Friday, February 3, 2012
Management of symptoms = Quantity of life
Imagine those symptoms dragging on... and on... and on... Like that lingering cough after a chest cold that just won't go away. Only instead of just the cough, it's the whole cold dragging on. No amount of willpower will make the symptoms go away. Try to force them back and they push back even harder than before. Get burned often enough and eventually, you learn. Something are just-out-of-bounds now. Oh you may be able to indulge every once in a little while, push past the safety zone a bit. But the costs are high, and that's a reminder that your limits are still there. You count your lucky stars for the things that you still can do.
In a situation like that, it's natural to get frustrated. It's natural to become impatient. It's natural to be fed up. It's natural to want to turn our face to the sky and ask, "Why me?!" It's natural to be frightened of what the future holds. I don't have a feeling of safety in my own body. There's always the thought that things are going to change, and not for better. It's happened before, it can happen again. Flares erupt. Bad days are bed days. It's natural to feel at the mercy of invisible, mysterious forces.
It's natural to not want to be alone. I don't trust my body to function. I don't trust my ability to take care of myself. Why? Because I have had things happen to me that were bad enough that I vowed, "Never again." I've been too close to the edge---where if I hadn't've been lucky, I could easily have been dead. It's just safer having someone else around in case of emergencies. In those times another person is a lifeline. In quiet times, at the very least they brings peace of mind.
But what I dream of, when I dare to dream, is a world in which I can manage my symptoms in private and just get on with my life. After that, all other things would be possible: a self-supporting income, expressing myself artistically, participating in life again. A world where I can take care of myself and regain my adult dignity. A world in which I can build towards my future. A world where I can contribute more than just words to my brothers and sisters out there. They're good words, but I know I'm capable of more. This isn't just a world where I have a better quality of life. I'm talking about a world where I have more hours of the day where I am useful---a greater quantity of life.