It's devastating to think you won't get better, and the idea of pacing is scary, but healing is possible. It's taken me a long time, and I'm not fully there, but it's possible. I agree that reframing and learning what pacing is really helps. I also would say, i feel less lonely because I'm learning sand seeing more people dealing with this, but for as while it was horrible and very difficult to think there was nobody else in my circle. Off you are reading this, and you are going through the same, please know you are not alone, send little by little it will get better.
@GalacticTr4veller Oh man I'm very sorry you have this though really really happy your getting the results of getting better ~hugs ~ ❤I have a post I did 8 days ago regarding my grandson. He's 22 yrs old and man got hit while over in Barcelona (well if you read post no need to repeat)in January - came home so now he's been dx'd for a few months & yeah with trying to help he did have seem to help, yay he's walking though it hit him hard and now he's barely doing anything and is rejecting from the team of docs that are on top of LC. their suggestions. He does have a list of things he can try and my son wants to do the pacing ~ I am ordering the book, my question for you is and it really is just asking your opinion, see, I'm so worried about his mental state, I know he's traumatized & because of the hit of LC, then the months of trying stuff then crashing and totally wiped out, what motivated you to get going (simplification)past yes the right word, devastation? If that part is personal, I understand. Because I can copy your comment, leaving out your name to show him. Well, sending you positive energy healing thoughts of your continued healing to your whole healthy being ~ mind body well your spirit is wonderful by sharing such positivity ~ 💖☮
“Fatigue is associated with lazy or crazy.” This hit so close to home and breaks my heart. First, because we live in a societies that are so productivity-driven that the idea of resting is pathologized, and second that being mentally ill is still shameful. The notion of pacing would be easier for most to grasp if rest was recovery was a more prominent part of normal life, and maybe productivity would cease to be the most defining factor in a lot of our lives (myself included).
"pacing is the balance between activities and rest." Well put. I've built myself up from being barely able to walk to now having days where I hit 10k steps. Resting for me last summer was sitting outside with a book and then at then end of each chapter, pacing with a couple of hundred steps. I did my first day of 10k steps, 13 months post infection. I now feel like I'm close to full recovery. Does take a long time. Resting, pacing, a lot of fresh air, supplements, and lung strengthening tools etc, all helped me.
@@celeryeater8137 yes, I watched a lot of tv while resting up. Box sets. Anything to distract myself from symptoms and pain. Also bought myself a tablet to play games on. Didn't really limit usage but did have a daily routine. Get up 9-10am, wash myself, head outside, sit and read, do some pacing and then at about 4pm, go to bed and rest. It's then I'd watch a box set or UA-cam. It all really helped. A lot of people struggle with insomnia, if this is the case for you, suggest phenergan. It's an anti histamine so may help with some symptoms, but the added bonus is it'll help with sleep.
@@happyhero1985 Thanks for the quick reply. That’s good to know you could tolerate TV and games. What do you mean by box sets? And im currently on Pepcid but ill have to try that phenergan anti histamine because i do have insomnia
@@celeryeater8137 box sets like tv series seasons. I watched many. Yeah, phenergan is brilliant. Really helps with insomnia. Slow and steady, take it easy. Check out the groups on Facebook for further support. Lots of help and advice on there.
My Granny and my Mother later, who was a nurse, always had a CONVALESCENCE period for any family member that had been poorly. A word that seems to have vanished.
Delightfully comprehensive, good job presenters! Just wanted to highlight that for me, emotionally stressful situations probably contribute more to a crash than physical activity. I've had to eliminate or regulate certain people and groups as much as physical activities. I live by the "One Thing Per Day" rule. Sometimes the one thing is cooking a meal or taking a shower. On a good day, the one thing could be grocery shopping. This has helped me get beyond the guilt and shame that are such an energy drain themselves.
I've had ME for 11 years and I can say with certainty that resting & pacing are the most effective ways to avoid PEM. The less you do, the better you'll feel. The hard part is making this consistent. That's where the discipline really comes in!
easily healed ,if you message me i will tell you how to clear the dead virus debris out of your system,the cause of your problems,low atp levels are robbing you of a life ,if you get the coronavirus you will be a covid long hauler,
Thanks for recognising that it can take can take years to stabilise. I’ve been resting and pacing for a year with long covid and still have extreme relapses and symptoms out the blue it seems. Also fatigue management clinics tend to offer a 6 weeks program with a couple of 1:1s which may not be enough. It’s so complex and sometimes fatigue just dictates and manages you rather than the other way round.
I feel with you. 16 weeks post infection and I am still dealing with fatigue, weak arms, and muscular aches in my arms. Horrific. Right when I think I’m getting better I relapse. How are you feeling today?
This makes so much sense, in a competitive world where we are continually judged and made to feel guilty for trying to look after ourselves, like only we know how to.
Darren, SAME SAME SAME.....didn't realize how much smack down I WAS CAUSING to myself being on my phone! Thank you Darren!!!! I don't pace well. Been doing this 2.5 years. Modifie your actions. Absolutely.
I already followed the previous tip. Make sure after an activity that you always finish with energy to spare . Don’t drain all your energy away. I found Pacing very difficult but you have to try. It’s hard to know what energy you might have available for the day and when you have gone too far exerting yourself. It varies day by day and week by week . But you have to try.
When I was diagnosed with ME/CFS twenty three years ago my GP (an enlightened man) told me to think of it as bankruptcy. You start with a very different level of energy to ‘normal’ people, you are already in the red or bordering it. So assessing how to pace should involve calculating what you have, what you need for essentials such as yourself (including meditation etc) and how much is left over for everything else in order of priority. Thinking of it in concrete terms helped a lot.
@@RUNDMC1 thank you. I should add that it involves not spending what you can’t afford, leave it on the shelf! It somehow becomes much more real when seen in these terms.
