ALS demands me to adjust to ongoing changes. Sometimes I accept it and other times I fight it. I was happy to have a power chair as I wanted to get around. I gave up my car without argument as I didn't want to injure anyone including myself. Now it gets harder. I surprised myself when I balked at learning how to use speech devices--somehow I thought delaying the process was going to make my voice last longer. How silly was that!? Denial is a restful state. When it was evident that I had to give up the 'Sit to Stand' lift I got angry at my arms. It didn't improve their strength by the way--just caused further frustration. Surprise surprise. The BiPap(breathing device), I accepted as I figured out it was a good idea to keep breathing--and it was. I cry easily when something doesn't work but I have learned to laugh when my body doesn't work. I will continue to whine off and on--ignore me. I will manage just fine. We all need to give ourselves permission to grieve our losses and lean on our carers, friends and family to renew our strength. As I experience more weakness and eventually total paralysis, I will not lean on you, I will rely on you.
1 comment:
praying for you, dear karyn, i don't even know that i could do what you are doing. God bless you! still praying and believing for a cure to ALS.
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