Sunday, 27 August 2017

Nothing Really Matters

6:30 PM and I am finally out of bed. I guess it doesn't really matter. A lot of what I do doesn't really matter anymore. If I am hungry, I eat, sometimes. I have enough fat to keep me going for a while. Unfortunately it's not the fat that gets burned first; it's the muscle. I don't have a lot of that. I haven't eaten yet today. I might have a cup of coffee. I might stay up for a bit. I might not.

Yesterday was another sleeping day, although the last couple of hours in bed were unintentional. I had told the HCA to leave me in bed. She put socks on for me, and helped me change my underwear. Then she left. At about 2:00 PM I wanted to get up and get ready for a party I was attending last night. I went to sit up and found I couldn't.

There I was, legs off the bed over the edge, desparately trying to get up into a sitting position. I tried for an hour or so, then finally called Home Care to come and rescue me. As you might expect, the wait was long, about an hour and a half. During that time I kept trying to sit up, finally achieving verticality just before the HCA arrived. She helped me dress and get into my PWC.

I ate a cookie. Even though I was headed out to a party, I ate a cookie. I don't think it matters much these days if I am high or not, drunk or not, awake or not, asleep or not. It certainly doesn't matter if I am happy or not. There is so little I can do with my body these days. It is failing me quickly. Like Freddy Mercury sang in the song Bohemian Rhapsody, "Nothing really matters, to me." It's not that I have given up. It's just that I have come to realize there is nothing I can do about ALS, nothing at all.

So I'll stay up for a bit and have a cup of coffee. I'll probably eat something. Then I will probably watch something on Netflix for a while before going back to bed. I don't have the energy for much else, nor any real reason for doing it. This disease is killing me.


  1. My husband is dealing with no reserved Energy for today. Up 2 hour am that's it. Happening more & more. Sorry same for you to.

  2. Hi Richard, I am sorry you feel the way you are feeling although I fully understand. You have meant a lot to me in so many ways since I came across your blog. I hope that you want to continue to write so others can learn from you as I have. I wish I could say something that would make you feel better but you know what you are up against. You take care and do what you need to do for what is right for you. I am truly grateful to you for helping me make sense of what happened to my sister when she had to face als. Thank you.

  3. Richard, I too agree with Rufussousa, sounds like your in a lower the low the last 2 years of reading your blog. And like many of us, every day except for a few days you skipped. And yes I too have learned a lot from your informative and also hilarious funny posts. And as totally weird as this sounds " really weird" feel like I've become a one sided friend. And I will miss my Internet connection with you, when you decide to stop writing. Hope you rest well this Sunday night...

  4. Five years is a long time to be pushing that boulder up the hill. My time has just begun, diagnosed in March, probably ill for a couple of years. I've enjoyed reading your bog, if at times with trepidation, and I've found it brave informative and inspiring. I don't know what matters. It's a big universe and a long time between ice ages. But your work has mattered to me. And thank

  5. This was what my dad was going through last month. Both of you are so brave and strong.