Although I didn’t know it, I was doing Rest:Do Days before I got ANCA associated vasculitis, to manage chronic pain from osteoarthritis. This year I needed to give them a name, to make them a Thing. A shortcut if you like, to a particular way of doing things. A friend told me about the Drill, an approach to managing crises, and to us the Rest:Do Cycle was similar. I am in constant pain, with stiff joints. My thinking can be distorted by the drugs I take. I am weak: vulnerable to infection because I am permanently immuno-suppressed and tired because my sleep is disrupted by side effects. I long for the stamina to do something from start to finish in one go: but I have to rest frequently, to relieve pain and recover my breath and my thoughts.
What are Rest:Do Days?
Rest:Do Days are days when I take control of how and when to do important things. They are different to sick days, when I’m focused on keeping safe, warm, fed, clean, and connected with people. They are also different to hospital days, when I yield to the routine of the clinic or the ward. Rest:Do Days are made up of cycles, so some days it’s possible to have partial Rest:Do Days. On Wednesdays I go to an art class in the morning, so if I am not too tired I will do some Rest:Do Cycles in the afternoon, to do other things that are important to me.
Mostly I decide in advance that I’m going to have a Rest:Do Day and how long the Rest:Do Cycles will be. A favourite one is 20 minutes rest for every ten minutes of doing. Sometimes I will have 50 minutes of rest and ten minutes of doing. Recently when out with friends I could do 10 minutes of rest to 50 minutes of doing, but the doing involved very gentle strolling around a beautiful garden in perfect weather with lovely people, so it was a very easy, enjoyable kind of doing. And we had three very long refreshment breaks: before, during and after. The key point is to schedule in regular rest, whether I feel I need it or not, before I get exhausted. Setting up a ratio in advance means I don’t have to think whether I need a rest. Sometimes I’ve had 5 minutes of doing and an hour of rest: this is useful for Sick Days when I’m starting to get frustrated but know I need to be careful, so I start myself gently. On Rest:Do Days, I change the ratio during the day, so I might start with a Rest:Do cycle of 20:10 minutes, and switch to 50:10 as the day progresses, because I am getting fatigued.
What’s the difference between Resting and Doing?
To get the full benefit, it is worth thinking about this. It is confusing because both resting and doing involve doing something. Sometimes to rest, I will be sitting in a chair apparently completely inactive. Sometimes I go to sleep. But the difference between Rest:Do Days and Sick Days is that I choose to go to sleep. On Sick Days I am too ill to make active decisions. On a Rest:Do Day, I will make a decision that in this cycle of resting and doing, I am going to go to sleep for a rest. Or that I am going to sit in a chair for a while, get control of my breathing and watch the birds/flowers in the garden. Or think about what I have been doing and what I’d like to do next.
Similarly, in the Do part of the cycle, I might be doing something impressive such as sorting out the recycling for collection, but I might also be reading a book. Reading is interesting: it could be Resting or it could be Doing. It depends on how fatigued I am, what the book is and why I’m reading it. So Doing is not about movement, but activity: doing something purposeful. I try and move because I like to and I feel better for it, but the purpose is not to move. It is to experience satisfaction in getting things done despite considerable challenges, without exhausting myself.
As I come to the end of my rest, I think about what I’m going to do. Sometimes this is easy: I have to go to the toilet, take my medication and get a drink. That will take up the time I’ve allowed for doing. I wanted to make soup the other day and I did it in several cycles:
- REST: have a snooze, then decide which recipe and remember where the book is
- DO: find the book, read it, leave on table (plus take medication, get drink)
- REST: sit and drink, message friends
- DO: get all the ingredients and utensils out (go to toilet, put cup in dishwasher)
- REST: sit and breathe, maybe crochet or snooze
- DO: prepare the vegetables
- REST: sit and sweat! The joys of prednisolone…
- DO: start cooking (maybe put a podcast on, feeling reckless)
- REST: sitting stirring the soup and listening to the podcast (maybe)
- DO: get bowl, spoon, plate, bread ready for eating (clear table of other stuff)
- REST: sit, talk to the dog (less tiring than talking with people)
- DO: eat soup, yum. In silence. Sometimes I feel like I’m living in a monastery.
Some more details
Why not just buy soup? Why bother with all this? Of course, that would be much easier. It would be even easier to live in a hotel and have room service, with staff bringing me soup in bed. But this isn’t about making life easier in that sense, in doing less, it’s about doing more, so I feel more satisfied and powerful. In that sense, rest is as important as doing: I’m deciding what I’m going to do. Before I got the hang of this I would do too much and then collapse in a heap, feeling despairing and hopeless. Sometimes I still do that, but as soon as I can I invoke Rest:Do and I feel in control again.
