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By Sakara Dee
Listen here: https://open.spotify.com/episode/4f4qxjUjEbplo0GiGryufR?si=233d5bb22e7f49da
Hello, I’m Sakara. Today I’m sharing my thoughts on and experiences with the symptom
management technique, “Pacing”. I’m a 21 year old musician and freelance assistant,
disabled though M.E. and other energy-limiting chronic illnesses.
My relationship with “pacing” is a tumultuous one, but I’ll tell you more about that in a
moment. Let’s start with a definition: pacing is a way to manage (or, attempt to manage)
your activity levels, and the energy you spend on them. The NHS describes it as “balancing
periods of activity with periods of rest, and not overdoing it or pushing yourself beyond your
limits.”.
What does this technique involve?
Pacing starts with establishing a baseline. This is the amount of activity you can do “knowing
that your pain [or other symptoms] won’t flare up.”, a ‘flare’ being a disruptive increase in
symptoms which makes day-to-day living more difficult, and often lasts for days or weeks.
Your baseline will be different for each activity, and you have to work it out individually. For
example, an hour of reading might be fine for you, while a ten (10) minute walk could cause
you pain the next day.
Once you’ve got all your activities lined up at manageable levels, and have made sure the
new routine isn’t causing any problems, the next stage is a “planned approach to increasing
your activity levels” (this is all according to an NHS document, aimed at sufferers of chronic
pain). This stage involves incremental changes to the duration, difficulty or frequency of a
task. A gradual increase which is, in turn, supposed to increase your ‘baseline’ that we
talked about earlier.
Pacing and I got off to a bad start
Paediatric M.E. clinics (run by the NHS in England) didn’t exactly… Treat me. I had to attend,
but by my teenage years the most common feedback was “carry on as you are!” and the
whole thing began to feel like a useless formality at best, and a harmful source of
unachievable recovery narratives at worst.
My first encounter with the ideas behind pacing was via a children’s M.E. clinic, aged 7. I
coloured in activity charts, grading how I spent my time in terms of energy and
concentration levels required (TV is considered high level, in case you were wondering. So
you can refer to all of those box-sets your “brain gym” from now on).
However, none of this led to tailored support going forwards. After a brief check in, the
long-term management was left to me and my parents. In later years, as a teenager, they
looked at my routines again; I was advised to increase my activities in ways that didn’t prove
to be sustainable. Because of all that, when I learnt the word “pacing”, I lumped it in with
memories of the false smiles, painful physiotherapy, and advice which ended with me
having weeks off school.
Where did it go wrong?
Practitioners are rarely patient-focused. The treatment sets strict rules on how a
body should react, not leaving room for us to listen to what our own body is telling
us. Pacing is all about being sensitive to your limits and restoring balance, but within
the clinics I went to, this principle is only respected while your body complies to their
timeline. The moment you deviate from gradual, upward progress, the only answer
is that you’re doing it wrong. Or, as a physiotherapist said to me; “it only hurts if you
do too much.”
There is no allowance for natural fluctuation. Sticking to a baseline of activity just
didn’t fit with my fluctuating conditions. There are so many reasons why one week’s
“normal” might be another’s “impossible”.
Guidance is limited and rarely sustainable. Monitoring the time spent on every
activity and gradually increasing them one by one can be confusing and
overwhelming to manage alone. And that’s what pacing is: a self-management
technique.
Their tips focus on tiny details, not the big-picture of being a person. The guidance
feels bitty and doesn’t help you comprehend the wider ideas of how activities
interact, with balancing activity types or have a fulfilling day.
What did this mean for me?
As a child there was little to no guidance on how to use pacing to help myself. Seeing the
red patches on my chart where I watched TV just made me feel like I was being told off for
watching TV.
Every time I tried to follow the advice to increase my activity, I would crash. One day, I
decided to maintain what I’d interpreted as my baseline. No increase, just consistency. I
made myself do the same amount of schooling every day and after a week, homework was
impossible. Another week and I was off school entirely. Again.
Chronic conditions don’t behave like an acute injury; we rarely experience logical, linear
trains of recovery. If our baselines do exist, they fluctuate. Besides, I find existing tiring. I
wake up in the morning with headaches and pains that I know will get worse while I eat
breakfast. I ache from lying in bed when I do too little, then I ache from performing any
activity. Intense focus on finding “my normal” was as depressing as it was futile.
I was being treated by people who don’t truly understand M.E., let alone me. Flawed
guidance from NICE, which recommended the use of Graded Exercise Therapy (a physical
therapy which is also based on the gradual increase of activity) was still in place at the time,
and no doubt the teachers and other adults around me were being influenced by
stereotypes of delicate children just needing to be “built up” in order to recover.
Is there another way to structure Pacing?
I believe so. Flipping the problems in the earlier list gives us an idea of what the solutions
could be:
Affirm our right to listen to our bodies, and have faith in the reports they give us. If
my instincts about the fluctuations in my symptoms had been listened to, a much
kinder and more supportive plan could’ve been worked out for me.
Ditch the rigidity of baselines. We need to be able to discuss where our limits are,
but baselines aren’t the most useful terminology. A baseline refers to things we can
do easily, but not much comes easy when chronically ill.
Make supportive guidance available! Don’t just tell us to rest, explain how to do that
effectively, and how different activities can require different kinds of rest. For
example, TV isn’t always in the red; sometimes re-watching a series is comforting to
me, and helps me to rest my body after being physically active or emotionally
overwhelmed.
Increase understanding of chronic illnesses and Disabled people generally. While
stereotypes of laziness and ableist ideas that you can’t be fulfilled in life unless
you’re “cured” continue in their prevalence, medicine and management techniques
will be tainted by them. Recovering from the feeling that my illness was my fault,
and learning to manage my activity for my own wellbeing rather than as an attempt
to heal myself entirely, would’ve been a smoother journey in a world that respects
Disabled people, regardless of our productivity. It would’ve been easier to believe in
and advocate for myself in a medical system which defaulted to believing the sick,
rather than dismissing them.
Moving forward
I find asking myself if the activity is something I “can do” (achievable with little payback,
worth the energy expenditure), “shouldn’t do” (physically possible but will lead to a flare up,
whether I go for it depends on the value of the activity), or “can’t do” (physically impossible)
more in tune with my experiences. For me, It’s easier to make a decision based on these
questions than it is on a static baseline.
Adapting activities is a great, gentle form of management. I accept that office work will be
done from bed, music production will be practiced in a dimly lit room and walking doesn’t
mix that well with talking. We’re often doing lots of things at once (like being aware of an
environment while completing a task), so identifying the elements of an activity and cutting
some out can help to reduce overwhelm and exhaustion.
Years after being discharged from my childhood clinics, I find hope in online communities, in
charities like LUNA, and in seeing my sick and disabled friends grow up to be researchers and creatives making a difference for a whole new set of young people. The NICE guidelines
which encouraged my mistreatment are gone. Now we need positive action in their place,
so nobody else has to feel alone in this, and so great ideas like pacing can actually function
in reality.
Further reading:
Natasha Lipman’s work talks a lot about pacing and is available in both podcast and
transcript format for free here:
http://natashalipman.com/how-to-pace-chronic-illness-pain-podcast/
In the linked episode, Natasha (who is Disabled herself) discusses pacing with Occupational
Therapist Jo Southall.
Sources:
NHS Pacing definitions and guidelines-
Fibro Article: https://www.nhs.uk/conditions/fibromyalgia/self-help/
Chronic Pain leaflet: https://www.ouh.nhs.uk/patient-guide/leaflets/files/11850Ppacing.pdf
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