The Art of Pacing | M.E./CFS recovery

A video where I break down the basics of pacing and how I deal with it and stay on track. I'm having so much success with this right now so I hope you gain something at least somewhat helpful from this video!
HELPFUL LINKS:
M.E./CFS AND MITOCHONDRIA/ADP/ATP EXPLAINED: www.drmyhill.co.uk/wiki/CFS_-_...
MITOCHONDRIAL MYOPATHIES: www.mda.org/disease/mitochond...
M.E./CFS AND CELLULAR FUNCTION STUDY: :www.meassociation.org.uk/2017/...

[@BeverleyButterfly]

Pacing is so hard, it’s a constant battle against guilt and want to do things but I find being mainly housebound allows me to do a little every day and not pushing to hard. It’s so hard to not give in though and to do a little at a time, you explained everything so well thank you x

[@theprimeoflife9263]

I'm glad you liked it! It's so difficult, I'm glad you're managing not to push too hard. We've just got to keep doing what we're doing and it will all work out

[@sergioflowtv3378]

Winner of a video, I've been looking for "are chronic fatigue syndrome and fibromyalgia autoimmune diseases" for a while now, and I think this has helped. You ever tried - Diyadelyn Ziyily Idea - (do a google search )? It is a good one off product for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the hard work. Ive heard some awesome things about it and my neighbour got cool success with it.

[@andrewjalen8727]

i realize I'm kind of randomly asking but do anyone know a good site to stream newly released tv shows online ?

[@braydenmarshall9369]

@Andrew Jalen i would suggest FlixZone. Just google for it :)

[@jerryroy5121]

@Andrew Jalen try Flixzone. Just search on google for it =)

[@hugoingelhammar6163]

You also have to ask yourself why the body uses energy from the anaerobic cycle, which gets consumed really fast. The reason is called the cell danger response which is activated when the body wants to keep you still and protect you from danger. In CFS people our nervous system is hypersensitive to any kind of stimulus, so the brain interprets more or less everything as a threat. It then "uses up all the energy" and shuts down through the process you described. So in essence there is nothing wrong with our mitochondria themselves, its just our nervous system sending the wrong signals in an attempt to protect us from danger. To reverse this cycle you need to start really slow, but challenge the NS abit. Then respond well when the "crash" hits you. By responding well means not panicking, knowing its only the nervous system, and becoming aware of your automatic thoughts and emotions, accept them but stop feeding them. We often underestimate how much stimuli and energy bad thoughts and emotion takes up. By responding well to your symptoms you signal safety to the NS so that it can allow a little more activity the next time. The only way to get back is to go through many crashes, or Adjustment periods as I call them, respond well to them by pulling back activity and staying calm, then go again. Over time the neurons associated with activity and danger (thats been firing together for a long time) will start to separate from eachother and your nervous system will be less sensitive to stimuli and work more normally. For your info Ive had CFS since 2021 april, but since I started to implement these princples 5 months ago so much have gotten better. I work 90% now, I go to the gym several times a week (on the good weeks), hang out with friends etc. But it has required tons of patience and mental discipline. I still have some way to go before I consider myself fully recovered. I still get adjustment periods, but it requires way more activity to trigger them, and they are not as intense usually. I finally see the light at the end of the tunnel.

[@m.e.myselfandi5120]

This is great advice! We seem to have evolved from human-beings into human-doings. Our self-worth is defined by what we can do. ME strips us of that and lays us bare for self-analysis. It's terrifying and life-changing. It's kak and yet also very freeing. I wouldn't voluntarily sign up for it but since I have no option but to face my reality, it's been a really interesting learning journey. I wish you all the best in yours. Hugs from South Africa

[@mybatboys]

Thank you so much for this video. I was diagnosed in 2008 with fibromyalgia. Over the last 18 months, my health has completely tanked. I've been homebound all summer and have only found out over the last week through research and looking at symptoms on CDC and Mayo clinic websites, I have almost every single ME symptom, PEM being the most prominent. I've tried to explain my symptoms to my doctors and rheumatologists for YEARS and NO ONE has said, "You also have ME/CFS." I thought I always had to push through the pain and fatigue and I just learned this weekend, that's the WORST thing I could be doing and after a summer of forcing myself to work my tail off in the garden as much as possible, I now understand why I'm so sick I don't have the energy to read or even watch tv. So, now I'm learning about pacing and your video has been a wonderful, uplifting starting point.

