CFS/ME Recovery - Essential Pacing Strategies
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- Äas pĆidĂĄn 6. 11. 2020
- In this video many people who are working on their ME/CFS recovery share their energy saving tips!
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REMINDER: This is for information purposes only and nothing I share should be considered medical advice. Please make your own assessment, do your own further research, and consult your trusted healthcare professionals before deciding if anything I talk about here might be right for you.
Hi all! The organization app I mentioned in the video is called Notion đ I highly recommend it! www.notion.so/
I spent 10 months repeating the phrase "but I could do this a month ago" as I pushed myself lower refusing to believe I was getting worse. I stabalized when I realized you have to check in with yourself everyday, and do only what works at that moment.
Great advice thank you
I feel the same way. It is hard to know what you used to do you canât right now. I am hoping with time and therapies my energy levels will increase some. I am also learning to pace and rest.
I'm not such a fan of long form individual interviews, but I really like this talking heads format!
Wow finding Raelan has been a real game changer for me, after 30 yrs of living with this disease I am so thankful for these videos. Itâs like I found a support group that understand me, healthy people donât get us, thatâs in itself makes living with this disease worse. The last thirty years has been a real roller coaster type of life for me. Some times are could barely function then other times I functioned at 80%. These videos snd all that has been shared thru so many in regards to their complete recovery has given me hope that I may have my story too soon. At 72 yrs of age it would feel like a miracle. Meditation, breathing, mindfulness, and following a plant based diet, exercise,having implementing these in my day I have experience a huge difference already, and itâs only been a short while. I pray and hope that you will all have a complete recovery story soon!
So many great ideas, Raelan! Thanks for sharing those wonderful videos. I've given up on a rigid sleep routine. I go to bed at the same time, but get up at various times depending on how I feel. I do require a great deal of sleep (10-12hrs) in order to feel that I can function. As a result of the additional sleep, I have much better energy. I am getting over the guilt of sleeping a great part of the day. My body must need it at this time. I think the change in temperature and daylight also affect my need for sleep. One pacing strategy I find effective is to have a bath instead of a shower. I wash my hair in the bathtub using a container to rinse. It gets the job done! Best wishes to everyone!đđđđ
I found cutting my hair off very very short, so it washed in a second and took no drying. Sitting down to clean my teeth. No makeup and it saves washing it off at the end of the day.
Have stool next to the oven to sit down. Casseroles, soups, smoothies roast everything in one tray, one pot meals.
Give up ironing and lower self imposed cleaning schedules. Nobody died if you don't change your bedding weeklyđ. Have a cleaner once a week when possible.
Use dishwasher and order food shopping.
Pack a bag of all the stuff I need downstairs when I leave my bedroom in the morning.
Message people in the house rather than going to find them.
Only talk to people that I need to, I find WhatsApp and messanger so much easier than talking.
This is so excellent!! Thanks for sharing this đ
Since showering often tires me out, I often shower in the evening now instead of the morning. I also dump all my clean laundry into my bed and fold it while lying down, then put it away after it's all sorted and folded.
Thank you Raelan đđđ
I feel better doing a small amount everyday. A little cleaning task everyday, cooking a smaller meal everyday. It's too much to clean every 2-3 weeks when the project is bigger and dirtier and batch cooking drains me so bad. Thank you for encouraging me to lower my standards I am constantly working on that and not comparing myself to what I used to be able to do.
stay away from negative limited thinking pwme. they will drain you n stress u out, cause frustration and anger when u try n help. they will slate you for not coming up with a magic answer for them n not take self-responsibility for their own recovery
I purchased an electric mobility chair. I can join my friends outdoors for walks, visiting galleries, etc. I no longer have to decline these activities. Also, someone turned me on to the wheelchairs at airports. When you arrive at an airport you say you need a wheelchair. Then someone wheels you wherever you need to go. You donât have to wander around (huge energy user) trying to figure out where you are supposed to go. PLUSâŠ.and this is a huge plus, if you are in a wheelchair, your pusher just wheels you straight through to the security section. You donât have to wait on line. When you arrive at your destination, another person with a wheelchair will be waiting to take you to baggage claim. When I went to Mexico, the chair pusher actually filled in my customs sheet for me.
