Tuesday, 11 March 2014

A patient's guide to pacing

*None of the information given (anywhere on this blog) constitutes medical advice, I'm simply speaking from personal experience as a patient.*

Along with many others I advocate pacing to help to manage symptoms, but what exactly is meant by this?

In a non-ME/CFS context, people regularly refer to 'pacing themselves' when they are holding back from rushing in and doing everything all at once. They are spreading things out to make the workload more manageable/less overwhelming.

In it's simplest form, pacing to help with ME/CFS (or other fatiguing chronic illnesses) is just the same. The sufferer listens to their body and spreads out activities over multiple days, and takes things at a manageable pace.

However, pacing can also refer to what I call 'strict pacing'. This is what is often recommended to patients to supposedly enable them to control their symptoms better.

Pacing can seem like a benign idea, but strict pacing can totally take over and dictate your life. Let me explain..

In strict pacing, different activity levels are allocated different colours. I used blue for sleep, green for complete rest, yellow for low intensity activity and red for high intensity activity. What falls under these brackets is entirely individual.

Back when I was significantly healthier red was for walking anywhere, studying/lectures, getting showered and dressed in a rush in the morning etc. Yellow was watching TV or chatting or being on the Internet etc. Green was lying in bed doing absolutely nothing, properly resting, listening to either a relaxation track or possibly some music, sometimes I stretched this to include snacking (it makes rest time more bearable!).

When I filled in my first activity diary (colouring in a box for each hour of each day) it was clear that my sleep was disordered (I personally did a dotted line in blue for when I was attempting sleep but was awake)- I was awake late into the night and sleeping into the day or napping if I had had to go to a lecture etc. It also showed that I had a lot of yellow time, and initially, no real rest (green).

In each category, the different activities tended to be a fairly standard intensity, so I used times that I tried to abide by for each colour. For example, I think I started with about 5 hours red (high-intensity) time and 1 hour green (rest) time per day, aimed for 8 hours of (ideally night-time) sleep, and everything else could be yellow. Once I relapsed the levels became 3 hours of red and 3 hours green. You work these out by adding up all the hours of each colour you did in a week pre-pacing and then dividing this by 7. This helps the activity to be spread across every day instead of being concentrated in a few. This level can then be adjusted if it feels too high or low (but remember you shouldn't be massively pushing your limits) once pacing begins.

When I first started pacing, I used to plan each day out in advance, a week at a time, colour-coding hour boxes according to activity-intensity, planning in rest and everything I needed to get done each day. I would write: Shower and dressed (red dot), Uni (red dot), rest (green dot), TV (yellow dot) etc, so down the page I would have the column with hours, the column of activities and then a column of coloured dots, which would add up to the number of hours of each colour planned.

If abilities reduce during a flare or relapse, high-energy activities can be cut back and/or rest can be increased. This helps to reduce aggravation of symptoms but maintains some level of functioning. It's a conscious decision based on what you feel capable of. After a relapse levels may need to be changed fairly long-term. After a flare, it may be possible to jump back to previous levels, or it may need to be a gradual process.

If the condition improves, high-energy activity can be increased (possibly requiring an increase in rest too), or rest can be cut back. Notice this is *not* an and/or, just an or- do one or the other at a time. Allow time to adjust, then make another change as appropriate.

Once making increases, this enters the realms of Graded Exercise Therapy. Never increase activity by more that 10% each week- so 10 mins becomes 11 mins. Step back down as required- small flares in symptoms are to be expected with increases, but these shouldn't be such that they interfere with being able to do everything as planned. If symptoms flare significantly, step activity back down to the previous level.

Another important concept in pacing is breaking up each activity. Do a tiny amount at a time. Take regular rest breaks. Don't push through to finish something once you start, you'll feel much better at the end of the activity if you pace and take regular breaks rather than crashing having got it done.

Pacing needs to take into account physical, cognitive and emotional activity. These all impact on one another and use up the same finite energy. If you are upset, this is a high-intensity activity, and may mean you need to reduce the amount you walk that day, for example.

Pacing can help to explain to others in some circumstances. For example, explaining to my university department that I was pacing and had limited amount of high-energy activity, and I had had to reduce this significantly due to a relapse, helped to explain my need for an extension on coursework, whilst also demonstrating maturity and control. Explaining to friends that you can't go out, because you have already got too much on that day, rather than because you are busy at the time, becomes easier.

