Creating Structure: When my Autistic Brain and Chronically Ill Body Fight Each Other

Today I wanted to talk about something I’ve been feeling extremely frustrated with for a while. It has to do with how my autistic brain and chronically ill body seem, in many ways, to fight against each other. I crave structure because of my autism, and before many of my chronic illnesses started, I thrived when I had a highly structured environment. Now, though, memory loss, fatigue, pain, and other symptoms make it almost impossible to incorporate any structure into my life.

There’s really no such thing as a typical day for me. How I feel changes from one minute to the next, and I never really know what I’ll be able to manage. I have multiple sleep disorders, so I have no sleep pattern. My hours are all over the place, and sometimes I sleep during the day, sometimes at night. I’ve been known to sleep for 14 hours or more, but no matter how much sleep I get, I don’t feel rested. I often have days where I can’t stay awake, but once in a while, I’ll have insomnia. When I’m awake, that doesn’t necessarily mean I’ll be able to be productive. I struggle with difficulty focusing, memory loss, sensory processing issues, chronic pain, and other issues. Some days I’m lucky to get one thing done.

When it comes to tasks I need to do, whether one-time or recurring, I often forget to do them. People have suggested setting reminders and alarms on my devices, which I do. While this does help a little, it’s far from perfect. Since I have no sleep schedule, there’s no guarantee that I’ll be awake when the alarm or reminder goes off. If I am awake, it’s very likely that I’ll stop the alarm and then forget what I need to do, not hear it if it’s a simple notification sound, or not feel well enough to do the task right then. If I don’t do whatever it is right then, I’ll forget. The best option I’ve found is loud reminders or alarms that repeat several times, but I still sleep through them sometimes, and they can cause anxiety and annoy me and my family. I still might also forget what I need to do as soon as I stop the alarm. I’ve tried creating a loose schedule, with some ideas of things I need to do for the day, but that hasn’t really worked out since what I can do from day to day varies so much. I might be thinking I feel okay when a wave of fatigue hits me and I’m forced to go to bed.

It’s very frustrating to crave and even need structure as much as I do but not be able to get it. Right now, I feel that I really have no routine, other than that I do a lot of the same things each day. For me, having some kind of schedule or plan for my day provides comfort and helps me get things done. I haven’t had this for years now and really miss it. I just wanted to share my experience since it would be nice to maybe hear from someone else who gets this. Also, if you have any suggestions on things I can do to add structure and routine to my life, besides creating reminders, I would love to hear them. Please comment.