Craving Structure: Navigating Life with Autism and Chronic Illness

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.

Understanding My Daily Challenges

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.

The Impact of Sleep Disorders

My multiple sleep disorders contribute significantly to my daily challenges. With no consistent sleep pattern, it’s hard to predict how I’ll feel or what I’ll be able to accomplish each day.

Struggling with Tasks and Reminders

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.

Finding Solutions

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.

The Need for Structure

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. If you’re interested in exploring more about living with chronic illness and its challenges, you might find my post on Why Does My Body ‘Freak Out’? Insights from Chronic Illness insightful.

Also, for more insights on navigating faith alongside disabilities, check out my post on Life as a Christian with Multiple Disabilities. If you have any suggestions on things I can do to add structure and routine to my life besides creating reminders, please comment! Feel free to reach out through my contact page.

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