#chronic illness pacing

[compassionmattersmost]

Introducing the ME/CFS Wellness Companion (A Work in Progress)

For those living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, or any energy-limiting illness, daily life can feel like an obstacle course without a map. Simple tasks become monumental. Rest becomes survival. And advice from the outside world often misses the mark entirely. In response to this, I’ve been quietly building something—a digital companion rooted not…

[sleepysleepysleepybaby]

people who hate slow walkers are ableist

[enbycrip]

I basically live my life in bed when I’m not actively doing other things. That’s the only way I have the energy to do anything at all ever. When I do one of my hourish rehab classes, I’m usually flat in bed for most of the rest of that day and the entire next day, because delayed-onset fatigue is a thing my life is defined by.

It’s not remotely what people think of when they think of “pacing”, but it’s much closer to the daily reality of most people who live with fatigue disorders than the “I take a break for half an hour then I’m fine to go on” people picture when they hear the phrase.

I have heard the word “pacing” at almost every medical appointment I have ever mentioned fatigue at, and never yet had the slightest advice on doing it. Not even the ongoing CBT and Mindfulness websites recommendations I get if I ever mention low mood etc. The term is applied as a panacea by people who have zero understanding of what “pacing” is, how to achieve it, or what it actually means in the context of most fatigue disorders. Or how much pushback most people with those disorders will have when actually trying to implement it, because most people, including healthcare professionals, parse resting as “not trying”.

For people with fatigue disorders, pacing is *radical* in its effects on capacity. It lets you actually have some life, which is the big thing fatigue disorders feel as if they take from you. But we are stuck figuring it out for ourselves against enormous pushback.

[myalgicencephalomyelitiscfstom]

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom Doing part of something is better than doing none of it. You might feel up to doing the rest tomorrow. Good job knowing your limits and pausing that task. emojis: black heart, blue heart, masked, spoon 6:08 PM · Oct 13, 2024

[thepeacefulgarden]

[mercymaker]

ah yes, who doesn't love pouring hours into snapping photos, then editing them for twice as long, coming up with something a bit more interesting than *insert generic trope 5479* only to then *checks notes* get downvoted on reddit?!

[kikithedisabledfairy]

me: I got so much stuff to do today, exciting!

also me: please pace, please pace, please pace, please pace, for the love of everything whimsical and unholy please pace, plea-

[thevoidpeeringback]

Sometimes I forget how sick I am, when I have a good day I’m like yay I can do semi normal things failing to realise majority of the time by doing these semi normal things I will absolutely use all my energy and the cycle repeats.

Pacing is hard.

[wheelchairtetris]

Truly the shit I can get done if I pace myself enough & lie down between every task....... amazing

[unfilteredrealities]

Pacing Tactics

● Prioritize your activities and delay, delegate or eliminate non-essential items.

● Minimize sustained physical or cognitive exertion by dividing and spreading out your activities into small segments with planned rest periods in between. For moderate to severely ill patients, even normal activities of daily living (eating, bathing, dressing) should be modified to avoid triggering PEM.

● Immediately stop and rest if you start to feel dizzy or short-of-breath, notice your heart rate increasing, or sense other PEM warning signs that might be unique to you. Don’t try to “push through” when you feel sick or tired. Although the concept is lauded in today’s society, doing so with ME/CFS will only exacerbate your symptoms and potentially worsen your illness.

● Schedule rest time (even if you don’t think you need it) to relax your body and allow for potential healing. When anticipating the need for extra energy (e.g. trip to the doctor, night out with friends, special occasion), plan extended rest time before and after the event.

● Learn to recognize emotional PEM triggers and take steps to avoid or minimize their impact. If a stressful situation is primarily beyond your control (e.g. the actions of others, world events, lack of understanding about this disease) try to take the emotion out of your thought process. Worrying or holding on to anger when you can’t do anything about a situation rarely accomplishes anything for anyone, but if you’re living with ME/CFS, it can use up your energy and cause you harm.

● Difficult as it may be, avoid the temptation to do too much when you’re feeling a bit better. It is rarely worth the consequences when living with ME/CFS.

[affectionatepanda]

Is there a tutorial in not pushing yourself too much? Because it really feels like I do basic things and then my body simply gives up on me. Also how the HECK do you identify your limits?

[chronicillnesscaneffoffplease]

Why does everything I love hurt my hands?

[myalgicencephalomyelitiscfstom]

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom You're not being lazy, you're managing resources for future needs. Good job! Excellent pacing! I'm so proud of you! emojis: black heart, blue heart, masked, spoon x5 5:09 PM · Sep 29, 2024

[thepeacefulgarden]