Pacing tips for ME CFS Long Covid

I regularly ask questions to the ME/CFS community via Instagram stories, typically seeking peoples knowledge and experience on a specific topic. Their words of wisdom are then complied into a short video which is posted on RUclips and Instagram
View the videos here
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WHAT ARE YOUR TOP TIPS FOR PACING?
I asked this question on my Instagram stories - this is a summary of the responses
❇️ Find your baseline
This is the amount of activity you can do without PEM - post exertional malaise
Only do 50-70% of this
❇️ To help find your baseline
Keep a symptom and activity diary
Use a scoring system to measure activity exertion
Eg. 1 = minimum exertion, 10 = maximum exertion
Monitor heart rate or heart rate variability
❇️ Schedule proper rest
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❇️ Proper rest is
No TV
No phones
No reading
Close your eyes
Lie down
Focus on your breathing
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❇️ Use an alarm to remind yourself to rest
Use a timer when doing activities to avoid accidentally overdoing it
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❇️ Rest even if you don't feel tired
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❇️ Make your rest enjoyable
Comfy eye mask
Snuggly blanket
Relaxation music, binaural beats or meditation
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❇️ Sit down wherever possible
Sit down when cooking
Sit down when brushing your teeth
Sit down when hanging out the laundry
Sit down in the shower with a shower chair
❇️ Learn to say no
Keep your over achieving tendances in check
Don't let others push you into something you know is too much for you
When you hear your inner warning bells saying you've nearly reached your limit listen to them - stop and rest ASAP
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❇️ The 4 Ps
Prioritise
Plan
Pace
Pleasure
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❇️ Prioritise tasks which have to be done. Delegate whenever possible.
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❇️ Plan in rest time after every activity
Plan your household chores - do a different one each day of the week
Plan social activity or household chore - don't try and do both on the same day
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❇️ Pace
Spread your activities throughout the day/week
Don't try to cram all your tasks into a good day. This is likely to trigger crash
Save the spare energy from your good days and put it into your energy bank to help your healing and grow your energy reserves
Alternate between different types of activity - mental, physical, social
Eg. reading, rest, cooking, rest, chat to friend, rest
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❇️ Pleasure
Ensure you leave some energy to do things which bring you joy
This is so important for your mental health. The feel good hormones can actually improve your physical health too
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If this helped you give it a share, it may help other spoonies too!
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To discover more tips for improving your ME/CFS join the Living with ME community. We will empower you on your healing journey!
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Living With ME CFS
We provide advice and support to people living with myalgic encephalomyelitis chronic fatigue syndrome and long Covid.
Whether you identify as a spoonie, chronically ill, disabled or as having an invisible illness you are welcome in our community. Think of us as on online chronic fatigue support group.
We share alternative treatments for chronic fatigue syndrome. This includes chronic fatigue syndrome therapies which are holistic and scientific.
People talk about the cfs symptoms they experienced and the chronic fatigue treatment they tried. They share how to cure chronic fatigue syndrome naturally. Their me cfs recovery story will inspire you with your chronic fatigue recovery journey.
We understand healing chronic fatigue is your priority. We do our best to provide tips for everyone from those living with mild chronic fatigue to those with severe ME CFS.
And let’s not forget about chronic fatigue in children. Losing your childhood to this debilitating illness is one of the cruelest things that can happen. Hopefully some of the advice we share will help their recovery from chronic fatigue syndrome.
#cfs #chronicfatiguesyndrome #mecfs #longcovid #spoonie #chronicfatigue #postexertionalmalaise
Music: Landras Dream
Musician: music by audionautix.com
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