*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!