I have been saying for over a year the best days are the worst days. On a bad day your symptoms will keep you in check. On a good day you need to rely on willpower and mindfulness. So it takes crashing over, and over, and over again to internalize that your capacity have changed and a cessation of symptoms doesn't signal a full recovery. The limitations are still there even when the symptoms aren't out in full force.
I do word puzzles like scrabble with competition in order to restore my full brain! There are times when I’m blank. But I’ve managed to improve my mind skills to gaining first place in my group! 😁
This. How to pace cognitively when we rely on our faltering brains for income and survival. We can try to work from home to preserve and pace our physical energy but how do we give ourselves room for cognitive pacing (or crashing) when we have financial needs to meet daily? There seems to be no solution beyond becoming reliant on others to a significant degree. Feeling desperate.
I cannot thank you enough for these videos. It's so incredibly helpful to hear from professionals and people with lived experiences of energy limiting illnesses. Thank you! I've been using HR monitoring and it's been so incredibly useful. I'm also noticing that pacing is not one but multiple approaches for me, HR pacing, rest periods, and tools like a stool in the kitchen, my mobilty scooter, all these pacing tools and methods combined ate what's working for me and helping me to avoid huge crashea
I have to have a 20 minute walk once a week or my symptoms get worse. But I need 2 days of bed rest (22 hours flat on my back each day) to recover from that. This year I learned I have a certain amount of energy each hour not each day. So I put on a heart rate monitor and do a 3 minute walk around the house. Then I wait on the couch till my average heart rate is 80bpm (this number will be different for each person) then I restart the heart rate session and do another 3 minute walk. Do this 7 times over 3-4 hours and I get my 20 minute walk in without needing recovery time the next day.
Learning I needed to pace hour to hour and not day to day reduced my pain by 95%. For a decade I took 90 opioids a month. Now I just use alieve and Tylenol.
Thank you once again. This is the hardest of all things and I didn't know that my target is much lower than I thought. And now I need a video on what resting is :-)
Thank you for this video. Pacing has been a real challenge so far. It’s so easy to do too much when you feel good for a few days. Could we get an update how the panel members with LC have been doing since it has been a while ago?
Thank you so much for helping so many! I am late to the party - living in NZ and we are definitely behind the wave that has washed through Europe. Feeling so lost until I found this - it has anchored me. The gift of having what I am feeling and experiencing validated. Thank you thank you!!!!
Just the term pacing, which I was not familiar with in this context, is a revelation. I don't know if I have long Covid or not, but it feels like that, and when I take time off from some tedious work, I tend to call myself lazy or escapist. That is psychologically draining. The term pacing feels nice and I am trying it out. Look forward to more exchanges on the topic.
What an eye-opener this video is, and what a gift. I learned so much, particularly about rest--what is and isn't rest--and about post-exertional-malaise. I now understand that I have been prolonging and worsening my ME or Post Viral Syndrome by starting back with exercise way too soon. I wish I had known this months ago! What a terrific panel, informed, articulate, and above all compassionate. I have bought the "Fighting Fatigue" book. Thank you very much for posting this! .
@@janybekorozaliev9052 oh God no - I'm still struggling on through. Since having covid at the very beginning April 2020 my health as never recovered and I doubt it ever will. I've subsequently been diagnosed with Coeliac Disease Pan-gastritis and recently osteoporosis of the spine. Prior to covid I was a runner/ spinning classes etc etc now I'm all on taking my dog for a walk - I'm far from being recovered- its not even on the horizon 💔
Excellent discussion! I wish I had known this when I first fell ill with ME/cfs. Pacing is so difficult. As a single mum, without any support, I just couldn't pace. Only now, that they've all left the nest, I'm able to. 22 years later.
low atp levels is what is keeping your me/cfs condition in place,if you get the coronavirus you will be a covid long hauler,your condition can be healed in a short space of time,i know what keeps all post viral conditions and all chronic fatigue conditions in place low atp levels ,if you dont know how to address the low atp levels you wont heal,i can type out a protocol if you want me too,your weak immune system cant expel dead virus debris from your system,thats what a post viral condition is ,this is easily addressed
@@prosperinfoella1636 No, you don't. So condescending to suggest those things to a patient over decades. And it seems you don't have the first idea what pacing really is. Rewatch this video. Stop gaslighting and victim blaming. Because that's what you do, with you toxic positivity.
@@AJansenNL What on earth are you talking about..I smell negativity. I meant we got this as in we can recover. You need to stop jumping to conclusion you lost soul.
This video makes so much sense. I have not had COVID thankfully but I had a severe allergic reaction in March 2021 and since then I’ve experienced the same symptoms of long Covid such as racing heart and fatigue brain fog. Sometimes all I can do is lay on the couch in silence. Understanding the why is a huge help so thank you very much for this video. I have signed up for the Gupta Program and praying it helps!
Brilliant! This explains so much of my experience with long haul COVID-19. Today, I'm about 98% recovered, but it's been an assembly of trail and error information that works for me. Fortunately, I've been in a position to pace myself but dealt with guilt on why I took the downtime. Sharing these experiences with others has helped me stay focused on my recovery. Sympathetic vs Parasympathetic.
Oh my goodness - my 22 year old grandson has long covid. He did have covid=10...fast forward he goes to college then over to Barcelona for a semester and feels "sick" like he thought he might have had food poising - he did see doctors there and was getting worse and wanted to come home. OH sorry this was in January - all I know from the beginning was that he lost weight, had pain, weakness and couldn't walk, smh this is killing me, so right now he does get exhausted, he's isolating himself and now I'm understanding the cognitive aspect of things along with his fatigued. Not sure what I expect why I'm posting on this particular video, because it's a 2nd one. I will be sending this to my son. What I wrote is all I know..love my son though want more information, yet I understand his position also. Thank you all ~
Whenever I try to exercise at the same level as before my March 2021 hospitalization for Covid-19 (pneumonia, pulmonary embolism, etc) I feel HORRIBLE for a few days, all my long Covid symptoms come back in full force, and then some, and I have to rest completely for several days before I begin to feel better. I have a bit of weight to lose and I just can't exercise anymore. Scary and very frustrating.
