Tag Archives: CFS/ME

An Invisible Illness Never Sleeps


I lie here, afraid to return to #sleep and its nightmares, anxious how I will feel when the alarm for my next dose of medication wakes me at 6am.

For the past several weeks, on yet another drug I am trialling, I have at least been able to function in the guise of a human being. Albeit one without the ability to walk properly without a stick, or drive, or get out of bed by noon, or have enough energy to eat food I have to chew.

Or without #pain, my new permanent companion.

Then two days ago I woke as my ‘normal’ self. The dark excruciating #illness that lurks behind an extremely thin veneer of medication, that only provides symptomatic relief, had returned. Extreme #pain over every square millimetre of my body, my skin on fire and so sensitive I could not move. My wife was there to assist me, thank god, but crying and yelling ‘don’t touch me!’ was not how I had envisaged starting the day.

Yesterday I had a #migraine around five in the afternoon and it stayed with me until six the next morning. Probably the worst one I have sufferred from and I have many, many to choose from. I was only able to finally rid myself of this black burning beast through several ice packs (lovingly delivered by my wife of course…I owe her everything), much moaning and groaning and writhing around and taking more painkillers than I should have. What has that done to my system?

In a few hours time, if I am lucky enough to sleep that long, how will I feel when I wake? It could be anything, and that is what I fear.

It is not enough that sleep comes sparingly, now I am too afraid to sleep at all. In my slumber I might miss the signs of another downward spiral, whereas if I remain #awake I can catch it in time and medicate accordingly, so the day that follows is not a disaster like the previous two.

I should be more factual. It has actually been the last two years that I have been afraid to sleep, since my illness began.

Never a good sleeper at the best of times, always waking #exhausted for many decades and now, for two years, with my companion, pain, as well.

Will tomorrow be a ‘good’ day, so I can walk a bit further than to the living room and back? Maybe even walk to the car so my wife can take me to our local coffee place a few hundred metres away?

As I write this my wife sleeps beside me. A heavy sleep, richly deserved. She is my carer, my cook, cleaner, waiter, medication reminder, advisor and watchful observer for my monthly GP appointments. In addition she works hard three days a week, a mostly manual job that leaves her with little energy to care for me. Her efforts are Herculean and she does it all with a loving smile and sense of humour.

I have lost count of the times she has told me I must not feel guilty, but I do. This illness has taken away any downtime she used to have. She says it doesn’t matter, that love gives her energy. I believe her as our mutual love for each other has always been without limit, and she knows I would do the same for her. But I do not know for certain, as she drew the short straw.

The #guilt remains, as I am only human. A human who is afraid to go to sleep for what the morrow might hold.

If I were to fall sleep again now, how will I feel when I wake?

Uncertainty is my new enemy. The past couple of weeks on a new medication made me hopeful that I can at least cope, as long as I stay within my limits (the main being no more than five hundred steps in a day). Then two days ago I woke to incredible pain, completely destroying the tiny amount of confidence I had built upon.

No more expectations of being able to exist within my carefully choreographed existence. No expectations at all, except for pain.

Pain and I have grown used to each other, our daily contest having become a mutual ritual, until recently. Suddenly pain has the upper hand and I have almost drowned in its unforgiving embrace.

Sometimes I wake with a migraine and full body pain. Those days my complete quota of energy is expended trying to convince my wife that I will be “normal’ again soon. Neither of us believe it but we hope, and smile to reassure each other that neither of us believes me.

Will it be a ‘good’ day? A day where the medication works as it should and provides me with enough #energy to walk a little further, read a few more pages of a book or, more importantly, make my wife smile and perhaps even laugh? Will we be able to talk of ‘when they find a cure’ without all the doubt and uncertainty that usually accompanies this subject?

Will I be able to wake up when I want to? That simple process I used to accomplish, besides my exhaustion, achieved because pain had not yet made me it’s guinea pig? Now I wake and have no control over staying awake. The best description is jet lag where your eyes sting and the effort of keeping them open is beyond you. Sometimes I wake at seven and think I feel good enough to stay awake, until I wake again an hour or so later wondering what happened. Did I dream or was it real? This question is becoming more difficult to answer each day. This waking then sleeping cycle repeats until I have the energy to get out of bed and stay out, lest sleep overpower me once again.

