“You can’t be ill, you’re so organised”
You’d be surprised how often I hear this. I wouldn’t be surprised if a lot of you hear this too.
Needless to say I am so organised precisely because I’m ill. While it’s a responsible way to manage your life, chronically ill people I don’t have a lot of choice in this decision, and here’s why.
I can’t afford to be disorganised
Before you’re diagnosed with a chronic illness you have the luxury of being able to “wing things”, to go through life without much thought or planning.
Unfortunately when you become ill every day is a lesson in spinning plates. I work as a Project Manager and strangely, have found that I have to apply many of the principles I use while at work just to keep on living.
This is because endometrosisis’ main symptoms (chronic pain and fatigue) mean no two days are the same. Days can be erratic, exhausting or painful. I might be able to accomplish a great deal in one day despite these symptoms, but I may not be able to spread that feeling of accomplishment over the course of the week.
I am constantly hampered by my daily energy quota, which fluctuates on a unpredictable delay based on an activity or action I did days ago. There’s no pattern to my symptoms. I feel like this pretty much all of the time, and like many women with endometriosis, I can’t guarantee how I am going to feel when I wake up in the morning (even naturally in my own time).
When you lose the certainty around your life, when your body shows the first signs of decline or frailty, it’s simply not sustainable to keep managing your life in the way you did when you’re healthy.
So when you’re chronically ill, you assume and plan for the fact that you’re going to be ill every single day in a week and you’re pleasantly surprised when you’re not.
Some principles to bear in mind
Truthfully I am organised because I can’t take the risk that I’ll leave too much work for myself to do on a really bad day. This could mean things like making my work lunch the night before when I am well, leaving everything I need in the same place so I can minimise the amount of time I need to move around. If you’re like me and experiencing bad pain one day you’ll find yourself resting and thinking through the shortest route to getting a drink, or making a meal using the fewest steps. Or thinking about the quickest route to a bathroom (without any staircases).
Set reasonable goals for your day
It’s still important to set yourself goals for your day, but they should be goals you can manage without penalty. Perhaps break down bigger goals into smaller tasks that you can manage slowly over a week or find a different way to do a certain difficult activity. For example online food shopping instead of going to the shop and doing a lot of walking and carrying.
Write down everything you need to do
I would struggle without my phone to remind me of what I need to do in any given day. It holds all my work reminders and meetings, but also everything that I need to accomplish outside of work in a day. Because of this complete view of my day and week I’m become very good at predicting what I can manage in a day with the energy and pain I wake up with, and I can push back anything that I simply cannot cope with that day.
I manage this because of…
This is the most important aspect of coping with chronic fatigue management. You need to even out the activity in each day so that you’re never doing an uncomfortable amount of activity. Everything I do means a series of quick internal questions:
- Is this too much?
- Will I pay for this later?
- If I push this back perhaps will I manage more with my energy later?
Determine if you really need to do something on that a day and if it would be better (for the rest of your week) to rest and ask someone else to do it for you. If in doubt, always push it back for another day.
I’ve managed to claw back more energy for myself and the things I want to do with my time by simply evaluating what I need to do in a day against when the best time is for my body to manage it.
Rest when you need to, but with pacing you should be doing less “crash resting” and more relaxed rest. You’ll still have days when all you want to do is sleep (even if you’re unable to) but you’ve planned for those days with the actions above.
Sharing information to enable rest
This is a big part of how I able to keep working with endometriosis in particular. Everything I do at work is written down, reported or placed in a shared location in such a way that if the worst does happen and I do have to call in sick then there’s some stretch time for the other members in my team to carry on while I am away.
In life, this means being very open and honest with the people around you about how you’re feeling on a given day and when you’re finding it hard and have to ask for some help.
Not having to worry about missing your goals for a week gives you more opportunities to genuinely relax.
Remember that we’re not lazy
You might not take these ideas as far as I do, but we really need to crush the myth that chronically ill people are lazy. In my experience they’re more focused and organised than the vast majority of healthy people because they have no choice in the matter.
Our healthy time is finite and precious and life is a balancing act to squeeze out the most we can out of the limited “well time” we have.