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.

Why not hold a ME/CFS and FIBROMYALGIA Games?!

Seeing the Commonwealth Games on television last night got me thinking, why not hold a ME/CFS and Fibromyalgia Games?!!

There could be Gold Medals awarded in events such as;

1. Who can get out of bed first;
2. The fastest time for getting out of bed and into the kitchen;
3. Who can go to sleep and stay asleep for the longest time;
4. Who can take their pain medication the fastest (with bonus points for remembering the correct doses);
5. Who can correctly put away ten random everyday items from a supermarket in their right places;
6. Who can remain standing up in a shower for the longest time;
7. Who can do their meagre household budget the quickest (bonus points for accuracy and for actually knowing what a budget is);
8. Who can stay on hold with Centrelink the longest without going insane from their on hold music;
9. Who can fill out an application for the Disability Support Pension without going mad and tearing it up in tears;
10. Who can drive their kids to school whilst remembering to actually have their kids in the car and then leave them at school before going home;
11. Who can actually drive;
12. Who can find the leftovers from dinner the night before (hint: try looking in random cupboards);
13. Who can convince a doctor that their condition is real (bonus points for completing this before the Games closing ceremony);
14. How fast can you convince a random member of the public that lying in bed all day is actually not a holiday (again bonus points for completing this before the Closing Ceremony);
15. Who can take the most medication withhin 24 hours without significant side effects; (ambulances will be on standby);
16. A motorised wheelchair race;
17. Who can hold a conversation the longest whilst actually making sense;
18. Who can say the word ‘Centrelink’ without screaming or bursting into tears;
19. Who can receive a refusal for their Disability Support Pension the fastest;
20. Who can go a day without pain (this event will carry over to the next Games in four years time, and every Games after that until a winner is declared);
21. Who can climb up the steps to the diving board the fastest (you don’t actually have to dive, simply falling off is acceptable);
22. Who can watch real athletes complete the decathlon without feeling exhausted and requiring resuscitation;
23. Who can remember to bring their tickets so they can get into the Games (bonus points if you also remember your lanyard and plastic ID holder);
24. Who can complete a five metre swim without drowning (floaties are allowed);
25. Who can remember to actually show up to the Games;
26. The final event, traditionally a marathon, will be replaced by awarding gold to the first person who remembers where they parked their car.

These are but a few of the exhilarating events of these wonderful, prestigious Games. They would be held alongside the Paralympic Games because no-one with ME/CFS or Fibromyalgia could possibly interfere with their events.

If the four years between Games is too short for competitors to recover in time, the Games may need to be held every eight years (or twelve).

The actual gold medals will be made of paper, as we do not want to see contestants falling off podiums after receiving them due to their weight.

Also the podiums will be replaced by beds, at different heights off the ground (the tallest being one-and-a-half feet high) so contestants can actually receive their hard earned medals.

I think we are on a winning idea here!Who is with me!

…….now that is just rude, you could simply just say no……

Now what am I going to do with all these paper gold medals???

My own ME/CFS/Fibromyalgia story

I am writing this with the benefit of 20/20 hindsight, in the hope that someone else may recognise the symptoms I had (and ignored) and do something before it is too late.

When my first symptoms appeared I did not rest but ‘fought bravely on’, or so I thought. The truth is I made it much, much worse for myself……

Let us start at the beginning.

By all accounts I was a precocious kid who was also very shy.

About the age of five or six (maybe seven?) I came down with glandular fever. I did not know it at the time but this was very bad news and quite possibly the beginning of my current condition.

I remember feeling incredibly exhausted and in pain all over my body. After I was diagnosed I had six to eight weeks off from school and vaguely remember being so tired that I couldn’t do anything, spending all my time in bed. Not much fun without the smartphones and laptops we can enjoy now.

I was very young for my class, as my birthdate of early February allowed me to start before I was strictly of school age. This meant I finished Year 12 when I was only sixteen.

After the glandular fever I was a fairly normal kid. I spent ages outside playing with the kids up the street, running around with the best of them. In fact my parents had to tell me, on many occasions, to calm down and not make so much noise.

I wish I had that energy now!

In grade eight, from memory, I started to ride my bike to school. This was no mean feat when you consider we lived five miles away as the crow flies, and there were not many crows around to give me a lift so it was probably a six mile trip for me and my bike.

