ME/CFS

Posted: August 14, 2015 in Chat
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What follows is part of a personal testimony. The original was accepted and used as resource material on the region’s Work Psychology database.

Why, people might ask, is there all this fuss about it?
There is all this fuss because it is
a) unrecognised by medical authorities
b) devastating to live with
c) has no apparent cure. And we are so keyed-into our cures for nearly everything.

1
I would climb out of bed, wash, dress… and by the time got down stairs was so exhausted all I could so was sleep in a chair for about an hour. Then drink, eat, and again too exhausted for anything else. Days, weeks, months went by like this. Eighteen months, before this pattern eased off.

It was just post-operative trauma, I thought, it would pass off if left alone. Things do. It didn’t exhibit itself as an emotional or mental disturbance. It was purely physical.
I’d had a routine operation – only I found my body rejected the stitiches, and the wound became infected. On check-up several months later I was really unwell. The infection was successfully treated (will not go into that, it was not pleasant).
But I just did not seem to be picking up again. We are used to the quick re-establishment of normal health after a successful treatment.

I could not get my energy back. In fact I was losing more and more; a slippy slide to nowhere.
To read a newspaper was exhausting; the degrees of concentration needed just to sit upright, holding the paper, manipulating fingers to turn pages, of holding the arms out; the mental concentration of scanning pages, trying to make sense of articles, of following-through a story-line, and then to remember the background to the story.
All this used up tremendous amounts of energy.

After a while it became impossible to get much from a newspaper, nothing connected or made much sense, paragraphs wouldn’t hold together. Even getting through a sentence of anything other than simple syntax became a struggle.
All these were actions demanding energy. And there didn’t seem to be much of it about.

It was impossible to get an overview of one’s condition.

To walk two hundred yards to the local v

Vets to pick up pet medicine I would arrive panting for breath, utterly drained, covered in cold sweat; and then to sit for a good ten minutes or more before feeling capable of even attempting to tackle the simple interaction of a discussion with the assistant.
Every day was like that – apart from the Vet visit, I hasten to add. There is little to remember of that period, that lasted roughly two years. To vacuum just one room was a major feat; totally exhausting.

Sleeping was difficult: I’d collapse into bed, then wake every hour or so throughout the night; restless when I did sleep. My temperature was all over the place.
To go to the bathroom in the night was to continually walk into things; the furniture, the wall, the door; was to lose one’s way, to literally walk around in circles.

It was like living in a half-world, a half life. The days were blurry, groggy; they consisted of dragging oneself around the house; pottering; doing what one could manage; keeping oneself going; doing things.
I’d go into another room only to stand there, stumped: why did I come in here? Only once or twice I experienced this, I’d go into another room, to turn around, and not even recognise it: where am I? To go into the hall, say, was to forget how to get out again.

I continually stumbled into furniture as my sense of balance teetered; there were, and still are, frequent dizzy spells; nausea, then gluten, and a yeast intolerance. There is also an enhanced sensitivity to noise, light, temperature, sudden movement.

I have an utter loss of sense of direction; and widely varying temperature fluctuations both day and night. Not all the time, but spells of it, and recurring at intervals. And then the pattern would change, different aspects would be affected, and the previous ones less so.

And to ache in every part one’s body, places one did not know could ache. Continual. A general bodily restlessness; to be unable to sit for long; unable to lie for long; to drag oneself around because one could not do anything else.

And to completely lose one’s sense of time, distance, quantity. Even now I quickly lose sense of distance, size, speed; when I remember something seen its size seems all over the place: was it big, that big, or small? How far away was it? When was this?
And the answers are always: I don’t know.

To not be able to articulate a simple thought, to put a sentence together; the words simply disappeared from one’s mind in the process.

To speak to more than one person in a day, was to exhaust oneself for days afterwards.

To be capable of little emotional response to a celebration, an upset, a meeting of friends. The sheer exhaustion of energy-reserves produced by daily life left nothing for a sudden or unexpected demand, or drama.

Indifference to most of the niggles and gnawings of our everyday life comes as a bit of a relief, but leaves the weight of concerns on one’s partner.
– I have been extremely lucky, my wife has been very understanding and supportive. She has also the skills and expertise to earn us both a living as I am going through all this. Her patience and stamina leave me awed.

Over time you become quite an expert economist, in terms of energy-use. The most demanding user of scant energy resources is the brain. And so, to cover vital functions adequately, the thinking and mental functions take the hit, they are the most expendable to the organism. That says a lot.

Some credited person commented recently, that ME scrambles one’s metabolism. Yes, it feels like that, everything feels scrambled, no pattern, no rhythm.

2
After about six years I was able to come up with this image (I was able to expand on the basic idea over about twelve months: levels of concentration and general energy fluctuate so enormously):
on a computer the Windows program is the effect produced by many other programs working concurrently.
On a low-memory system a message would flash up sometimes: You have not sufficient memory to run this, or some such. Shut down other programs… or whatever.

Take Windows for our normal, everyday awareness, I said, and change ‘sufficient memory’ for ‘sufficient energy’ – and you get an idea of the ME effect.
Not that it’s a case of continually running on half power, or a compromised main program where only a few base programs run, but more a case of all the base programs running low at different rates. And those rates continually fluctuating, so there is little or no follow through of information.
And what are those base programs?

