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?

Who needs politicians??


People keep leaving Adelaide for better jobs in other States.

It’s been this way for decades yet no politician has taken it seriously. It’s all up to us to do it ourselves, and to volunteer to help people who need it.

The government does nothing but produce reports and spend our money like they’d won the lottery.

Without the people nothing would get done, and without the politicians MORE would get done!

A benevolent dictatorship looks better every day…

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.

Fibromyalgia – complete body pain


The sleep paradox. I do not sleep well at night yet cannot keep my eyes open during the day.

 So, do I not sleep at night because I sleep during the day? No. From the time my wonderful wife gets up until around midday (or later) I find it almost impossible to keep my eyes open, no matter what you might threaten me with!


To try and stay awake I will play a movie…..and have to restart it at least half a dozen times because I keep nodding off. Even loud action movies.


So what is the difference? At night when I am lying next to the most wonderful, selfless, caring and beautiful woman in the world it is completely quiet. This enables me to hear clearly the loud ringing tinitis in my ears, and exquisitely feel the pain all over my body (even with prescribed pain medication). It makes sleep very difficult, so I lie here and try to rest, and wait until morning when noises begin and sleep can come my way through distraction.

The accompanying picture to this post is almost accurate as the red parts indicate where my chronic and extreme pain is in my body. The only error is that it is not all in red, as my pain is everywhere. Even my skin is so sensitive that when it touches the bed sheets I get an extra ‘kick’ of pain.

I do realise that there are millions of people worse off than myself, yet unfortunately that thought is little comfort in the middle of the night when I cannot even touch my wife, as the extra pain is too much to bear.

So what is the point of writing all this, apart from ‘poor me’?

To the 90 per cent of doctors who do not know anything about, or indeed believe in Fibromyalgia, ME or CFS (Chronic Fatigue Syndrome) I suggest some light reading as the research into these conditions increases daily. Just because you do not know what your patient is suffering from is no reason to simply prescribe some pain medication and recommend the three old faithfuls of – ‘get more sleep, eat healthier and exercise regularly’. This seems to be their mantra for any condition unknown to them.

If I tried to exercise I would crash within the first minute and take weeks to recover, so no thanks. Your 10-15 minute appointments that are meant to somehow allow enough time to diagnose every conceivable condition are a joke, as no-one can diagnose accurately more than 60 per cent of the time given that money-induced timeframe. Whether it is Medicare that needs increasing or your realisation, and admission, that you are wrong many times is arguable.

Just remember we are people, and if you had our condition for just a day you would not be able to work, or diagnose yourself, would be swallowing the highest dose of painkillers you could get your hands on, and perhaps then we would receive the attention we deserve.

The movie ‘Unrest’ is an excellent place to start your real education into our condition.

I wish you luck, as I do your patients.

 

Two Thirds of University Students Fail to Graduate


So two thirds of university students fail to graduate…when will they learn that they need to provide far more than text books and large lecture theatres?

A huge shake-up is needed in this sector for it to still be relevant in the years and decades to come. Teaching techniques have to change drastically – having young post grads being tutors because they are PhD students is rediculous, as is expecting people to sit through lectures over an hour long.

Come on guys, time for some disruption!

$Billion Bank Profits yet they sack workers!


So NAB announce a full year $5.3bn profit and at the same time the sacking of 6,000 staff.

Absolutely disgusting! With the $5.3b profit they should be hiring people to take care of the community, not firing 6,000 and potentially destroying 6,000 lives!

I know legally they have to put shareholders first, but surely the time has come for social responsibility to outweigh and extra couple of cents dividend per share! Oh, and I am sure executive bonuses will go up as people are shown the door carrying their careers in cardboard boxes.

We desperately need a change in corporate focus!

Constantly Working Long Hours? Maybe You’re The Problem.


I’ve always thought that if you’re constantly having to work long hours (the exception being if it’s your business, then it’s your choice and sometimes a necessity) then you are not efficient and don’t use your time as productively as possible.

In the past I’ve heard many people spend an hour a day, or more, complaining that they don’t have enough time to do their job!

A person working long hours more often than not demonstrates a lack of ability or of support, both are toxic in any organisation.

Go home, spend time with family or on yourself, because you’ll never be paid for those extra hours and your boss won’t appreciate it, she/he will just get used to it and soon expect it as your normal day.

Do yourself a favour and GO HOME!

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

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