It’s been quite a while since I posted anything on my log page. The simple reason for that is that I’ve been practicing exactly what this post is about. It’s taken every ounce of will power I have to not work through everything on my to do list each week. Which has meant that this post has been on that list for about 3 weeks. However I have now reached a bit of a lull with things that I need to do for the business side of Breakfast&ME so finally I can give some time to my blog.
I first came across the term pacing when I started to research Chronic Fatigue 6 years ago. It was written about alongside GET and CBT as the staple management tool for fatigue. To be honest it didn’t make much sense to me until I attended my first fatigue course which was run by Velindre – the hospital where I’d received my cancer treatment. They gave us activity diaries so that we could highlight the type of activity we were doing – whether it demanded a lot of energy plus what sort of energy we were using. After completing a diary for a week great big blocks of red showed up on my diary – high energy use, with very little green – low energy use/resting. It also became clear that the activities that used up the most energy for me were cognitive. Using this information I was able to start tweaking my activity. Spreading high level activity throughout the day and swapping between physical activity – which I found easier – and cognitive activity. At this stage this certainly helped. However, although I reorganised things to an extent, what I didn’t do was stop activity that was draining me altogether. So after an initial improvement things kind of plateaued again.
For the next 2 years I practiced a very haphazard kind of pacing. In work it was impossible to follow. A classroom of 30 6 year olds is not the right environment to spend time thinking about whether the activity you’re about to do is going to drain you or uses physical or cognitive energy. At home I tried to stop activities before my body started to protest and tried to swap the type of activity I was doing but it didn’t really work. My priority was still being a mum and a teacher. Managing the fatigue took a back seat which meant boom and bust (periods of over activity followed by periods of increased symptoms) were common. In 2014 I was referred to a Macmillan Psychologist for help with the fatigue. It became pretty clear during these sessions that managing the fatigue just wasn’t happening whilst I continued to try to balance work and a family life. I knew it but I didn’t really accept it.
In October 2015 pacing took on a new meaning for me after I attended a residential programme. I’ve already written about this being the point that I accepted the fatigue as part of my life. It was also after this course that pacing became a central part of my fatigue management. Most of my pacing practice came from information in the course pack. We didn’t actually cover it in much detail on the course but what I did take away was that despite the fatigue I still performed all of my activity at top speed. I can remember walking down the drive of the centre on the way for a walk and one of the course practitioners driving past and shouting at me and my friend to slow down! In the weeks after the course I dropped my activity right down. I worked out my baseline for my main activities – how long I could perform an activity for without fatigue symptoms kicking in. This in itself was complex and involved repeating tasks over a number of days and working out averages. So I maybe worked out that I could clean for 6 minutes without symptoms, walk for 4 minutes without symptoms and read for 3 minutes without symptoms. I’d stick to these times – my baseline – and then after 7 – 10 days would increase the baseline by 10%.
Maybe if I’d been doing this with support it might’ve worked better for me – but to be honest all it ended up doing was stressing me out. I felt like I was constantly clock watching and that my system was constantly on high alert. I recorded my current baseline times on a blackboard in the kitchen. If I went over my baseline for an activity I’d be anxious about the symptoms kicking in. I can even remember my first ‘trip’ out whilst pacing. I think my limit for walking was about 7 minutes and I went to a local town. I got out of the car walked for 7 minutes and ended up half way down the high street. I had no clue what to do then . Did I find a seat and rest? Push on through my baseline to get back to the car? Sit on the pavement?! I think it was at this point that I realised that pacing in this form just wasn’t helping. I felt like I was constantly swapping from one activity to another and it was doing nothing to help the fatigue and was making me over vigilant and anxious.
So after this I went back to my own form of pacing – which basically meant listening to my body, not carrying out 2 similar activities back to back and trying to rest more. I noticed an improvement in my ability to carry out physical activities – I could walk for longer but to be honest anything that involved cognitive energy use remained as hard as ever.
After attending the OHC 90 day programme I realised that they have a very different take on pacing. They talk about finding your baseline although not in as structured a way. Just listening to your body and recognising how long you can do an activity for. Increasing your activity from this baseline they refer to as bouncing the boundaries – when you push things a little but continue to listen to your body and if necessary go back to your baseline. They are also very clear that pacing, whilst being useful at certain later points of recovery, is not something to try when your body just needs rest. Plus that being too rigid with pacing can simply keep your body in a stress state. I think this is what happened to me – it was the right time for me to introduce pacing but the way I did it was too regimented and just increased my anxiety levels.
Pacing has to work for you and can’t just be taken from a handout and transferred in the same way to every person who has CFS/ME. It has to be done at the right time and in the right way and if you get to the point when it’s all you’re thinking about you’re gone too far with it! For me it is definitely more effective when I use it more loosely. My form of pacing has now evolved into thinking about the type of energy I’m using, trying to listen to my body so that I stop an activity before I get increased symptoms and thinking about the environment I’m in. Choosing to have coffee with a friend in a quiet café or outside is more effective for me than clock watching. I rarely check my watch before I go out for a walk now – I just listen out for the slight increase in symptoms which indicates that I’ve done enough. Some days I think I haven’t paced at all but then realise that it’s actually become second nature to me. I don’t always get it right but it’s always there in some shape or form.