I participated in all sports, cricket and football being the main ones, and ran the 800 metres on sports days.

The only symptom I can recall near this time is that when I became a teenager I would sleep (when on holidays) until two or three in the afternoon. My Mum chided me for this, and why not because it was not normal behaviour. The beginning of CFS?

I exercised a lot, including a 1.5 kilometre run most nights (yes I know I’m mixing metric with imperial, I was at school when it changed so give me some latitude here!) so I did not lack energy.

When my University days began I do remember waking up feeling more tired than when I went to sleep. I had to drag myself to go to boring lectures and tutorials. However I thought the tiredness was because of my hatred of University. Another big mistake.

Then I started my first job as a Management Trainee at a bank. I quit after less than two years when I thought I was underutilised (I had taken to bringing a book to work because I got my work done too quickly).

In hindsight I was monumentally stupid. I was in their marketing department at the time, a role I would kill for now.

However I knew better (I didn’t) and since I had got my first job at my very first ever job interview, how hard could it be to get another one?

Bloody hard, especially if you quit your job during a recession. More fool me.

I spent the next two years doing odd jobs (storeman, pizza delivery, market research) before landing a role in retail sales. Oh, and waking up exhausted. The CFS continued and I knew no better so I soldiered on. Another big mistake.

My personal anxiety at this point was through the roof. I finally got a full time, steady job, but as a retail salesperson. Every day for the first few months I’d have to psyche myself up just to get out of my car and walk the few remaining steps to work.

My anxiety was stratospheric.

My morning tiredness by this point was out of control. Coca Cola was my staple drink, three or four cans a day to keep me awake…plus I loved it!

Fast forward a few years to my thirties, still changing jobs every two or three years because I would get bored. My first marriage had imploded and my morning exhaustion had me eating a Mars bar with a can of Coke for breakfast, just to get going. Yet another clear signal (with hindsight) missed.

This went on for a few years.

After my failed marriage, which meant I could only see my son (who was the light of my life) every second weekend, my stress levels were on another planet.

During the twelve months directly after my wife and I separated I suffered tonsillitis three times, was made redundant twice, had my wisdom teeth out, a knee operation and almost died from liver failure due to an auto-immune disease. Stress galore and even more tired in the morning.

Looking back now the stress was so enormous it was always going to pay me back, big time.

At this stage I definitely had what would be diagnosed today as CFS. They say the best thing you can do at early onset of CFS is to rest. However I was going through a divorce and had shamefully had to move back home because I was broke, so no rest for me.

Fortunately another good job came around and I was spending more time with my son (50/50). He kept me going when I was totally exhausted. How could I stop with a young (three or four year old) wonderful, incredible child to care for?

I had a lot of sales roles early in my career and as a sufferer of anxiety this was not good. However I persevered because I liked unemployment even less.

Waking in the morning was becoming a far more serious issue, as I had to force myself to roll out of bed to make sure I wouldn’t go back to sleep. Days were just a blur and I couldn’t wait to get home and lie down.

Sound familiar?

My fault entirely, as some management consultant had given an IQ test to everyone at a place I worked whilst in Sydney (another story). The good news was that he recommended I join Mensa and he told me that if I found myself in a room of two hundred people then I would, on average, literally be the smartest guy in the room. After the ego died down I put enormous pressure on myself to succeed (in anything, I just had to!).

After my return to Adelaide I was working a normal nine to five job, then at the end of that day I went to an office I shared with a friend, in a startup business we saw promise in. After just over a year of this and having a local distributor steal the exclusive rights to what we were selling, we decided to call it quits.

I was so damn tired I could hardly think straight. But I HAD to succeed and be a millionaire by the time I was thirty-five! This was the worse thing I could of done to my now very fragile body and mind.

Then I met my second wife (still married eighteen years later) who is very much into health. She became very concerned over my morning tiredness and the stress I was under.

After actually waking up feeling refreshed (the only time I can remember doing so in my life) on Kangaroo Island on a holiday, I readily agreed to see if anything could be done. I wanted more mornings like that one!

My first doctor diagnosed me with anxiety induced depression and I was put on a drug that, again in hindsight, made my ME/CFS condition worse. I took Zoloft for the next fifteen years. Zoloft can lead to ME/CFS and Fibromyalgia.

