Yesterday, I was back at the doctor's office. Most people don't understand how many doctors a disabled or chronically ill person has to go to to maintain a generally stable condition.
In the past three weeks, when I have been sick, I have been to a doctor's office no less than 6 times - once to an urgent care facility over a weekend. Yesterday was the wrap-up of my current illness, an explanation of my current blood work, and two new issues that cropped up during this time.
Blood work is also something someone who is well doesn't think much about. Their doctor runs it, and it's normal: the end. With the chronically ill and disabled, blood work is vital. It tells us something about how our body is currently. And our blood work is rarely routine. In fact, if my kidneys are close to normal, that is a win. The closer they are to normal, the happier my doctor is. I have learned that there is a range of abnormal blood work that is normal and nothing to be alarmed about.
I have another friend who is recently disabled, and I asked how he was doing. He said, "I think I can say to you that I am seeing doctor after doctor with no end in sight to get very little information and be exhausted."
I understood immediately. When my illness is in a flare (Another post - What is a flare?), that is what it feels like. When I flare or have problems that crop up suddenly, I am at doctor after doctor's office, sleeping and feeling useless between each one. Every time you go to a doctor, you think,
"This doctor will find some magic cure, magic pill, magic treatment that will bring me out of this state of being to a better one. "
It doesn't happen that way.
Instead, you slowly start feeling better. You do a little more today than yesterday. You take one nap instead of two. You cook dinner instead of a frozen meal. You feel well enough to do work, some small craft project to keep you from feeling like you are useless (Another post: Crafting for Self Esteem.).
The battle that you fight with your body dims from the cacophony of war to the din of a small squeamish. The aches and pain are no longer unbearable and debilitating (Another post: Pain as Experienced by the Disabled and Chronically Ill).
They are merely irritating. The fog in your brain is clear enough for you to think past each moment of your existence into the future and other things unrelated to illness and doctors. You can breathe properly, and your chest is no longer tight and forced. Your body is no longer ridged and difficult to move, live, and breathe in.
And you start moving about in an almost usual way. Feeling better and counting down the days, hours, and minutes until things in your body go haywire again. You live in fear of what you eat and are exposed to, that these things will somehow set off your volatile body, and you will repeat the cycle of doctor after doctor and fatigue after exhaustion.
But you can't worry about that too much because that path is self-fulfilling. You take a freeing breath, remember what it must have felt like to be well, pretend you are entirely whole (Another post: Masking and Imposter Syndrome.), and try to pace yourself. You want to accomplish as much as you can when you feel well without courting another period of debilitating illness.
It is a high wire under bare feet, with the wire digging in and your toes clinching for stability with all your might. Hands straight out as if you are bearing the cross of your illness as you walk. Your entire body engages every muscle as you relax, creating stability for this all-too-common circus act.
You breathe, breathe, and slowly, ever so slowly, put one foot in front of the other, knowing that the fall of a flare is coming with each step and being unable to stop your will to live as well as you cross this death-defying wire.
And in the back of your mind, you know that falling is inevitable. But you walk on anyway. This is chronic illness, disability.
This.
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