Join the Conversation on
229 people
0 stories
20 posts
Explore Our Newsletters
What's New in

deep radical rest

Does anyone have any advice for a period of radical deep rest? I need it badly and I think I finally have the opportunity. I need time with no stimulation and weeks in bed but I'm worried I won't be able to tolerate the boredom.

#Dysautonomia #MyalgicEncephalomyelitis #ChronicFatigue #rest #ADHD #pacing

7 reactions 5 comments
See full photo

Truly. Small things can be great too.

I am limited.
This is my reality.
I only have so much energy to go around and I need to pick and choose what to spend it on. Always having to keep in mind that I cannot overdraw my account. I need to balance my ‘checkbook’, if you will, to make sure I don’t go down to zero either, because then I might not have enough for the next day.
(Obviously I am not perfect at Pacing as I find myself doing too much on occasions as I get impatient with my limitations. Overall, I’d say I do pretty well with it.)

So what do I choose to spend it on? Well, some mundane tasks need to be done like laundry or light cleaning, so I spread it out over a few days. I work within my boundaries which I have somewhat figured out by trial and error. This is part of Pacing.
Now, I am a very lucky Gal to have a super supportive husband and three kids that help me with some of the heavier chores, just would like to point that out.

When the Mundane Pragmatic stuff have been taken care of I choose to spend my energy on stuff that fills my heart and soul with contentment. Whether they’d be Creative Coping Strategies like painting, drawing, forest bathing, expressive writing or listening/making music (now the latter depends fully on headache pain levels but within my capacity, music will always have a part in my life) or just being with my family in the moment.
I also am a half of a duo who talk about exactly this in podcast we have named Creative Copes- A labor of love for ourselves and hopefully an aid to others.

This is what I spend my energy on.
Things that matter to me; that settles body and mind and makes my heart pumping blood.
I am not all knowing and cannot be Worldly Great: I am clearly not meant to be a main figure in changing the world lol.
But I can do Small things in a Great Way, for myself and others, and hopefully someone can pick up what I am putting down and feel more inspired to get up every morning and meet the day head on. Love and light ❤️
#pacing #CopingTips #MECFS #Fibromyalgia #ChronicHeadaches #ChronicIllness #Spoonie #spoonielife #MyalgicEncephalomyelitis #Anxiety #Agoraphobia #ChronicPain #dynamicdisability #ChronicPain #Pain #Acceptance #Grief #TheMighty

15 reactions

Doing too much?

Feel like I need to do 'something' outside of the house every day, but not wanting to overdo it

#Outside , #everyday , #pacing #Reflecting


I need to quit something

How do you distinguish pacing from lacking motivation? Pulling back/quiting because you're depression vs your body needs you to/you're doing too much #Fibromyalgia #Depression #pacing #ChronicFatigue


Is anyone else with ME/CFS from Arkansas?

I have been in touch with #ME /Action due to my interest in starting an ME/Action state chapter. I was given instructions on how to go about the initial steps to start the process and one of the first things on the list was to join my state’s ME/Action Facebook group and scope out potential individuals that would make good candidates to serve as chairs for the chapter. I quickly realized that there was less than 50 people that were members of the Facebook group! I was totally shocked. I expected there to be more. So, I’m doing a shoutout on here in hopes of drawing attention to what I’m trying to do and to expand (if possible) the Facebook group to get more people interested in being a part of it and gaining much needed support as a patient or a caregiver in Arkansas. We have very little access (if any) to ME/CFS literate physicians, therapists, etc. so I want people to be able to access support where they can get it here in this state. If you are in Arkansas and are living with or caring for someone with ME/CFS, go check out and consider joining the #ME /Action Arkansas Facebook group. Hope to see ya there!!! #MyalgicEncephalomyelitis #MightyTogether #Fibromyalgia #ChronicFatigue #exhaustion #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Migraine #RestlessLegsSyndrome #MastCellActivationDisorder #Fibromyalgia #Gastroparesis #IrritableBowelSyndromeIBS #InterstitialCystitis #cognitiveimpairment #Jointpain #ChronicPain #pacing #Insomnia #Upallnight #CheckInWithMe


