How Pacing Saved Me
Without pacing I’d still be a mess right now
In August 2018 I graduated from my Masters degree, with a Distinction and the hopes of applying for a PhD to start the following Fall. I had a brand new job, in a popular graduate programme that thousands of people had applied for.
Everywhere I could see there were opportunities.
But by the start of November, I was curled up in bed barely able to shuffle the distance to the bathroom without feeling utterly broken. I spent hours watching quilting videos in Youtube, unable to actually pick up a needle and sew the designs for myself.
That supposedly fantastic job I’d snagged? I was on the sick, my doctor ordering me to rest for two weeks, as I was felled by exhaustion like I’d never felt before.
Cracks were showing everywhere in my personal life. I was struggling to keep in touch with my great friends from my college days and the job that had been lauded as every graduate’s dream was anything but. The responsibilities the snazzy job description had boasted were angled more towards people in the national center. In a small city, I had been spending most of my days on really basic admin tasks. Even if I was being horrendously overpaid for what I was doing, my self esteem was down the pan.
My rapid decline was linked to pre-existing factors, the genetic condition Ehlers-Danlos Syndrome, but I’d only once before experienced anything like this spiral of decline.
I felt hopelessly lost. I had to try and hold down my job, try and pull together a PhD application in time for the scholarship deadlines and try and hold together some semblance of a life outside of work.
The diagram below shows how the different elements of my experience over those dreadful months fitted together to exacerbate each other.
I spent a long time questioning why I was so unlucky as to become so unwell right as my life was supposed to be starting, but now I understand.
It was the perfect storm. A massive increase in activity levels, some external personal stresses, and the advent of winter.
At the time, I felt doomed. I couldn’t picture escaping the situation I was in. I was starting to feel more depressed than I ever had before and it really scared me.
But here I am, months later, and I’m feeling a lot more stable. I still have ups and down but I’m no longer spending weeks on end unable to live my day to day life.
There’s been a few changes I’ve made to achieve this amazing outcome, but the main one is pacing. Before I delve into sharing my experiences with the technique, a quick disclaimer — I’m not a doctor and your own mileage with these methods may differ from mine.
For me, at a time when medical professionals were reluctant to take my issues seriously pacing was a lifeline. I hope it might help you too!
First up: what is pacing?
Pacing is the act of making sure that your activity levels each day aren’t too extreme. You wouldn’t run a marathon on a Monday and then spend the rest of the week doing absolutely nothing. It may be much better for your psychological and physical wellbeing to stagger the activity. A couple of miles each day.
Or, if you are unwell, it might be the case that you would stagger chores or work throughout the week as much as possible. You might choose to go for coffee with a friend on Wednesday and not to push yourself the rest of the week to be very social or active.
By balancing your activities throughout the week, you will hopefully over time be able to increase your ‘baseline’ and be able to do more without ill effects.
If you’re on the lookout for more information about pacing, this leaflet by UK based organisation Action for ME might be just the ticket. I don’t meet the diagnosis criteria for ME, and my fatigue is linked to EDS instead, but regardless I found this a useful resource.
How I Learned To Pace
When I first became unwell, the idea of consciously doing less than I physically good felt antithetical to having a fulfilling life. If one day a week I felt well enough to go for a walk then surely I should make the most of that?
I eventually came around to the idea that pacing was worth a try. If it didn’t help I could go back to the ‘boom and bust’ cycle I was stuck in.
Accept The Process May Be Frustrating
The first step for me was to accept that pacing might cause more frustration. I had to accept that I wasn’t in control of my body’s reactions to exertion and it wasn’t my fault.
Even if things felt like they were falling apart around me, I couldn’t push myself to become well instantly. It was a process I had to follow.
Evaluate Current Activity Levels
Once I had accepted that pacing might help me, I had to try and establish my baseline — the amount of exercise/activity I was able to do each day without harm. This is a tricky one as sometimes the effects of an activity weren’t clear until the following day.
At first, walking any further than the bathroom at work was a no-go. I felt sluggish if I visited the canteen and sometimes felt like I might collapse against the cubicle door in the toilet. A few dizzying times I wondered how long it would take before someone wondered where I’d gone.
I wasn’t honest enough with myself then.
I told myself that of course I could handle more. I was strong. So I pushed too hard and the cycle continued, with each frustrating month leaving me more and more down.
It was only when I sat down with my diary and evaluated the pattern of each week that I understood.
Academic activities like preparing my PhD application weren’t too exhausting. I was able to complete my application on time.
Walking? That was really tough.
Even harder though — sitting in the office. You might find that a little odd as it’s a sedentary task and my job wasn’t especially mentally challenging.
