In the last update I wrote about how expensive transitions have become. Today we started tweaking my routine to remove them.
The biggest transition is leaving my flat each day to eat dinner at a friends house.
It was a good idea, but it takes a lot of energy to travel back and forth. It also comes right at the end of the day when I am most tired. Saving enough energy is difficult and I find it hard to relax at my friends house when I know I need to return home a few hours later.
The new plan is for me to stay home in the evening with my flatmate. Instead of eating dinner with friends we’re going to swap to simpler microwave meals at home.
My updated daily routine is:
This is the main support visit each day. A friend visits and helps me with getting up, eating breakfast, getting dressed and hygiene stuff.
Between 9am and 1pm I aim to get 2 hours of work done. It may be broken up by resting or exercising (hopefully!)
Lunch is my main meal of the day. Aiming for around 800-1000 calories. Probably a microwave meal with help from my flatmate or a friend.
Between 2 and 5pm I aim for 2 more useful work hours. It might be achieved in short 20-30 bursts depending on energy levels.
At 5pm I’ll finish work for the day and start winding down. I’m aiming to have a bath in this time. If I have energy I may also play Lego or video games etc.
I head to bed between 7:30 and 8pm. This is the last transition of the day. In bed I have my iPod with audiobooks and access to Disney+. The day has officially ended! I stay in bed till my morning routine starts at 8am.
This routine is a little bleak and boring. Well. Kinda. It’s on purpose really simple as I don’t have the energy for much more.
However, if it goes well it will hopefully lead to more spoons and me being able to do more things. I’d like to ride my bike a few times a week or visit the park. That would be lovely.
I am somewhat optimistic. I’m confident we will find a pattern that works soon enough.
