Pacing and me

It seems impossible to talk about managing M.E. without a discussion of pacing. Since I’m early on in my blogging journey and M.E. recovery, now feels like a good time to talk about it.

The life I live now is built around pacing and is far removed from the way I lived my life a few years ago. I was always completely driven and active. I was a perfectionist and an overachiever. I still have these characteristics- it’s my personality. However, they’re not compatible with M.E., so I really have to keep these traits in check to manage my condition. I’d power through at work for hours without a break, go to the gym every evening, stay up late, get up early and I’d fill every minute with some kind of activity. If I had a spare hour I’d bake a cake, alphabetise my CDs, or sort out my wardrobe. I’d find things to do that weren’t necessary.

In order to be happy I felt as though I had to achieve something every day. Long before I was diagnosed by mum often said to me “the thing you can achieve today is relaxation”, aware of the manic way I lived my life. I’d rush from place to place (always late due to cramming in too much). I was aware this probably wasn’t a healthy approach to life, but I was young, felt fine and thought I was happy to be that way.

Interestingly, people with an overachiever personality are often cited as being more likely to suffer from M.E. The tendency to drive ourselves hard is a common theme amongst suffers. On the surface we appear strong, focused and capable, naturally able to excel at whatever we do. However, we’re also highly sensitive- physically and emotionally.

Pacing is a fundamental component of managing M.E. It is about balancing activity and rest to help manage the condition and aid recovery. Totally the opposite of what I’ve described above. My previous life and overachieving personality, amongst other traits, certainly aren’t conducive to pacing. Pacing is what my former self would have been absolutely horrified by. It goes against my personality and how I had functioned for over 30 years.

Consequently, incorporating pacing into my life has been incredibly challenging. When I was diagnosed with M.E. I was already suffering with HMS and had built many elements of pacing into my life. But, I was still in a cycle of ‘boom’ and ‘bust’. On days when I felt my version of ‘good’ I’d run around at a thousand miles an hour, excited at the prospect of getting things done. The overachieving perfectionist would return. The result- a setback and several days in bed afterwards.  After a little while of learning the hard way, the diagnosis of M.E. really stressed the importance to me that I needed to change my ways. I’ve essentially had to change how I operate and make conscious decisions every day about what I do and how I do it.

In order to pace I follow several approaches. I now assess what I need to do each day which is essential. If it’s a day where I’m not feeling too good then everything that isn’t essential has to wait. I have to take regular breaks, be it at work or home, and I manage my diary really carefully. I’m lucky to be in a position where I can work from home a few days a week. Otherwise I’d be unable to work full-time. However, the days I am in the office I have a long commute. If it’s a day when I’m in the office then I won’t plan anything that evening. Also, I rarely do more than one social activity a week- talking to people makes me really tired. If I have a day where I’m active or sociable then I’ll plan a rest day the next day.

I factor in some time each day for relaxation. Usually this is meditation which I find really helpful. In the past I tensed up at the word relaxation. Now I find myself excited about that period in the day when I get to relax. It’s as normal as brushing my teeth. I try not to relax by watching the TV or reading a book as the mind is still too active. I just take some time out for the mind to switch off.

Critically, I’ve learnt to say no. I don’t know if it’s getting older or because I feel too ill to care what people think but I only do things now that I feel comfortable with and want to do. I used to spend far too much time pleasing others. Now, the times I feel well enough to see friends or be out and about are precious. I have to pick and choose what I can and want to do. If I’m feeling OK to doing something then I’m certainly not going to waste energy with people I don’t want to be around or doing something I don’t enjoy.

I’ve also learnt to adapt to situations and make them work better for me. In the past I would have people round for dinner on a regular basis. I’d spend two hours cleaning the house and then produce a 3 course homemade meal and then spend several hours entertaining, leaving me completely devoid of energy. Now, people get invited around for a cup of tea and a slice of shop bought cake. Perhaps a takeaway if they’re lucky! I’ve learned to accept that my idea of perfect doesn’t work for me anymore and it’s about spending time with people and doing things that work in the current circumstances. I enjoy myself just as much, if not more, that way.

One of the hardest things about pacing is that it actually involves stopping yourself when you still feel OK. I was advised by health professionals to operate to 70% of my energy capacity. First of all, I’m not even sure how to quantify what 70% of this is. And secondly, it’s really difficult when you’re actually enjoying something for the first time in a while to think “I need to stop now in case I feel ill tomorrow”. This is something I think will take a while to get to grips with.

All of this in itself is exhausting. However, irrelevant of my M.E. I now feel like this is a much more healthy and sustainable way to live my life. Isn’t it just good sense? I’m by no means at a point where my pacing is perfect and I still feel really unwell far more often than I feel OK. But, I’m learning to prioritise myself and what I’m capable of in the hope that over time this will help me recover.  I still have good weeks and bad weeks. Some weeks I feel disappointed to be missing out or that I’ve taken on too much. Other weeks I feel like I’ve got the balance right. For now that’s good enough for me. Unlike my inflexible and uptight previous self, I’m learning to go with the flow.