Posted by Laurence on July 04, 1998 at 20:26:31:
As a number of interesting thoughts, theories and opinions have emerged on the message board over the last few days and weeks, I thought I might just throw in for comment some of my own untrained and unscientific views.
Most of us find the reference to our illness as some aberrant form of headache to be at best unhelpful and at worst, completely misleading to the general public and to most of the medical profession as well. As people and doctors around us only think we have “headaches”, even if a little bad at times, they react to us accordingly. It is not the fault of the public. That is what the doctors have chosen to call our illness. You will all know the saying “Give a dog a bad name”, so it should perhaps come as no surprise if we have difficulty raising public awareness. Only we and our nearest and dearest know what this illness is all about.
Why do I think that we don’t suffer from a headache? I believe (speculate if you prefer) part of the answer may lie in the shadow cluster most of us seem to comment on. For me, while the illness runs through its cycle, I have a shadow almost all of the time. When the illness is at its height, the shadow may lift for only a brief moment or two during the day. As the cycle runs its course, the shadow begins to lift for a bit more each day. There may be the occasional setback. But I am always completely aware of when it has lifted. My head feels unmistakably clear.
The shadow is a continuing sensation in my head (right side for me) at the front, middle or towards the back of the head - sometimes in only one spot sometimes more than one. The right eye, right-side forehead, right nostril or right cheekbone also feature. The sensation varies from just tingling to mild pain. The more areas affected by the shadow the more likely the sensations are to be classified, by me, as pain.
An attack, or “headache”, is simply when the illness is showing its maximum effect in my brain. The “headache” varies in intensity and duration from mild to devastating. The longer and the more intense the “headache” the longer it takes my brain to recover from it. My whole body is assaulted when the pain is too bad for me to remain standing.
Surely no one in their right mind would say someone suffered from a “headache” which lasted weeks or months. For those who have the misfortune to suffer most with a chronic condition, how could it possibly be said that they are suffering a “headache” which lasts for years.
I think that what we have is quite simply an illness, condition or disease. Some of us are “lucky” because our illness only flares up every now and again for a few weeks or months. Others have to live with this debilitating illness for many years. It is not, repeat not, a headache.
Sorry no jokes tonight. I am feeling a bit cranky having just had to hit the oxygen for 15 minutes to relieve the worst symptoms of a flaming illness.
Hell, what a relief the sun goes slower round the world than it will take this message to hit the message board. Happy 4th of July to all you folks over there.
Bye,
Laurence