[@PurpleElla]

Brilliant video, currently trying to escape the boom bust cycle, thank you!

[@theprimeoflife9263]

I'm glad you liked it! Good luck!!

[@Isabella25271]

This is some of the best advice I've found about pacing. Like you, I love traveling and learning about other cultures (to the point where I moved to different countries before CFS). A great deal of my energy goes to daydreaming about the day I'll get to do that again but this video has given a whole different perspective. Thank you so much for sharing your journey. ❤

[@theprimeoflife9263]

Thank you so much for your comment Isa! I wish you so much luck with your journey and am sending love and courage ❤️❤️❤️

[@justluci8578]

I really hope you experience a full recovery. Keep your head up. I very much believe that we have a much better chance for recovery listening to our own instincts and bodies than we do listening to doctors when we have ME.

[@theprimeoflife9263]

Thank you so much for your support

[@shellbell8062]

How are you now? You definitely have better hair than I ever did through ME! I am at the stage of feeling better and ready to do a bit more. What is really annoying is that you can't just "listen to your body" because your body lies! Some days I feel so full of energy and joy and then I go on a 15 minute walk and on the way back my legs start feeling like lead and I take a week or so to recover. It's a frustrating stage of recovery because the progress is so great and yet the end goal is still so far!

[@gframe4215]

Great video with such a great take on why focusing on activity doesn't work. Every year I'd set goals about walking and gentle exercise and going out more.......it always ended in boom and bust. This year I changdd my mindset and my 'goal' was not to relapse. So far, so good, rather than pushing to do activity to meet my goals, I push myself to rest regularly and listen to my body. Listening to this I also realise I need to focus less on getting out and more on the things I enjoy doing in the house.

[@truthprevails7085]

Your video is exACTly what I needed today! After 15 years of this stuff, and thinking I knew how to pace, am now just starting to do what you describe..I bought the DNRS DVD's, they're still sitting here, looked into GUPTA, etc...and can take something from most help sources, but pacing as you describe is what produces ability to do small things successfully at home. Thank you also for showing the real-deal at the end of yoir video- you looking out the window in your natural state....ahhhh... company!💖😍 xo!

[@theprimeoflife9263]

I'm so glad you found this helpful

[@debbiehardy8962]

Thankyou so very much. You just made me feel better about how I stay here, at home, all the time, due to this insane illness. Blessings for a quick bounce back to your entire life!!

[@ellakennickell5842]

You're inspirational! This is so helpful! Sharing your new perspective is a game changer for me, as I'm in the same health situation, but haven't figured out how to handle it well, almost losing hope of recovery. What you described sounds like the way to go through it, incremental, consistent, and achieving plateau levels, instead of the horrible cycle of boom and bust that has had me devastated. Thank you for sharing this essential knowledge through your own personal journey. Wish me luck!

[@ketarmako6388]

You explained the boom bust cycle very well and the examples are very helpful. Thank you.

[@kendramckenna3628]

I so appreciate this dealing with post Lyme ME/CFS, thank you for sharing the science side.

[@cherylcarlson3315]

Massive paradigm shift. Diagnosed with inclusion body Myositis, have crushing fatigue, weakness progressing through day,can do 5 reps of something then muscle shot for up to 36 hrs, brain fog horrible if tired,so is breathing if not on bipap and oxygen. Forcing myself to live in 6 minutes of activity at a time..what a change from packed active days. Thanks for validating what body says rather than PT who wants more exercise several times a day

[@Anna-if8tc]

Focusing on the next step - really good advice. Many of us with long COVID are learning these lessons and this is a helpful video.

[@theprimeoflife9263]

I'm so glad you found this helpful Anna. I am sending you so much love. As I write this I am living abroad and am in an intensive course of education (something I do every day, getting up, going to a classroom etc) while also submitting freelance writing. The reason I tell you this: I was once where perhaps you are, bedridden, housebound, unspeakably fatigued. it takes time and patience and stamina and courage but I promise you there is hope and you have all of my support and well wishes ❤️ I see you and everyhthing you're going through and I just want to acknowledge that it's so so hard and I salute you for braving it every day. ❤️❤️❤️

[@Anna-if8tc]

@@theprimeoflife9263 Thank you and bless you in your future endeavours.