A ‘good’ day means I can control my body before noon. I can extricate myself from the determined tentacles of sleep and actually walk from my bedroom to the living room, book in one hand and walking stick in the other.

A shower? Yes I still find them to be a source of healing, the hot water soothing my body. I stay as long as I dare, or as long as I can cope with the pain as the water hits my painfully sensitive skin. The stool I sit on helps, and also reminds me that I used to enjoy this much more standing under the hot water, exhausted but pain free.

So what will today bring? My condition is so unpredictable and the #medication for the symptoms more hit and miss than providing definite relief. I can only hope that today I can have coffee with my superhuman wife whom I love without limit.

For better or worse. Yes, she did say that on our wedding day, but probably gave it as much thought as I did.

It always happens to someone else, not me, not us, and certainly not this illness that provides the same pain and discomfort as a terminally ill cancer patient. Without the luxury of a known cause and therefore no proven prescribed treatment, I worry about what this day will bring.

My main goal each day is to make my wife smile. That is the only comfort I can rely on that will temporarily reduce my pain. Right now she is the only (temporary) cure I have. That it lasts but minutes and yet takes the effort of a decathlete is not my concern. I would do anything for her.

Making this illness easier on my wife is, and always will be, my primary goal.

Now I must sleep, as my body needs enough rest to make up for the previous 30+ years that I kept pushing myself through, not knowing why I was always so exhausted or that I was making this condition worse.

Hindsight is a loathsome creature.

So I must sleep, #anxiety over what the day will bring must be ignored. The alternative is not sleeping at all, and from bitter experience that only makes the day worse.

Please wish me well, for as I approach my bed each night I may wake having unleashed a monster. Please, let tomorrow be without such pain and effort, may I be able to get out of bed in the morning to spend more time with my beautiful, angelic wife.

May tomorrow provide me with hope, and the nightmares remain in my dreams.

P.S. If you enjoyed this post at all please follow me, it actually helps knowing I have an audience!

How Do We Get Through This??


To my fellow invisible sufferers of ME/CFS and Fibromyalgia, there is always pain but there is also always hope.

I wish I could say everything was fine but you know that is a lie. We all have our own stories, some far sadder than others, but all with that common bond – we constantly suffer excruciating pain and exhaustion but we look healthy.

Now I am not saying I would rather look ill, I’m not that good looking to start with! Perhaps something simple that others could see and recognise, and no I do not want that sign to be my wheelchair.

A sign, yes that might work! Maybe something small and tasteful, a neon sign above my head with a pain meter flashing brightly. I think red would be a nice colour. Oh, and in bold…and maybe underlined as well.

Seriously though, how do we get through this incredibly debilitating illness that can last anything from five to fifty years, when everyone we meet tells us we look fine and wonders what we are on about. Sick? Hey you didn’t see me last week, I had the flu so badly!

Every one of us would gladly swap our condition for the flu any day! Even if we were told that the flu would last a year I am certain we would all sign up!

There is a serious disconnect between how we look and how we feel, and it is wider than the Grand Canyon. It is also impossible to explain to people in a dozen words or less, which is the average attention span these days after they have said; “Hi. How are you?”.

It would make our lives so much easier if we could tell people what we are going through in a nice, short, simple sentence. A sentence that would achieve complete and immediate understanding.

“I have ME/CFS and Fibromyalgia. Never heard of it? Well I feel exhausted all the time..” That is about as far we get sometimes before they jump in and say something like; “Tired? Mate I’m tired all the time! I work fifty hours a week, have to look after the kids and I don’t get to sleep in on weekends because I have to take my oldest to their footy game.” And the attention is now on them, not you, and you feel like you now have to justify how you feel, convince him your illness is real and terrible and awful and some days you feel like you are dying and your partner left you because they couldn’t cope and didn’t believe you were actually ill because you look so well….

Take a breath. Breeeeeathe.

