Things we should do more (and less) of when we get older


As we get older many things change. The kids have left home (yay!), it takes longer to get ready in the mornings (boo!) and you have a lot more hair but not where you want it.

Unfortunately there are many things about getting older that we need to know but no-one tells us. Getting older doesn’t come with a user manual. It should. We need one, desperately. There are thousands of books on how to bring up your children and confusing the hell out of you in the process (Hint: just buy one book) but nothing about the etiquette of getting on in years.

So I have come to your rescue and listed not only the things you need to know about, but I have also put them into two simple categories.

You’re welcome.

So here goes. The lists are;

– What you need to do more of
– What you need to do less of

It will make sense as we go on…I hope.

What you need to do more of:

  1. Look for unsightly hairs. I sometimes do this and reel back in horror at how long they can be and where they can grow. Honestly, they are like weeds and it is your civic duty to remove them all before venturing outside…please!
  2. Allow more time to get ready to go out. This is partly due to the above issue but also because it simply takes you more time to do things now. You do not want to be rushing around at the last minute because hips are the first thing to break when you trip over your cat. The second thing? Your spouse, as they break into hysterical laughter.
  3. Always know where the toilets are. This used to be just a handy piece of information, but now it could mean the difference between dignity and utter humiliation.
  4. Wear more clothing. Your flesh may still be yours but it doesn’t listen to you anymore. It sags, it grows spots and it certainly cannot be shown at the beach. Budgie smugglers or bikinis at your age will get you an automatic fine and jail time. Or at least it should.
  5. Sitting down. Yes it is boring but if you decide to heroically stand because there are older people in the room your back will kill you, slowly, over many painful days. Oh, and the older people in the room that you stood up for so they could sit down? They’re the same age as you!
  6. Listen more. Or at least try to. Putting on a thoughtful expression helps to hide the fact that you have no idea what young people are saying anymore.
  7. Reading. Definitely more. At our age we realise that we don’t know everything, that we probably didn’t know everything when we were eighteen after all, and we never will know everything. The good news? You can do this sitting down.
  8. Be on time. Unfashionably late does not exist anymore at your age, so you are going to have to be on time more than you are used to. If people ask you over to their place for a meal (unlikely given all the points above, let’s face it) at seven o’clock they actually mean seven o’clock. Now if you’re late you better have a damn good excuse – this is where tripping over the cat and breaking your hip actually becomes useful.

What you need to do less of:

  1. Looking closely into a well lit mirror. Yes I do realise that this conflicts with number one in the previous list. The trick is to do this quickly so you have enough time to spot the wayward hairs but not enough time to see yourself in closeup. It is an art so you will need to practice this one.
  2. Eating. Trust me, that last piece of chocolate cake is definitely not worth it! Do you really want to be constipated for the next few days and feel like you swallowed a brick?
  3. Sport. Or any physical activity really. Lying on the floor in agony for a week is not fun so know your limitations and do not play beach cricket anymore. Or beach footy. Actually it is safer to avoid the beach completely, trust me.
  4. Alcohol. You knew it was coming so stop that groaning! You may have been the life of the party after a couple of wines a few years ago, but now you’re slumped half way down the chair in the corner, dribbling. And the people who you came with? They’re drawing straws to see who is unlucky enough to take you home.
  5. Technology. If it is moving too fast for young people to keep up with then what chance, seriously, do you have? My advice is to just let go, practice saying “It changes so often these days!” (hopefully not just after you asked the salesperson for a floppy disc – must be that damn hip again). Seriously though, if young people are saying it then you can too. So practice. Less technology means less embarrassment.
  6. Talking. After everything I have just told you are you really brave enough to join a conversation, let alone start one?
  7. Eating anything hard. Teeth are very expensive, so please look after the ones you have left. Oh and I should also warn you about anything chewy. Apart from taking two hours to eat, it sticks to your teeth which is dangerous when you swallow, as your teeth may still be attached.
  8. Exercising in public. Not only would this erode any self-respect you have left, there is a very good reason why they do not sell gym memberships to people in your age group. It scares their customers away.

I hope this has been useful. Getting older is like removing a band-aid, it is best just to rip it off and see what is underneath. And it’s not pretty.

If it is any consolation, take a look at the young, happy, smiling, think-they-are-beautiful young people around you. In no time at all they will be experiencing weird hair growth and fragile hips. And they have no idea what is ahead of them.

Ah, the joy of contemplating this knowledge makes it almost worth getting older.

Almost.

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??

The Business of Governing


The common statement “the business of governing” is detrimental, as the focus should be upon providing government with the best efficiencies private business experience, and expertise, has to offer.

The statement should read “business within government”, providing a completely different mindset.

This involves implementing within government the best efficiencies of business by identifying process improvements, removing duplication of effort, improving inter-departmental coordination, reviewing and assessing key personnel (always with the goal of ‘best fit’) with positions allocated by merit, and producing budget savings through operational efficiencies, all with a focus on customer (public) outcomes and improved service.

Quantifiable achievements would include;

  1. Designate and decide on all areas of Departmental and Ministerial responsibility so no-one can “pass the buck”.
  2. Allocate responsibilities and targets to ensure the desired and clearly stated outcomes are achieved within set time-frames.
  3. Ensure all cost savings achieved are ongoing, no one-off savings included in targets, by implementing guidelines, overseeing their implementation and educating management.
  4. Allocation of necessary resources (from those existing within government), setting applicable Key Performance Levels (KPL) and managing staff to complete set objectives and achieve all desired outcomes.
  5. All reports produced to be concise and written in plain English, with detailed analysis provided only when requested.
  6. The emphasis will be on outcomes, results, savings, improved service and efficiency not on unnecessary documentation, sub-committees or meetings.

