So it’s 6am on a Monday, and I’m sitting up in bed feeling like I’ve been hit by a bus. I have a condition called POTS (for those of your not familiar with POTS here is a lovely list of symptoms from POTSUK) and that causes me a lot of issues day to day, starting from the moment I wake up.
I have to lay in bed for at minimum 10mins after waking and do muscle squeezing exercises to get my blood pressure up enough to safely leave my bed. I then have to take my daily measurements (blood pressure, oxygen levels, and temperature) to decide whether I am safe enough to leave the house.
This is only a fraction of the daily routines and pacing tasks I must do every day to be able to “function” (I don’t really like the word but I’m lacking a better alternative in this context). I think most of my team thinks I’m some sort of machine when it comes to routines and pacing because I am so on top of it all. The truth is that I have experienced such severe disability from my collective conditions without my routines and pacing, the level of disability where I couldn’t stand without fainting, I couldn’t cook for myself without the brain fog causing a fire (yep I actually started fires), where the fatigue was just so all-encompassing that I couldn’t even sit down to do the most basic of life admin tasks.
So for our April blog series on being #AcutallyAutistic, I wanted to do something on pacing and routines. Not from the perspective of a charity CEO who sees Autistic people struggle but from the perspective of an Autistic woman who is struggling every single day with these very issues.
This is going to be the steps I have taken to get my routines and pacing down. This is not a “do this and you will be fine” because it’s all about what I have done, but I am hoping that you will be able to take away at least one thing to support you ongoing.
The Importance of Pacing
Many of you will have heard of things like the “Spoon Theory” or other pacing ideals. What it boils down to is this:
You have a limited amount of energy and you must use it wisely.
I really wanted to find some kind of formula, template, anything! that would give me a more tangible idea of what this looks like. Sadly, that doesn’t exist. Our energy levels are unique to us and what affects them is unique to us. So this is the best I could do:
Try making your own list to see what comes up, I think it’s important to have the middle “unsure” column because some things will be a bit off both. Here is what mine looks like
Knowing what is going to give you energy and what is going to take it away is hugely important when it comes to pacing and planning out routines.
This is my to-do list for the day:
- Food Shopping
- Collect Prescription
- Collect Cat Food
- Book a GP Appointment
- Call Electric Company (issue with the latest bill)
- Put Away Laundry
I know there isn’t much to do and I can sort it whilst listening to my audiobook, making it a nice
Shopping, Prescription & Cat Food
All “out of the house” tasks, I am fortunate enough to drive and have a blue badge so I can duck in and out of these tasks relatively quickly, but shops make me nervous.
Phone Calls to GP and Electric Company
Phone calls stress me out no matter how I am feeling so will always be, for me, a hard task.
Now I know what I need to do, and I’ve gauged how hard I feel those tasks are, I plan them into my day. I try to allow a least 1hr per task because it will mean I don’t feel rushed. I also dot in some energy-giving tasks, like in my example above, so that I am having breaks from my “chores” and that looks something like this:
One really important thing to remember in all of this is to be kind to yourself. You may be looking at this thinking “oh yeah great in theory, never in practice” and that’s ok. There have been many times when I plan out a day like this and after the first task I am exhausted. It’s really tempting at that point to berate myself about how I “can’t even do a few simple tasks” but I’ve learned to just accept that days don’t go according to plan, and those unfinished tasks go back on the list for another day.
Getting Into A Routine
Just like effective pacing, is so much easier said than done.
I am currently very much in love with my Finch App (link at the end), it’s a self-care app where you take care of a little birb by taking care of yourself. I’ve been using it to lay out my daily routines and self-care tasks and keep an eye on what I am and am not doing regularly.
Something like this really works if you’re into cutesy “Tamagotchi” type things, and that might not be your thing. There are tons of apps and programs out there (some recommended below) to get you on track. I think my greatest downfall in securing a good routine was trying to do too much at once. I would write out plans of wanting to go to the gym every day, eat healthily, write blog posts, all the house work, etc. and it would work for maybe three days tops. Start small and build up your routine, pick one thing that’s important to you and run with that. After a few days, add a thing, and repeat until you get to where you need to be.
Remember that these things are for you, not for other people. You pick what works for you and how, and you should do it because you want to not because other people think you should.