I am treating many patients with similar symptoms who have been 'dismissed' by their doctors as it being 'in their head' and this so so so resonates with me! I feel for you- just as I feel so about my patients. They are going through a hard time and the journey will need a lot of work- pun totally unintended! That work includes rest! Really grateful for the depth and the empathy in your sessions; as well as the science and the logic to support the content! Would love to learn more... Thanks a lot! for your effort and for your dedication!
Remember when we were in grade school, and we took naps! And after had milk and a snack! It was tought to take a nap, no noise, no book reading no nothing, just sleep. I have a hard time napping or resting, its not in my nature. And if I do lay down, I have something on my nightstand to play with or read! Its terrible! But with these symptoms of lingering covid, I am so weak at times I can't do anything, and I do feel guilty! I sure hope I get better soon! Thank you for all your help! You are all such wonderful people, caring people at what you do! Such kind hearts! Blessings to you all for making this video to help us all! Kindness will be returned i guarantee it!♥️♥️🙋♀️
Gez, thank you so much fot sharing this. I can totally relate because every time I think I've fully recovered (since March 2020) I relapse after what is a less-than-normal activity level for me. Guaranteed, I've always been a super performer, yet this makes it even more frustrating for those of us who have functioned at a super-human level our whole lives and now have to deal with this crap.
Thank you for this video, it's been really helpful. I need to stop feeling guilty when I need to rest and ignore the voices that tell me I'm being lazy.
Super interesting and thank you so much, yet again. I just wanted to share the fact that my long covid illness has been evolving over the last year in a much more linear way than what many long haulers seem to experience and what seems to be discussed here in the video: people having better days and worse days, days where they feel almost normal, and others with very clear PEM and therefore quite an up and down experience. For absolutely ages i was never really in a state where i would feel like ‘right, i almost feel like i want to go for a very short run, shall i try it and see what happens’ - I never got to that stage, i was just too drained to even contemplate going for a run, it didn’t make any sense to try. And when i did try a little bit more like a very gentle bike ride, maybe three of those over a week around christmas time, i think i did experience PEM, but it wasn’t like a massive relapse, just a slight increase in intensity of what i was feeling like anyways. Lately i feel like the physical limitations are less present but the mental ones remain and are the most debilitating, and there again they just are there everyday, in quite a constant way. I’m a year and 20 days into LC, but i relapsed with it suddenly, 3 months after ‘apparent recovery’ from very mild covid infection. If anyone wants to respond. No worries if not! I still think all this is very relevant so thank you..!
What need is proper employment law protecting us, and financial help the government until we recover. I am on the verge of loosing my job and no cares that I am getting better, just really slowly. Hence been forced back to work after I have already had a crash.
I’ve got ADHD so trying to manage my time around both long covid and ADHD afternoon energy crash is hard work. Especially as a parent to 4 and 6 year old. I tried to carry on with my evening yoga/gentle exercise but I found that too much so then I was racked with guilt that being over weight made my covid worse but I can’t exercise to try and help me be fitter. I feel like I’m finally getting a balance but gah it’s hard trying to balance life and everything else and rest!
ADHD is a risk factor for long covid and I’d guess struggling to pace ourselves might be the issue. Not sure if having kids is a risk factor, but I’d be surprised if it wasn’t :-0
@@jamiejones8508 since I wrote this I’ve had my ADHD medicated and things have vastly improved. I haven’t gone back to my old workout routine but fit regular exercise into my day to day life cycling most places and walking. I find I have nearly zero long covid symptoms now too! What a difference a year makes.
Great video, thanks. 8 months into long covid and have been 'pacing' for about 6 of those months. It definitely helps but so hard to do it consistently well. The video has given me fresh insights.
@@janybekorozaliev9052 hi, yes I'm fully recovered now. Long covid for about 12 months and then in January I tried something called the Lightning Process which has helped me enormously. Some people are very cynical about it but my experience confirms that for some chronic conditions it can be very effective. Hope you are well
@@michaelatkinson4240 that's good that you've recovered! However I am a bit skeptical of the lightning process, do you feel that maybe it's just lying to yourself or does it really cure all the symptoms of long covid?
@@janybekorozaliev9052In my case I have recovered from all of the remaining symptoms and I believe it is a real effect and not just a psychological trick. The science behind the LP is actually well established (neuro-plasticity and the placebo effect). I can understand the skepticism. If I hadn't tried it myself I would also be doubtful. It's not a miracle cure; it requires consistent application of the process over time - in my case about 4 months.
Thank you so much for this. I am now 80% recovered after 16 months of long covid. I’ve been getting help with pacing (and mindset) for the past 5 months from an NLP coach who specialises in ME/CFS.
