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Copyright © by Jodi Bassett, May 2006
This version updated September 2007
I wrote Fatigue Schmatigue some time ago now, and I’ve had a really positive response to it which is great. I have noticed however, that what some people are replacing ‘fatigue’ with the word ‘energy.’ People with Myalgic Encephalomyelitis (M.E.) who wouldn’t dream of using the ‘f’ word will instead say things like ‘I hope I’ll have enough energy to do that’ or ‘some people with M.E. use so much of their precious energy on activism’ etc.
But using the term ‘energy’ has all the exact same problems as the word fatigue! The term makes us sound tired or depressed instead of ill and also gives those around us a very misleading idea about what it feels like to actually have M.E. and about what M.E. is. It also damages us politically. This is why I have put together this short informal follow-up piece to discuss the concept of ‘energy’ in a bit more detail.
My own experience… For me, my ‘energy’ levels are just utterly irrelevant to how much activism work or anything else I do. My orthostatic and other heart problems, neurological and cognitive deficits, paralytic muscle weakness (and also a wide and varying amount of other symptoms) always kick in and stop me doing things way before my ‘energy’ ever runs out and I feel ‘fatigued.’ The reason I spend only a half hour or hour on the computer at a time is because; my cognitive problems have worsened to the extent I can no longer read or write, I feel immense pressure on my chest and my heart is beating all wrong, my eyes burn, my back and neck are in spasm and my arm muscles are becoming unresponsive and painful, I feel like I’ve been poisoned and like there is battery acid running in my veins instead of blood and/or it feels like I am having some sort of seizure. My level of disability is just not about my energy levels at all; it is about specific cardiac, neurological and other symptoms. It is about being very ill, not very ‘tired.’
Amongst M.E. sufferers and the vast amount we all have in common, there is also of course some variability in which features and symptoms of the illness are dominant in each person. For one person it might be the cognitive problems, in another the paralytic muscle weakness and metabolic problems, in another person it might be the severe pain. But even accounting for this difference in severity and the variability in symptom expression, I still just plain disagree that talking about ‘low energy’ cuts it when you are describing the devastating and utterly disabling symptom complex of M.E.
It just minimises the intense suffering caused by M.E., and makes it sound so much more mild and innocuous than it is… It makes it sound as if the only payback we have to worry about from overdoing it is tiredness, when the reality is so very different and so much more severe.
What having no energy (or being exhausted) really feels like… Before we were all unlucky enough to get M.E. we had felt low on energy before and are all familiar with the sensation. Do you remember how it really felt to have no energy left at the end of a long and productive – or really fun – day? Does how you feel now, with M.E., really feel the same as that? Did being worn out and having no energy when you were healthy, hurt in the same way as having a severe M.E. relapse does? Did it make you feel so severely ill that you felt like you might actually die from it like sometimes happens when you have M.E.? Are the sensations of having ‘no energy’ and of having M.E. in any way similar? Of course they aren’t!
What having M.E. feels like… In my Symptom List I describe M.E. symptomatology as being a combination of:
Profound cognitive dysfunctions (and various other neurological disturbances), muscle weakness (or paralysis), burning eye pain or burning skin, subnormal temperature or low-grade fever, sore throat or painful lymph nodes (and/or other signs of inappropriate immune system activation), faintness, weakness or vertigo, loss of co-ordination, dyspnea, an explosion of sensory phenomena (low level seizure activity), cardiac and/or blood pressure disturbances, facial pallor and/or a slack facial expression, widespread severe pain, nausea or feeling as if ‘poisoned,’ feeling cold and shivering one minute and hot and sweating the next, anxiety or even terror (as an organic part of the attack itself rather than as a reaction to it) and hypoglycaemia. There may also be an accompanying exacerbation of many other symptoms. These symptoms often combine to create an indescribable and overwhelming experience of terrible illness that is unique to M.E, and can be profoundly incapacitating. At its most severe, the patient feels as if they are about to die. Each of the symptoms caused or exacerbated by overexertion can be clearly articulated without difficulty. It makes no scientific or logical sense to subsume these very specific symptoms, and very specific and varied combinations of symptoms, under a vague and inaccurate label of mere ‘fatigue.’ To say that all of these very different and very specific – and in some cases very serious – symptoms can be accurately summarised as being a problem of mere ‘fatigue,’ ‘malaise’ or ‘exhaustion’ or ‘having no energy’ is absurd.
Tiredness/fatigue/having no energy/exhaustion are all normal physiological responses and normal recovery states from exertion which occur in healthy people and are a normal part of life for everyone. M.E. in contrast is a distinct disease state that can severely disable or even kill you. The two problems are quite clearly apples and oranges, chalk and cheese – entirely different in every way.
But if we need rest doesn’t that mean we must be tired or have no energy?… No, it doesn’t. Just because there is a need for rest this does not mean that the problem is energy related; the two are not always linked. Rest is also necessary when there is an injury to the body (such as a broken leg) and rest is necessary for healing (and to prevent further damage) or when bodily processes are dysfunctional through illness and the body cannot cope with a normal workload. M.E. expert Dr Byron Hyde explained recently that when M.E. patients muscles and brains (and organs) stop working so suddenly and leave us incapacitated and forced to rest and/or with greatly reduced quality of function part of what is happening is that the cells are actually shutting down to prevent cell death. Considering this, do you think that what healthy people feel when they say they ‘have no energy’ is even remotely the same as what people with M.E. feel when they use the same phrase? Of course not!
Does having clinical depression feel the same as having M.E.?… Along with the symptom of fatigue, a feeling of having ‘absolutely no energy’ is listed as being one of the most common and most disabling symptoms of clinical depression. Considering the myriad of serious physical problems that we know are causing the symptoms and illness in people with M.E. (ALL of which are NOT present in people with depression) do you think that what depressed people feel when they say they ‘have no energy’ is even remotely the same as what people with M.E. feel when they use the same phrase? Of course not!
When people with M.E. say they have ‘low energy’… I think this is because there is just no word invested yet that truly describes everything that makes up the symptomatology of M.E. But the thing is, there NEVER will be! (Overexertion causing a worsening of all symptoms and of the severity of the illness generally.) But what we do know is that ‘tired’ is the wrong word. ‘Fatigue’ just means very tired and is also the wrong word. The term ‘energy’ is very similar to both these words and is not accurate either and ‘exhaustion’ just means really, really tired. All of these terms describe a normal state of recovery after exertion in healthy people. People with M.E. are not healthy, their symptoms are not a normal state of recovery the symptoms of M.E. also occur even after (and during) extensive complete rest. This might seem trivial to some of you, but I think that those of us who are well enough to educate ourselves about the correct and non-propagandising terminology should do so and that this is an important part of M.E. advocacy.
The bottom line is…. There are a group of extremely powerful vested interest psychiatrists (and others) who for financial and political gain pretend to the world that M.E. could be a psychological or behavioural illness and that in reality people with M.E. are physically healthy. These people have caused so much suffering, abuse and neglect for so many people with M.E. and have been responsible for thousands of deaths from M.E. Why would we want to make their job so much easier for them and play right into their hands by describing our utterly devastating symptoms in the exact same terms as those used by healthy people and depressed people?
So there isn’t one word which describes M.E. symptoms. Big deal. There never will be! Is it so hard to just tell people you are ILL instead of ‘tired’ or ‘have no energy’ or are merely ‘exhausted’ and then to list some individual symptoms if they ask for more information?
After a little bit of practice, the answer has to be ‘hell no!’ and ‘why on earth wouldn’t you?’
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