Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.
In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.
I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.
Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.
I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.
Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.
Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.
Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.
Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.
Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.
A Multitude of Musings 