Despair! I haven't blogged for days because I am ashamed to admit my feelings at this point in time.
Up until recently, I have been surprised at my acceptance at having a terminal illness. I have been kind and considerate of other people's time, energy, and willingness. I have been patient until people can work me in. I have waxed eloquent when speaking publicly, citing how God has my back and holds me in the palm of His hand. But lately, I resemble something akin to Godzilla. I am frustrated when someone promises to do something for me and "forgets" to pick me up or changes their plans late in the game, not allowing me time to make new arrangements. When I was able-bodied, it was no big deal but today it means I don't get to eat, I run out of water, have to walk around in bedclothes, soil myself, or go without therapies that are critical to maintain what muscle mass I have left.
My husband works the graveyard shift for a sheet metal outfit, currently working on a remodel ten grueling hours a day. We are thankful he has the work but he is torn between responsibilities. Between my hard-earned disability check and his hard-earned paycheck, we have been able to maintain our health insurance, pay the bills, pay a part-time caregiver, and keep up on the flow of medical bills thus far. I am grateful to see the money hemorrhage staunched for the moment. However, his humor has evaporated, love has morphed into bitter resentment, and he is kind and adorable to everyone except me.
When I get stood-up, I dissolve into hot, pathetic tears. The hyper-emotionalism that comes with ALS kicks in and my mouth opens wide and my agony pours out, not to be denied. I imagine I could outdo a 2-year old in sheer unadulterated tantrum. Of this, I am not proud. It just is. I pray that people think twice before offering to help. It is devastating to those of us who are left holding the bag. It is just not nice nor thoughtful.
Up until recently, I have been surprised at my acceptance at having a terminal illness. I have been kind and considerate of other people's time, energy, and willingness. I have been patient until people can work me in. I have waxed eloquent when speaking publicly, citing how God has my back and holds me in the palm of His hand. But lately, I resemble something akin to Godzilla. I am frustrated when someone promises to do something for me and "forgets" to pick me up or changes their plans late in the game, not allowing me time to make new arrangements. When I was able-bodied, it was no big deal but today it means I don't get to eat, I run out of water, have to walk around in bedclothes, soil myself, or go without therapies that are critical to maintain what muscle mass I have left.
My husband works the graveyard shift for a sheet metal outfit, currently working on a remodel ten grueling hours a day. We are thankful he has the work but he is torn between responsibilities. Between my hard-earned disability check and his hard-earned paycheck, we have been able to maintain our health insurance, pay the bills, pay a part-time caregiver, and keep up on the flow of medical bills thus far. I am grateful to see the money hemorrhage staunched for the moment. However, his humor has evaporated, love has morphed into bitter resentment, and he is kind and adorable to everyone except me.
When I get stood-up, I dissolve into hot, pathetic tears. The hyper-emotionalism that comes with ALS kicks in and my mouth opens wide and my agony pours out, not to be denied. I imagine I could outdo a 2-year old in sheer unadulterated tantrum. Of this, I am not proud. It just is. I pray that people think twice before offering to help. It is devastating to those of us who are left holding the bag. It is just not nice nor thoughtful.
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