To keep that sense of control, I have a basket of things to do when I’m resting. That’s where my current crochet project is stored, plus my ipod and headphones, a magazine, some handcream, a book. I don’t watch much TV because it hurts my eyes, but I listen to the radio, audiobooks and podcasts. If I’m resting and I’m out, I watch what’s happening around me, enjoying details and little dramas. If it gets too noisy and I’m beginning to feel fatigued, then I’ll take my hearing aids out, put my headphones in to muffle the noise, get absorbed in my phone and maybe move somewhere quieter. I try to choose spots to rest where it is going to be quiet, but that’s not always possible.
When I’m planning what to do, I try not to plan too much. If my mind is racing (another unwelcome side effect, but sometimes just my enthusiasm surfacing because I know it could be a good day), this is very important. I limit myself to three things to do. To get control of my thoughts, sometimes the three things have to begin with the same letter, such as get Drink, feed Dog, take Domperidone (one of my drugs). Then I can mutter to myself Drink-Dog-Domperidone, to keep focused. I wanted to plant 12 new plants in my garden, so I counted them to make sure I’d got them all (1), put them in position (2), then started with the biggest one and did them in batches of three (3-6), then put my tools away (7). That took seven short Rest:Do cycles of about 5:5 minutes, with long rests at the beginning and end.
I use my phone timer if I need to be in firm control of the Rest:Do cycles because my mind is racing or I feel daunted by what I’ve got to do. Sometimes I start by using my phone timer and then I get into a rhythm and I don’t need to. I tend to set my timer for Rest, to make sure I Rest long enough. Usually I know when I’ve had enough of doing, because of pain or getting brain fog. My phone is packed with alarms for my drug regime, which is particularly complicated, so I can synchronise my Rest:Do cycles. I prefer not to be clock-watching, so will make a decision about how long to rest using other cues, such as how much crochet to do. 15 and 30 minute radio programmes and podcasts are great. The point is to be in control, to make decisions in advance.
Why Rest:Do Days work
I have systemic vasculitis: any small or medium blood vessel in my body can become inflamed, causing pain. Rest:Do days have become a way of taking control. I think that’s why they work for me. I’m focused on what I’m doing and how I’m doing it. This is an occupational focus. It’s different to focusing on my feelings and thoughts (psychological), on managing my bodily symptoms (physical) or on the situation I’m living in (social). It’s a combination of all of those things. Some would suggest it’s a biopsychosocial focus, but I think it’s more than that. It’s simpler and more complex at the same time: more than the sum of the parts.
Historically, people have always categorised what they do: often there’s a moral judgement (good/bad things to do) or a social expectation (things children do v things older people do). When people are sick, there’s a focus on doing things that make you better, and things that don’t. One of the most frustrating things about my vasculitis was that it didn’t matter what I did: I could not stop the vasculitis. Early on, I discovered that rest helped significantly with pain, but this was an all out, not moving, kind of rest. I was disconcerted by that. As an occupational therapist, I felt my theories had let me down. I believed that survival was all about what we do, yet I had been reduced to taking pills and sleeping to survive, and still the disease marched on. When the prednisolone and chemotherapy started to work, I found I could not do things like I used to.
Many people have tried to categorise occupations or activities. You’ll see it now in efforts to promote more activity to reduce obesity: there are different categories of “exercise” with some rather patronisingly saying that even housework counts (although not so much of course). This simplistic way of viewing occupations is very irritating to occupational therapists, who analyse what people do in great detail to understand the difficulties. Yet they too have shortcuts and categories, such as self-care, productivity and leisure, to make the job easier. I rejected those categories long ago as gendered and neoliberal, but that’s another story. I’ve been very influenced by the work of Wilcock (2006) and her distinction between activity and rest. It underpins my Rest:Do Days. Rest is restoring and refreshing, preparing you for the next activity. Activities can also be refreshing, because of the sense of achievement, but also draining, because you’re making active use of many of your capacities. So the distinctions are in the purpose and the qualities of the occupations, or what you do: it’s what you’re trying to achieve (function) and how you’re doing it (form) that is important.
Let me know what you think about all this: I’m very interested to know.
Wilcock A (2006) An occupational perspective of health. 2nd edition. Slack: Thoroughfare, NJ. (there is a later edition of this book, but this is the one I know best).