So many fantastic tips on here đOne of my concerns (and it probably keeps me from resting properly) is that when/if I don't use my body/move much, I seem to get less able to do it, my body get's stiffer and atrophied and my mind starts to give up, setting me back so much. It's where I find myself now, in a setback and coaxing myself to be active even in a very minor way. Ultimate aim to be 'out there' in the world independent again and trying to rewire my brain and make friends with my amygdala. It's such a thing to find my way with and I yearn so much to be independent, especially being/living alone. I have utilised online gift shopping though and groceries too. So great we can do that. It's through finding Raelan's channel that hope has been restored (when I'm not crashing that is). đđ©ââ€âđšđ©ââ€âđ©đ
These are great! Thank you so much for sharing đ
You are so welcome!
I agree with letting go of how clean my house is, I let go of that quite a while ago.
Terrific video! Great tips!
Glad it was helpful!
This is wonderful đ
Thank you! Cheers!
Thank you for all this information itâs very helpful đ I try as much as possible to have a bedtime routine as I find this helps my energy levels the following days.
Glad it was helpful!
Raelen this is fabulously helpful!!! I'm with Bessy...I got a buzz cut the other day. I *love* it for sooooooo many reasons. So freeing. And yes, that's a lot to tick off the list, as obsessed as I've always been with never having a bad hair day đ€Łđ€Łđ€Ł. It saves money on product, shampoo, color, and fits in with my "rarely shower" strategy đ„°đ„°đ„°
Amazing! Good for you!!!!
Hi. Where is Sarah Myhills 95 energy saving tips? I can't see it and I googled but still couldn't find it. Thank you!
I havenât even finished watching this terrific vid. I had to tell stop and tell you, when you mentioned not showering every day. Yay! I live alone and during covid isolation, along the way to conserve energy, I started doing that too. Not showering every single day. Also during covid isolation I could no longer visit the hair salon so my hair grew long. And I stopped coloring it. So it is long and grey and not attractive on this elderly face. So I just pull it back in some sort of bun or French twist. I donât have to think about washing it because as it is flat to my head, it looks the same fresh or old. And then my bed. It has 11 pillows on it. I got tired of pulling 8 of them off the bed each night, then replacing them all the next morning. So I leave seven of them on the floor and the only time they make it back onto the bed is when the maids come every two weeks. Also, I used to change my sheets weekly. After the maids put clean sheets on the bed, in the intervening week I would change the bed myself. I stopped that. And for people who live with stairs, you know how you put things at the top or bottom of the stairs to carry with you the next time you go up or down? I do that in my little no-stairs condo. Whatever is leaving a room remains there until I am leaving for another room. While all my young friends are trying to reach 10,000 steps a day, I am trying to take as few steps as possible. So I may then possibly take a little walk.
Gail, I appreciate you taking the time (and energy!) to share a bit of your health journey. It's nice to share these stories and know that we are all not alone in this â€ïž
I think I relate to your videos so much because we are sooooo similar. Reading your book was like reading something I had written, and of course you use Notion XD which I am slightly obsessed with.
Freya! This is so cool. It's amazing how this happens, isn't it? Haha and isn't Notion the best đ
This is awesome! You are awesome đ. It would be great to have your videos with subtitles in spanish. There is no information about recovery from chronic fatigue in spanish, and I can't share this useful videos to my relatives, who are suffering this illness :'(
What a great idea! As far as I can see CZcams doesn't give me an option for this but I can look into other options đ
95 tips the thought of that one has me exhausted already haha
đ good point David! A good pacing tip might be to only check out the first 5 đ
Thankyou. For vidio.
Most welcome :)
Hi Raelan. I'm not sure if it was this video or another one of yours but you mentioned a dairy/organisation app that you used. Can you tell me what it is please? Thank you :)
Hey Keren! It was this one, it's called Notion đ www.notion.so/
Thank you so much wonderful Raelan đ
After Bessie shaves her head she can buy and wear a wig. They are not necessarily expensive and they look just fine.
Somebody please help me this illness is killing me. I feel like I'm dying everyday and live in extreme torture every minute.
I'm so sorry to hear this Jennifer, sending love and support to you and I hope you find what you need soon đ
I understand. I felt the same way and it was terrible. I started DNRS and the medical medium celery juice protocol and it changed my life.