Sometimes, life isn't as rigid and planned a pacing presumes. Sometimes you have to make last-minute changes to your plan. Sometimes something unexpected comes up that simply cannot be ignored. If this happens then this should be calmly dealt with, other activities that day should be reduced/rescheduled if possible, extra rest scheduled if possible and if one day ends up using up more energy than normally allocated, demands the next day should be reduced if at all possible.

To pace strictly, decisions have to be made about priorities, and things often do have to be repeatedly put off (depending on ability level). Often decisions have to be made between one activity or another, because both would be too much, or would not allow enough rest time. Sometimes standards have to be dropped- is showering and dressing necessary today? Can the house go another day/week/month without being dusted/hoovered? Does the bedding need changing today? Is enough energy left for cooking or is a takeaway/ready meal needed? Can someone else do this to save me? It's important to look at what is really important to get done and where energy is being wasted unnecessarily.

With time you learn to adopt a more relaxed approach, but hopefully still abide by a lot of the principles. Everything just doesn't have to be written out, colour-coded and calculated any more. Obviously if the highly structured approach helps you and works for you, then there's no reason to stop!

Pacing is needed to avoid the push-crash cycle those with ME/CFS know all too well. We push ourselves to do something beyond our limitations and then suffer the consequences. But I don't always see that as a complete negative, if it helps to improve quality of life.

This is where it becomes tricky. Do I think pacing is a good tool to manage symptoms? Yes. But I also think it is restrictive and dictating. I felt that I had no spontaneity in my life when I was pacing strictly. I was having to turn things down simply because it didn't fit with my schedule. My pacing schedule became the enemy in a way. It felt like it was that holding me back as opposed to the illness. The illness didn't stop me having a long, fun day out with friends, the pacing plan did, and I found that hard to understand and accept.

Pacing is a management strategy. It is not a cure. If it was a cure, I would happily rigidly pace to make myself better, but strict pacing made me feel trapped. A more relaxed approach worked better for me personally. I tried to spread things out, but had the occasional day pushing things and then rested more (yes, ok, crashed) afterwards- but those days made me happy, and I think that's important too.

I've learnt a lot from pacing, particularly the importance of good quality rest, and I would encourage everyone to get a proper idea of what their weeks look like mapped out according to activity-intensity. It's a good way to educate yourself and sometimes helps to see a way forwards.

I'm now significantly more ill/debilitated and it becomes difficult to see a way to pace. Every time I leave the house now, it will inevitably cause a crash, but that doesn't mean I will opt to stay in my house all the time. Bathing and washing my hair is also beyond my limits and flares symptoms, but it doesn't mean it isn't necessary, even if I have had to accept a dramatic reduction in frequency. I do need to look at my current routine and see whether I can make any improvements though, particularly to make me feel like I'm living rather than just surviving, but my limits are such that identifying suitable activities is difficult. I spoke to my CFS team psychologist recently and she said it was good to think about a routine and reading some of Fighting Fatigue (by Sue Pemberton) might be a good place to start once I'm well enough, but for now she seems happy for me to just give it some thought. I'm not really well enough to be introducing much in the way of activity at the moment, but I'm going to give it all some thought at least. I just want to feel a bit more productive and want to feel satisfied that I've achieved something at the end of the day.

I hope this information is helpful to some. I would like to reiterate that I am *not a doctor* and this is *not* professional advice, it is simply what I have come to learn through being a patient.


My pacing plan when I was on around 5 hours red (high energy activity) and 2 hours green (rest) per day. Apologies for the hand-writing and yes it is rather Uni-focused.. The joys of being a chronically ill student I'm afraid!



Below is how I went on to plan my weeks- it's on an app called MiWeek, it was free on the iTunes Store when I downloaded it.. I assume it still is but haven't checked.. You just change the colour of the dots and they light up as each hour of the week passes. It's quite easy and I found it an easier way of doing things. I was on 4 hours green and 3-4 hours red per day at the time. Wed-Fri just hadn't been planned yet in this pic by the way- I hadn't scheduled my rest times for those days yet, it doesn't mean I didn't rest!