@@janybekorozaliev9052 Hi, yes. I am fully recovered and leading a normal life. I’m back at work, walking my dog and practising difficult yoga. I’m not sure exactly when I recovered. It was a gradual process. It was hard work. I needed a very slow phased return to work over 3 months. I just kept slowly nudging myself forward. I initially didn’t have 2 “activity” days in a row. I had rest days in-between. The most important thing was that I was kind to myself. I talked to myself like you’d speak to a small child who needed soothing and gentle encouragement. I’ve been at work fully since January 2022 (I got covid in March 2020), but for the first 9 months or so we had no idea what long covid was, so all those first months were wasted. So you might recover even quicker than me. And during that time, when I was partially recovered, life wasn’t as bad as when I was really ill. So, yeah, you can do this. Good luck 👍🏻❤️
@@jhonybraavo You name a symptom and I had it. I prioritised lowering my inflammation levels and getting out of “fight or flight” and into “rest and digest”. I ate a high fibre diet and took probiotics (kefir, sauerkraut, kimchi, kombucha). I took naps during the day whenever I needed them. I lay down and listened to a yoga nidra once or twice per day. I started walking slowly, for 5 minutes every second day, then after a week increased to 10 minutes, and so on. I sat in my garden every morning to get the morning light, and I did 5 minutes of positive self talk while I drank my tea. I nudged myself forward gently, but I didn’t push myself. If I made a mistake, I didn’t beat myself up about it (negative self talk keeps you in fight or flight). I deleted all my social media because there was too much negativity and too many scary articles in the long covid groups. I stopped watching the news. Be kind to yourself. Get rid of all the sources of stress that you can control. Find the best balance between activity and rest. You’ve got this ❤️
Today is the first day that I've had enough energy to listen to (not watch) one of your videos, and I'm so glad that I did. Nothing very new to me here after two years with severe long covid, but so much validation and it is the most that I have heard people taking who all really get it. Especially Sue, everything that she said really resonated with my experience. Thanks for making this, and for stopping it before an hour, will definitely check out part 2 and other vids another day.
I also find with fibromyalgia is the humidity in the air. It took me many years to spot that trigger. Sometimes it can be very humid even if it’s not particularly hot.
I found it helpful to think of resting as ‘recharging’. Somehow that feels more like I’m doing something useful by not doing anything! And thinking of my energy levels as a battery that I need to keep topped up regularly. If I let it go into the low-power zone I can’t function and then need to rest for longer.
This was so extremely helpful. I am starting again with bed rest and only getting up to eat, monitoring everything to find patterns. Thank you so much.
“We have a big book on how to treat long haulers but they are too tired to read it”. Fittingly, as a long hauler, I don’t have the concentration enough to listen to this 48 minute video. 😉 Will try to listen in bits.
Thank you, Gez - and the whole panel (what a fantastic assortment of people to collaborate and contribute to this discussion). I really resonate with so many ideas communicated here: learning to rest, de-stigmatizing rest, changing expectations and perhaps training ourselves out of 'A-type' personalities and patterns, and really attuning to holistic energy management in order to support wellbeing and illness management and/or recovery. I also reflected on how tricky this is, like - anything preventative can slip under the radar and be rendered invisible - thus, if one really masters the art of pacing and then is less symptomatic and more 'well,' others may not see or recognize the ongoing need for pacing. I also learned and felt reminded of how activities like social media or stimulating entertainment can stress our system and to consider the nuances of exertion and rest. Ongoing gratitude for your work and this service of education: you seem to continue to choose to protect and direct a significant portion of your energy and attention to be such a source of help for so many. I don't take that for granted, and I am deeply appreciative.
@@RUNDMC1 Thank you - I got sick at the same time as you, and I keep learning and experimenting. I find that I will have little relative upticks of improvement and then seem to plateau at a new level (with some ups and downs) - and then I keep letting time help, as well as tinkering with new supports. Hopefully, that slow trajectory will keep trending in that direction of stabilization and healing. This is truly an experience that feels like the invitation is to let it change my life rather than fantasize or get frustrated that perhaps I can't currently (and perhaps won't ever) simply resume my old habits and baseline. On tough days, I can still experience a little wave of hopelessness or grief - but on positive days, I feel hopeful for deeper recovery yet and even grateful for some of the transformative changes in my life. I wish you ongoing improvement, too! I really can't thank you enough: you and your guests have been HUGELY instrumental in my ability to respond with agency and knowledge. If you're comfortable, could you please send me your email? I might like to send a more personalized note of appreciation. (But no pressure!) Take care, and thanks for your good wishes.
Perfect timing. At least for myself. I'm mostly cured at least I think I am. I'm currently in Spain taking care of a family member (not COVID related). Before COVID I was cycling quite often. Had about 57 resting HR so I was in relatively good shape. Got COVID back in 12/20. Long hauled. Took me about 4 months to get better. Now that I'm in Spain I'm trying to continue my cycling but this has proven to be challenging. I cannot perform like I did before COVID. I cannot get up any hills and nothing in Spain is flat. I don't know if it is that I'm out of shape again or of I am experiencing COVID damage. Example, I tried going up a steep hill and my HR easily got to 187. I would have to stop, let my HR go down and get back at it again till I finished. It's so frustrating because I want to go and I feel like I'm holding back the other people in my group. I feel like I'm fat and lazy. At least I feel that is how people see me. I want to go but my body simply does not want to go.
@@RUNDMC1 thanks I will now. I thought I was fully recovered till I came here. It is so frustrating seeing everyone else perform at their best while my heart feels like it's about to explode.
Be careful. I was progressively getting better last fall after 8 months of gradual improvement. I tried to do long hikes and I would hit a wall and my heart would race. It caused me to "crash" and I felt like I was having to start over!
@@Unitedstatesian I think it is important to look at this almost in the context of Epstein-Barr virus. Obviously the mechanisms with which the virus and the inflammatory stage activates the TH1 pathway is different, and the physiologic manifestations that occur with exercise or increased heart rate are different, that the end outcome is similar, one step forward, three steps back. The more you do today, the less you will do on Thursday and Friday. I would recommend looking into protocols for mast cell activation syndrome, Dr Bruce Patterson and Dr Tina Peers have videos discussing this aspect of the inflammatory process. Increasing Your heart rate is like pouring fuel on the smoldering embers. They burst into flames again and your body becomes overwhelmed. There is a very good analogy somewhere in this thread about someone having a broken foot or leg. Even though they may look healthy, there is no possible way they could be expected to run a race with a bone that has not yet healed. It would be a minimum of 6 to 8 weeks before any type of activity would even be considered. The devil with postcovered symptoms, is that you look totally healthy, normal, and your brain tells you that you can do these things, until you do, and then there is a rude awakening :-(
Thank you for this video. Heading to month 7 of long covid and recovering from my 2nd major crash. I keep hearing pace & rest but had no idea how to accomplish this. Now I do. Thank you!
