Had an "episode" today. I'm telling you, not to brag, but to be brutally honest. I am not proud of it. By episode, I mean a lapse in polite socially-acceptable behavior, an emotional outburst. I will explain how it came about (for myself as much as for you).
I was at the end of eating my lunch when I choked. It happens. Just part of the disease process of ALS As muscles fail. What began to ramp up my emotions was my thoughts that I wasn't getting the help I needed. My power wheelchair had cycled off leaving me powerless to tilt forward to clear my airway (my PCT was not aware of my technique) so I coughed away expending energy. As a result, I was coughing up secretions and needed the suction machine which had NOT been set up.
The aide immediately set about putting the components together but the going was slow and I kept coughing away. Without the suction machine working, I was thinking "Oh God, this is just like the last home I was in, paying lip service to the ability to care for me and operate the cough assist and suction machines. I'm going to die sooner than later." (Those thoughts really piss me off! The idea that I could die because somebody neglected to set up my equipment properly!)
Next, a nurse comes to assist and while they struggle with the equipment, I let them know that I also need the cough assist. They seem surprised. I'm even more irritated. The machines are ready and the nurse takes over. He knows me less the aide and calmly discusses how to use the cough assist to the PCT who is not allowed to use the machine anyway. I'm thinking they are not taking my situation seriously and I'm incensed. I run my power wheelchair into my bed and jam it to the wall. (why ask why? I don't know. Poor impulse control? Frontotemporal disease? PseudoBulbar Affect? Weak moral character? I know not.)
I go back to the machine to get the help. The nurse rightly shuts down my power wheelchair and begins to use the cough assist on me. Though he coached holding the mask firmly to the face, he did not. "Are you freaking kidding?!", I think. "Harder!", I say. I'm forced to repeat myself several times (exhausting). The nurse does a masterful job with the cough assist but did not coordinate the suction. Again, I'm forced to speak up. I swallow secretions, again. Then the wand is the hard plastic variety which doesn't work well for me. I try to direct them to the softer plastic one I brought from the ICU at the University of Washington Medical Center. I get some suctioning but I'm a self-directed kinda gal. I need it held low and loosely or upside down. I try to provide instruction with "Upside down."
""Upside down!", I exclaim. They interpret me incorrectly.I shake my head no. "Upside down!", I insist. They repeat the same interpretation. Head shake, again. "Upside down! Upside down!" They persist with the exact same misinterpretation. I'm exhausted, agitated, and now, exasperated! "Upside down!"Same again. "If there is a Hell then I am surely in it!", I think. "What's it gonna take to be understood?!""Upside down upside down upside down upside down upside down upside down upside down! "I tear off the goal post controller from my power wheelchair. (Why ask why?)
Another nurse is brought in to help decipher my garble. She does a great job with the cough assist but struggles with the function initially, dwelling on the timing of inhales and exhales. "Just get it on my face! ",We finally get my urgent needs met. The nurse talks me down with her calm, responsive manner. I'm finally calm enough to use my Tobii augmentative speech device. We effectively communicate. She learns the story behind the drama (for lack of a better word) Apologies are made both ways and we are moving forward.
I would like nothing more than to eliminate these "episodes" and sprout wings. Unfortunately, I think I will always be subject to my base human emotions of fear of dying, anger and frustration when I'm desperately trying to communicate my needs when I'm in distress.However, I shall keep striving to become episode-free.
I was at the end of eating my lunch when I choked. It happens. Just part of the disease process of ALS As muscles fail. What began to ramp up my emotions was my thoughts that I wasn't getting the help I needed. My power wheelchair had cycled off leaving me powerless to tilt forward to clear my airway (my PCT was not aware of my technique) so I coughed away expending energy. As a result, I was coughing up secretions and needed the suction machine which had NOT been set up.
The aide immediately set about putting the components together but the going was slow and I kept coughing away. Without the suction machine working, I was thinking "Oh God, this is just like the last home I was in, paying lip service to the ability to care for me and operate the cough assist and suction machines. I'm going to die sooner than later." (Those thoughts really piss me off! The idea that I could die because somebody neglected to set up my equipment properly!)
Next, a nurse comes to assist and while they struggle with the equipment, I let them know that I also need the cough assist. They seem surprised. I'm even more irritated. The machines are ready and the nurse takes over. He knows me less the aide and calmly discusses how to use the cough assist to the PCT who is not allowed to use the machine anyway. I'm thinking they are not taking my situation seriously and I'm incensed. I run my power wheelchair into my bed and jam it to the wall. (why ask why? I don't know. Poor impulse control? Frontotemporal disease? PseudoBulbar Affect? Weak moral character? I know not.)
I go back to the machine to get the help. The nurse rightly shuts down my power wheelchair and begins to use the cough assist on me. Though he coached holding the mask firmly to the face, he did not. "Are you freaking kidding?!", I think. "Harder!", I say. I'm forced to repeat myself several times (exhausting). The nurse does a masterful job with the cough assist but did not coordinate the suction. Again, I'm forced to speak up. I swallow secretions, again. Then the wand is the hard plastic variety which doesn't work well for me. I try to direct them to the softer plastic one I brought from the ICU at the University of Washington Medical Center. I get some suctioning but I'm a self-directed kinda gal. I need it held low and loosely or upside down. I try to provide instruction with "Upside down."
""Upside down!", I exclaim. They interpret me incorrectly.I shake my head no. "Upside down!", I insist. They repeat the same interpretation. Head shake, again. "Upside down! Upside down!" They persist with the exact same misinterpretation. I'm exhausted, agitated, and now, exasperated! "Upside down!"Same again. "If there is a Hell then I am surely in it!", I think. "What's it gonna take to be understood?!""Upside down upside down upside down upside down upside down upside down upside down! "I tear off the goal post controller from my power wheelchair. (Why ask why?)
Another nurse is brought in to help decipher my garble. She does a great job with the cough assist but struggles with the function initially, dwelling on the timing of inhales and exhales. "Just get it on my face! ",We finally get my urgent needs met. The nurse talks me down with her calm, responsive manner. I'm finally calm enough to use my Tobii augmentative speech device. We effectively communicate. She learns the story behind the drama (for lack of a better word) Apologies are made both ways and we are moving forward.
I would like nothing more than to eliminate these "episodes" and sprout wings. Unfortunately, I think I will always be subject to my base human emotions of fear of dying, anger and frustration when I'm desperately trying to communicate my needs when I'm in distress.However, I shall keep striving to become episode-free.
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