Now ask yourself a simple question. Apart from doctors and Centrelink, do you actually have to justify how you feel to anyone? Is it critical that people know exactly what you are going through? It would certainly make your life more bearable but since it is so crappy now, will it make that much difference if he/she knew the intimate details of your chronic illness?

Obviously with close family and friends the answer is a resounding yes, but they will (should!) give you time to explain exactly what you are going through. It also lets you know who really cares, because the ones that care actually listen, ask questions and try to understand. The ones that don’t you are better off without, as excruciatingly painful it might be at the time.

Time might not heal all wounds, but it does dull the pain. So hang in there, it does get better!

So what do we tell people, to make it easier for them to understand? Yes they should allow you the courtesy of listening and trying to comprehend it all, but we also have a duty to make it as easy for them to understand as we can.

To put it flippantly, and to improve the mood of this article by giving us all hope for a more sympathetic tomorrow – we need a catchphrase.

“I have………?” What can we say that covers a dozen symptoms (or more) for an illness that many people (including the medical profession and, of course, good old Centrelink) do not believe exists?

Correction. We need a label, not a catchphrase. People love labels. It makes everything easy, fast and quickly understood. They have busy lives you know (as they will tell you at the first opportunity, alluding to what you said about spending 90% of your life in bed). The most important aspect is that it needs to be quickly understood so we do not spend unnecessary energy trying to explain everything.

Now if you think that I am about to tell you what that wonderful, easy, stress-reducing label is, I apologise because I have no idea.

But maybe, together, we can achieve this? Think of all the times you have tried to explain to someone how you are feeling, then think about how wonderfully easy it would be to tell them in eight words. They sympathise or grunt and you move on. No more asking yourself; “Where do I start? Do I say I’m bedbound for almost my entire life, will they believe me or laugh and say they wished they could just lie in bed all day? Do I have the energy to try to explain everything to this person? Is it worth it because it will be exhausting and I need every drop of energy just to exist? Do I just say that I’m fine and move on? Do I owe it to fellow sufferers to make the effort and explain it all so one more person understands? Do I push on and try to spread the message about this largely unknown illness? If they don’t believe me will it crush me and take a week or two to recover?

In my case I ask myself if I have the energy to answer with – “Actually I had to stop working in April last year due to my chronic illness. We lost our dream home which was devastating and incredibly stressful, but we were lucky to find a beautiful home we downsized into a bit further out from the city. I can’t plan my days because I don’t know when my next crash will be, so you’ve caught me at a good time. I’m actually out of the house! I’m bedbound for about 90% of my life so these outings are very special to me. I take incredibly strong painkillers that I have to be careful to not get addicted to, but if I don’t take them I’m quickly in as much pain as a cancer patient in the last three months of their lives. It is documented, studies have been done. I regularly have a blood test to keep an eye on my liver and other stuff, and see my GP every month. Last week I had a migraine for three days and I really don’t know how I got through it, hardly slept. Just two mornings ago I woke up in horrific pain all over my body, I have no idea why but I changed my medications a bit and the pain has reduced, touch wood. Now I go to bed at night really scared that I’ll wake up in that same pain, the worst pain I have ever experienced. The dizziness is crazy. I walk around at home – when I’m out of bed that is, I can only do 500 steps per day or I have several bad days afterwards – and even with my walking stick I keep crashing into things. My skin is incredibly sensitive and sometimes when I put clothes on or just turn over in bed it feels like someone is peeling my skin off with a very sharp knife. I really cannot do more than one outing a week, or two very short ones, as I crash badly. It is nice to get out and feel human, but I have to be careful because my senses are so fragile that if there is noise and people talking loudly around me it also triggers a crash. I’m trying to keep positive, luckily my partner is very supportive, you wouldn’t believe what some incredibly thoughtless and horrible things some other partners do. Some leave their spouse because they don’t believe we’re ill or just can’t cope with having to do everything around the house. I feel so sorry for them because the illness itself is horrible enough without your personal life imploding as well. Anyway as I said I’m trying to stay positive, so I’m writing a blog to support other people with the same chronic illness, by letting them know they are not alone. I write some other stuff as well, mostly at night because I often can’t get to sleep even though I am completely exhausted. Have you seen a marathon runner at the finish line? I feel like that if I just walk down my street. I’m also reading a bit, in between the dizziness, to try to keep my brain going. I never thought I’d say this but I really miss working, you’re very lucky, so next time you have a bad day think of me because I’d trade with you in a microsecond! They haven’t found a cause or cure yet. I’m still waiting for Centrelink to approve my application for the Disability Support Pension, it has been in their system for over a year and it’s an incredibly stressful process, exactly what I don’t need. It’s the Federal Government trying to save money and most people with my illness get refused and have to appeal. For some stupid reason the assessors at Centrelink believe they know better than four doctors! Absolute disgrace especially in our country, no compassion for people like me at all. And how are you?”

