6th April, 2000
It's right on the tip of my tongue... You know the feeling... You're talking away to someone and suddenly your brain runs slap bang into a brick wall. You're about to say something and it's just not there. You say, "Oh, you know... what's its name? You know!" And it becomes painfully obvious that they don't know, despite your urgings, and that you've completely forgotten. As you try to remember an old familiar feeling develops... it's right there... if you just think a bit harder... you'll have it in a second... It remains stubbornly right where it is - on the tip of your tongue. Tantalisingly close... but unattainable. Eventually, politeness dictates that you give up the struggle and you grudgingly continue with the conversation, minus the elusive word/name/number. If your friends are kind they might reassure you that it will come to you later, or you might have to resort to silently reminding yourself of this fact for the next twenty minutes or so, until your obsessive brain lets go of the idea of consciously remembering the detail, and trusts it to subconscious processes, possibly in the middle of the night sometime. Have I painted the picture clearly enough for you? Are you with me? Now for my main point. Imagine living on the edge of insanity like this every day. Have you got it... can you recall that infuriating frustration? You know it's just there... you can feel it... but you can't quite get it to show itself. And this time it doesn't go away. The feeling stays with you... always. Like you have to with the conversation, you move on - but it's just not the same. Something is missing and there's no denying that it shows. Miss out too many pieces of a puzzle and it ceases to be recognisable. There - you've had your first taste of life with ME (Myalgic Encephalomyelitis... or CFS - Chronic Fatigue Syndrome). Cognitive Dysfunction is a common symptom of ME, but it is poorly understood. Some brain functions are seriously impaired, whilst others, seemingly connected, are unaffected. This is very confusing and leads to misunderstanding. Most people I know pay lip service to acknowledging that I have a seriously debilitating chronic illness, but deep down I suspect that they think I am not as sick as I 'believe' I am. They talk to me. I seem cheerful, energetic (while I'm seated) and articulate. I certainly don't look sick. So why am I spending my days 'existing', doing minor housework tasks only when I have enough energy, unable to concentrate well enough to drive, to cook, to live normally? A lot of people, many doctors included, have come to the conclusion that there must be a psychological basis in ME. I've wondered myself, many times. Surely I can just try a bit harder and get over this invisible barrier between me and normal life. There's a lot I could say about all this - in fact I could write a book. Maybe even two books. Today I want to stick with the theme. Living life is on the tip of my tongue... it's just there. I want to grab it with both hands and wrench it out of the grasp of the ME monster... but he won't let go. I can bide my time. His day is coming. Meanwhile I can be patient knowing that I am making the most of every day, doing what I can do and not dwelling on what I can't do. If I could just think what
it was I should be doing....
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