[@neromillie]

This was beautiful. You have given me much to think about on my CFS journey. I commend you for looking after yourself in the best way you know how. Much love xxx

[@Over17Mirrors]

you are amazing, I so wish someone was making videos like this when I was in a similar place with M.E., even now I find this incredibly comforting and helpful. I think there's so much pressure to engage in activities that take huge bursts of energy and I absolutely love your outlook on valuing the day-to-day progress and changes. Also, excellent dungarees, very strong look

[@theprimeoflife9263]

Thank you so much, this comment means so much to me! And I love these dungarees so much, I can only hope my health advice is half as helpful as your dungaree advice is ;)

[@alvingonzales3551]

You are giving me hope in life. I hope I can turn things around with this new knowledge. Thank you!

[@theprimeoflife9263]

I hope so too

[@emmajones3131]

So so grateful for your vid.. It is helping end my day on a positive.. Today I've spoken to others and that has been so helpful.. I learnt the phrase boom and crash.. The wisdom u impart in this vid has given a framework for where I was coming to but didn't quite have the words... Thank u v much

[@carolcottle6226]

Great advice esp re pacing without activity involved tasks xx

[@chocolaterockz]

this is such a wonderful video!!! thanks so much for making it lovely pal!! also would b rlly interested in hearing ur fave books u've read recently!! and esp. if u have read any books about like sickness/sick ppl lol

[@heidivenli9790]

Love this video! Thank you, its so helpful and inspiring❤️

[@jaybowers8988]

amazing. would love to hear an update on how you are feeling now.

[@roisinhackett]

you're so amazing, this is so so helpful

[@theprimeoflife9263]

SPOONIES ON TOUR

[@myfamily7001]

Would love to know if you have managed to fully recover yet with this video was made 2018, update would be great!!

[@emilyvbr1878]

Interesting thoughts on this

[@heretoday788]

It took almost a year for me to undergo the transition to this perspective,. Excellent video discussion :)

[@theprimeoflife9263]

I'm glad you've come around to this perspective (and I'm impressed it only took you a year, it took me about 5!)

[@emmajones3131]

It seems so obvious now I have been getting upset about not doing my art and other things in my house because when I'm in a boom I'm running around out there and then in the crash I'm gone.. Focusing now on actually the recovery that will help me makes perfect sense

[@BickylaBiscuit]

This is all so true that it hurts. I've found myself going through waves of being present & focused on what my body can do now. And suddenly, the wave of high expectations comes along to sweep me into a place where I get stuck on what I wish I could do & subsequently, I trip myself up (it's even easier find things to reprimand myself for aka past boom & bust cycles that have caused repercussions I'm still paying for in my health journey). Stepping back & looking at it from a macro view, it's funny to note how universal this experience of life is, except we each have our own unique shades, shapes & textures. x

[@theprimeoflife9263]

yes! it's so important not to blame yourself for past negative cycles, I have to remember that I didn't always know what I know now, and that all of it was so necessary, because now I have a very deep understanding to how to take care of myself, which I wouldn't have if I hadn't experienced all of those crashes! And what you said about the macro view is so true! It's so difficult, but you seem to have a good perspective and attitude which is so important! xx

[@ishaw500]

Wow. Thanks for this! I’ve been feeling trapped in my neighbour and this part of my city but what you’ve said about the mindset change and then your body catching up in its own time is quite revolutionary

[@theprimeoflife9263]

I'm so glad this helped

[@laoch33]

Brilliant video! I'm in Dublin myself with ME for 16 years. Took me a long time to realise what you said here. I got the opposite advice from multiple doctors and ended up severe afterwards unfortunately. ....did ya ever get a subject/sport that you were just crap at? I feel like that's pacing for me..NO EXCUSE, I'm still going to try to become a pacing pro. Not to give you a big head but you're inspirational!! I am inspired after watching this, really! You reminded me of the PBS science crew on YT :) This is going into my favourites right now. Do you by chance have a good Dr. in Dublin :s?

[@caroconga]

I can relate to you so much. I'm 32 years into this CFS, Fibromyalgia game and still find myself saying, "Jesus, will you ever learn!" Hope you're doing okay. Any progress for you? By the way, I'm a Dub too, but living in Thailand. I had a good doctor in Stillorgan, Dublin, if you still would like to find one. He's a GP, but very interested in CFS and very sympathetic. He prescribed "low dose naltrxone" for me. He had had good success with it. Unfortunately, I have a very acidic stomach and so, it just wouldn't sit well in my stomach. But, the doctor told me that he'd never come across this problem before. So, it was just me. Anyway, you know how it is, there's not much a doctor can do to help with this doozy. I'm hoping you're back to life now. You commented here four years ago!

