One of the cornerstones of living well with ME/CFS is getting your rests right – certainly, that’s what was true for me. When I did get my rests right, I had moments when I felt ‘okay’ – when my brain fog was less and when I felt even normal. Those moments may well have been brief but oh, what a delight! Those moments felt SO good, I started to look for more ways to rest well so, over several years, I ended up with lots of guidelines or rules. I didn’t always follow my ‘rules of rest’ all of the time but when I did it definitely made a difference.
Ali’s Rules of Rest:
- Take more rest more often. Take more rest more often. This became a bit of a mantra for me because it seemed SO important but so easy to forget. I found it worked best to work out how many hours of rest I needed in a day, to divide the total into twenty or thirty minute rests, and to then take them spread throughout the day.
- Lie down in the quiet to rest. Anything else – talking, watching tv, reading, internet surfing, sitting – felt like an activity to me.
- Do what you can to relax. I downloaded a variety of meditations and relaxation recordings so as to not get bored. Nature sounds were good too, but I found that podcasts or audio books would keep my mind too busy. Not what I wanted!
- Rest before you get tired. I love what this rule gave me: moments of sanity, moments of feeling well. A real relief amongst all the difficulties of a ME/CFS life. It takes a lot of total rest (perhaps three to four times what you’re already taking), some discipline and, possibly, a number of weeks before you get results but it was definitely worth it for me. I used to think if my body gets overtired it’s got to then put a lot of energy in recovery – better to make sure it doesn’t have too.
- Be consistent. After a major relapse, I was desperate to get back to my old ‘ME/CFS’ life. I knew rest was important and it made sense to me that the more consistent I could be, the more effective resting would be. Every time I thought of missing a rest, I found myself saying ‘I want to improve; I do better with rests; I’d better have this rest.’ If I still ended up not having a rest, I’d use the fact I felt worse next time I dithered: ‘Remember how I felt last time.’ I didn’t know at the time but consistency is one of the key characteristics of people who have learnt to live well with ME/CFS. It made a big, big difference to me.
- Value yourself, value your rests. For quite a few years, I found it really difficult to put rests as a high priority: other people’s and household needs came before mine. Then gradually – helped by counselling – I started to see myself and my needs as important. Without even focusing on it, I became more insistent – and consistent – about my rests. It was a very subtle change but looking back I can see what a difference valuing myself – when I was able to – made to me.
- Watch out for what the voices in your head are telling you. I used to frequently tell myself – as I was resting – ‘I shouldn’t be tired’ or ‘I shouldn’t need this much rest.’ Or when I was thinking of having a rest ‘You can’t stop now.’ Saying instead: ‘Ali, you’ve got chronic fatigue syndrome. Of course, you need to rest’ seemed to help. Other good ones are: ‘It’s good to rest,’ ‘It’s safe to rest,’ and my favourite ‘I do better with plenty of rests.’
- Overcome any barriers that stop you resting. The first time I laid down for a rest rather than collapsing in a chair was a revelation to me: I felt so much better! This gave me the motivation to rest more, but I kept coming up against barriers. Over time, I unpicked quite a few of those blockages – many of my rules result from that ‘unpicking.’ So when I needed to adjust to a whole new level of resting after a major relapse, I was able to do so. I don’t think I could have done this without the attention I’d paid to ‘What’s stopping me rest?’ over the years.
- Experiment. I’d never thought of experimenting until I did the CFIDS & Fibromyalgia Self-Help Program. One of my experiments was taking more rests than I thought I needed for a week and seeing how I felt. (Better). Other ones were: resting on my back; trying different relaxation recordings; using pre-emptive rests. The idea is to try something for a week and then review.
- Cultivate an environment of ‘being.’ The days I needed to rest the most were often the days I was ‘doing’ the most. But it was on these days that resting was the hardest: my mind was buzzing, or I wanted to keep going and going. I had lost sense of any balance between doing and being. In the end, I found if I limited the maximum time I was doing head stuff, did things slowly and intermingled both manual activities such as tidying up and relaxing (or ‘being’) with any ‘doing,’ my rests happened much more easily: the transition from being up and active to resting became simpler. Sometimes this still wasn’t enough and then I knew I needed a break of a day or so from any ‘doing’ in addition to my regular days off.
- Get yourself a sofa that’s long enough for you to lie on. My house is quiet during the day so when it was too cold or wet outside, I’d rest on the sofa, to segregate the day from the night.
- Don’t go to sleep when you rest. This was drummed into me from early on in my ME/CFS journey, but everything I read about looking after your night-time sleep supports this. Plus, it’s pretty hard to get to sleep in twenty minutes with a souped-up ME/CFS mind! If you are sleeping during the day, you may want to wean yourself off your sleeping rests slowly and cautiously. I know how anxious I could get if I didn’t get my rest so I’m guessing that this might be even truer, if you rely on a snooze.
- Rest outside as much as possible. I admit I am a bit of an outdoor freak but by using heated up wheat bags and blankets, I had my rests outside for much of the UK winter when my ME/CFS was at its worst. I found I do better outside; you may find the same is true for you too.
- Get comfortable resting anywhere. It took me a few years but, in the end, I decided my need to lie down was more important than any embarrassment!
