A few weeks ago we made some changes to my daily routine and they have been really positive. We sort of knew these changes where needed, but getting ill was a good catalyst to get the changes made.
There are three main changes:
These changes are not huge, but they totally depressurise the flat. I don’t get trapped there anymore.
The extra spoons in the evening are also very useful. For the first time i have energy left when the support people visit. This makes it much easier for me to interact with them. I am not hitting the “totally exhausted” buffers as often.
Unlike when my friends where staying overnight, this arrangement is much more sustainable. It’s integrated into things my friends where doing anyway and its a nice way to simply spend time together. The core of my routine is still coming from paid support.
We probably will start adding paid support for some of the daytime visits. This will take a long time to build up too, but once we have it will be useful for giving us more options.