A few years later I joined a very small business and invested a lot of time and money into it. The business was in the finance industry, and I joined exactly one month before the Global Financial Crisis wiped us out.

My timing, when it comes to money, has always been atrocious.

Even more stress now, as we faced the reality of possible bankruptcy and losing our dream home. For the next three years I worked every single day (yes including Christmas Day) networking and chasing clients for my own sales and marketing consultancy, as there were simply no jobs during this time after the GFC. Money was great one month and terrible for the next two or three.

Even more stress.

Then I started teaching international students all about business, team building, leadership, finance and marketing. I loved it. However I was still waking up feeling exhausted.

Then in about April of 2016 I had what I thought was the flu. I felt like I had been hit by the proverbial bus but strangely did not have a blocked or runny nose. I now believe this is when my Fibromyalgia began, with this virus triggering another that had lain dormant since my glandular fever, causing my ME/CFS and Fibromyalgia to explode.

The GP I went to for this ‘flu’ told me to rest and wait it out. I tried to talk to him about my exhaustion for the last thirty years but he dismissed all this, telling me to get a good night’s sleep and take up exercise. The worst possible advice for the condition I had.

I went back to work a week later when I should have stayed in bed. If I had I probably wouldn’t be in the situation I am in now.

Then my legs started to feel incredibly heavy, as though made of concrete, and I began walking crookedly, uncontrollably, crashing into walls and, most embarrassingly, walking into student desks. The pain in my legs started soon after.

Finally I was getting the message my body had been trying to tell me for the last thirty years…”Stop! Rest! You are an absolute wreck!”.

The next doctor (I did not bother going back to the unbeliever) was sympathetic and actually believed in ME/CFS and Fibromyalgia. However she told me she did not know enough about it and so referred me on.

In so doing she did me an enormous favour and I will always be grateful.

The next doctor was a godsend. I first saw her in July of 2016. She had no preconceptions about my condition and was treating other patients with the same symptoms.

I had a five week break over Christmas that year (2016) after struggling to get through every day beforehand. I did nothing but stay at home and rest, but at the end of those five weeks I did not feel any better.

My suspicions were confirmed on my first day back at work as my symptoms were as bad as they were before my break. This way the time when I knew something was seriously wrong.

My new GP sent me to a Neurologist, fearing MS, whom I saw in January 2017.

The Neurologist shared the suspicions of my new GP and booked me in for an MRI. It showed lesions in my brain but it was inconclusive for MS.

My all over body pain (Fibromyalgia) got steadily, and significantly, worse. Eventually every day when I arrived home after work I had to ring my wife to come into the garage, and help me to get out of my car. I could not get out without her help.

Eventually I asked my boss at the time if I could work from home every Wednesday because of my illness, as Wednesday was my admin day. I had taken increasing numbers of days off before this just to try and cope. Unfortunately he did not believe me, instead he asked if I had my own business outside of work or was I working for someone else each Wednesday. That relationship was therefore doomed, and I must my part that with everything that was going on in my life I was probably not being a model employee

Shortly after I parted company with my sceptical boss, and had another teaching job within days, working just three days a week.

Unfortunately my condition continued to deteriorate so I started working just two days a week, then one. Finally I had to tell my employer that I couldn’t even do one day a week because it was taking more than a week to recover from just that one day.

With fear and dread at the consequences, my wife and I had decided that I simply could not work in my my condition.

In June of 2017 my Neurologist ordered another MRI which showed no change. Just in case she had missed something she referred me to a Specialist Physician. The good news was that she did not think it was MS, which was a relief.

The Specialist Physician diagnosed me with ME/CFS and Fibromyalgia. I finally had my diagnosis! I felt relief and dread in equal measure.

While all this was going on I was dealing with superannuation insurance claims and the reality that we were going to have to sell our dream home. Keeping our house clean for open inspections was a never ending task for my poor wife, as I literally could not raise a finger to help her.

This all happened from April to September last year.

Then our house sold, a bittersweet moment filled with regret, sorrow and extreme guilt for me. After all it was because of my illness that we had to sell.

I suffered more stress since July 2016 through to when our house sold in September 2017 than ever before.

And now we had just thirty days to find somewhere to buy or rent.