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- Use a meditation timer app to know when your rest is finished: I didn’t mind being ‘woken’ up by such a pleasant sound.
- Use your rest time and up time as a way of knowing your energy envelope. When my ME/CFS was at its worst, I was desperate to improve but I just couldn’t see how to do it in a controlled way. Then, when I started to manage both my down time and my up time, I had a eureka moment. Each week, I would set those times. See how I did for that week and then – if the week had gone well, either increase my up time or decrease my down time by a small percentage. This gave me a handle on how to slowly manage to do more. It did rely on the activities I did when I was up all being pretty similar though. If anything was too draining, I just made sure I didn’t spend long on it.
- Don’t be rigid with your rest times. If I thought ‘Oh, I’ll keep going until 11 a.m.,’ I would focus on getting to that time rather than paying attention to how tired I was. I did better when I didn’t do this.
- Get as comfortable as possible. I used to take the sofa cushions out to the garden so I could relax more deeply. Some people with ME/CFS find an eye mask helps.
- Don’t rest for more than twenty to thirty minutes. This advice was mentioned in those dreaded NICE guidelines, but the only reason I could find for it, is that people get too restless if it’s longer. As that was true for me and most of my meditations are that length, I stuck with this. If I felt I needed an extra long rest, I would try to move every twenty to thirty minutes or so by turning over. It seems to me that as our bodies are designed to move, whatever movement we can manage – however small – will help. I didn’t think of it at the time, but I wished I’d tried sitting up for ten minutes every thirty for those extra long rests. I think it would have been more effective – and more relaxing.
- Try a different way of resting if you feel too restless. When I was having four or five hours of rest a day, I always got restless at some point. I used to then lie downstairs in the midst of things rather than in the quiet. Other suggestions are getting up for ten minutes, and then lying down again; or doing something relaxing such as bath, having a hot drink and then trying to rest again. Sometimes, I would lie there getting annoyed with the relaxation recording I was listening to as it told me to ‘Relax deeply.’ I’d either get up or I’d switch to one with less pressure: mindfulness ones are good for this.
- Change what you’re doing if something is stopping you having rests when you need them, especially if it’s a regular occurrence. After a couple of years of working one long day with insufficient rests, I finally accepted that it was still affecting my fatigue level two days later and I needed to make a change. Two short work days gave me better control over my rests again.
- Get into routines so you don’t need to decide whether it’s time to rest or not. It was hard to make decisions when I had brain fog (because I needed a rest!) and hard to rely on ‘willpower.’ Routines helped me make it happen.
- Needing to rebel against these routines? Do so, knowing you can start again tomorrow. The discipline needed for having a good schedule of rests sometimes felt too much, especially in the evenings. I would then switch to gentle puttering or sitting to rest so as to give myself a breather for a couple of hours. It was easier to get back on track when I was accepting and relaxed above it.
- Think ‘I can have more tomorrow’ when you don’t get your normal number of rests. This would stop me panicking!
- Step gently as you change how you have your rests. My rests felt like a security blanket at times – the main way I was managing my ME/CFS. It felt too frightening to make big changes so I was cautious about any changes I made.
- Try different lying positions. If I laid on my back (with something below my knees), my body could really, really relax. I would do this occasionally but mostly I lay on my side because emotionally it felt better. Rests were my sanctuary, my safe time when I left the world behind and lying on my side helped me to feel this.
- If you work, make sure you have a lie down at lunchtime, however short your lunch break is. I used to fit a fifteen-minute lie down into a thirty-minute break. I just felt I was putting my body under too much pressure otherwise.
- If you’re having a bad day, have more rests. This felt better than my normal habit of repeatedly thinking ‘I shouldn’t be having a bad day.’
- Don’t mess about with the timings too often. I would review my rests once a week. Whenever I got carried away and changed the timings mid-week, I ran into problems!
- Use pre-emptive rests for when you’ve got something ‘big’ coming up. When I had an event coming up that I knew would stretch my energy I would make sure I took extra rests beforehand. These rests meant I felt more confident that I could handle the situation.
- Keep to your rest schedule even on a good day: just enjoy that all those rests are working. This caught me out so many times, but by reminding myself of experiences when I hadn’t rested, I did – eventually – learn this.
- Don’t forget to plan to fit your extra rests in when you have coming up. I used to write down the timings of my rests whenever I had something out of the house to make sure all my rests fit in, they were so important to me.
- Take responsibility for your rests. These are the ‘rules’ that worked for me, these are the rules I owned and followed. I read up about resting, I experimented and if I didn’t agree with somebody’s view, I tried to get a sense of their thinking. But most importantly, I created a way of resting well that worked for me, that benefited me. Feel free to take any or all of my ‘rules‘ but don’t forget to make them your own! Good luck. something out of the ordinary
Ali Kempson blogs at Living an Everyday Kind of Life, aiming to give practical and emotional support to those looking to live well with ME/CFS. After many years of mild ME/CFS, Ali’s health deteriorated in October 2016 after a major relapse. In her desperation to get her old, ‘half-decent’ ME/CFS life back, Ali started to really learn what helped her ME/CFS. The decision to try an alternative therapy, called Eden Energy Medicine, was a life changer as by May 2017 Ali had recovered. She continues well to this day. Ali is happy to answer any questions you might have via her blog or Facebook