction being presided over by a clown (yes, red nose and all).

So many times in the past, at both State and Federal levels, politicians have ignored their pre-election promises. My first experience of this was when Paul Keating got elected on his tax cuts which he said during his campaign were already in “L-A-W law!” and yet never happened.

Laws can be changed, and his was.

If they want our respect (and the party that earns it will also win our vote) then they have to stop making promises they have no intention on keeping (“We didn’t realise how tight the budget was so can’t deliver on everything” – heard this before?).

The only way they will earn our respect is by making their promises legally binding, with penalties if they do not deliver.

They also need to pass laws that stipulate that all political advertising has to be subject to the same rules as all advertising – that is they must be true, and penalties of $100,000+ should apply.

If I went on TV and said lies and made false promises I would end up in jail. The same fate should apply to all politicians and their parties.

Retired early due to chronic illness I now write about my illness & current events.

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