Boredom, the new disease

So I have ME/CF (I refuse to put the ‘S’ at the end for it is NOT a syndrome) and Fibromyalgia and am taking all sorts of medication, but the worst (after the symptoms, and the symptoms the drugs cause) is the boredom.

I, like most others with a chronic illness, still think and feel the same now as I did before my diagnosis. Yet I have zero (mostly negative) energy to do anything. Which leaves me with thoughts and feelings I cannot act upon for lack of energy.

Meaning I’m bedbound yet crave to do all the things I have always done, but even going to the local cafe by myself is impossible as I have no way to get there. No car (can’t afford a second one) and I can’t walk that far.

So what to do all day? Reading sometimes brings on a dizziness attack, walking to the living room leaves me breathless so the rest of the house is pretty much out of bounds.

And I hate daytime TV.

Last year I wrote a book on my phone, one hundred thousand words by thumbpressing, but do I have the energy to go to my computer, turn it into an ebook and upload it to Amazon after finding out how to do that? Nope.

I have no money so I can’t online shop and get excited about a delivery. The only mail I receive are bills.

So what to do? Damn good question.

“Dizzy” – by Tommy Roe

A great song, I used to love it.

Used to.

That is until the inside of my head has impersonated a spinning top for the last nine weeks or so, without stopping for one microsecond.

I’ve had dizziness before with my illnesses (Fibromyalgia, ME and CFS) but it has always just come and gone, sometimes violently. This time it’s a constant whirring, with someone controlling the speed remotely. One moment it is a reasonable one or two out of ten (on the dizziness scale) then suddenly it’s up to seven or eight, with accompanying nausea and a feeling of having absolutely no control, over anything.

It’s a bit like being in a spinning, plummeting airplane. Or at least that is how it feels and how my imagination pictures it to be.

I’ve given up all drugs except my painkillers, which I have also reduced by two thirds in the hope of the dizziness stopping. I thought it was a side effect, as it started when I began a new drug. Now I just have more pain…and dizziness.

Maybe it’s not though, and that scares me more than anything. What if it is here to stay? I’ve barely maintained my sanity for nine weeks, I have no idea how I would survive nine months!! Oh please god no!

So now I hate this song, yet cannot get it out of my head. Much like my dizziness.

Exactly like the flu virus, only completely different

The flu virus changes every year, making it difficult to treat and meaning a different vaccine is needed yearly.

With ME/CFS and Fibromyalgia the treatment changes almost for every person, so different treatments and drugs have to be tried for every person to find one that helps.

And you get better from the flu, you don’t get better from what we have.

So in fact it’s completely different from the flu virus – my bad.

So how do you find a cure for something that affects those who suffer it so differently? There are so many stories of different drugs that ‘gave me my life back’ that it is impossible to engineer one cure for us all.

Of course I hope I am completely wrong.

There is of course one supplement that actually works for over ninety percent of us – cannabis oil. No THC so no high and therefore no possibility of addiction, but because of the word ‘cannabis’ it has more opposition than an Australian Prime Minister.

There is more than thirty years of science that proves it works, has no side affects and is not addictive. Had it been developed by a large pharmaceutical company it would already be on the shelf.

Unfortunately for the pharmaceutical companies they have no money invested in cannabis (to my knowledge) so they help form the ‘against’ argument – no profit, no health.

If I won the lottery I would start a business here in Australia producing cannabis oil and I would pay taxes, making the government a fortune and a few hundred thousand people feel human again.

Why is it so difficult?

Oh how I hate nights!!

They say that no matter what sort of disease or illness you have, nighttime is the worst time. You feel worse, suffer more, and daytime is so damn far away…

I’m currently feeling the worst pain I have ever been in since this journey (over a pothole filled road with boulders and lava to negotiate around) began.

It’s probably subjective because I have almost got myself off the drug that actually made me feel barely human. Unfortunately we discovered that it was also making a meal of my brain and would send me into dementia within ten years.

Yes I did pause, briefly, to decide what would be worse. What I had before was the worse pain in my life, but then I kind of enjoy my brain. Plus there is no way I could put my wife through that slow slide into dementia, something only evil could conceive of.

So here I am, struggling through horrid nights. I’m afraid to go to sleep these days because I know I’m going to wake up like this, just before my next dose of painkillers.

