I'm tired. I was tired when I got up this morning. I was tired as I ate my breakfast. I was tired as I went out to get a replacement for the water jug I broke. I was tired when I stopped in the food court of the mall to rest up for a bit. I'm tired now, ready to nap, to sleep.
I'm tired of being tired. I'm tired of the exhaustion. I'm tired of the effort. I'm tired of the work, the weakness, the weariness of it all. I'm tired of dropping things. I'm tired of being unable to pick them up. I'm tired of things getting heavier and heavier as I get weaker and weaker. I'm tired of so many things being out of my reach, beyond my grasp, too far. I'm tired of shaking hands, trembling arms, losing muscles.
I'm tired of illness. I'm tired of every little thing that turns into a crisis or event. I'm tired of living with the ever-present threat of death. I'm tired of all the drugs, catheters, towels and wipes. I'm tired of having to have someone else wash me, clean me, wipe up after me. I'm tired of being sorry, embarrassed, humiliated. I'm tired of bowel issues, urinary issues, breathing issues, eating issues.
I'm tired of the fight. Each day I become less and less able, less and less willing. Each day the top of the mountain seems higher, further away, shrouded in mist, angular. Each day I become increasingly dependent, unable to do the least thing for myself. Each day I have to wake up and face this monster. Each day I have to will myself to live and go forward.
I'm tired of having ALS.
I feel you. This thing is relentless, like an army of billions zombie soldiers laying siege on castle. Healthy people whose muscles work as intended, who don't even think about moving an arm, Rolling over in bed, stretching out or just swallowing the content of a coffee cup can't fully grasp what it means when all these apparently trivial acts of daily life become a difficult, demanding, sometimes even impossible task to fulfill. One, for example, whose nose is itching will scratch it without even giving it a thought... Now PALS have to outwit ALS if they want to kill an itch and don't have usage of their arms anymore.
ReplyDeleteHold on, Richard, even though clouds are gathering at times, there will be holes where the sun will manage to shine through.
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