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Of all the things I’ve lost, I miss my mind the most – ME Awareness Day, Monday May 12th

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ME Awareness Day – Monday May 12th – Allan Alach’s personal journey

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ME (Myalgic Encephalopathy, also known as Chronic Fatigue Syndrome – abbreviated to CFS) snuck up on me in mid 2011, and gradually wore me down. It took six months for me to realise that something was badly wrong. On the other hand, ME/CFS  can also hit sufferers like the proverbial truck, which brings a much more precipitous change in people’s lives. The triggers for the onset of ME are unknown, although there seems to be an indication that it may follow an unrelated viral infection, and that high levels of stress may also be a factor, very probably in my case.

At this time I was putting everything I had into the battle to prevent the government introducing national standards into primary education. Probably not the wisest thing for a school principal to do, even if I did my activism from home in the evenings. However there comes a time when one has to fight for beliefs, regardless of the consequences, even if it did put me very offside with the powers that be. The stress was intense, and this increased as months passed, leading up to the 2011 election — by then I was running on adrenaline and willpower. Torrid times.

By the end of 2011, I’d hit the wall and didn’t know what was wrong with me. I was just so unwell and lacking in energy. The most confusing part was that my brain had given up — I couldn’t concentrate, think, read, write, make decisions, plan my day and so on.  Nothing was working the way I needed it to work and that meant that I had to dig really deep to drive myself to perform the myriad of tasks that land on a principal’s desk. Unknowingly I was driving myself into to an increasingly deeper stage of unwellness. While I didn’t understand what was wrong with me, there was something different about my ill health which led me to the conclusion that, “I just can’t do this anymore.”

I figured that I’d just burned out and that after I had a good break I’d be able to start on another education related career – I had plenty of ideas and was looking forward to the challenge, but it wasn’t to be.  The moment I let go, everything collapsed like the proverbial house of cards — my physical energies, my mental energies, my ability to concentrate, my ability to think write and read, talking to friends and family, playing with grand children, going out for coffee/dinner, walking, driving the car, working around the house, my hobby of radio controlled aircraft (try landing a model aircraft when your brain doesn’t work), and on top of all that, just feeling so unwell nearly all of the time.

As time passed, I didn’t improve as I’d hoped, in fact I got worse, to the point where a 100 metre walk was an ordeal, and there were days when I was almost bed bound. It wasn’t until my brother took me to a doctor in Nelson, who had expertise in diagnosing ME/CFS, that I realised what was ailing me.

That was April 2012; here I am in May 2014, and not much has changed. I have better days and worse days; there is no pattern. The last few months have been a downer (hence my absence from writing for the Daily Blog) and I’ve been pretty much stuck in my lazy boy chair watching TV or YouTube. I can’t read very much (other than skim reading) and I’ve really struggled to write this article. I will pay the price for the energy I’ve expended, most likely on Tuesday, as there seems to be a 48 hour lag between overdoing it and crashing.

Imagine having a continual case of the flu (without the coughing and fever), especially the deadening physical lethargy and muscular pain, and you’ll have some idea. Except that it doesn’t go away and analgesics don’t help a great deal. Waking every morning is a real lucky dip — some days I feel OK (but never well), while on other days I feel like I’ve really overdone it in the gym the day before, except that I hadn’t done anything except sit in a chair all day.

So what is ME/CFS?

ME is the abbreviation for Myalgic Encephalopathy, also known as Chronic Fatigue Syndrome (CFS), Royal Free Disease (England), Chronic Fatigue Immune Disorder, Post Viral Fatigue Syndrome,  Tapanui flu (in New Zealand), and Yuppie flu, with Fibromyalgia being a related condition.

ME/CFS  is understood to result from changes to the immune system in response to an initial infection. Sufferers can be bed-ridden for weeks or months with typical flu-like symptoms such as fever, sore throat, swollen glands, muscle and joint pains. They also suffer mental sluggishness (brain fog)  sleep disturbance and extreme fatigue. Symptoms come and go over a period of time, and even between relapses the person may still feel very tired and unwell.

“Normal fatigue is when you’ve just run five miles and you’re tired and you take a nap and the fatigue is gone. But I have days where I’m lying on the couch for hours and I literally can’t move, like I just had major surgery. Like the mitochondria in the cells of my muscles and brain have just stopped producing energy.”

While the USA tends to use the innocuous and somewhat demeaning label ‘chronic fatigue syndrome,’ the World Health Organisation’s descriptor is Myalgic Encephalopathy – myalgic to describe the physical/muscular affects, and encephalopathy to describe neurological affects.

“M.E. is a physical illness of uncertain duration that is defined by the World Health Organisation (G93.3) as neurological. There are a wide range of symptoms that affect many body systems, typically the nervous and immune systems. Common symptoms include severe fatigue associated with post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’), chronic pain, sleep difficulties, cognitive problems (including what is commonly called ‘brain fog’) and hypersensitivity to light, smell or sound.”

The issue with using ‘chronic fatigue syndrome’ is that it is possible to be chronically fatigued, due to a range of causes, and to make a full recovery.  ME is a separate beast altogether. While people can recover to a greater or lesser degree, it is disputable that anyone can completely regain 100% fitness and health. Stories about people making a full recovery from chronic fatigue usually means that they never had ME/CFS illness in the first place.

