Managing my Chronic illness with ADHD

Hello Dear Reader,

I am chronically ill as well as neurodivergent and these two aspects of myself intersect quite a bit. Caring for myself is nearly a full-time job because I have elevated needs due to my illness but self-care is something that neurodivergent people are notoriously bad at, myself included. Doing anything that involves being consistent (read repetitive) is hard for people with ADHD, having unexpected and unpredictable changes is hard for people with autism. Chronic illness requires consistent deadline-based habits and can randomly fluctuate even if you do everything perfectly. These are at odds and it can make living hard. But I have been working on ever-evolving systems that help me do the best I can to take care of my body and my brain.

Medication

In order to keep my pain at a tolerable level and my energy up, I need to take medication and supplements four times a day. I divide up my medication into a pill sorter that has four compartments and I have alarms set to remind me when to take them. 

This is not a perfect system because I will turn off the alarm and then finish what I was working on and totally forget to actually take the medication. I try to stop what I am doing and take it immediately but this does not always happen. Another point of failure is that sometimes my executive dysfunction stops me from being able to refill the pill sorter. My solution to this was to make a google doc that I have shared with my spouse and children explaining what things go into which compartments so that if I can't make myself do it then other people are equipped to step in and help. 

Workouts

Gentle activity is super important for managing my mental and physical health. What I have found over the years is that I do well with yoga, weightlifting, ellipticals, and swimming, and I need to get at least 7k steps a day but not more than 10k.

I wear a smartwatch that helps me keep track of my exercise and movements and I have a gazelle elliptical machine in my home that I can do 30 min or so on daily to meet the goals that I track in both my bullet journal dailies and in a couple of apps on my phone (I am still trying to find the right app for me.)

The struggle here is that chronic fatigue while it can benefit from regular exercise in some cases can prevent it, or be worsened by it in others. This is a day-to-day, hour-to-hour assessment that is not something I can easily plan for. And once in a fatigue flare, I can not work out again until I have rested enough, even though workouts can help keep the fatigue and pain at bay. It's hard to rest when in pain and so the resting process ends up being a much longer process before I can get back into my workouts. And all of this assumes I remember to work out in the first place and unlike the medication, it takes more time than just pausing what I am doing so it's much harder to schedule. I can't just set an alarm and work out at the same time every day because my every day is not the same. My dream is to wake up a little earlier and work out first thing in the morning. But I just can't make it happen consistently. I am still working on this one.

Rest vs productivity

Based on the number of articles and memes and social media posts I have seen about burn out I understand that we as a culture here in America have an unhealthy relationship with rest and productivity. This is an old and complicated relationship and it's very hard to detangle all the social rules spoken or not that impact this and we as a whole are starting to reach a breaking point. This struggle is so much more complicated when what you are capable of doing is far less than an able-bodied neurotypical person. I have only just started to figure out how to manage this. 

I pick limited goals to not push myself to do more than I am capable of. I record what I do, too. Everything. Rested and watched youtube, or showered, or made lunch, or just ate lunch. Each task takes energy and accomplishes something even if it doesn't feel like a "productive" sort of thing. I am also trying to do a better job is listening to my body and honoring what it tells me. I do not have to push harder, I am not lazy for needing to stop. I still struggle with guilt and practicality. Things need to be done regardless of my ability to do them and I don't yet know how to meet those needs without pushing myself into a flare.

Schedule 

Google calendar. 

I love the ability to share calendars and we have one for each family member as well as close friends and other members of our tribe. I put everything on the calendar as soon as it is scheduled. This provides me with a landing point for all the things going on in my life and the lives of my people. I use this to fill out my bullet journal when planning and to try to figure out when to fit in the rest of the things I need to do. 

 

One of my biggest struggles is that my autism craves routine, my chronic illnesses would benefit from having a consistent level of self and environmental care. However, my ADHD rebels against anything that is repetitive (read boring) and struggles to even remember basic daily tasks without a reminder, and my pain and fatigue are impacted by factors outside my control, like the weather, which can throw a wrench in any plans I have made. I am trying to figure out a flexible schedule that will allow for varying levels of ability and busyness but still keep a consistent level of care so that I can rely on myself to get things done.

I am still learning and my systems are ever-evolving. My current goals in this arena are to create lists that would give me pre-thought-out solutions to problems that can fit within my need sets in the same way I made a backup document for getting my pill sorter filled. Such as, what do I do when I wake up too nauseous to take my medication? What should I eat for lunch that will best fuel me for the afternoon? When is the best time for me to work out when all the factors are considered? If I go grocery shopping what else am I reliably able to do that day without impacting the next day? how often do I need time with my people for my mental health? How much time alone do I need for my mental health? I am slowly working through these questions and trying to create a map so I am able to most effectively avoid the dangers of the Fire Swamp that is my complicated needs set. 

I would love to hear what has worked for other people who are also struggling with these things and know what tips and tricks you have figured out that work for you. And if anything I have shared helps you find something that works for your unique constellation of needs I would love to hear about it!