19 comments:

  1. Wow, what a mammoth (but useful) post, I hope you paced yourself whilst writing it! I like the idea of making a colour coded diary/chart, I've been given various diaries in the past through the occupational therapist but they were confusing to look back on so they didn't really help with monitoring activity and rest. I must admit, on a good day when I get on a roll with something (like writing a blog post or organising things, I still find it hard to stop and take a breather. Thanks for writing this Jess, I appreciate it probably took quite a lot of energy to get it written out! xx Hayley-Eszti

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    1. Haha, it is rather long (not very ME-friendly I know!) but brevity is not my strong-point ;) Ironically I wrote this post start-to-finish without resting, but I do admit that I'm not very good at pacing right now.. Oops.I know it was difficult to get a good, clear overview of all this stuff, so I thought it might help others if I shared the knowledge and experience I have built up over the years :) I'm glad you like the idea of the way I do it- I find the colours really help. The starter-finisher issue has always been a tricky one for me too. I hate stopping mid-task, particularly when I was doing uni work, I'd just get into the flow and then would be due a rest, so I inevitably skipped them.. No worries, I hope others find it helpful :) Take care! xx

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  2. The thing about this which worries me is the lack of recognition that complete rest is the important factor here, rest is what is needed for recovery, muscular exertion is the thing we need to ration. For example, your experience of a lecture at university will be different depending whether or not your head is supported (high-backed chair, leaning against a wall) or not. If you use a wheelchair (as something to lean on and carry your books while you are walking around, you don't have to be sitting in it all the time), always use the lift, not the stairs, avoid situations where people keep you standing, find places and situations at uni where you can lie down completely between lectures, etc. you will be conserving the energy you need to keep your brain working. A focus on increasing activity levels is getting it the wrong way round - but 'complete rest' has become a dirty word in our culture. Jason has written a paper showing that if you keep your activity level within your perceived energy level over a long period, you will find an increase in what you can do, over the long term. Resting is like putting money in the bank, exertion is spending it - so shaping life around those principles, and ruthlessly cutting out unnecessary exertion is the way forward - I do hope that you can rearrange your thinking and activity levels around those principles enough to be able to manage university again, without getting sick. You do have to be ruthless.

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    1. I totally agree with you here- and thank you so much for making this point! It's taken me a long time to fully accept rest as a wholly positive thing, and to get into the mindset of finding the ways to do things that are most gentle on my body. Uni became so difficult for all the reasons you listed before I got my scooter due to reduced mobility- thankfully that then meant I always had somewhere to sit down! Thanks again for bringing this up, and it's given me some food for thought..!

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  3. Thank you for this post Jess, it's brilliant! :D And I'm completely with you about strict pacing being restrictive and dictating. When I was most ill and my pacing routine most strict, I wasn't allowed to think because it required too much energy, nor could I watch TV programmes I hadn't seen before or read a book or magazine. Obviously it was helpful to be able to do something to manage symptoms, but it is so limiting, especially as things improve and you start to be able to do more. Pacing's great but there is definitely a limit - I'm all for occasionally 'push/crash'ing or 'boom and bust'ing for the sake of our sanity! I'm keeping everything crossed and hoping for some biomedical research so that we can finally have some proper treatment and not have to rely solely on symptom management. Sending love, hugs and extra spoons! Katharine xx
    p.s. Pippin will definitely find this useful (even though I might feel a bit of a sadist subjecting him to it knowing full well how horrible it can be!)

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    1. Thanks :) And glad it's not just me who doesn't get on with strict pacing!
      "I'm keeping everything crossed and hoping for some biomedical research so that we can finally have some proper treatment and not have to rely solely on symptom management."<YES! Couldn't agree more with this!!
      Love, hugs and spoons coming back your way too! XX
      PS- give Pippin a big hug from me- so pleased he's doing well :)

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  4. This post is so helpful Jess - thank you!

    I would really appreciate it if you could take a picture of an example of this? Just to see how you put it into practice!

    emmamecfs.blogspot.co.uk

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    1. No problem- so pleased it was helpful :)

      I have updated the post with some pictures of my plans. I only put red and green dots and was on about 5 hours red, 2 green at the time. Apologies for the dodgy handwriting! And yes, the total focus on uni work at the time is a little scary...

      Hope this helps! Take care x

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  5. If one feels able, it's perfectly natural to try to do more. It isn't necessarily Graded Exercise Therapy. Graded Exercise Therapy is (generally*) based on the idea of trying to break the association between activity and symptoms, so if you increase activity and then get an increase of symptoms, you should maintain the (increased) level of activity rather than reduce to a lower level. It's a theory basically based on ignoring that there is an abnormal physical response to exercise in ME/CFS.