By the way my painkillers are addictive and their overuse is something like the third or fourth highest killer of people in the US. Don’t big pharmaceutical companies make safe drugs anymore?? It’s almost like they want you to suffer side affects so you have to buy more drugs to fix them as well.

But I’ll fix them! I’m on a very low and safe dose of painkillers and, as I said earlier, the other painkiller and energy/lifegiving drug I’m almost rid of.

So just me and my pain. I’ve got those pharmaceutical companies beat! I just take extremely low doses or get off them completely! Ha! Didn’t see that coming did you!!

Of course there is the massive pain to deal with, but every fight has casualties.

I just wish I wasn’t one of them.

My illness fights back…

For the past six weeks I had been feeling the best, healthwise, since around June 2016.

Less pain, more energy, oh how I was loving it! Endep (amitriptyline hydrochloride) I love you!

Then silly things I dismissed as stemming from my exhaustion became more real, then downright worrying.

I was hallucinating, which was funny at first, just like the worsening brain fog.

‘Haha, silly me, what a laugh’ soon became ‘what the hell is happening to me?’

Obviously my symptoms were feeling neglected, poor things, because they sent hallucinations and extreme brain fog to get me and shake me out of my new (relatively) comfy world.

I would have a conversation with my wife, and the very next day I had no recollection of it whatsoever… I still don’t! And those hallucinations? I was reading a book when the lines started to appear as though someone had highlighted them in green and then yellow. The next thing I remember is thinking wow this huge piece of hot fresh bread in my hands looks delicious (any bread is a no-no for my diet) and I was going to take the biggest bite possible!

Then I was back in the real world, only to find myself about to take a large bite out of the book I was reading.

Yes all the small hallucinations and forgetfulness was a bit of a lark to start with, but now it wasn’t funny anymore!

Last Saturday I had my monthly appointment with my wonderful GP and told her of all my symptoms. She got out her information on Endep and read out the horror side effects that ‘could’ occur.

Then she said it was my choice, a reasonably good life for about ten years then Dementia, or I go off the drug and all my symptoms come back. I would be back to square one with my pain, dizziness, sensitive skin etc etc.

Chronic illness 1, me 0.

So last Saturday I reduced my dose from 150mg to 125mg. Not much, so how hard could it be?

Extreme nausea, thumping headache (that lasted hours and hours and hours) and hello sensitive skin! Gee, how nice of you to return to make my life hell. Now, as before, anything touching my skin (including air) was once again a source of sharp pain.

So what now? Unfortunately the other drugs I could try have the same possible side effects. Indeed the only medication that has worked with me over the past two years was CBD (cannabis) oil. I managed to score a small sample and it was wonderful.

No side effects, no addiction possible because the THC (the stuff that gives you a high) is removed.

But of course our moron politicians would rather spend our hard earned tax dollars and subsidise my expensive drugs, rather than allow me access to a native oil that I would gladly pay for myself. It would help tens of thousands, and has a multitude of peer reviewed studies showing how amazing and side effect and dependance free it is.

And it is available in the US, including one State (Colorado I believe) who paid off their entire debt within one year of allowing people to grow and sell this oil.

I shall say again for all those conservative and ignorant wowsers out there, NO the oil DOES NOT include the THC that gives you a high, hence the fact it cannot become addictive.

Yes, our wonderful Federal Government did say a while ago that we could have access to this in Australia. What they didn’t say was it is only available if you get two doctors to say in writing that you have tried all other available medication (which can take years) and they support your application for CBD oil.

If, by the glory of the public service, you are approved, they only allow you two months supply before you have to fill out a stack of other forms! So yes it is available but only if you spend all your time going to doctors, trying drugs that wreck your brain, and filling out a bazillion forms every few months.

I think I would rather be ill.

I did hear that some people were buying it from overseas and getting it shipped here. Great!…except the ever spreading moronity within our government then banned this. Isn’t it nice to know that our government is taking such an interest in our health? Here in South Australia they built the world’s most expensive hospital and ran out of beds within two weeks. So sure, we trust them!…..don’t we??

There is a naturally occurring plant that can be grown here, where the THC (and hence the ‘high’) part of the plant is removed, made into an oil and sold to over a hundred thousand sufferers as their only relief from devastating chronic pain and suffering. And a side benefit is that the government can tax it and make a fortune.