Great to hear from the American guy that people with chronic illnesses who have to pace are seen as lazy or crazy. Just goes to show how badly treated people with ME and CF have been. Perhaps a public apology from Physios would be a good idea.
I have been sick with ME for over 35 years. I’ve tried everything and I am presently trying to use my Fitbit to stay within my AT, which by the way I reach by simply turning over. I am really interested in and aiming to improve my pacing skills.
you have low atp levels thats whats kept you stuck in m/e if you get covid you will be a covid long hauler,your weak immune system cant expel dead virus debris from your system,thats what a post viral or chronic fatigue condition is ,i can tell you how to heal do you live in the uk that will be very handy,if i told you your condition can be ended in about 8 hours the cost 7.49 uk pounds ,you think i am messing,nope i wouldnot do that with anyone who is ill
Im really THANKFUL that I found you! You have helped me so much more than the Doctors I have seen here in Germany... absolutely not empathy definally they don't take me serious.
☹ The doctors in the beginning were cruelly gaslighting me. Evil. But I found one who is willing to to do the tests I have asked for. I hope you find some human beings and not robot doctors.
I’m Covid positive end of April 2021. I recovered in 2 weeks but then exercised and crashed. So I’ve decided to rest full time for 2 months. Nothing more than walking around the house. Hope that helps speeds the recovery up!
I was the same late April, and only had a slight fever for 3 days. But I had a racing heart was my first symptom. Then once I felt better and it was about 3 or 3 weeks, I started to do my regular activities and boy did I crash. I had some side affects from the meds the doctors were giving me for the fast heart rate and I figured that was why I was so weak in legs and arms and felt luke I was gonna black out all the time. But then saw all the info on fatigue and long covid! I dont think we could say that we are long covid yet. I heard them say 8 months or so is long covid. So maybe we have a chance!!! I am starting a high vitamin C regime once I get my gut healthy then I am gonna apply a protocol of super foods to help my immune system! Good luck!
Great video it certainly gives you a different insight. Ive had ME/CFS for 14 years and like many others rubbish at pacing. Sue I loved your book wish i had it 14 years ago!!
I don't use language like 'I'm sorry I'm tired'. I am much more specific - and using an HR/HRV monitor, I really don't have emotional energy to expend on guilt - I'm at my PEM threshold and I have to rest for safety reasons. End of discussion. There is no reason why I should feel guilty I'm following basic safety protocol for people with ME/CFS. End of discussion.
Gez, honestly, as a seasoned athlete, you are one of the few people in the entire world who actually understands, and you are gradually connecting with the other super-performers in the world who truly understand - unfortunately, the professionals who are themselves long-haulers and can no longer live their lives and careers just "theorizing" based on old paradigms. They are now the heroes bridging the huge divide between those who know and those who just think they know.
Another great video and the part of the recovery process I'm rubbish at (pacing) some helpful food for thought here to help me on my own journey to wellness. Looking forward to part 2. Cheers 😊
This is very helpful! But its hard to stop everything. I live alone, and I have a garden, dogs and a house, bills, grocery shopping to all manage. Its been very difficult. In the beginning of my covid I was back and forth to the cardiologist, doctors because of my symptoms. And then all the meds the cardiologist had me on to slow my heart rate down just made me worse, I could barely walk out to my garden to put the water on. Getting dressed and showers were very hard because I had no energy and was very dizzy. Now I am off all the meds and I am just doing supplements. But I still have fatigue and racing heart. I figured out what I was doing, I was doing too much all in one day when I felt better, and then I was literally down for 2 or 3 days. It scared me because I thought something else was wrong with me. But I now have realized that I need to do only certain jobs each day! Pace my self. The only hard thing now is driving and shopping. I thought I was ok one day to drive and get blood work done at a lab inside the grocery store. Well after the lab I walked a bit around the store and I got light headed, my legs got weak, my heart was racing and then panic set in. I then just got a few items left the store and sat in my car till I felt better and drove home. I have never felt this horrible in my entire life, and the fear and anxiety that this brings with it makes it even harder. I am praying with pacing and taking my supplements will eventually get me over this. Its only been 2 and a half months for me. Im coming up on 3 months and I do feel better, but I am not functioning to my 100% level. I did not have any pneumonia only a head cold and fever for 3 days. My symptoms were racing heart and ill feeling, and it took almost 3 weeks before I tested positive. I find that strange. But my heart rate still races at times even when I'm asleep I get woke up in the middle of the night with a racing heart. I live not far from Stockton, I really would like to get into contact with the gentleman from UOP. Does he have a clinic for long covid patients?
@@RUNDMC1 i didn't see an attachment, but I will try and get ahold of Todd directly in stockton. I will look him up! Yes, I am watching all the way out her in California! I have always loved England! When I visited Europe I had a wonderful time and I have to say the British and Italians were the nicest people! So bravo to you mate!!! Have a wonderful day!
D - howdy neighbor! (I live near Yosemite.) How are you doing these days? I had cv last sept, followed by long cv, both so mild I had no thought of it being cv! Gez' vid on "Heres how to treat lc" set me on my path to recovery.
So eager to hear the second part,no doubt will fall asleep half way through as this.thought laying down with resp support would let me listen through. Was having lots of these problems before 'alleged' Covid and presumptive MG. Pacing has been frustrating, MD,PT needs to listen to this video.
😊Thank you so much for these infomative videos. It's like a breath of fresh air to discover you and to see that you speak my language. I've been trying to recover from Covid-19 since Oct. 2020 and I'm 81 years young/old. ❤
Thank you so much for this informative video ..so much need it from us who have been told to pace ourselves but with no real understanding what that involves and in relation to crashes, from our part and shockingly theirs .
