Warning: this post is pretty lengthy but it is broken up into manageable chunks. So, if you fancy a brew, make it, toilet stop, go and quickly(!), a KitKat, go eat one. I really won’t be offended if you dip in and out of this, or any of my posts for that matter. Pace yourself and you’ll feel better for it.
What on earth is pacing?!
I first became aware of this term during an Occupational Health (OH) appointment back in early February. I had explained how I was struggling with work and failing to cope with my increasing fatigue levels. The OH therapist suggested I look into pacing.
I’ll be honest, it was quite difficult to find anything I deemed relevant when I did not have any form of diagnosis so I googled something like ‘pacing + fatigue’. Still, there weren’t many relevant hits and I had to search through some strange and completely irrelevant information (take me back to having to use a library when we didn’t have internet!!). Anyway, eventually I found a useful booklet (see links) which has become my go-to booklet.
I’ve come to understand that the two tried and tested methods of a higher recovery rate from CFS/ME is through pacing and CBT (Cognitive Behavioural Therapy).
Let’s break it down
In its most basic form it is:
- Dividing up your day into manageable activities and rest periods;
- Separating these activities into mental and physical activities (every activity uses energy);
- Separating these activities as such: mental-physical-mental-physical with rest periods in between;
- Finding your ‘baseline’: this is what you can do even on a bad day – work out what you can and cannot do every day and then set this limit at less than that;
- Increase your baseline by no more than 1% each time;
- Not doing anything is worse than doing very little;
- Have a bedtime routine: go to bed and get up at the same time every day even when you feel well enough to stay up or ill enough to want to stay in bed;
- Resting = complete rest from anything and everything; phone, TV, talking, noise, bright lights etc.
Ultimately, do not compare what you used to be able to do with what you can do now.
Everyone is a battery
The easiest way to describe pacing in relation to energy levels is to liken yourself to a mobile phone battery. At 80% battery life it will take less time to charge than at 20% battery life. Thus, if you keep topping up your energy levels through productive rest periods when you need them you will be able to do more (if you have energy in the first place) and will be less likely to collapse from exhaustion at the end of the day. Although this is still possible.
Starting a log
Ultimately for this method to be most successful, you must be committed to this method as it can help you manage your condition. That last point stuck with me like a bee to honey and so began my dedication to pacing.
After having spent a week writing a diary style log in a notebook with a black pen, I realised that it used up valuable energy to decipher and quite frankly I often didn’t have the motivation. ‘The dedication is lost after only a week’ I hear you cry. Fear not for I bought a diary! A 7-day diary with times in half-hour time slots from 8am to 8pm. Amazing. And those 4 coloured pens that I love but think are too expensive to buy. Well, now I had an excellent reason and I found a great deal so I bought 1 black, blue, green and red pen and 1 light blue, light green, pink and purple pen!! Oh, and the pack included a mini version of each too which are super for carrying around during the day. Stationary heaven.
Finding a balance. Finding my baseline.
However, you need to find a balance and that is easier said than done. It really does take dedication. I started to write a daily log to record my activities, fatigue and pain levels, with different colours relating to activity level and activity type. Three weeks on and I am still writing it. I’m beginning to gain a picture of which activities tire me the most or the quickest and how long I may need to rest depending on how tired I become. Ultimately it is enabling me to tune into my body, being more aware of how I am feeling and why.
For example, teaching is ‘red’ due to the mental, physical and emotional energy I expend during a 50 minute lesson. Two lessons in a row would increase this and there is no chance for a rest period. I can just about manage with this now as I am beginning to find strategies to expend less energy during a lesson.
Reading is ‘green’ because I can read for a long time without feeling tired quickly. However, I am finding that if I read after having completed one or two previous ‘green’ activities without a rest I am unable to read for as long as if I had rested beforehand. I now understand that when I begin to forget what I have just read or am unable to concentrate on what I am reading I need to put the book down and rest. I’ve reached my limit.
I also know that my baseline for a walk is 20 minutes. That’s a walk around the block. If I am honest I haven’t moved past this yet because I’ve also started working with a personal trainer so I am also doing strength training every other day (a post will follow about this).
