When they first arrive, most nurses will be intimidated by the sight of my condition and will wonder whether they will be able to do the job. They will be relieved to know that Jaya will be with them at every step till I feel confident that the nurse can do the job on her own. After a week of learning the various procedures and getting to know my communication methods, the nurses start becoming more confident. The problem is that many then quickly traverse to the other end of the spectrum and become over-confident.
They take longer to call Jaya and try to find out what my dumb charades could mean. But their guesses would naturally be confined to what I had indicated in the week or two since the nurse had come while this will be a new issue.. So they will rarely be able to guess the problem and finally they will have no option but to call Jaya to whom I will dictate what needed to be done.
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Many nurses think that all movements are voluntary whereas most of my movements are involuntary, This sometimes causes misunderstanding. For instance, my hands will keep bending at the elbow in response to cough, itch, pain, laughter, etc. The nurse will straighten them and in a few minutes they will again become bent. When this happens a few times, the nurse will say in exasperation, 'I am listening to you so why can't you listen to me? You are becoming stubborn! Keep your hands straight like this.' Of course, the advise will be in vain. I will feel like saying, 'It is my hands that are disobedient, not me!'
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Many nurses, once they get used to me, seem touchy when I call Jaya. They think I am complaining to her about them. Actually, I will just be telling Jaya to show the nurse an easier way of doing something (which they will eventually ignore but I will try telling them anyway) or it may be to tell them to avoid some movement that was causing me some pain. In most such instances, I will have no option but to convey such instruction via Jaya.
Perhaps they have no other word to express this and they will sometimes ask me, 'Any complaints to Jaya?' After we realised this problem, we started using another tactic. I will wait for Jaya to come into my room when the nurse is not present and tell her the problem. She will tell the nurse later in some roundabout way about it without letting on that I had told her about it. But in the case of some pain, I will call Jaya immediately.
Many times when I ask a nurse to call Jaya, she will say, 'Why call her? You can tell me what you want.' I will start getting irritated and rail silently, 'It should be obvious to you that I am not able to convey it to you which is why I want you to call Jaya. This does not require rocket science, does it?' It is a bit unfair but it is said that in anger, you will make the best speech that you will regret. I escape this fate since I can't make that speech. Sometimes the reason for calling Jaya might have nothing to do with the nurse - maybe I just want to remind Jaya about a bill that has to be paid, which I will obviously not be able to tell the nurse.
For a while, I will maintain a forced smile and try to indicate with vigorous movements of my head that there is no option but to call Jaya. Some nurses are stubborn and will persist in telling me that I should tell them the reason. I will start getting impatient and this makes clonus set in after which things are outside my control. My muscles will start stiffening and it will look as if I am having fits. The beneficial aspect of developing clonus is that the nurse will call Jaya immediately without waiting.
They take longer to call Jaya and try to find out what my dumb charades could mean. But their guesses would naturally be confined to what I had indicated in the week or two since the nurse had come while this will be a new issue.. So they will rarely be able to guess the problem and finally they will have no option but to call Jaya to whom I will dictate what needed to be done.
******
Many nurses think that all movements are voluntary whereas most of my movements are involuntary, This sometimes causes misunderstanding. For instance, my hands will keep bending at the elbow in response to cough, itch, pain, laughter, etc. The nurse will straighten them and in a few minutes they will again become bent. When this happens a few times, the nurse will say in exasperation, 'I am listening to you so why can't you listen to me? You are becoming stubborn! Keep your hands straight like this.' Of course, the advise will be in vain. I will feel like saying, 'It is my hands that are disobedient, not me!'
******
Many nurses, once they get used to me, seem touchy when I call Jaya. They think I am complaining to her about them. Actually, I will just be telling Jaya to show the nurse an easier way of doing something (which they will eventually ignore but I will try telling them anyway) or it may be to tell them to avoid some movement that was causing me some pain. In most such instances, I will have no option but to convey such instruction via Jaya.
Perhaps they have no other word to express this and they will sometimes ask me, 'Any complaints to Jaya?' After we realised this problem, we started using another tactic. I will wait for Jaya to come into my room when the nurse is not present and tell her the problem. She will tell the nurse later in some roundabout way about it without letting on that I had told her about it. But in the case of some pain, I will call Jaya immediately.
Many times when I ask a nurse to call Jaya, she will say, 'Why call her? You can tell me what you want.' I will start getting irritated and rail silently, 'It should be obvious to you that I am not able to convey it to you which is why I want you to call Jaya. This does not require rocket science, does it?' It is a bit unfair but it is said that in anger, you will make the best speech that you will regret. I escape this fate since I can't make that speech. Sometimes the reason for calling Jaya might have nothing to do with the nurse - maybe I just want to remind Jaya about a bill that has to be paid, which I will obviously not be able to tell the nurse.
For a while, I will maintain a forced smile and try to indicate with vigorous movements of my head that there is no option but to call Jaya. Some nurses are stubborn and will persist in telling me that I should tell them the reason. I will start getting impatient and this makes clonus set in after which things are outside my control. My muscles will start stiffening and it will look as if I am having fits. The beneficial aspect of developing clonus is that the nurse will call Jaya immediately without waiting.