#pacing with ME/CFS

[compassionmattersmost]

When the Body Speaks: A Letter on ME/CFS and Forgiveness

Today, I felt it coming—a noxious wave rising from deep within. A bright, warning orange sliding straight into red, and before long, a full-blown crash. The heaviness in my limbs like wet sand, my mind fogged and thick. The weight of having done too much, more than my body could tolerate, more than it could carry. I knew this would happen. I overrode my limits packing, moving into a new…

[sleepysleepysleepybaby]

people who hate slow walkers are ableist

[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.

[moldyyeast]

i really think that pacing is the hardest thing i’ve ever had to do and that i’m very bad at it because it’s so different to every other hard thing. it’s not about being strong and pushing through and ignoring your limits, it’s the opposite and you still have to be extremely consistent and strict about it. also there are no breaks you have to always do it. idk i’ve just never done anything like that

[crazycatsiren]

I have learned to let go of all expectations on the down days.

I have come to terms with the reality that for the foreseeable future I'm always going to have these days. Days when I'm mostly in bed or on the couch.

On some of these days I'm able to still do things. On others I can't do anything at all. What matters is I do my best to get through them all. I listen to my body and give it what it needs. I do whatever it takes until these days pass.

[myalgicencephalomyelitiscfstom]

[crippleprophet]

one of the pacing habits i’ve had to hone is not trying to hold out until the end of a tv episode. we are pressing pause mid-sentence 12 minutes left it’s time to lay down

[helenwhiteart-blog]

Just because you could doesn't mean you should

I think this is one of the biggest stumbling blocks of mild to moderate ME/CFS…just because you can do something doesn’t mean you should (and by the way, if you have severe ME/CFS the chances are you couldn’t even if you wanted to, which is the only reason I leave it out). Really, I suspect that this mindset of always doing as much as we are capable of is one of the commonest things to trip-up,…

[chronic-melon]

I didn’t sleep well after a 3.5 hour stream. So it’s a rest day.

I hope I can listen to a few chapters of my current audiobook, The Pumpkin Spice Cafe. I don’t usually read romance but I wanted to give this one a try because it was short and easy to follow.

I’m planning a subathon, which is very difficult and confusing because there are so many aspects to think about. If you want to support, my twitch is melon_ayo.

Target heated blankets are on sale! So I got one. I’ve been looking for one because many times my small heating pad is not enough to soothe my pain. I overheat easily, so I’ll have to be careful.

It’s 15:00 and I’m finally “awake.” I had three sections of sleep. I don’t want to eat anything but I have a fruit cup so I’m gonna eat that. Grubhub sent me 35% off my order so I’m ordering in tonight! Drop your favorite takeout food.

Stability level for today: 2/5

[compassionmattersmost]

A Refuge That’s Never Truly Out of Reach

For those of us living with chronic fatigue syndrome (ME/CFS), finding peace can often feel like an elusive dream. The body aches, the mind fogs, and even the simple act of resting can feel like a challenge. But beneath the surface of our struggles—beneath the exhaustion, frustration, and the endless cycle of unfinished stories—there is a refuge that has never left us. A place within that…

[unfilteredrealities]

I’m so proud of myself for pacing and for not having a crash these days while on vacation at my partner.

Today we sat in a park on the grass and soaked up some vitamin D , ate some snacks, took portrait pics of each other while genuinely happy/smiling.

I survived Kingsday on the 26th of April and went out early and looked at the flea markets and everyone was wearing something orange or full on orange. We saw cool stuff but weird silly stuff as well. I bought from a store an orange cat plushie bcs my one at home is slowly deteriorating and I need this plushie badly bcs it is a tribute for my late cat that was orange too and for emotional comfort.

We were able to meet up with a friend of ours from the Netherlands and walk around for Kingsday together and it was nice.

The boys didn’t rush me and even kept an eye out for me and didn’t make me feel bad when I asked for a pitstop for me getting my 160bpm down again to a normal heartbeat before walking further. My partner worries tho about my health now that he is able to witness the crippling reality im going through on the daily.

Nonetheless I’m proud of myself that I managed to get 8k steps in with breaks in between.

I feel relaxed and don’t think about work on the daily anymore but I feel that dread in the pit of my stomach that soon the chaos will start again and I’m anxious about that day bcs I hope there won’t be too much chaos bcs Mondays always chaos and ahhh. Ok let’s not go into that spiral Echo. Don’t.

Ok so yeah. Besides of these stuff , my vacation is nice. I feel so safe and loved when with my partner. I am being seen and to be seen is to be loved.

We didn’t even have a fight yet and he is doing such a good job expressing his boundaries nowadays and knows when he needs a break. He progressed so much since 8 years ago in our first year of relationship.

[moldyyeast]

sorry but pacing apps are literally useless when different apps will regularly give me opposite results for my hrv or resting heartrate. like i doubt there’s even a statistical correlation there, how would that be enough to pace accurately??

[crazycatsiren]

I've begun telling and reminding myself that spending a day in bed is not "wasting the day". I'm giving my body what it needs and that's good and important.

[auressea]

I know a number of people who are NOW chronically ill. Many of them have not been given any support or resources to adapt.

additionally-Newly disabled people can take a really long time to come to terms with reduced function and barriers.. there's a long process of overcoming our internalised ableism.. to accept our new landscape.

Please. PLEASE-- allow yourself to REST. PACING is IMPORTANT!

[helenwhiteart-blog]

Slowly inching back outside after a crash

I’ve done really well at starting to pull myself out of a pretty deep two-ish month long ME/CFS crash, not that I’m completely out of it by a long chalk but I want to be able to take pause to appreciate where I have got to considering how long and deep a crash can be (and the many months of overexertion that had lead up to this one, risking that it might take just as long to get out of). Also, a…

[dustedprince]

they should invent a body that isn't tired and also maybe an immune system that functions as intended. and also they should explode ableism.