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Revisiting Pacing: symptom management for chronic illness

By Sakara Dee

Listen here: https://open.spotify.com/episode/4f4qxjUjEbplo0GiGryufR?si=233d5bb22e7f49da


Sakara, a young women wearing a pink fleecy and a cap is sat smiling in her piink wheeled wheel chair. Below this photo is the text " Revisiting Pacing: symptom management for chronic illness, by sakara dee". This polaroid style photo and text is backed against a light blue background with a big purple and green shape.

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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