The better I feel, and the stronger, there's a tendency to forget to manage and pace with the result of physically running oneself down. Managing to lose 45 kilos in two years, I'm now a thin, normal sized male. There's more energy, I recover quicker, but it's frustrating dealing with aftereffects.
Hey Gez one again thank you for the video. It really puts some of the things in perspective. Your videos have helped me trememndously in my own journey; Im about 9 months in. May I ask have you started running at all? Thanks
Gez started posting these video’s about 14 months ago, when so many of us had no idea what was going on with our bodies and why we didn’t seem to be recovering from Covid. The video’s were a lifeline for us, just knowing that we weren’t the only ones suffering, and knowing other people were experiencing similar problems. He used his limited energy to help all of us, by trying to give us information. I feel that if it helps him to have ads in the video, I’m all for it, because I know there are thousands of people that have benefited from Gez videos. I’ll never be able to thank you enough Gez.
Thanks Gez! I find it so hard to rest! Some good suggestions from the panel! Personally, I have found that listening to Yoga Nidra meditation videos to be the most restful. It seems to both rest and help with the neurological issues. It also is active mentally without taking energy.
So great to know what I am going through as a long Covid victim is totally "normal" ( I had a narrow escape from ICU but was nearly 50 days hospitalized) . I am fighting this since early April 2021, so 6 months into it. Hearing you experts confirm my own observations was simply great! Thank you for sharing your knowledge on this subject. A few notes struck familiar chords: 1) recognizing and accepting physical and cognitive limitations and setting up barriers for myself based on these, for myself, and between myself and others 2) knowing my organs intimately (in my case my digestive system). Eating has to be thoughtful, and free of stressful conversations so as not to consume so much energy. 3) finding physical activities that generate oxygen ( yoga and walking in open areas. Both activities require deep breathing but don't stress me out). And 4) doing the things I really like and am good at, which give me security and confidence. This video was so good!
Wow! Excellent for me. I will need to replay a few times. I like detail. Do you have a “manual”, book or pamphlet that summarizes? I think Ruth said it great amidst professionals … but it’s a ton of info …
Excellent video. I’m just sorry I didn’t see this 2 years ago, maybe my PEM wouldn’t be so debilitating. I tried pacing my activists in chunks, then sit down..:loung a bit on the chair, then resume whatever I was doing. It helped a little. More videos like this, pls. All of ur videos r so helpful. Thank you!
This has been such a help. I am going to send a link to the long Covid clinic people I deal with on line. They are urging me to exercise even though i have found it makes me crash. My comments about pacing fall on deaf ears.
I would like to see a video on the differences between post viral and bacterial illness.i do believe there to be huge differences. I got sick in a motel room way back in 81. Got an ulcer 2 weeks after the illness,then slowly progressed into a slow downward spiral.then in 1993 all he'll broke loose.i went through severe cytokine storm...it damn near killed me!
That’s scary that so many years later it hit you out of nowhere with a cytokine storm. ☹ It would be nice if you just get sick and then be done with it already.
I need to know there is a solution. I don’t have a life where “pacing”, laying down, doing nothing is an option. This video has CRUSHED me to the core. I cannot live this way. I need to know that in the two years since this video solutions are in place to get this virus out of my body.
Gez. How do we balance this against The video with Tommy Wood? This video goes the route of pacing and minimal physical / mental exertion. But Tommy Wood stated “try something new - project or skill set - to stimulate brain activity and retraining.”
You can do something new that doesn’t take much energy! It all has to be within your energy envelope of course and if you’re bed bound and 2 minutes attention on duolingo is too much then this advice is probably hard to enact. But for most of us, we can practice something new that isn’t too taxing and keeps us inside our envelope :)
My Question is how can you pace when you have a husband, school aged children and responsibilities that need to be taken care of that noone else can or will do? This has been my main challenge with the whole pacing concept that is needed to recover from long covid/CFS. For example, I crash and relapse with horrid physical symptoms every month like clockwork because my 18 month old son doesnt care that mommy needs to rest. He is walking and going thru a wonderfully adorable stage but its exhausting. I crash because I have to chase him around the house and bathe feed and teach and all the things he needs in order to grow and develop. Then I have a 7 year old and 13 year old sons who need to be taken to and from school, need help with homework, time with mommy, lunches made for school, dinner cooked etc. I do not have any relatives who live near me so I have a huge burden as a mom and wife. My husband is a long hauler too and has to work and take care of us. I also work from home and when the fatigue hits I cannot fight it. But life goes on and I'm always needed in my household. So yes pacing for me has been a catch 22. Long covid has been one of the most challenging conditions I've ever experienced! But it's my journey and I refuse to give up hope that one day I'll recover from this dreadful condition. I so appreciate these videos though they help me try and understand this new body and brain I am living in. That in and of itself is quite healing and provides so much hope! So thank you from the bottom of my long hauler heart and big hugs to any of my fellow long haulers out there. (Long hauler/Covid survivor since March 30, 2020)
There is no simple answer to this Rachel - it might be worth checking out the Long Covid Kids groups as I know they’ve got a bunch of mums on there who are experiencing this too. Wishing you the best in your recovery!
@@RUNDMC1 thank you, heres to more good days than bad and good health to you as well. I appreciate the work you're doing to help our Long Covid community, its truly making a difference. Cheers!
@ Rachel Johnson How are you feeling today? Hope you are better. I am 12 weeks post Covid , and dealing with debilitating fatigue. I also have children (11 and 14) and I always tell people the responsibility at the house is impossible to get any kind of rest.
