It's so easy to get frustrated when you have ALS. We who are accustomed to doing for ourselves, of having it our way, and doing for others are especially prone to frustration. Whether expressed or not, frustration is a tough emotion as it is akin to anger.I did not think I was angry but I knew I was very frustrated. Had I known I was dealing with anger, I could have employed my secret weapon, the Serenity Prayer. (Oh yeah, I did that.) I could have talked to other people in my predicament. (Oh yeah, I did that, too.) Or I could have spoken to a professional. (Hat trick! )
There is much to be frustrated about from sunrise to sunset. I cannot get myself out of bed, nor can I remove or adjust the face mask on my bipap, neither can I uncurl my own hands when they fist of their own accord. If my extra-sensitive call button is placed out of reach, I am unable to signal for help.When they ask me what I what I want to wear how do they expect me to answer with a mask strapped to my face? And how do I know what has returned from the laundry? Give me choices. Ask me a yes or no question. Help me to conserve my energy. And I have not even got out of bed, yet.
When you get me out of bed each morning, why must I waste precious energy to instruct you to roll me to the right, lifting my arm out of the way, then place my legs over the side and pendulum me to a safe sitting position? Did they not teach that at CNA school? And even if they didn't, I need the same way every day. Moving my legs separate from my body places stress on my body, particularly in my spine. I know that I look sturdy but, believe me, I am not. ALS has atrophied much of the surrounding muscles and my spine could easily snap.
My clothes are put on taking care to protect my painful left shoulder. Tops are placed over my head first, then my left arm, the right to follow. Bottoms go on, but not up until I'm in the standing lift. And let's talk bra. I am cared for by women only when it comes to showering and changing. But many of those women are small-breasted and do not understand the special needs of the large-breasted woman. Before the bra, I need antifungal powder applied below the breasts, taking extreme care to prevent talc from becoming airborne. I have 37% forced vital capacity, my lungs are no match for particulates. I also need deodorant applied. Nothing has changed in that regard, I still perspire. Now, the bra, place below the breasts, making sure they stay in the cups, fasten the bra on the largest setting. It's maddening when an aide puts the armstrap up dumping the breasts out the bottom of the cups, then immediately repeats the error. It would be a great comedy routine but it's a time and energy waste for me. And really, if the hooks are bent straight, they're going to stab and it's going to hurt. Common sense? Apparently not. It's happened more than three times!
I cannot bear to write more... Makes me tired and frustrated.
There is much to be frustrated about from sunrise to sunset. I cannot get myself out of bed, nor can I remove or adjust the face mask on my bipap, neither can I uncurl my own hands when they fist of their own accord. If my extra-sensitive call button is placed out of reach, I am unable to signal for help.When they ask me what I what I want to wear how do they expect me to answer with a mask strapped to my face? And how do I know what has returned from the laundry? Give me choices. Ask me a yes or no question. Help me to conserve my energy. And I have not even got out of bed, yet.
When you get me out of bed each morning, why must I waste precious energy to instruct you to roll me to the right, lifting my arm out of the way, then place my legs over the side and pendulum me to a safe sitting position? Did they not teach that at CNA school? And even if they didn't, I need the same way every day. Moving my legs separate from my body places stress on my body, particularly in my spine. I know that I look sturdy but, believe me, I am not. ALS has atrophied much of the surrounding muscles and my spine could easily snap.
My clothes are put on taking care to protect my painful left shoulder. Tops are placed over my head first, then my left arm, the right to follow. Bottoms go on, but not up until I'm in the standing lift. And let's talk bra. I am cared for by women only when it comes to showering and changing. But many of those women are small-breasted and do not understand the special needs of the large-breasted woman. Before the bra, I need antifungal powder applied below the breasts, taking extreme care to prevent talc from becoming airborne. I have 37% forced vital capacity, my lungs are no match for particulates. I also need deodorant applied. Nothing has changed in that regard, I still perspire. Now, the bra, place below the breasts, making sure they stay in the cups, fasten the bra on the largest setting. It's maddening when an aide puts the armstrap up dumping the breasts out the bottom of the cups, then immediately repeats the error. It would be a great comedy routine but it's a time and energy waste for me. And really, if the hooks are bent straight, they're going to stab and it's going to hurt. Common sense? Apparently not. It's happened more than three times!
I cannot bear to write more... Makes me tired and frustrated.
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