They are body-map ones; the body awareness ones: limb position, limb position in relation to the body and at any given time or point or posture; limb position in relation to the environment etc. There is the control of digestion, transit and excretory functions.
The body-conscious programs: the regulation of organs, glands etc. How’s the liver
doing? How are the kidneys?
There is the body clock and its tick through every organ and gland and muscle of the body.

I mentioned the everyday, normal muscle control, needed in such a simple task as reading a newspaper. Compare that with the far more complex operations we continually put ourselves through.
Why is travelling so exhausting? It is because of the millions of little but continual, and compound, muscular and balance adjustments that are required when riding over surfaces.
All these are regulated by the cerebellum and brain-stem sites.
There are also the specialist processors: the hippocampus, hypothalamus, pineal, thyroidal etc.

And then there are the also the mental programmes. Awareness, it seems in the current thinking, is a complex web of interacting mental processes: the Windows analogy, earlier.
There is thinking, and thought-awareness; the abstract thought, and the basic thought processes.
Memory, in some form or other, comes into virtually every one of these processes, both bodily and mental.
And so does the power source: energy.

When the power source is compromised, so is everything else, from probably, basic cell  functions, to the ability to dream.

But let us not get too tied down with the computer analogy.
Like all analogies, lexical and philosophical, they are leaky, and only of varying, approximate, and limited use.

Our normal, everyday also consists of numerous other thought processes that are more or less constantly running; what are termed the ‘higher functions’ of the brain. Those little things we are keeping in mind: to phone home, check on the kids, parents etc. There are also the deeper things we are slowly working our way through: working out the tax return, or some unusually intractable problem at work. There are also the constant attention-grabbers, whether at work, on the street, or some family negotiating etc.

With ME in its earlier stages it appears almost impossible to run even one of these: one exists in a constant fog of semi-awareness; decisions, even simple problem-solving is impossible; nothing makes sense, the thread of memory that ties all the thought-process together cannot be sustained. Luckily, one is not aware of one’s state at the time.

Six years on, and I had managed to get a part time job. The duties were to be there early, and on hand throughout the day, just in case.
I was very, very lucky getting this job. There are not many openings for people whose concentration is fitful, limited, and who tire at the least physical activity.
I had come to some degree of understanding of the state I was in. I had the usual medical tests: 5 vials of blood taken. But it all depends on what it is tested for: the ‘usual’ tests came back with nothing, of course.
At last I felt capable of undertaking the task of applying for a Disability Allowance.

I worked two and half days per week. At a push I could do three. Any more sent me rocketing back to square one, or two.

But I was not eligible for Disability Allowance: I worked over the statutory six hours maximum required.
When I would have been eligible, was when I was least capable of applying for it.

3
It has been postulated that ME has been known over time under many different names, whether as ‘the soldier’s disease’ of the American Civil War; or as ‘atypical poliomyelitis’; as a muscular rheumatism….

In 1681 Thomas Sydenham described an illness with a pattern very similar to our modern illness. It is suspected that Florence Nightingale was a sufferer on her return from the Crimea: all those years housebound, unable to receive visitors….

Various books suggest ME may be – a form of polio, without the muscle wastage
– the after-effects of viral infections: glandular fever etc
– the effects of an, as yet unidentified, stomach virus
– the build up of toxicity in the brain and spine etc
All these are highly plausible, all have many merits, and all are based on sound clinical thinking.

The theories I do have trouble with are the psychological-cause ones.
In the case I have described above in this article I can detect no psychological causes whatsoever. There are plenty of underlying psychological factors which maybe add to the already established energy drain, but the effects of the condition have exhibited themselves in an entirely physical way.

Ok, there are depressions, swinging moods, feelings of hopelessness…. There have been times on the street when I have felt so desperate that ‘not being’, to flick an off-switch for a period, would have been very tempting.
I cannot help but think it would be terribly strange if there were not psychological aspects to this, after all it is such a fundamentally frustrating illness, and the time periods involved in its exhibiting its many and varied effects is more prolonged than some illnesses.

One cannot but wonder whether the prolonged disruption of normal behavioural functioning, of habits, patterns of thought etc, that ME effects, can have prolonged lasting effect on the personality. We know that prolonged hospitalisation, (ruling out MRSA etc) does take a psychological toll on the patient. Whether we will see equivalent behavioural change among the more severely affected ME people still remains to be seen.

Factors in this include the home-background of acceptance, understanding, and the overall attitudinal experience, as well as support care, early recognition and appropriate rest treatment.

There are energy supplements out there, and ones that attempt to target one’s mitochondrial ‘power plants’. I tried those: the first week was great, it felt like normality. Then the second week dropped me two floors down, and I could  not tolerate them. The same old pattern.

What has become apparent through this, and over time, is that there does not seem to be any part of the awareness or one’s faculties unaffected by ME.
I can only conclude from this that we are, alas, only physical beings. That we have no metaphysical element, no ‘spirit’ above these things.
But maybe, just maybe, it is my means of investigation that is at fault; my assessment is probably based on incomplete or corrupted data.
Maybe I cannot yet summon the degree energy for abstract thought, or range of awareness, to allow a proper overall assessment.

What is also apparent is that if we can grasp, visualise, understand, the workings of the physical body, and of the brain, then we are missing most of it. We are mostly self-regulating organic systems that have developed and refined their processes over millennia.

I am tempted to venture that we have hardly begun to understand the complexity of the human body.

I have lost sixteen years to this – that’s what it feels like: lost, irretrievable. It is still going on.
So now I do what I can to rescue what I can of those years, and of the years to come.

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