But no, far more efficient to keep it all at arms length, make hundreds of thousands of their subjects go through hellish illnesses and ignore the massive income stream they could receive.

Much better to sit back and wait for opinion polls, to see if they would gain more votes than they would lose, before helping the sick.

“I’m from the government, and I’m here to buy your vote.”

If you want to read more; https://eternalplants.com.au/news/medical-cannabis-red-tape-forces-thousands-turn-black-market-pain-relief/

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!!

Why can’t we (ME/CFS sufferers) sleep???

The chronic illnesses we suffer from are usually the result of stress, anxiety or some nasty virus we had earlier in our lives. This results in us not being functional human beings during the day due to complete exhaustion and pain.

So you would think that our bodies would be eternally grateful to us each time we lie down at night, turn out the light and finally close our eyes for some much needed rest. The rest that our body has been craving all day.

But no.

As soon as it is time to go to bed we get all wired up (wired-tired) and are lucky to get just a few hours each night.

I personally have gone a whole night feeling so wired I was still awake when my wife went to work at 6.15am the following morning.

What the???

Our bodies demand rest, our doctors (the ones that understand us and actually believe we suffer from a real condition/s) tell us our chronic illness was probably caused by too much stress and we should sleep as much as possible. Yet at night time our bodies change their mind.

“Sleep? You don’t need sleep! Read a book for hours, just lie there with your eyes open (or shut, I don’t really care) but whatever you do DON’T FALL ASLEEP!!”

Am I exaggerating this? My own experience and, apparently, the experience of dozens of other people’s comments on social media, says the answer is a definite “No!”.

So our own bodies are filling us with false hope every day. It is exhausted it tells us, it needs a rest desperately it says, if only it was bedtime it moans.

Then we finally go to bed…and our bodies make us feel like we could run around the block and do 50 pushups afterwards! Well not really, it’s just the wired-tired feeling, I know there is no way I could run just one step let alone around the block. Anyway it’s dark out there, shouldn’t I be sleeping?

Either there is something seriously wrong with our internal wiring, or our bodies are playing cruel jokes on us.

What do you think? I would really like to know!

P.S. Please follow this blog. It is something that provides me with just a little sanity in my screwed up world. So it would be nice to know that more than ten people will read it. Your choice of course.

Chronic Illness: The Curse of Invisibility

I, like many others, live within a predominantly transparent bubble behind several masks.

I was taught, as we all were, to wear a mask that conforms to my surroundings and most importantly the people within those surroundings. All to fit within the acceptable confines of my particular place in society, and the position of the people I am conversing with at that time.

We must choose the particular mask to wear for each occasion in order to meet society’s expectations, as we have all been taught (either directly or indirectly)

The (predominantly translucent) bubble I spoke of earlier is reserved for those, such as myself, who suffer from an unseen ailment. These various ailments could be the result of an action or experience (one incident or many) that we have endured, or the profound loss of someone who had a special (perhaps critical) meaning in our life or, as in my case, a chronic illness.

The bubble allows those of us who would otherwise be viewed as flawed, to outwardly project an image of conformity. It protects us making it possible for a vast majority of chronic illness sufferers to answer politely to such mundane and repetitive questions such as; “How are you today?”. Automatic questions that society dictates people ask out of courtesy every day, but inflict upon those of us with an invisible illness an internal and stressful conflict; Do I answer truthfully or do I value this person’s company?

The correct answer and the one expected is, of course; “Fine thanks”. However this answer is lightyears from the truth.

Steangely, if others have a minor ailment such as a cold, or a short term pain or discomfort that will pass within days, people are allowed to respond (to myself and my fellow sufferers astonishment) with an informed and lengthy response. After they have described their minor ailment the acceptable, indeed expected, response is immediate sympathy accompanied by offers of assistance!

Those of us who suffer a chronic illness do not receive such a welcome response to a description of what ails us, for we appear to be in good health (no sniffles, coughs or bandaged limbs). Alas, the exact opposite is true.

Therefore our answers range from a stuttered; “Oh, not too bad thanks” to naming our affliction and then describing detailed symptoms.

Worse still are greetings such as “You look great, you must be feeling much better!” and “You just need some fresh air and exercise and you will be better before you know it”. Indeed a knife thrust into a random body part is often preferable.

