After spending a whole post about how it’s okay to label yourself as disabled, I feel like it’s only fair to give you a glimpse into my life as a disabled writer. This week, I’m going to give you a glimpse into how a typical day goes and ways I’m working to protect my health every day. I want to do this to show the power that allowing yourself to identify as disabled can have and to help others who live with disabilities feel less alone in measures they need to take to take care of themselves.
Breakfast With My Planner
I typically start my day by eating breakfast while looking at my planner. In my planner, I will do any daily measurements that feel important, like blood pressure, while trying to pick out an affirmation to get me started. I’ve learned from watching a lot of therapists on YouTube that affirmations can help skew your brain to a more positive place as long as you, on some level, believe the affirmation. Often, this practice will have me bouncing a lot of sites as I google a keyword like “business owner” “self love” or “woman” with affirmations. I look around until I see something I feel like I believe and go over my schedule for the day. Most days, I have no events in the far left column. I’m resistant to scheduling a lot of tasks right now as I don’t feel reliable, so I only put things that other people plan that I want to attend. I make note of any blocks of time and see if I’ve missed them or if they are still to come. If they haven’t happened, I will keep them in mind, otherwise I will cross them out because I obviously missed it.
Work As I Can
After I finish breakfast and taking my normal daily measurements, I get started on my to do list in my planner. I try to only have a handful of items to do each day. I am never sure of my energy or what weird resistances I will have to the items on my list so they are put onto the page and can be cut and pasted to another day if I don’t feel up to doing it that day. This is where understanding spoon theory comes into play. While my general spoon pool is a concept I understand, I don’t really know how to determine the number of spoons I have, so I use the pool to determine which tasks I have energy for and which I should move. I keep items on the list I feel I have spoons for and move the rest to future days. I try to be proactive as I take on projects with longer deadlines because I need the flexibility to push tasks forward if I’m having a rough day, but I still want to get these things done.
Then I dig in and start writing, researching, or streaming to create the content that feels most like it needs to exist. I do as much as I feel okay doing and then I either stop and move onto something fun, or I take a nap. Often naps are the only way I can function, as my disability impairs my energy regulation system in my brain. After the nap, I’m usually able to squeeze a bit more effort into the day which I reserve for things like maintaining my house or general self care.
Others Get Home
This part can blur a lot with the last point. I live with my sister and her family as my disability makes it hard for me to cover all aspects of household management along with functioning on any decent level. My sister and brother-in-law work during the day and leave their kid at daycare. My kid goes to school. Because most of them are out the door before 9, I rarely see them until they get home in the afternoon or evening as I often need to sleep in to be at all useful to anyone. Usually my kid is the first to come home as she gets out of school before adults would get off work. This acts for me as a signal that I may be ready to switch tasks. It’s often around the time my kid gets home from school that I run out of energy to do my work. So I take a break and we get to hang out together. Sometimes, I’m still a little busy, but it acts as a reminder that I haven’t eaten in hours and my body is going to revolt if I don’t eat. Regardless, other people coming home helps me to know that it’s time for my brain to switch gears and take care of the house over writing.
Dinner
Some time after everyone gets home, we have dinner. We can get to talk over dinner or watch shows together on TV. It’s a chance for us to spend time together and have a solid break from whatever else is happening. Then my kid and I do the dishes for the day. We clean up after the cooking and put the food away so that I can know what options are around the house to eat. This has become increasingly important as I’ve been working with a dietician as we focus on making sure I remember to eat lunch and knowing what’s in the house helps me overcome the idea that I have to figure out what there is to eat.
Fun time or creative time
After dinner we have fun time or if I’m feeling more energetic, I may have a creative session where I do some writing. Often during this fun time I watch TV, watch people playing games on YouTube or Twitch, or I play Final Fantasy XIV. I have an outstanding free company or guild in Final Fantasy that I see as friends. They understand the difficulties that can happen with my disability and don’t hold it against me if I mess up in a raid because my brain stopped cooperating with the game. This is also where I get to spend a lot of time with my girlfriend, who currently is in a separate state from me. We get to talk, flirt, and have fun, even though physically we are miles apart. This will continue on until I’m feeling tired and shut things off to go to bed.
Bed time
After chilling out, I’ll get ready for bed. Typically, I need some kind of noise that engages my brain fairly well without having me so interested that I need to stay awake. I’ve found that murder mystery novels, especially ones I’ve already read, are great at filling this as the world of Sherlock Holmes or Hercule Point makes sense and I know how they end but listening to the detectives work is still interesting and soothing. With my book going, I will relax and let myself drift off.
That’s a breakdown that outlines what a typical day looks like for me. How does your day compare? Do you find there are different things you normally do? Let me know in the comments below.