Fortunately we found a beautiful place in Nairne, about another fifteen minutes out from the city. It is smaller than our last home but we are loving it more and more each day (to my eternal relief!).

However prior to knowing that we would love this new home, but feeling a little excited because it was so new, the packing and moving happened all around me as I looked on helplessly and with much guilt.

Yes, stress levels even higher again. I know now that had I taken a few months off after my ‘flu’ in April 2016 I could possibly have recovered completely. Unfortunately I refused to give in and kept dragging myself to work. The alternative at that stage being far too terrifying as I knew how much my wife loved our home, as did I. I was also not sure if we had any insurance that would help us.

My wife and I had visions of a tiny unit in Elizabeth. Or even worse, asking to stay with my parents for a while!

After we moved I spent my time chasing Centrelink and insurance companies, and suffering worsening symptoms. The pain was intense over every square millimetre of my body and I had not had a day without this pain since April 2016.

At one of my visits with my new GP in around August of last year I told her I felt as though I was slowly dying.

We kept trying different drugs but the opioids gave me very bad side effects. One night I almost asked my wife to call an ambulance for me, as I was experiencing severe gyroscopic dizziness and was not sure where I was.

Today as I write this I am in ‘forced retirement’ while my poor wife, who has been an angel through all of this (as has the rest of my immediate and incredibly supportive family), has to keep working.

We have about eighteen months of Income Protection payments left, after which I will receive less than half that until I turn sixty (I am fifty-four now). Then it is the Disability Support Pension which took ten months and the submission of about one hundred pages of information to approve.

My GP has been trying some different drugs lately and one has given me some small relief. Unfortunately my days are still filled with sleeping, reading, watching Netflix, taking drugs and trying to take a shower.

And yes, when I tell that to some people they respond by saying it sounds like a wonderful holiday to them. Then they look at me, see (on the surface) a healthy looking person and either turn away or give me that stare first, the one that says; “You’re a lucky bastard.”

If they had to spend just twenty-four hours in my skin they would be begging to return to their previous lives.

Boredom is a major part of my life. I cannot walk more than 500 steps a day without having a crash the following day. A crash is even more pain, a migraine, incredibly painful feet and hands (so I cannot walk anywhere or hold anything), dizziness, insomnia (wired-tired), not to mention the pain on every square millimetre of my body.

Basically I spend the day in bed taking as much medication as I am allowed and go through three or four cold compresses for my exploding head.

Back to some good news. At least now I know what illness I have and all the uncertainty, forcing myself to work when feeling like death, disbelieving doctors, sceptical employers and the stress of losing our dream home because of my illness, is all behind me.

I have no idea what I will, or can, do for the rest of my life. However one thing I am sure of is that I want it to be a very, very long one.

Hey??

Every moment I spend with my beautiful wife and family is worth all the pain and suffering. I hope that you have someone in your life that makes you feel the same way.

Good luck to us all, and may a cure not be too far away!

An Awareness Poem for CFS/ME and Fibromyalgia sufferers

Suffering chronic pain in silence

Yet not even your medical licence

Makes my illness visible

I can hardly walk

And yet you talk

Of exercise, you’re so derisible

Spend a day with me

And you will see

What I do, just to survive

And yet you doubt

What my disease is about

You think you are so wise

What do I have to do

So I can prove to you

That my illness is very, very real

Perhaps spending a day in my skin

Would allow you to begin

To know exactly how I feel

Only other sufferrers like me

Can really see

The pain I suffer every day

So take your scepticism and leave

Until you come to believe

Because this may be you one day

No known cure nor cause

I deserve a round of applause

When I stand and walk five paces

Pain and headaches go on and on

Can’t tie laces so now wear slipons

A stranger to my favourite places

Now add dizziness, nausea and much more

To understand why my soul is so sore

Your disbelief is ignorant and baseless

Ninety plus per-cent of my days spent in bed

A cold compress and pills for my head

I pray for the day this will all end

Perhaps then you will welcome me

And be ready and willing to see

That this is real, my dear ex-friend

Concrete legs..how common are they?

My first symptom that something was seriously wrong (I have Fibromyalgia and ME/CFS) was the feeling that my legs were incredibly heavy.

Not just heavy, really, but “are you sure they haven’t turned into concrete?” type heavy!