However, it was tricky for another reason. I have autism, something I’d only recently discovered at this time, and the overstimulation from the office lights and constant social interaction was incredibly draining.
At the time, there was little I could do about that, except make tiny changes to my day to day routine to make things easier.
Small Changes Make A Big Difference
Anyone who is familiar with the spoon theory devised by Christine Miserandino will understand how bartering your available energy works.
If sitting in the office at lunch requires ‘a spoon’ then by skipping that and sitting in the quiet east canteen I’d either have a little energy to spend on something else or have a smaller energy deficit at the end of the day.
By working from home on a Friday I saved the energy from the daily commute.
One of the changes I made I still almost regret, even though it was the only way to get through those difficult months. I didn’t want to make a bad impression by repeatedly taking sick leave, even though I was really unwell. Even my doctor had suggested that I move on to a less demanding job (even though at that stage it wasn’t really a financial possibility).
So I spent my vacation allowance buying myself some time.
My vacation days quickly ticked down, used for days spent recuperating on the sofa. It was upsetting to hear colleagues chat about their long weekends spent in sunnier climes, but I had no choice but to avoid holidays then. They were energy sapping, after all.
Honesty About What I Could Handle
As I slowly started to feel a little more like a semi-functioning person, I learned to be honest about my limits.
I let friends know that I wouldn’t be able to stay out for hours, I asked colleagues for help with emails or calls when my brain wasn’t co-operating.
Even though I was still exhausted, my honesty allowed me to start to rebuild my fractured self esteem. If nothing else, I wasn’t pretending that everything was okay anymore.
I was actively pacing, scheduling in rest time, and spreading activities throughout the month. A trip out on a Saturday meant a rest on a Sunday. Many hours overtime at work one week meant limited overtime the next week, if possible.
Accepting Defeat
This one is a biggie. Sometimes you have to admit that things aren’t working and make bigger changes in order to see the improvements you need in your life.
In March My PhD application came back with the news that I’ve been awarded funding for a PhD and a research training Masters (as my MA had been in a slightly different subject). I was ecstatic, the thought of going back to academia and the studies I loved filled me with joy.
One problem? I knew that if my health didn’t improve quickly then I might only be able to limp through the Masters and might not even meet the academic requirements to progress on. I was a complete wreck.
My job wasn’t quite as awful as it had been when I started, but it was nothing like advertised. Other people I knew elsewhere in the company were having similar experiences and you had no control over what role you were doing.
In my first year I had been given a people focused role in a department of the company I hadn’t really wanted to work in, while I had acquaintances in the exact opposite position. My long term future wasn’t with this company, or even in this sector.
The most important thing was being well for October 2019.
I handed in my notice at my job the very same day I got the funding offer. It was one of the hardest things I’ve done, as I wondered whether I was doing the right thing.
Despite my health I was in an incredibly fortunate position this Spring, I know that. Most people aren’t able to just up and quit their job if they’re unwell. It’s thank to family support and luck that it was possible at all. I had saved my wages diligently in case I needed to fund my own PhD, so I had a little bit of a buffer.
For you, admitting defeat might mean something else. It could mean going part-time, or not going for a promotion. It could mean limiting gym visits or stopping 5K runs.
Admitting defeat meant, for me, realising that my health was the most important thing.
If I had my health, I could conquer my world.
Make The Most of Every Moment
Pacing myself and admitting that I was no longer in the position to exercise as frequently as I previously had was a really hard thing. I put on a lot of weight over the months I was unwell and felt like a giant marshmallow or potato…
But while I recover, that isn’t the most important thing.
I am managing to exercise more now I am no longer working full time and am discovering a new baseline. Higher than it was this winter, which feels like no mean feat.
For months I had to push down my creative instincts in order to have the energy to make it through the working day. Now I have a little more time, I’ve started thinking again about the novel I was writing before all of this.
I’m writing too about my experiences of health conditions, such as this article on my thoughts as an autistic woman about sensory overload.
Looking Back
The last year has been one of the hardest of my life.
At times it felt like the winter would never end, that I would never feel well again, and that all my dreams would slip away.
None of those things were true.
By pacing, by allowing myself time to heal, I’ve found a new normal that I can deal with.
I might not be as physically well as I was last summer, but I am more in tune with myself. I understand the importance of not pushing myself too hard and taking time for self care.
Over the next few months, I’m focusing on feeling better but also on having fun. Above is a photograph from a recent trip I took, where I spent hours looking at the open seas.
If you had asked me in November if I’d have the energy to even get on the ship and sit on a bench on deck, I would have laughed on your face.
I have healed, at least a little, and pacing has helped me with that.
I’ve never felt so grateful for the simplest things in life.
