Laura’s Pen uses a “One thing every day” analogy to explain how restrictive life is with a chronic illness…
This post is inspired by a story my partner told me about explaining how my energy levels work. He was basically asked why I couldn’t come out for a drink. He replied that I had already been out to a cafe that day. They asked: “but can’t she rest and then come out.” “No,” was his answer. “She can only do one thing every day.” (Actually both of these activities exceed my “one thing a day” energy allowance).
Now I’m not claiming this will be a radical new way of explaining energy-limiting illnesses to healthy people. It is no spoon theory. But there is something in that, that while being very over-simplified, could be understood quite easily.
Before I start, you need to know these two things:
1. If you exceed the allowed energy for your “one thing” you will have less energy for your “one thing” tomorrow.
2. A lot of illnesses that affect energy are variable and unpredictable. You may not know what level of functioning you will have tomorrow until you get there. This makes planning for your illness very hard.
Here we go:
Very high-functioning
You work full-time. Attending work is the one thing you can achieve each week day. This means no chores when you get home, as quick a meal as you can achieve, and not doing much except watching the TV or some other low energy activity in the evenings. I’m sure so far this doesn’t sound too bad (but try to remember this is everyday, it isn’t a choice). You might skip on doing your hair or makeup or washing in the morning to save energy and sleep through your train journey to work.
But now it’s the weekend. Time to do something fun right? Ok. But don’t underestimate how much energy this might use. If you go out with your friends for drinks, you may well find that on Sunday you’re “one thing” is limited to basic care of yourself: feeding yourself, getting out of bed etc.
And what about the chores you’ve been putting off all week? Who is going to do the food shopping or empty the dishwasher/ wash the pile of dishes that have been building up for a week? And the bins need emptying. And you need to pay those bills.
High-functioning
You can work part-time but if your health has only recently deteriorated, you are under financial pressure and/or your dream job just won’t allow part-time working, you may be pushing yourself to work full-time. If you are, forget about the weekend, forget about your evenings, forget about anything outside of work, you won’t have energy for it. Because you are over-exerting all week, by the time the weekend comes, you’re “one thing” is just basic self care. You may well use your holiday just to recuperate at home.
Or, you do work part-time and you can just about cope with the that as your “one thing”. You either work shorter hours so the day is easier to cope with, less days so you can recoup on your days off (your one thing on these days will therefore be smaller), or a mixture of both. Hopefully, by doing this you have some spare energy for life- meeting friends, doing laid-back hobbies and, unfortunately, to do some of those chores.
Moderate
Your “one thing” is too small to work. Unless you can find an employer who will give you a couple of hours of work several times a week from home (unlikely). But you are able to get out of bed, maybe do a little bit of your hobby (if you frequently rest) as your “one thing”. You can occasionally see friends by over exerting. You won’t be able to do anything but basic self care for several days following, but it will keep you happy and sane to do so once in a while.
But you’re unemployed now, so you’ll probably need to apply for disability benefits. For one month you will be spending all your “one things” each day filling in the forms, making sure it’s as good as it can be so you clearly get across your difficulties and why you can’t work. And even after that, there will be a lot of days it takes up your “one thing” and causes you stress, which worsens your energy levels. You’ll have to ring the DWP a lot. You may well have to attend assessments (which will use up several days worth of “one things” in one go). If you’re lucky you’ll get your benefits without too much fuss, but if you’re unlucky you’ve got mandatory reconsiderations and appeals at tribunal all to look forward to. And then if you get the benefit, you’ll have to repeat all this in 18 months time.
You will come to accept that the house won’t ever look perfect. You will need help with the cleaning and any cleaning you choose to do will use up your “one thing” for the day (minimum) even if you’re super careful about limiting how much you do.
Moderate/severe
Your one thing isn’t big enough to leave the house. You will have to do so occasionally, but this will mean you probably can’t get out of bed for several days, or if you can, you will stumble to the sofa and stay there.
You can do small hobbies as your one thing if you are very careful about how much energy you use, but it’s likely your one thing for the day is getting out of bed, turning the TV on and resting frequently in order to do so. You can get to the loo yourself and grab food from the fridge but it isn’t easy. Every task is a challenge. If someone visits you, this will be more than your “one thing” and will take you days (probably mostly in bed) to recover from.
Severe
I have never been severe, so this is from what I’ve seen of others experiences. If you are severe, your one thing is perhaps sitting up in bed for a bit. You need others to care for you and help you do basic self care. You need to limit your sensory activity, so light and noise need to be reduced as much as possible. You might be able to use an iPad for a bit (there are some wonderful ME advocates out there organising fundraising from their beds) but this will need to be limited
Very Severe
I don’t think I can describe this accurately. Your one thing is your body functioning enough for you to stay alive. Any stimulus is too much.
I think for this one, I will share this video, so you can see for yourselves how life-limiting severe ME can be.
So hopefully that has shed a little bit of light on how life-limiting energy-sucking illnesses such as ME can be. If you are well, I hope this has made understanding your chronically ill friends a little easier, if you are ill, I hope your “one thing” today makes you happy and is tolerated well by your body.
Lots of love from,
Laura’s Pen