Hello, I am a mom with ME/CFS with 4 small children (ages 9-3) and I actually got ME following the birth of my 3rd child. (Yes, I had a fourth during horrible symptoms). I went from completely bedbound, or mostly housebound, to now working 3 days a week, and some days I can't even make it to work, most of my sick days are exhausted. I also have a husband, and he is at work, so I do most of the exact same chores you do. I learned to take a break whenever I need it, I will go lock myself in a dark room as often as possible when I let my Littles do a quiet activity. I scaled my life and expectations WAY down. I don't attend much events, they cause me overstimulatory overwhelm. I actually found that working part time in a chair helped me get 50% better. I have a lot less noise and stimulus, compared to being at home, and a change of situation is helpful to keeping my mind off of symptoms (even though at work I often feel I'll collapse). I have learned a lot of coping techniques from Dan Bulgio here on youtube hugely helpful. This summer I was able to even often. Go camping without crashing. But in the winter I had a bit of a relapse. I would not same I'm now well, but at least 50-60 better. So there is hope, even with small children. Boundaries and delegation and relaxation.
I’ve been told by my long covid cardiologist that she wants me to exercise more. I work full time and the job I have I walk most days up to 4-5 miles a day. This cardiologist told me that this walking at work does not count. Quitting time all I have the energy to do is too walk to my car and upon arriving at home I barely make it inside my home before collapsing
@@RUNDMC1 iam 7 weeks in now following moderna booster with racing heart, awful fatigue and muscle pain. Ecg, echo and 7 day holter normal thank goodness but doesn't help feeling so ill. When I had the holter fitted they said they had loads of referrals following moderna booster. Have started some of the vitamins you have recommended on your video. Another friend's mum is now on beta blockers and a friend has ongoing horrendous shingles on her face- reactivated by moderna booster. They are also querying post vaccine pots with me as well. Hope you improve soon!
I just had a relapse of symptoms after my Monerna Booster. The Work Insurance Board here in Canada cut me off because the Booster was not work related. So now I will have to back to work full time with no pacing. I work on Fire Alarms which involves thousands of steps each and everyday along with climbing dozens of flights of stairs. Than there screen on time all day as well. We also have to drive to the buildings and home again. The average day are 9 to 10 hours long with a week of on call time each month. So there could be 20 hour days with another 9 or 10 hours the next day. This is going to send me to hospital...
@@davidgough4750 so sorry to hear that. It's so unfair you do the right thing and get vaccinated and have your life taken away from you. Every medical person says 'well these things are new so we don't know what they are doing'. I just wish I never had my booster. Hope you start to feel better soon
@@RUNDMC1 I am very sorry to hear that. Are you feeling better now? I had a bad first dose before contracting covid. I am scared that if I get another dose it might worsen my long covid symptoms as well. Everybody says the vaccine helps with long haul symptoms but I keep coming across reports which state the contrary.
It's devastating to think you won't get better, and the idea of pacing is scary, but healing is possible. It's taken me a long time, and I'm not fully there, but it's possible. I agree that reframing and learning what pacing is really helps. I also would say, i feel less lonely because I'm learning sand seeing more people dealing with this, but for as while it was horrible and very difficult to think there was nobody else in my circle. Off you are reading this, and you are going through the same, please know you are not alone, send little by little it will get better.
Thank you!!
@GalacticTr4veller Oh man I'm very sorry you have this though really really happy your getting the results of getting better ~hugs ~ ❤I have a post I did 8 days ago regarding my grandson. He's 22 yrs old and man got hit while over in Barcelona (well if you read post no need to repeat)in January - came home so now he's been dx'd for a few months & yeah with trying to help he did have seem to help, yay he's walking though it hit him hard and now he's barely doing anything and is rejecting from the team of docs that are on top of LC. their suggestions. He does have a list of things he can try and my son wants to do the pacing ~ I am ordering the book, my question for you is and it really is just asking your opinion, see, I'm so worried about his mental state, I know he's traumatized & because of the hit of LC, then the months of trying stuff then crashing and totally wiped out, what motivated you to get going (simplification)past yes the right word, devastation? If that part is personal, I understand. Because I can copy your comment, leaving out your name to show him. Well, sending you positive energy healing thoughts of your continued healing to your whole healthy being ~ mind body well your spirit is wonderful by sharing such positivity ~ 💖☮
“Fatigue is associated with lazy or crazy.” This hit so close to home and breaks my heart. First, because we live in a societies that are so productivity-driven that the idea of resting is pathologized, and second that being mentally ill is still shameful. The notion of pacing would be easier for most to grasp if rest was recovery was a more prominent part of normal life, and maybe productivity would cease to be the most defining factor in a lot of our lives (myself included).
"pacing is the balance between activities and rest." Well put. I've built myself up from being barely able to walk to now having days where I hit 10k steps. Resting for me last summer was sitting outside with a book and then at then end of each chapter, pacing with a couple of hundred steps. I did my first day of 10k steps, 13 months post infection. I now feel like I'm close to full recovery. Does take a long time. Resting, pacing, a lot of fresh air, supplements, and lung strengthening tools etc, all helped me.
What about using the TV, internet, smartphone? Did you limit usage and how much?
@@celeryeater8137 yes, I watched a lot of tv while resting up. Box sets. Anything to distract myself from symptoms and pain. Also bought myself a tablet to play games on. Didn't really limit usage but did have a daily routine. Get up 9-10am, wash myself, head outside, sit and read, do some pacing and then at about 4pm, go to bed and rest. It's then I'd watch a box set or UA-cam. It all really helped. A lot of people struggle with insomnia, if this is the case for you, suggest phenergan. It's an anti histamine so may help with some symptoms, but the added bonus is it'll help with sleep.
@@happyhero1985 Thanks for the quick reply. That’s good to know you could tolerate TV and games. What do you mean by box sets?
And im currently on Pepcid but ill have to try that phenergan anti histamine because i do have insomnia
@@celeryeater8137 box sets like tv series seasons. I watched many. Yeah, phenergan is brilliant. Really helps with insomnia. Slow and steady, take it easy. Check out the groups on Facebook for further support. Lots of help and advice on there.
If we find ourselves dreading minimal exertion…and seeing oneself going from able enthusiasm to exertion dread.
