Forget M.E. Not
Alison Hunter - September 1993
Somewhere in the recesses of my mind there is a memory of being active, of having the energy to be active...when sprinting across the street was a reflex action and a good day was a day in the surf followed then by dinner at a new restaurant followed by a movie.
There was a time when my body parts just existed...now, they ache as if to remind me of their presence. "Yeah boys, how you doin', still there, GREAT." An average day now consists of showering (with a seat), getting dressed, and perhaps a few hours of study interspersed with hours on the horizontal.
The fatigue is not everyday tiredness, experienced after an energetic day's gardening. It is an exhaustion of body and mind so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat or breathe. Arms and legs turn to lead; they sink through the mattress to eternity...there is often pain throughout the body which can be constant and localised (for e.g. continual severe headache) or migratory...calf muscles one day, finger joints the next. Then there is nausea, diarrhoea, ringing in the ears...
Aside from the physical problems there are the cognitive symptoms (the memory loss, the lack of concentration) alongside the neurological: the dizziness and sensitivities to extremes of temperature, light and noise.
Doctors have at last pinpointed the mechanism by which such signs occur–lack of bloodflow to certain areas of the brain. Little comfort when at the age of 18, one finds oneself unable to remember one's home address, misspelling or mispronouncing basic words or walking into a room with no recollection of why or how.
"How are you?" is a question I'm asked all the time; every day almost by friends, family. Most people don't really want to know; it's a form of etiquette, and usually a customary "Okay" or "Not too bad" fits the bill. "Not too good", on the other hand, or (heaven forbid) "Quite unwell" is met with a look that says, "Whaddaya mean?!" I have breached the unwritten code of greeting...awkward silence ensues. Admittedly, many don't even listen to the reply: "How are you?" "Not feeling at all well." "That's great, did you see the movie on Channel Nine last night?"
A big problem is that aside from pallor I generally look healthy enough...a problem, because one loses credibility when one doesn't conform to the 'sick stereotype'–supposedly thin, frail and slow mo–and are predisposed to comments like "How can YOU be sick, you don't look at all sick?"
With a disease lacking a diagnostic test everyone's an expert...everybody knows someone's niece or cousin twice removed who went to see Dr So-and-so and now she's climbing mountains. Each new regime might be 'the One' to set things moving in the right direction. They stretch from the sublime to the ridiculous but you must try them all lest "don't you ever want to recover?" These treatments aren't always benign, leaving you worse off than when you started, not to mention emotionally and financially.
Seven years down the track there's nothing I haven't tried: Chinese herbs, positive thinking, acupuncture, positive thinking, dietary manipulation, positive thinking, aromatherapy, positive thinking, electromagnetic therapy, all the while thinking positive because, "With a positive attitude you're almost there." Well, thinking negative certainly doesn't help, but remarks such as "Chin up", "Look on the bright side", "There are many people worse off than you" only serve to alienate. Surely for a person to be cheerful all the time given the pain level, lifestyle restrictions etc would be a cause for concern.
Should these treatments fail it is invariably because you didn't have the right attitude, because "Mrs Jones tried it and hasn't looked back", a mentality accurately summed up as 'wellness macho'.
We present a challenge to doctors...if they know us well they believe we are ill but are at a loss as to how to help...most patients aren't so lucky and are labelled neurotic, school phobic, anorexic, menopausal, hypochondriacal, and are handed a referral to see friendly Mr – to have a little chat about why we need to be sick. This is extremely damaging.
However even the most understanding doctor becomes frustrated when tests repeatedly come back 'normal'. They cannot give us a pill to make it (and us) go away, and worsening health drives us back again and again in desperation to ask, "Doctor, can't you do something??"
Rarely will they say, "I don't know what is wrong with you", which they see as incompetence, when in fact the patient already realises this, and is far preferable to yet another blame-the-patient technique.
For pain, other than strong medication, distraction therapy wards off insanity in desperate moments, be it gentle massage, an engaging comedy, company, laughter...distraction as a form of pain relief has been known from centuries such as this quite probably effective (if outmoded) example found in the Oxford Concise Medical Dictionary: "A seton is a skein of cotton or the like passed below skin and left with ends protruding to maintain an artificial issue as a counter irritant."
Having missed altogether four years of schooling I may not have received a formal education, nevertheless I have learnt many invaluable 'life lessons' I don't believe are to be found between classroom walls, for example tolerance, empathy and open-mindedness. I don't hold much with the enriched sufferer theories however: "Great, I've suffered unrelenting pain for seven years, but I'm gonna be a better citizen."
Books, newspapers, radio and some television programs...these have been my umbilical cord to outside life, a world I often don't feel a part of. I have reached the conclusion that should be a number one priority although it is generally taken for granted, even by me; in the rare instances I catch a glimpse of it, feel the energy in my fuel tank, I am like a compulsive spender, spending the last drop plus more until I am back in bed. In my world you pay for your fun. Sometimes it is worth it–often it isn't; we have no problem with motivation; quite the opposite, we are our own worst enemies.
My family have been wonderful, after all an illness like this impacts upon every member...Mum's had to give up work temporarily, no more spontaneous family holidays, siblings take a back seat.
It's hard being a teenager, trying to assert your individuality while so forcibly dependant on people for practical care. Of prime importance to adolescents is the need to feel accepted, normal, "one of the pack". This is impossible to achieve when you mysteriously disappear every day after recess, receive extensions on assignments and have to decline invitations to most parties, sporting activities etc.
I am lucky to have a few "healthy" friends who are supportive and as understanding as they can be, who visit when I am bedbound and no longer ask if I'd like to go on interstate hikes. I also have strong friendships with adolescents with the same illness–we can provide mutual support & encouragement...most of all we can 'Lounge Lizard' together.
When you are chronically ill, you tend to lose your identity to the illness; it defines who you are and what you are capable of...particularly in other people's perceptions. Sometimes I'm tempted to yell, "What about me the person?" I have thoughts and feelings aside from those associated with the illness, if not the opportunity, nor indeed the energy, to express them. All the normal adolescent turmoil is experienced, perhaps magnified and without resolution, for how do we assert our individuality if not through experiencing life and interacting with a wide variety of human beings...certainly not lying in bed, doing the rounds of specialists once again, just in case, just to make sure they didn't miss something "fixable".
For years I was going to be "all better next week". Now I know better, I know the statistics and am aware that I have moved into the so-called chronic stage with little chance of spontaneous remission. A cure may be just around the corner but I have to face the fact that I may be sick for a long time yet.
It's not AIDS, although it's similar, you can feel equally as ill only it doesn't kill you. Not cancer either. I'm not dying or anything drastic like that. It's M.E. Don't forget M.E.
Alison Hunter Memorial Foundation
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