Spoonie Day

Just downloaded an app called spoonie day that I really like. It is helping me to see that I have been overdoing it and I gotta stop. That is why I have been so exhausted and feeling overwhelmed. I gonna use this app for awhile to help me out. #Spoonie #spoonieday

1 reaction
See full photo

See The Good #Gratitude #Selflove #peace #positivethoughts #Mindful #Mindfulness

2021 for me is all about me for the first time in my life. I have been working hard to not be consumed by my surroundings and my endless lists of where I should be or what I should be doing.
I have been working on weight loss, getting fit, pacing and learning to love myself.
#weighloss #pacing


Does anyone have any tips to get better at pacing? Managing flare ups?

I have over the past two weeks overdone things and ended up having a Fibro flare up where I have had a severe migraine to point where I feel nauseous and have to go to bed to lie in a dark room.
I suffer from family judgement where they think I can do stuff if I tried harder so I try to live as I did before Fibro/ME which results in this cycle of crashing.
#Fibromyalgia #pacing #ChronicFatigue #Flareup #familyjudgement


Distinguishing Between Fatigue and Lethargy

Fatigue and lethargy are similar in that they feel as though a heavy blanket has inhibited your ability to physically and cognitively function. You may resist tasks which require getting up or moving position, you may feel sleepy and desire a nap, or you may have little interest or ability to focus on anything in particular.

Fatigue is a physiological response to a lack of adequate rest, food, or other imbalance in the mind or body. Distinguishing features of fatigue are accompanying physical symptoms such as muscle aches and mild flu symptoms, feeling like you can't fully wake up, and an internal desire to do something, whether you are able to or not.

Lethargy is a mental emotional response which causes the sensation of being tired, or physically drained. Lethargy can indicate depression, but it can also show up when there is no particular urgency to complete tasks. Distinguishing features of lethargy include accompanying negative self talk or internal distress, feeling like you can't care, and a lack of "willingness" to begin or complete a task.

While these two experiences can often present similarly, the treatment for each is polar opposite.

Fatigue requires rest, pacing, and any additional needs required by the individual. It is only through acquiring enough rest, nutrients, and adequate care that the fatigued person will regain the physical and cognitive ability to perform tasks to the best of their ability.

Lethargy requires action in order to recover. While feeling lethargic, it is imperative that one takes intentional steps to complete tasks, even and especially when it feels pointless to do so. Through the application of physical and mental exertion, as well as affirming one's ability to complete tasks, lethargy is often lifted and one feels less tired and more capable.

Understanding what is happening in your own mind and body is important to be able to administer the correct treatment when you are experiencing exhaustion which inhibits your ability to function. Many people with chronic illness or mental illness experience both of these symptoms, and it can be confusing to try to figure out what you need at any given time. But staying aware of your diet, physical exertion, mental emotion exertion, and other ways you either recharge or use up energy can really help you determine whether you require a resting period or would benefit more from pushing yourself.

#Fatigue #Depression  #Lethargy  #exhaustion  #rest  #OppositeAction   #pacing  #Recovery   #CognitiveBehaviorTherapy   #selfhelp

See full photo

how was your week #ChronicPain #Fatigue #ChronicFatigue

#Fibro #Anxiety #TheMighty #Arthritis
finally my week comes to a end! I made! I actually had a pretty decent week , my new way of living seems to be working, #pacing making time for rest, using my fitbit to monitor every little thing I do, using my planner to help me remember stuffs it's all helping. I think I have my base line figured out, I'll keep that for another week, then very gradually add a few min. per day until I have some stamina build back up. next week I'll start on the steps to making it my first goal which is painting again. im going my summer, I'm finding myself thriving instead of just surviving.