My own predominantly transparent bubble is becoming increasingly fragile, for every time I have responded to this unthinking, automatic (but well meaning) question with a “Fine thanks” accompanied by a smile, internally the lie builds and builds. This internal conflict adds to my stress and threatens to collapse and reveal the real me, something we are taught to hide. In truth I am afraid of what I might see.

My chronic illnesses (ME/CFS and Fibromyalgia) are completely invisible to the naked eye. However they are rated by published peer reviewed research as comparable to suffering the same pain, exhaustion and depression of a cancer patient in their final months.

Yet I have also been taught so well throughout my life, through repetition and society’s expectations, to provide the expected response just as quickly and unthinkingly with two little words “Fine thanks”. Once uttered, the lie is immediately regretted.

The internal anger that follows those two words is aimed squarely at my vacuous utterance, the falsehood of my answer and my (quite unreasonable I admit) regret that my illness is invisible.

I recently attempted a slight change to my response, to avoid my bubble from disintegrating followed almost certainly and immediately by my screaming “Can’t you see how bloody ill I am! I bet you couldn’t last a week in my body!”. I answered some greetings with; “Oh, about the same I’m afraid”, and failed miserably. This experimental response was met with confusion, blank looks and awkward prolonged silences. I should have anticipated such reactions as they are perfectly understandable, for my answer disturbs the flow of greetings that society dictates and indeed expects.

The simple and automatic process of a greeting has been irretrievably programmed into our social subconsciousness, and my unexpected answer was outside the acceptable parameters resulting in people not knowing how to react.

I have therefore abandoned this truthful response in exchange for peace and normality. It also preserves my bubble, allowing me some sort of social interaction and protection.

When I am greeted by those who are aware of my true condition and believe and understand it, I answer truthfully and honestly and am rewarded with genuine expressions of sympathy and offers of support.

Unfortunately this bubble varies for everyone forced to live within its confines, and not everyone has people close to them who believe their illness exists and is completely debilitating. This does not allow them to unburden themselves nor receive the assistance, sympathy and support they so desperately need.

With ME/CFS and Fibromyalgia, the illnesses are monumentally painful and include a list of symptoms so crippling you would wonder how anyone could live with them, but the illness and its symptoms are completely invisible. Unfortunately this is why many sufferrers are sadly met with incomprehension and a complete lack of understanding, which often leads to disbelief.

And their bubble darkens and becomes more fragile, another weight to carry equal to all the others combined.

And if their bubble breaks desperation fills the void, followed by even more stress which feeds the illness which then causes more stress…

Unfortunately when someone is confronted with something they do not understand, the social norm is to refute its existence. To not know something and admit to it out loud is to risk being called a fool. If you are a professional in the medical field with years of learning and experience, these illnesses are so rare and contentious that the safest thing for many is to ignore it. Better still, deny it exists.

Many times have I, and people with the same afflictions, been told by a medical professional, “I don’t believe in ME or CFS, as for Fibromyalgia just exercise four times a week for twenty minutes and you will be fine.”

WRONG!!

Countless studies have shown that exercise, even in its gentlest form, causes crashes that can take weeks for us to recover from.

Ten years or more of medical training and experience apparently beats what you are feeling and experiencing and therefore you, the patient, are wrong.

This cannot last as more and more people are presenting with these symptoms. Fingers crossed…if I could as they are too painful most of the time.

The struggle to continually assert to people that we do in fact suffer severely and there are hundreds of A class published research papers and millions of dollars being spent chasing a cure, is ridiculous and exhausting.

The fact that the majority of medical professionals believe their current collective knowledge is ‘obviously inscrutable’ (as it was before penicillin, medicinal cannabis, sterile operating theatres…) and therefore must be faultless and we are fine, just adds the proverbial insult to our injury.

I believe the current scepticism is born and raised on the fact that we appear so damn healthy.

So our bubble becomes solid, unmoving, inscrutable in self preservation. One day it will become so hardened by disbelief that it will shatter, causing us to crash and burn like Icarus but without the luxury of a warning. We simply experience the end of the story, and in too many instances without the preparation or support we so desperately need.

So we constantly use our masks. We smile when we want to cry, cry when we want to scream, and scream into our pillow when we want support and acceptance.

And we may never see our true selves again.