This lead to me, whenever I walked down a corridor, for some reason to lean to one side until I hit the wall, literally.

It affected my brain somehow, these concrete legs, and I had absolutely no control over where I was going. For the life of me I could not walk straight, and you can only use the excuse “You know, I should really stop drinking at work!” so many times.

It would also happen suddenly. I’d be walking past a student’s desk (my last job was as a teacher) then suddenly head straight for it and…bang!

My legs felt so heavy when I sat down that the relief was palpable, but then slowly, over a few minutes, they would feel even heavier…massively heavy in fact so that I was scared the chair would surely break and then I would fall through the floor and keep on falling until I hit something heavier than my legs. I had no idea what that was and very little ambition to find out!

Lying in bed at night it was the same. I was constantly amazed that the bed wouldn’t collapse under their enormous weight.

Obviously walking itself, and getting up to walk, was massively difficult and I could hardly move forward. One of the simplest things we do in life, walking, we do not even think about it and yet it was so incredibly difficult because my legs, I was convinced, were made of concrete.

They are slightly better now, but not much. For example at present I’m lying in bed using my phone to write this (apologies if it shows!) and my legs feel so heavy I just want to stay in bed forever. Please don’t make me feel the pain of getting up!!

However I also want to spend some time with the love of my life (no my wife, not a dog!) so shortly I am going to have to stand up and I am dreading that moment.

One of the worse things about this illness and in particular it’s symptoms is that you cannot see them. Therefore people had no idea I feel like I am fighting to stay alive. Instead I would get comments like “You’re looking a lot better”, and “You look so healthy, you must be glad that’s over!”

No, not really, I feel so heavy and dizzy and have a huge headache and I am seriously considering whether I can continue working.

I would arrive home after work and would have to literally wait for my wife to come to my car and help pull me up and out of it, such was the feeling of massive exhaustion and heaviness. If she didn’t hear me come home I would ring her from the car, which was in the garage, to come and help me get up. Pathetic, isn’t it? And I felt pathetic, and useless, and a burden unable to contribute in any way to our home or, indeed, contribute at work.

It all became too much for me, even when I cut my hours down to just one day a week. I wouldn’t have recovered from that one day until it was upon me again. Yes, it takes me that long to recover from ‘activity’, such as working, even if I sat down all day and only got up when I had too.

My lunch became protein drinks because I didn’t have the energy to chew.

So eventually I had to give up work, which financially was terrifying and also filled me with dread and massive guilt.

Soon after this we sold our dream home and moved further away from the city (we received very little from the sale of our home, unfortunately). Fortunately my superannuation insurance policies paid out my Total and Permanent Disability (TPD) claims and are also paying me a couple of years in income protection payments. So we can save, hopefully, a little bit of money to live off of for about thirty years. And when I say little I mean it, as it will be less than a years income and will have to last whilst both of us are not working. I think the word I am looking for is ‘tenuous’.

The insurance companies had a waiting period of three months (for the income protection payments) so we went into debt. I then decided to do one of the hardest things I have ever done in my life and started a crowd funding campaign for us. It had a target, and vain hope, that we would get enough money to stay in our glorious home. However enough was raised so that we could live until the house sold, and for that we will be forever grateful to those who contributed in our darkest hour.

People do not realise what you feel (myself included, although I am far more aware now and not so quick to judge) and what you go through emotionally in times like these. They think they do and try to be helpful by saying “It’s only bricks and mortar.” Maybe, but it has been our home for nearly 18 years and it is embedded in our hearts and souls.

I must add though, that when the insurance companies paid out my TPD claims we were able to purchase a beautiful home we now both love, with a mortgage but a significantly smaller one, about another fifteen minutes further away from the city. It really is wonderful, and a lot better than moving in with my parents or being homeless, which were our other two choices.

So life has settled now, the dust has fallen after the whirlwind has passed and our sorrow has turned to greatfulness.

Finally, and the purpose of this article (sorry but I am easy distracted….oh look, a bird!…….sorry again.)

I would be interested (if you are a fellow sufferer of these invisible illnesses) if you have, or had, the same symptom of concrete legs?

Bloody Migraines!!

Well, 3.35am and my latest migraine is now ‘just’ a bad headache.