    *there is an Australian researcher, Wallman, who used Graded exercise with pacing that allowed decreases but that has been classed as a pacing program by some.

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    1. Thanks for your comment. I agree that in some contexts the meaning of GET is as you described- but this is, in my mind, an idiotic and dangerous approach with ME/CFS. I use the term 'GET' because it was used in the service I was in to mean what I have described. They encourage patients to tolerate a small, temporary increase in symptoms, but no more than that. Thank you for making the point though, I wouldn't want people to think I'm advocating the type of GET you describe!

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  6. Great post, particularly on explaining some of the frustrations and limitations that pacing brings. And the boredom of rest...

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    1. Thanks :) Gosh yes- rest is mind-numbingly boring!!!!

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  7. Thanks so much for using yellow or red spots writing this. I hadn't been able to figure out how to document pacing without getting exhausted. Colors is A great way to do it. I will try. I wish you happiness and better days

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    1. Glad it was helpful :) I have just updated the post again with a picture showing how I planned my days simply with coloured dots, can be an easier, quicker, less tiring way of doing it :)

      Hope this help! Thank you! Take care x

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  8. Great article ...Thanks for your great information, the contents are quiet interesting. I will be waiting for your next post.

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  9. I haven't had a lot of luck with pacing in advance, which is what I think you are talking about here (writing down what colour then sticking to it), as I found it far too much restrictive and depressing. However, I do use the app ME/CFS Diary which lets you fill in what level of activity you've been doing and then provides useful charts and graphs of the data. I generally try and make sure I rest fully each day, and then each morning check how much of each type of activity I've been doing - often I see that low energy things (such as watching TV) take up most of my time, so I try and remember to do more resting and slightly more high-energy things (such as household chores) to get a good balance.

    Since using that app I've noticed I am much better at pacing, though still struggle with the resting side of things as lying down but unable to sleep is just not fun, no matter what anyone thinks.

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    1. Thanks for your comment :) I'm glad you find ME/CFS Diary helpful- it's an app I was thinking of getting when I was pacing! It definitely sounds like you've found a more flexible method that works for you :) and I totally agree about rest- urgh! Take care x

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  10. Noting (and agreeing!) that the problem with resting is that it's boring! Off the wall suggestions - an old dog, or a cat, that will just lie there with you. I find that lying on the settee allows me to sleep happily through ITV 3 programs (Murder She Wrote, etc, opening my eyes occasionally - feels as if I have a choice!) Keeping head supported really makes such a difference, you wouldn't believe it until you try it. Derek Enlander's book 'The Power of Rest' reframes resting and elaborates on it. I believe in recliners - then 'resting' is just tipping a bit further back and maybe dropping off - for a few minutes, or hours - you can just gauge it to how you feel. If you're reading, make sure the book is supported so you're not expending muscular energy holding it up. The recliner allows various levels of rest, depending on how you feel - you can intersperse it with a bit of reading, TV watching, phone calling, laptop-writing - Also if I have a chatty phone call to make, I lie down flat while I'm talking. When a friend visits, I will also be lying down, or reclining - it is more a case of keeping constantly adjusting to 'how can I conserve muscular exertion while I am doing this'. So anything that can possibly be done lying down, make sure you lie down to do it. Etc. I think that making an ongoing habit of conserving muscular exertion while you are doing ordinary daily activities means that you are continuing to do the most necessary or the most interesting things - so that 'resting' isn't something that means you have to stop doing everything else that might be interesting and just lie there being bored. Just being in a room with other people while you are lying down (the 'recliner' approach) is better than struggling off to a lonely bedroom. It needs to be, and, with the right furniture and the right attitude, can be woven through everything you do. Resting is the nearest thing we've got to anything curative - it will help you gradually get better instead of gradually (or suddenly) making you worse. We don't know why, but our body's natural healing mechanisms can gradually push this illness away, if we conserve our energy for this purpose. Creative Resting. Aggressive Resting. Time to Lie Down and Fight....You have an absolute right to do/stop doing anything according to what is best to help you get better.

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    1. Thanks for your helpful and supportive comment. Your ideas are appreciated, and I agree that rest is vitally important!
      Take care,
      Jess x

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