Yes, I think we need a label.

Any ideas??

I Almost Died This Morning


Really truly, no joking.

I felt like I was dying, honestly. Whether it was just my Fibromyalgia or ME or both, it really felt like the end.

Of course it wasn’t. I’m a male, we get worse pain than females as a payback for not having to give birth to anyone.

Turns out I had missed a dose of pain medication. But hand on heart I actually asked myself, “If this is the way I have to spend the rest of my life, I would rather not thanks.”

Not that I would ever give up either, it is just that I thought it, I didn’t actually do it. Obviously…or I would not be writing this.

So, now I know again (this has happened before) how sick my body really is and how strong my pain medication must be.

You see, I woke up at 11.15pm thinking it was about two or three in the morning, and my body felt like it was coming down with a bad case of the flu. This was very, very worrying because it is almost two years ago now that I went to my then GP and said; “I have really bad man-flu, I feel like I’ve been hit by a truck but I have no nasal symptoms.” His response that I couldn’t do anything but ride it out wasn’t totally reassuring, but also not unexpected.

That is when it all started, and it has been on a downward curve ever since.

Until what I hope was the bottom of the curve this morning.

Anyway, I took my 1.00am medication at 11.30pm because of how I was feeling, hoping to stop it before it got worse.

Well, it had news for me!

I then woke up just after 10am, which would normally be cause for celebration because I never sleep that long, except my body was in the worst pain than I can remember.

My wife (Angle of Mercy) came in, and I would like to say that it was because I calmly called out “Claudia, could you please come here for a moment”, but it was probably “Oooahhawwwhumpfurgle.”

My skin was on fire so she couldn’t touch me and I couldn’t move, which was not an auspicious beginning. I was lying as perfectly still as possible, because any movement meant something touching my skin (even my skin sensitive fabric night attire) making it feel as though someone was lightly cutting me with an incredibly sharp knife.

I will not repeat “worst pain ever.” Oops, sorry.

She was brilliant. Calm and caring like the incredibly loving person she is, she asked when was the last time I had taken any drugs. In an extremely croaky voice (because I was dying you see) I said I wasn’t sure. So she quietly made me do some calculations and I realised that I had not taken any of my medications for nearly twelve hours, when they should be taken every five hours.

Mmmmm. Even in my dying state I realised that was probably not ideal.

Claudia asked if I would like some iced coffee and pointed to a glass full of her delicious concoction on my bedside table. Yes she makes it herself because she is an Angel, please refer above.

I recoiled in terror because reaching for it would mean fabric moving against my skin and certain death (certainly more pain, if that was possible).

So she fixed me up with my medications, doing everything but take them for me she (did I mention that she is an Angel?). Half an hour later I started to feel my normal pain, not the death defying stuff, and after an hour I could actually get out of bed.

So now I know what my real illness feels like underneath all the symptom-attacking drugs I take, and it scared me – no, it terrified me!

Needless to say we went through my medication schedule again, increased the volume on all my alarms and checked my “stock” to make sure I had enough until my next doctors visit.

My wife saved me today. Just as she does every day, except she really saved me today.

This revolting episode possibly explains why I am still awake tonight at 1.30am, even though I feel so incedibly tired (real tired this time!).

So please, whatever you do, DO NOT FORGET TO TAKE YOUR MEDICATION!!