I had one last night too. In fact they are so regular, I do not think I have gone a whole week without one since my illness started around June 2016.

It nearly always starts the same way. I am asleep, I wake up and need to pee (please excuse my crude language but I do have a very bad headache) and at this stage I feel alright, in that I do not have a headache. Then I get out of bed and it hits me, hard, usually on one side of my head.

This causes me to stumble and crash into the walls, furniture, basically everything, when I am trying very hard not to wake my wife (fail!). She gets up at 3.30am for work so she needs her sleep. This makes me feel guilty and my headache responds by pounding the side of my head even harder. It is the right side today (just in case the suspense of not knowing was too much for you).

So, I go and get the ‘beans’. We always have two packets of beans in the freezer, wrapped in tea towels so I can rest my head on them. Yes, two packets, as some of my migraines last for quite a while.

So now I am at the point (this point arises, at some time, with every migraine) of deciding whether to take a Maxalt, which is a tablet specifically for migraines. I place one tablet on my tongue and let it dissolve. The reason I hesitate is because they used to cost just over $6 a tablet, which quickly adds up when you have several migraines in a week.

Fortunately now I have qualified for the Disability Support Pension and with that comes cheap medication. So, now they cost me just over $2 each.

So why am I waiting, you ask?

Just take the tablet and get rid of the pain? Well, you see, if I took a tablet for every headache (as all my headaches can turn into a migraine within seconds, literally) then I’d be taking around 4-6 tablets a week, or between $468 and $624 a year.

My illness already costs me enough in Doctor and Specialist visits and all the other medication I have to take.

So I hold off on taking them until the pain is so great, and has been with me so long that I cannot stand it anymore.

I know that many people with ME/CFS and Fibromyalgia experience these same headaches, which I take some weird comfort in. So thank you, but I hope your headaches leave you for good.

And now the time has come. I cannot stand this any longer so I am going to crack open the piggy bank and take some drugs.

I really hope they work! They do most of the time, but sometimes…well, I better not think about that.

My fellow sufferers of broken sleep and agonising pain, may your headaches be mild and your painkillers cheap!

Amen.

I was King of the world… temporarily

So, I’ve been on a new drug for several weeks and yesterday (it’s just after midnight) morning I woke up feeling a bit better.

Sure, my hands and feet were still in a lot of pain (7/10) and when I tried to read I kept falling asleep and hallucinating while reading. Oh, plus my terrible itching from just below the knees down and a headache that was trying hard to become a migraine, and my skin (yes everywhere, all over my body) was still very sensitive and in some pain and all my joints are incredibly sore… but apart from that not bad at all.

Possibly the best I’d felt in a couple of years.

So what did I do? I overdid it of course, as we all do.

Hey look I can walk 30m with just a stick and don’t need my wheelchair!

So I ended up walking just over 700 steps when I’ve been under my 500 limit for ages.

Oh, and it felt good!

Until I woke up just before midnight (twenty minutes ago) with excruciating pain in my knees. And yes the itching, hand and foot pain are all still there and have been joined by neck and back pain.

And insomnia.

Why do we do this to ourselves? Because for two years I had pain all over my body, head to toe, and today (well, technically yesterday) my middle felt reasonable. Not in a ‘let’s go dancing’ reasonable but in a ‘hey, my pain is not as bad in places’ type reasonable.

And now I am paying for it. Just 200 steps over my self-imposed limit (try walking just 700 steps in a day and you will realise how pathetic my 500 steps are) and my knees are on fire.

So did I learn my lesson and will I take it easy next time I have a ‘good’ day??

Of course not!

Centrelink – epic fail!!

Centrelink is there for the needy, sick and disadvantaged, and yet provides the worst service of any government agency.

The top level of management needs to be sacked immediately, along with their middle management that publish outrageously incorrect phone answering statistics.

Then, and I know this will cost us, but there needs to be a Royal Commission into the whole Department and the policies currently in place. It could easily be a case of the right people being tied up by stupid beaurocracy. Until such a public, complete investigation is done those most in need of help in our society will continue to be treated with disdain.

We should all be ashamed (especially the policy makers who make it so difficult for Centrelink staff to do their job) for treating our people so badly.

Fibromyalgia – complete body pain

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

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

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

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

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

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

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

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

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

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

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

I wish you luck, as I do your patients.