The cause of ME/CFS is as yet unknown, although there are numerous hypotheses. It’s generally agreed that it is an auto-immune disorder that affects the body’s abilities to produce energy at a cellular level. Is there an infective agent? A virus? While there is some evidence to suggest this may be the case, the jury is still out. Until relatively recently there has been very little research into ME/CFS, due to a perception in the medical community that this is a psychological condition — more later on this. However this has now changed and there are many researchers investigating this illness.

However,  at this time, there is no known cause, and no cure, not even any treatment that can relieve or mask ME/CFS’s effects on the body.

It’s vital that everyone is aware that this is a very nasty illness. While it’s not an overtly life threatening condition, it is debilitating in the extreme:

“A ME/CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS. If I had to choose between the two illnesses I would rather have H.I.V.” Dr Nancy Klimas, ME/CFS and AIDS expert.

One of the biggest frustrations expressed by people with ME/CFS is that family, friends, the media and even doctors often don’t believe their illness is real, or fail to understand just how debilitating it is. Being told ‘You’re looking well’ is a real slap in the face, because the reality is that the inside is rotten. Even worse is a GP who suggested that a trip/change of scenery may help me get better, like this is all in my head!

This leads to a long standing issue — for many years, ME/CFS has been treated by the medical profession as a psychological condition, rather than an actual illness. In part, this was/is due to the fact that there is no test that can be given to diagnose it.  As with many other syndromes, ME/CFS is diagnosed by eliminating other possible conditions and by matching symptoms against a checklist. The moment a definitive test is developed, the easier life will be for sufferers when they seek medical assistance.

The lack of any test has caused many injustices, including a case in Denmark where a young female ME sufferer was compulsorily admitted to a psychiatric hospital to be ‘treated’ for her illness. I read somewhere that the most important thing for anyone with ME/CFS was to keep away from psychiatrists and the story from Denmark sure illustrates that. I wish this was in my head because then I could deal with it and get better. It’s not.

What does the future hold for me?

That is an unknown. Most sufferers improve over time, five to ten years or so. Full recovery is very rare, but I can hope for enough improvement that I can lead some kind of ‘normal’ life. The risk of a relapse will always be there, especially if I overdo things. The 50% rule applies — only do 50% of what I feel I can do and stop before I feel tired. On the rare ‘good’ day, that’s a hard rule to follow, as it is so tempting to make the most of the bonus. Inevitably this is followed by a crash, a process known as ‘boom and bust.’

It would be really nice to be well enough to actually do active things with my grandchildren — at the moment they see me as a blob stuck in a chair.

And I’d like my brain back in working order:

“Of all the things I’ve lost, I miss my mind the most.” (Mark Twain.

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5 Comments

  1. Z says:

    Hello Allan,
    Great, informative article. I am sorry to read of your struggles though. I was originally diagnosed with ME. I ignored the diagnosis and carried on, because of the general attitude I was met with (that M.E was a ‘rubbish’ diagnosis). 2 or 3 years later I became much more unwell suddenly, and after much time in hospital it was found I have severe dysautonomia. Knowing what I know now, I do not think anybody should be diagnosed with ME/CFS without also having autonomic testing done. A tilt table test etc. I do hope you and anybody else diagnosed with CFS/ME has had this testing done. If autonomic dysfunction is found this opens the door to other treatment/medications that could be genuinely helpful. I am on a medication now to try help the dysautonomia symptoms, and though it has not cured me (unfortunately, I got terribly sick before any interventions) it has helped stabilise me. There are other medications people can take which have not worked in my case, but are ‘life savers’ for others. Just something to consider – I feel I need to let people know, as looking back, if I had taken some medications to help prior to becoming so ill, I might not have landed in this state where I am thought to be permanently disabled and rather dependent. Dysautonomia is generally also taken more seriously by doctors, I’ve found. All the best for the future, and thank you for spreading the word about ME/CFS!

  2. Dianne_Khan says:

    Thanks for sharing that, Allan, and I hope your good days become more frequent over time. I sympathise, and think you are rather amazing for managing what you do given how you feel, so kudos on that.

    As to wishing it were in your head, from someone whose ailments live mostly there, I can promise you that’s a different beast but no better. Best to wish for good health full stop.

    Best regards and a whole heap of respect to you, Dianne

    • Allan Alach says:

      Thanks Dianne for your kind words. I guess I need to add that while I wish things were different, I’m content to make the most of the limited cards I hold. My intent in writing this article was to raise awareness about this illness, because for many people, they will either already know, or will know in the future, someone afflicted with ME/CFS. Or, even worse, someone who read this may find themselves in the same situation in the future, and at least they may be quicker to realise what’s happened to them. There’s also the need to ensure the medical profession are more sympathetic than seems to be the case at the moment.

      Oh by the way, my prediction that I’d probably pay the price on Tuesday was 100% correct…..

  3. YogiBare says:

    Sorry to hear about your illness, best wishes for at least making a partial recovery.
    Thanks for making a real effort to write this informative article; I remember reading about Howard Bloom having severe CFS, and he went on to write many interesting books, so perhaps there’s light at the end of the tunnel.

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