[@tomsale5142]

How are you now

[@tessgirl383]

I’m new ME . Your the best I’ve seen for a scared lady . Wondering if I could be even 7o% ! I would be happy with that !!! Thank you I’ve been soooo low

[@tessgirl383]

I got better ! But got covid again in December! . Back to square 3 . I’m just praying I can get back

[@tessgirl383]

See I thought I had ME & didn’t . Best not to label ourselves. I hope I don’t get it this time but I wake up tired😢

[@MsDunn93]

What did you have?

[@homemakersheart3614]

Thank you so much. You have inspired me more than many other sites, people and books I've read through the years. I tend to NOT stay in the rest mode, hence...years. I wish to ask some questions but unsure how. Do you have email? I love your clarity in speech and your inspiration, even on your down days.

[@theprimeoflife9263]

thank you so much for this lovely comment

[@matthiasphilips]

Is this still your email? I’m interested in how you got into pacing. I wanna give it a try myself but not sure where to start..

[@ConalCochran]

It sounds to me like you're an arrow being slowly pulled back on a bow string. You're building a tremendous reserve of potential energy. And making some fun vlogs along the way. Do you share your drawings anywhere online? I would love to see them.

[@theprimeoflife9263]

that's a great metaphor! And no, I don't share them, but thanks for asking :)

[@erstmalzupenny266]

Thanks for this informative and very likeable video! :) May I ask what your ME story is... how did it start? Did you get it after an infection? All the best

[@theprimeoflife9263]

I'm glad you liked it! It was triggered by a virus & by mould exposure!

[@izzygavin1061]

Hi, I'm from dublin also.. Love your attitude towards life! I'd love to know what doctor you go to in dublin ? Thanks x

[@JacquiQ]

that was very very good Ty. I winder if you git full recovery ?

[@vitalityfitness2852]

This is awesome. You are so smart and pretty. Do you have any tips for dealing with technology? I find I can limit household and chores but time on my smart phone seems infinite.... from forums to KZbin to messengers to social media...

[@kimwarburton8490]

Read physical books Do sudoku books A craft/hobby Learn a musical instrument

[@nitelite78]

1:33 No-one has explained this to me either. I am only just beginning to understand pacing having spent several months last year trying to exercise my way out of the illness.

[@vanjacalantropo]

I’m so confused about pacing. I have long Covid and it feels like I’ve been stuck in one place for a year now. I’m not able to do more today than I did few months ago. As soon as I do more than just walking short distance in my apartment I get PEM up to 24-48 hrs even if my hr remains under 100. I’m concerned about muscle weakness over time as a result of resting.. but my body clearly wants to rest:(

[@theprimeoflife9263]

I'm so sorry to hear this Lola, I'm sending love your way 💕 I hope you have a doctor on your side or someone to help you navigate through such a terrible illness. I'm not a doctor but if you're not yet even functioning to the point where pacing makes sense to think about, other things that help me a lot are taking supplements, vagus nerve stimulation (there are tutorials online), EFT, eating a whole foods diet. Something I learned as well is that just because one is lying down does not necessarily equal "rest" in terms of the body repairing itself. If your body is holding stress/is in fight or flight, it's inflamed and not in a space of rest. So finding ways to calm the body through the mind through breathing exercises, meditation and again vagus nerve reset (like putting a cold compress on the chest and back of the neck) are things that have allowed me to rest better and thus heal more effectively. I have ME rather than Long Covid, and every person's body is different, so of course none of this might be relevant for you. But I've been where you are to some extent and I thought I'd share some other things that have helped me. I'd also reccomend the Optimum Health Clinic's website, it's full of insights and resources that have helped me immensely.

[@ankari5257]

A good friend of mine has ME and she refuses to do this and when she has a good energy day she’ll waste it all messaging me and her other friends, I tell her to stop wasting so much energy on just messaging people but instead she should be focused on storing up energy over time but she feels bad if she doesn’t message people to my annoyance 😤

[@carissafisher7514]

Thanks for reminding me. I just told my daughter that I can't watch her basketball game tonight. She took it fine, and I already watched one of her games this week. How are you doing now?