If you can’t manage the whole activity in one go, break it up. So, empty the dishwasher, rest, then load it if it needs loading. Similarly, if you live with someone and they can help out more, communicate with them about your needs. If it means it’ll help you manage your illness I hope they won’t say no. My husband is a saint and he does all the housework, no questions asked. I didn’t even need to broach it with him. However, now I am having more ‘good’ days than ‘bad’ we’ve discussed which household tasks I could try that wouldn’t tire me out too much that it will put me off trying in the future or mean I can’t do anything afterwards for 24 hours. We’ve decided I’ll start to clean the bathroom again (joy!) or perhaps vacuum downstairs as it’s all hardwood flooring. Again, I may need to break these activities up into manageable chunks.
A little frustrating
It is frustrating at times as I now have to live my life in bitesize chunks in order to manage a day. Weekends are more relaxed now to allow me time to recharge. However I am finding that the better I pace during the week, the more I can manage at the weekend. That was a very happy moment when I realised this. Yet there are so many contributory factors to changing fatigue levels that there have been moments where I have felt more fatigued and in pain but couldn’t explain why because I had paced myself well over the previous few days. Thus, however dedicated I am I know that there will be moments, days, perhaps even a week or more when I will relapse and have to return to my ‘baseline’.
An alternative viewpoint on life
Alternatively, it is quite refreshing. Before I as ill I would write lengthy ‘to do’ lists and admonish myself for not achieving every task regardless of whether it was achievable to complete every task in one day in the first place. Now, I write 3 activities that I would to complete. Maximum.
This stems from the idea of breaking up activities into 3 categories of need, should and could. I can’t remember where I read this but it was from a book, perhaps one on my links page.
Need = I have to do it or there will be repercussions, such as paying a bill or making an appointment;
Should = I should do it but someone else can complete that activity. Only complete this if you have completed your ‘need’ activities first and have not reached too high in your fatigue level.
Could = really does not have to be done, no one will suffer if this is not completed.
If I am having a ‘bad’ day I might write 2 ‘need’ activities; if it’s a super ‘bad’ day then there will be 1 ‘need’ activity on my list. Remember, baseline!
The benefits of the log
It is from writing my log than I am understanding which activities I can complete on which days. For example, Monday Week A (school timetable is fortnightly), I have 3 lessons in a row (the middle one is sixth form which gives me a kind of break). So, on a Monday my ‘need‘ activities could be to ring someone about something (this will be a short conversation), to check a bill has been paid and to put the washing away. They are ‘green’ activities for me and however high my fatigue levels after returning from school, I know I can still complete them.
Wow, she can do a lot
For anyone reading this with a chronic illness of some sort, you may be thinking that I can accomplish a lot. Remember, everyone with CFS is on a kind of spectrum, much like people with Autism or Depression. Everyone with CFS has a different baseline from which to start and thus their ability to complete certain tasks each day. On reflection I think it could be partly because for 6 months I believed I had glandular fever so I continued to add more onto my workload despite my declining health and increasing fatigue levels. Yes, I was extremely tired but perhaps this built up my stamina somewhat. Conversely, this could have caused a relapse, setting me back to when I could not achieve anything aside from shower and eat each day. Or perhaps it is because before last summer I was fit and healthy and rarely became ill. I don’t really know and am not sure I ever will. What I do know is that this pacing method seems to be working at the moment as I feel that I am managing my symptoms and fatigue levels which is certainly a step in the right direction.
This is getting quite long so I am going to stop in a moment.
I just want to add that I hope that this explanation on pacing alongside what it means for me day-to-day has helped inform you further. It is an continuous learning curve for me and will be for you or anyone else you know with a chronic illness such as CFS/ME (but who doesn’t love learning…apart from most school age pupils!). I hope that by breaking it up into manageable chunks you are able to return to this post as and when you feel able if screen time really tires you.
Lastly, I want to add that all of the above I have learned from reading books or online pdfs from websites dedicated to CFS/ME (see links page). I have not gained any of it from seeking medical professional advice. I have spoken to my GP about it who praised me at how proactive I am being to try to manage this, but he is not a specialist in this field.
Thank you for taking the time to read this. Any comment are welcome below, I’d love to hear how you are getting on with pacing and how this post has helped.