Thursday, April 6, 2017

Zzzzzzz

     I have found myself sleeping a great deal more lately and I haven't been able to put my finger on just why that is. Rather than do research and freak myself out I reached out to my homies around the country who have ALS and asked them what their sleep schedule looks like. One dude is apparently Superman because he goes to bed late and gets up early. If I did this my poor caregiver would be mobbed by obscenities. Another buddy was completely different. He said he goes to bed when he feels like it and might not even get out of bed the next day until dinner. Mind you, these dudes are similar to me, relying solely on their caregivers for essentially everything.
     The last week or so I'm ready for bed at 7pm. It's definitely disheartening because the sun is still out and I know beautiful evening weather is just around the corner. Once in bed I rarely pass right out. My body stretches out fully, pressure points change, and I put on my space mask (aka my bi-pap). Once my space mask is on I usually get my cuddle on with the wifey, either watching How I Met Your Mother, Teen Mom, or MTV's: The Challenge, all awesome shows so don't bother hating. Once Michelle calls it quits we set up something for me to watch that will stream without needing to touch any buttons on my phone and will eventually time out around midnight when I fall asleep. Now in the morning, I'm typically awake by 9:30, so I clock about nine hours of sleep but sixteen hours of wearing my space mask that gives my lungs a break and chance to recuperate. Then, depending on the day, Emily or Michelle give me morning meds in bed, followed by leg and arm stretching leaving me in bed streaming something again for at least another 90 minutes.
      As I read that back that's a hell of a long time in bed. I wish my body didn't need that kind of recovery time. However, the moment I pity myself I think about the thousands of people with ALS who are confined to their beds all day, or who don't have a wheelchair equipped like a James Bond car to get around in. That's when I talk to God and ask him,  "how I can make an impact today?" As I've stated before in this blog, by the Grace of God I will use my wakeful hours to advocate for others with ALS and the less fortunate, I will raise money for a cure, even if I don't get to reap it's benefits, and most importantly I will spread love and joy through God's word, loudly and tenderly right before I close my eyes.


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