[@Mathilde-ym3yl]

Feargha, I am so so happy to see that it's all working out for you. You're incredibly strong and I so hope that you get to visit all the countries you've been dreaming about! But I hope before then we'll have had plenty of indoor picnics 😉💝

[@theprimeoflife9263]

omg the indoor picnics are keeping me going

[@Mathilde-ym3yl]

Fearghalicious much love my friend 💕

[@gaoshikui88]

Hey thx for the video. Do you have any tips on knowing when it's OK to do something and when you shouldn't? I just have no idea what to do anymore. It feels like sometimes I crash for no reason and sometimes I don't, both doing the same thing on different days.

[@theprimeoflife9263]

Thank you for your comment! Unfortunately there doesn't seem to be a perfect science when it comes to working out what we're able for, it's mostly a long process of learning to listen to our bodies and know our limits more intimately. One thing that helped me a lot though is calming the nervous system. Because choices about activity has such huge consequences for us, it became a source of anxiety for me although I didn't recognise that at the time. I would debate a decision in my head soo much to the point where it was almost a spiral, or be locked in indecision up until moments before the decision has to be made- deciding I was too tired and going to bed only to get up again and decide to do the thing and then changing may mind again. What I realised is that in that panicked state I had no ability whatsoever to listen to my body's needs, I was too consumed with anxiety and my body was now in fight or flight- using energy on the stress itself, so that I'm at a deficit before I even start the activity. The best way to make the right decisions is to develop tools (listening to certain music, breathing, visualisations/fantasizing, meditation etc) to calm the body and mind so you can make decisions from a place other than fear. Oh, and maybe also consider where the inspiration for the action came from. If you have a sudden desire to go for a walk or see a friend or do something productive, it may be something you need for your holistic wellbeing. But if you feel the force driving you is obligation or shame or not wanting to let someone down, you're more likely to override your physical needs and make yourself sick (or at least I am). Things can't always be avoided and life is complicated but asking yourself if you're a) In a stress response and b) feeling pressured in some way to do an activity that you know deep down will make you I'll, these can be a good place to start understanding what your body needs from you in my personal experience. This obviously isn't science or peer reviewed research but it's what has helped me ❤️

[@Ydce1891]

I wish I heard of pacing a decade ago. I think I worse myself down so much and now I’m stuck on the couch.

[@theprimeoflife9263]

im so sorry to her that

[@Charlottefallows]

How long did your full recovery take

[@Charlottefallows]

I'm staying home to to get better

[@luigeledesma3101]

did you just figured this all out or has anyone told you about this recovery?

[@stephaniew4168]

Has this worked - 5 yrs later how are you?

[@sabs6666]

What do to with the lonelyness ? I really wanna have cuddles andaube dates and al this things..i feel lonlely if i try to be consisten😔

[@mari-ss2kv]

POV it's 2022. the pandemic is not over and you're learning how pacing can help with long Covid recovery

[@theprimeoflife9263]

Hi Mari! I'm so sorry to hear that you have long Covid, it's truly a nightmare and I am sending so much love and support your way

[@randallhesse5011]

Mitochondria autophagy, or is it acetylcholine production? Or is it neuro-inflammation?

[@LilySaintSin]

Mitochondrial dysfunction

[@tomsale5142]

​@@LilySaintSinI have asperger's heds ADHD so to me it's the autism causing iy

[@catherinecoppin6174]

Thanks best vidio that describes. Evan to the point o not talking or doing text energy. Just not there

[@johnnycaccitore681]

I am facinated by your vlogs..I have cfs and am encouraged by your positive attitude.Please add me to your email list.thanks

[@nitelite78]

0:52 "Don't worry about it" As someone with CFS I do worry about this. I think we should worry about the science of it. It helps us understand more. Plus it's interesting. But I understand you are speaking more to your viewers who don't know or understand about MECFS.

[@djesun1]

Are you here? Please help

[@randallhesse5011]

I was thinking about looking into methylene blue, D-Ribose, glutathione, berberine, L-Tyrosine, NADH, DHA, ALA, Mucuna pruriens, all of the B vitamins, Huperzine-A, L-Phenylalanine, Alpha GPC, CDP Choline, and other things. I don't know, I'm lost too.