5 Ways to Help Create Structure When Illness Makes Life Unpredictable

All these times you beat yourself up for not doing something or finishing something or not keeping to a schedule… who made those rules for you? Sure, sometimes it’s a rule you have to follow for work or because something requires it, but most of the time it’s a ridiculous standard we’ve made for ourselves.

As chronic illness warriors, we are guilty of adhering to this standard because we are desperately seeking some form of normality and progress. And the world tells us that to have normality and progress we must have routine and schedules and tidy little boxes for our life.

Except life doesn’t work like that and life as a warrior definitely doesn’t work like that.

Life as a warrior is about compromise, flexibility, the unknown, the unpredictable… and yet we are drawn to create rules for ourselves that are about the definite, inflexible, predictable — the known.

We often create rules for ourselves to control what we know deep down is uncontrollable. Even if, like me, you’re a natural rule breaker and hate structure, we still crave it so much and don’t know why! And it hurts us because it feeds into the “I always fail” narrative, the cycles of sabotage.

But it’s OK, because we can choose to change that at any time. Because we made those rules, we can also change them and break them.

So how can we create structure, some sense of normality, something to hold onto that doesn’t descend into failure and guilt? It’s all about flexibility…

Create optional flexible structures for yourself, think of it as a “choose your adventure” story book where there are a number of options you can take, but you have the freedom and choice to decide what you feel is possible from one day to the next. So how would that look? It looks like:

1. To-do lists that are purely a list in order of priority but without days or times attached. This way you know what’s next but you don’t feel overwhelmed by options and you don’t feel hemmed-in to do it at a certain time. You also have permission to do any of the tasks near the top, so you can go with what you feel like.
2. A “pick and mix” list of useful tasks that you can dip into when you feel like it. Simple, quick five minute tasks that get the annoying little things done and make you feel useful even when you don’t feel like doing anything big.
3. Things you can do from your bed and things you can do at your different ability levels. For example, I have a list of things I can do sitting up in bed when ill, but well enough to focus a bit. I also have a list for when I’m up and about, but not at full capacity.
4. Have a list of things to do when you’re needing rest. This sounds weird, but stay with me. It includes things like drink water, take tablets, put something easy to eat by the bed, sleep, lie down, read. It sounds ridiculous, but actually having a list of things to do when unwell — even if they sound like doing nothing–actually makes you feel like you’re still achieving at looking after yourself.
5. Instead or having “I will do” rules, have some “I don’t have to” and “I don’t” rules. This has worked so well for me because just giving myself permission has improved my anxiety and overwhelm. I have rules like “I don’t have to get up before noon,” or “I don’t do work on my business until after 2 p.m.” The magic of these is they still aren’t telling me I have to do anything and they give me permission to be flexible. I made time for me and my health my morning priority. Not everyone can do something quite like this, but you can make other rules. For example, “I don’t have to check my emails until after 10 a.m.” can give you less overwhelm at work first thing, or “I don’t do detailed work until after noon” if you work better with calls and meetings in the morning and find the brain fog clears in the afternoon. The great thing about these is you don’t have to tell anyone your rules, or if you have someone, and it helps to share them, you can. In my previous career I used to share when I worked best on different things with my manager so she would have my back on how I arranged my work and calendar.

We can still make forward progress towards our goals as warriors, whether that’s to start a business, finally clean the spare room or just genuinely make self-care a priority.

And let me say this loudly and clearly: all goals are valid and equal.

What you want is valid. It doesn’t matter that it looks small in comparison to other people’s goals.

It helps to be surrounded by people who know what that’s like.

As warriors, we just have to do things a bit differently, and that’s OK.

If you’re looking for a community of warriors that’s based in real connections and building confidence, you are welcome to join my free community, The Sassy Classy Warrior  as well as this online accountability group.