I'm so misunderstood. (How cliche', eh?) But, so appropriate.
With ALS, my dysphasia has me down to mere words, single word responses and requests that I cannot help but butcher. I feel bad for my caregivers having to discern what I'm saying. It's worse than ever and I'm lucky for what I have. Funny feeling both gratitude and dread.
For an example, look at my communication with my beloved husband. Yes, I said "beloved". We've had our issues but, damn, he's still with me, bringing chocolates, flowers, food, and spending time with me. Nobody else comes close to his level of devotion to me. He feeds me, brushes and flosses my teeth, downloads audiobooks, and plucks stray hairs for me. That's devotion. It is not pretty.
In many ways, he understands me the best, but he came with baggage. (Didn't we all?) Anyway, if he cannot understand that I'm having an issue and I begin fussing, crying, and issuing terse one-word commands, he's outta here. And, I mean fast. It's so callous and hurtful! I'm powerless to fight further escalation and can even dip into suicidal thoughts.
Like today, we were scheduled to visit the gastroenterologist, when I got transferred to my power wheelchair. I discovered my head controls were useless, my hand control maladjusted, my cotton top was twisted and overpowering my weak muscles, and, worst of all, my chair pad was devoid of air. Once my pain threshold was breached, I was done. (Remember that spinal injury that keeps getting exacerbated? Well, injured again.)
I was thrashing about, (head thrashing) and scooting down in the chair to attempt to alleviate the excruciating pain in my coccyx (tailbone). Epic fail on my part as NOBODY translates that action to intolerable pain in my a**. My husband sees it as a temper tantrum and steps in and grabs my feet, holding them up, thereby increasing my pain. By the time he left, I could care less if I ever saw him again. (Please hold your judgement unless you're in the same situation.) My tobii mount was also maladjusted, preventing meaningful discussion and nobody picked up on my pronunciation of "pain" and "pad". I was hosed! I got transferred back to bed and asked for morphine. That says a lot, I avoid narcotics like the plague.
That's one incident. I'm having more and more of that. I really dread worsening.
With ALS, my dysphasia has me down to mere words, single word responses and requests that I cannot help but butcher. I feel bad for my caregivers having to discern what I'm saying. It's worse than ever and I'm lucky for what I have. Funny feeling both gratitude and dread.
For an example, look at my communication with my beloved husband. Yes, I said "beloved". We've had our issues but, damn, he's still with me, bringing chocolates, flowers, food, and spending time with me. Nobody else comes close to his level of devotion to me. He feeds me, brushes and flosses my teeth, downloads audiobooks, and plucks stray hairs for me. That's devotion. It is not pretty.
In many ways, he understands me the best, but he came with baggage. (Didn't we all?) Anyway, if he cannot understand that I'm having an issue and I begin fussing, crying, and issuing terse one-word commands, he's outta here. And, I mean fast. It's so callous and hurtful! I'm powerless to fight further escalation and can even dip into suicidal thoughts.
Like today, we were scheduled to visit the gastroenterologist, when I got transferred to my power wheelchair. I discovered my head controls were useless, my hand control maladjusted, my cotton top was twisted and overpowering my weak muscles, and, worst of all, my chair pad was devoid of air. Once my pain threshold was breached, I was done. (Remember that spinal injury that keeps getting exacerbated? Well, injured again.)
I was thrashing about, (head thrashing) and scooting down in the chair to attempt to alleviate the excruciating pain in my coccyx (tailbone). Epic fail on my part as NOBODY translates that action to intolerable pain in my a**. My husband sees it as a temper tantrum and steps in and grabs my feet, holding them up, thereby increasing my pain. By the time he left, I could care less if I ever saw him again. (Please hold your judgement unless you're in the same situation.) My tobii mount was also maladjusted, preventing meaningful discussion and nobody picked up on my pronunciation of "pain" and "pad". I was hosed! I got transferred back to bed and asked for morphine. That says a lot, I avoid narcotics like the plague.
That's one incident. I'm having more and more of that. I really dread worsening.
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