Saturday, 27 August 2016

Not A Good Day

It's wine bottling day today. I am almost ready. Bottles are mostly cleaned and sorted. Supplies have been purchased. Food for the BBQ is in the fridge. Most importantly, the wine is ready for bottling and friends are coming to help. Yet I am not excited, not even very happy. I am tired, so tired of this disease. I am angry, frustrated, exhausted. I am past the tipping point. The only thing that keeps me from ending my own life is this weird combination of fear, courage, hope and curiousity about tomorrow.

I'm angry that I have lost so much, come so far down. I am angry that I can't go to the toilet without the effort causing me to break out in a full sweat. I am frustrated with the many things I drop during the day where I have to work so hard to pick them back up. I am exhausted by the 30 minute effort it takes to empty my dishwasher on my own, assuming I can actually get things into the cupboards without dropping them and breaking them. I am just plain worn out, finding too many things to be too much of an effort.

It's not that I am ready to quit. There will be no suicide note today. It's that almost everything these days seems barely worth the effort. I'm not starting any wine today; it was too expensive to buy and too much to carry. I'm not preparing any food today; I'm leaving that to others. I'm not really making any sort of plan for the day; it's too much effort. I just don't want to do any of it.

Yesterday I put myself through an emotional roller coaster, up and down, high and low, twisted and fast. There was no real reason for it; it began with me imagining, simply imagining that I had made one of my friends angry. There is no reason behind this; it's all in my own mind. Yet my mind rattles on, unconstrained, rolling from stable to tearful, from happy to miserable, and then from miserable to horribly self-condemning. All from nothing.

This emotional roller coaster is a sign perhaps, a sign that my meds are wearing off again. I am going to have to watch myself. On the other hand, it's no surprise that I am tired of all this. It's just too much, too hard, and it's taking way to long.


  1. Richard, Damn it. I am so sorry though I know that means nothing. My husband had ataxia that progressed very quickly. Some doctors thought it was ALS or MSA. He went down hill steadily. We had terrible insurance so couldn't afford real help and real equipment. I was bitter. He was a wonderful, lively man who saw the best in everyone and every situation. He couldn't speak after a while and couldn't eat or even move. I was there always and it broke my heart 100 times over. He still had the ability to love and let me know he was in an ok place. My point is. You have friends who want to see you, spend time with you and give you love. Does that help. One day in 2014 Bruce's best friend came out to visit and they spent some wonderful days together. The next day Bruce gave up. I believe he willed himself to go. I hope Ruchard, that you still have the gift to love your friends. They need you as much as you need them. Please accept that I care about you and wish you the best. Telling your story is very important. Its unselfish and will help others. Love, Jan

  2. my dearest one i am so sad that you are in this state, I pray your day improves some and you can have a decent day tomorrow. I wish there was something I could do for you but a province away and no help to offer there is little I can do. I love you so much and can do so little. Love Mom