One of the most challenging things about living with a disability is being able to explain how much energy you have to a doctor, family member, friend or colleague. My definition of a ‘good day’ is no where near what most people could do when they were sick with a bad cold – but it still feels really good for me, compared with my ‘bad days’.
It turns out that energy isn’t simple or straightforward. I can watch a movie for a couple of hours most days (if I have the chance and if it’s not too intense), but as soon as I have two competing noises (like two conversations going on at the dinner table) I’ve got about 10 – 20 minutes before my energy is completely sapped.
More than that, each of us have bodies that will have different ways of communicating fatigue to us. And – because we actually want to be able to be productive members of society and participate in the important moments of our lives – we tend to have gotten very good at ignoring the early warning (and even later warning) cues that our bodies give us. It’s like we hope against hope that if we ignore them, they will go away and we can have our lives back!
As if that’s not enough, for many of us, the more we ask out of our bodies, the longer it will take for us to recover – and if we don’t recover fully before we try the next thing, we will crash quicker and our recovery will get even longer.
But since the key to living the best life possible with a chronic disability has to do with our ability to notice, understand and respond to our body’s energy signals, it’s very important that we become experts in ourselves, and learn to detect how much energy we have, how much energy this will cost, how we’ll know when we’ve done too much, and how long it will take to properly recover.
This is how we learn to live a (disabled) life that is still powered by love.
And while there are some great analogies out there already around energy thinking (my personal favourite is the ‘spoons’ analogy) I was having a hard time transferring my growing knowledge of my ‘spoons’ into a way that I could chart out to show to my doctors when they asked about how I was doing and in ways that would help me become more mindful about where I was at.
So I did what I do at a time like this – I put on my creativity cap and tried to see if I could design some pages that might make this process a little easier.
These are still very much work in progress – but it’s work that I’d love to workshop with you.
If you live with a chronic disability or are a health care provider working with those with chronic disabilities, I would love for you to have a look through these sheets and then contact me with your feedback! And if you’re just interested in what it’s like to live life with a disability I would still love your feedback, as you try and see if you can use these sheets to become more mindful of your own energy levels – because even those who are able-bodied can benefit from listening to what your body wants to tell you!
The first three sheets are designed to help you identify the different energy costs of different activities – and which ones are fine for you, which ones you should be cautious of and which ones you should steer clear of, whenever possible.
The first sheet deals with the physicality of an activity – whether you are lying down, reclining, sitting up, pushing yourself in a wheelchair, standing, walking or climbing stairs.
The second sheet deals with the mental effort of an activity. What is the impact of background noise, trying to listen to/participate in a conversation, being a passenger in a car (I also get similar impacts from watching movements with hyper-realistic movement – especially iMax films), watching T.V. or movies, reading or writing, problem solving and actually driving. The idea here was to capture each of the energy levels, not every single activity, but I think it’s possible I’m still missing a couple of steps here.
The third sheet is focused around the activities we have to do every day. They circle around our independence. They include shower or bath, getting dressed, reheating food (that’s already been made for you or comes from a can, preparing food or doing dishes, folding and putting away laundry without any carrying or lifting (so sometimes my husband does all the carrying and lifting but I can sit and fold and then sit and put away into the drawers from a seated position), lifting and carrying, and then sweeping, moping and vacuuming (which require more balance and effort than simply lifting or carrying). What other activities might need to be included in this list?
The fourth sheet looks at environmental factors that may affect our energy levels. These can be game changers for many of us, and so are important for us to take into consideration. We look at the impact of lighting (for some people any amount of light is an issue, for others it is only an issue if it is fluorescent), perfume or scents, temperature (how hot or cold the environment is), the barometric pressure, humidity, time of day and time of the month (most impactful for those of us who have monthly cycles).
The fifth sheet looks at our internal world, and how that affects the energy that we have to cope with life. It looks at the impact of thirst, hunger, sleep, pain, stress, hurry and interpersonal dynamics (or the stressors in our relationships).
The sixth sheet changes gears a bit, and requires some time and self-awareness. I also find that close friends and family members can help us to identify our various indicators sometimes better than we’re able to do for ourselves.
The idea is to get to the point where you start to notice what your body is telling you so that you can start to respond more readily to those signals and become better at managing your energy and avoiding the burnouts and meltdowns that take so much time to recover from and cause so much extra, unneeded emotional and relational heartache.
So for example, when you woke up and were able to get out of bed easily than you might know that you’re pretty close to a 10/10. Or if you’re moving a bit slow but have no pain and are feeling creative means you’re at a 9/10. But the fact that you are starting to feel irritable, and that your hands are shaking is a good sign that you’re at a 6/10 and that when your legs start to buckle under you it’s pretty much guaranteed that you’ve hit 2/10.
The truth of the matter is that living with a chronic illness or disability can really disrupt a healthy awareness of our bodies and what they want to say to us. It can cause us to repress how we feel or to reach for the adrenaline rush or the anger response that we know will help us ‘power through’ to achieve the things that we need to get to. But I think that everybody’s bodies are unique and special, and I think it’s important to get to know your own particular signs and signals so that we can learn how to live at peace with our bodies – even when they’re not at peace with themselves.
The final sheet is another way to think about the messages our bodies are sending us – but this time it provides some words to help those of us who feel extra-disconnected from our body’s signals, or who have a hard time finding words to describe how we’re feeling.
I’m quite certain that I’ve left off a lot of words on this list, so I’m really hoping to get some extra input on this sheet to help me pull it together!
So those are the sheets, and the introduction. I’m really looking forward to digging in more deeply to this conversation with those of you who are interested. Because the truth of the matter is that we can’t power our (disabled) lives with love if we don’t know how to listen to our bodies and help them to get what they need.
For those who would like to print out any of the sheets above, you can find the .pdf’s below. Please note that these are available for personal use only. If you would like to use them for clinical use, please contact me to make arrangements.