This proposal would require minimal personnel for it would allocate additional resources from other Departments (not exceeding an agreed limit), and investigate and set goals, priorities and outcomes in simple terms.

Initial targets would be;

  1. Documented ongoing budgetary savings through reduced red tape via improved coordination, demarcation and processes.
  2. Improved accountability within government departments creating efficiencies and gains in timelines and processes.
  3. Improved ‘connection’ between wants and needs of the public and what government provides.
  4. Improved public service in all areas, with all agreed objectives (including time-frames) being met.
  5. Overall improved perception of government efficiency, thereby attracting a higher class of personnel and additional budget savings through their specialist knowledge and experience.
  6. Improved performance measurement and ongoing guidance to ensure operational efficiencies are maintained.

Is the above business-like approach really outside the capabilities of our elected officials? When every vote counts, decisions can be compromised.

This is an unfortunate fact since Democracy (or what we now know as Democracy) began.

It would therefore be prudent to appoint a successful business person to head such a Department with powers level with that of a Minister, to ensure success.

The saving of hundreds of thousands of dollars would result, if expedited correctly, an amount equal to hundreds of people not having to pay tax for a year. As the appointee would be on a contract they would have no fear of losing votes, leading to decisive and correct decisions being made.

Surely a winner for everyone, especially as the above savings figure is extremely conservative. In fact, savings of millions of dollars would be the set target, anything less being regarded as a failure, over the term of implementation (years).

But would politicians have the courage to give someone the power and authority to achieve this? Unfortunately I fear not, for once again they would wonder if introducing such a system might anger some minority groups and lose them votes. Or potentially cause disgruntled public servants to voice discontent. The right person for this role would take note of any such discontent and target them for removal.

Change is far easier to implement when you have new employees, who are unaware of ‘old’ procedures and are more willing to accept new ways of thinking.

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!!

The Decaying Morality of Big Business in Australia


Once upon a time…yes I am using a fairytale opening, because big business and morals in this country has now become a fairytale concept.

With the Royal Commission into Banks, who would be naive enough to think that all the other big publicly listed businesses actually do the right thing?

Why would they?

Their advertising says that you, the customer, are the most important thing to them when in fact it is hitting targets to gain bonuses. They couldn’t care less how they achieve their bonuses just as long as they receive them.

When was the last time you heard of a major Australian public company contributing to a crowdfunding campaign for someone in desperate need? I cannot remember one.

Small businesses have, however, and enjoy a far better image as a result.

The four major banks should have an ‘Humanitarian Budget’ which is allocated to the worthiest causes as judged by senior, or even middle management (remember them?). They can, and should, by any moral or ethical argument put some of the Billions of dollars in profit they make each year towards dozens, perhaps hundreds, of worthy causes. Their bottom line would barely be affected.

The one stupid, contrary argument (and unfortunately it is law) is that as publicly listed companies they must put shareholders interests first. In other words they must maximise shareholders’ dividend payments.

As mentioned they could easily give away $10M each and split it up into hundreds of worthy causes. However their shareholders would rightly ask “Hey, by law you have to put us first and by giving that money away I got $10 less in dividend income!”

With the law on their side unfortunately it is a circular argument, a Catch 22.

As long as that law remains as it stands, profits will always be put before helping people where public companies are concerned. Perhaps a ‘tweaking’ of the law is required?

Many large private companies (but still too few) are well known for their generosity. I argue it is because they decide what to spend their profits on, not a horde of needy shareholders.

At this stage I must put my own hand up, and reveal that I have owned shares and as a shareholder I lived for those dividends. Yes, I am two faced but at least I admit it and am ready to discuss badly needed change.

The big four banks might point to a number of charitable donations, but they seem to only contribute if they can place a huge logo on it, in order to achieve a return on investment for their marketing dollars. Yes, they call helping people in need “Marketing”.

Westpac used to have a lovely rescue helicopter flying around but only because it was saturated with their logo. Then they did some analysis and ROI (return on investment) calculations and ceased funding this rescue helicopter. Not because they couldn’t afford it, but because they need to put shareholders first followed closely by their bonuses (or is it the other way around?).

Putting bonuses ahead of helping people is disgusting and definitely unAustralian. Which is ironic because had they helped more families they would have received more favourable media coverage and may not be facing a damaging Royal Commission right now. It would definitely would change our perception of them.

But there is one final problem, and this is the biggest and by far the most difficult to understand. Almost everyone hates the big four banks, and will complain about them ad nauseum but they will not close their accounts and take their business elsewhere! The big four easily have 85% of the total market, so there is no incentive on them, at all, to change their ways. In fact it encourages them to behave badly because their customers do not leave them.

So, in the end, it is your own apathy and unwillingness to follow through on your complaints that makes them so comfortable. It also creates the perfect environment for corruption, because they know that no matter what they do their customers, by and large, will stay with them. So up go fees, down goes quality of service and contributing to the community.

Well done Australians, you reep what you sow.

P.S. If you liked this short article please click on the “Follow” button, I would love to have people other than my wife and parents read my rantings!

Why can’t we 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.

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

%d bloggers like this: