Tag Archives: Fibromyalgia

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?

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!

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.

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.