My Granny and my Mother later, who was a nurse, always had a CONVALESCENCE period for any family member that had been poorly. A word that seems to have vanished.
Delightfully comprehensive, good job presenters! Just wanted to highlight that for me, emotionally stressful situations probably contribute more to a crash than physical activity. I've had to eliminate or regulate certain people and groups as much as physical activities. I live by the "One Thing Per Day" rule. Sometimes the one thing is cooking a meal or taking a shower. On a good day, the one thing could be grocery shopping. This has helped me get beyond the guilt and shame that are such an energy drain themselves.
I've had ME for 11 years and I can say with certainty that resting & pacing are the most effective ways to avoid PEM. The less you do, the better you'll feel. The hard part is making this consistent. That's where the discipline really comes in!
easily healed ,if you message me i will tell you how to clear the dead virus debris out of your system,the cause of your problems,low atp levels are robbing you of a life ,if you get the coronavirus you will be a covid long hauler,
I totally agree. Ive had mild ME for about 30 years, moderate for the past 12 and Pacing is the only thing that helps but it is so hard to do.
Thanks for recognising that it can take can take years to stabilise. I’ve been resting and pacing for a year with long covid and still have extreme relapses and symptoms out the blue it seems. Also fatigue management clinics tend to offer a 6 weeks program with a couple of 1:1s which may not be enough. It’s so complex and sometimes fatigue just dictates and manages you rather than the other way round.
Hi,what are your symptoms.and how you prevent relapses
I agree with you 200 percent been experiencing the same thing
I feel with you. 16 weeks post infection and I am still dealing with fatigue, weak arms, and muscular aches in my arms. Horrific. Right when I think I’m getting better I relapse. How are you feeling today?
This makes so much sense, in a competitive world where we are continually judged and made to feel guilty for trying to look after ourselves, like only we know how to.
So useful. Have found pacing so difficult. Finally 16 months in beginning to get it! Heres to a summer of chilling! Thanks to all involved.
Thanks Edward for your continued support!
Edward how are you now? Did you fully recover?
Darren, SAME SAME SAME.....didn't realize how much smack down I WAS CAUSING to myself being on my phone! Thank you Darren!!!!
I don't pace well.
Been doing this 2.5 years.
Modifie your actions.
Absolutely.
Biggest barrier to pacing for me is feeling better and thinking I can push my exertion a little further.
I already followed the previous tip. Make sure after an activity that you always finish with energy to spare . Don’t drain all your energy away. I found Pacing very difficult but you have to try. It’s hard to know what energy you might have available for the day and when you have gone too far exerting yourself. It varies day by day and week by week . But you have to try.
low atp levels are robbing you of life and energy if you message me i will show you the way
@@Beekind799 I’m interested in your knowledge
Pablo are you fully healed now? Any more symptoms?
Thank you so much. I cannot express how helpful your videos have been, especially this one and the one with the 10 tips. I am really, truly grateful.
I’m glad I’ve managed to help in some small way! Best of luck with your recovery Isabel
When I was diagnosed with ME/CFS twenty three years ago my GP (an enlightened man) told me to think of it as bankruptcy. You start with a very different level of energy to ‘normal’ people, you are already in the red or bordering it. So assessing how to pace should involve calculating what you have, what you need for essentials such as yourself (including meditation etc) and how much is left over for everything else in order of priority. Thinking of it in concrete terms helped a lot.
Very good advice - thank you Jan!
@@RUNDMC1 thank you. I should add that it involves not spending what you can’t afford, leave it on the shelf! It somehow becomes much more real when seen in these terms.
@@Beekind799 Don't keep it secret, share it for the world to see.
@@lordasaki can you not see the mesage below your message,i put the healing protocol up nearly every day ,
@@Beekind799 No, I cannot.
I have been saying for over a year the best days are the worst days. On a bad day your symptoms will keep you in check. On a good day you need to rely on willpower and mindfulness. So it takes crashing over, and over, and over again to internalize that your capacity have changed and a cessation of symptoms doesn't signal a full recovery. The limitations are still there even when the symptoms aren't out in full force.
Physical pacing is fairly easy to manage, cognitive pacing is my biggest challenge. I did a puzzle yesterday and was completely exhausted afterwards!
I know, I get so bored I need to keep my mind busy some how
I do word puzzles like scrabble with competition in order to restore my full brain! There are times when I’m blank. But I’ve managed to improve my mind skills to gaining first place in my group! 😁
I work from home and it’s so mentally exhausting
This. How to pace cognitively when we rely on our faltering brains for income and survival. We can try to work from home to preserve and pace our physical energy but how do we give ourselves room for cognitive pacing (or crashing) when we have financial needs to meet daily? There seems to be no solution beyond becoming reliant on others to a significant degree. Feeling desperate.
I cannot thank you enough for these videos. It's so incredibly helpful to hear from professionals and people with lived experiences of energy limiting illnesses. Thank you!
I've been using HR monitoring and it's been so incredibly useful. I'm also noticing that pacing is not one but multiple approaches for me, HR pacing, rest periods, and tools like a stool in the kitchen, my mobilty scooter, all these pacing tools and methods combined ate what's working for me and helping me to avoid huge crashea
I have to have a 20 minute walk once a week or my symptoms get worse. But I need 2 days of bed rest (22 hours flat on my back each day) to recover from that. This year I learned I have a certain amount of energy each hour not each day.
So I put on a heart rate monitor and do a 3 minute walk around the house. Then I wait on the couch till my average heart rate is 80bpm (this number will be different for each person) then I restart the heart rate session and do another 3 minute walk. Do this 7 times over 3-4 hours and I get my 20 minute walk in without needing recovery time the next day.
A very good solution!
Learning I needed to pace hour to hour and not day to day reduced my pain by 95%. For a decade I took 90 opioids a month. Now I just use alieve and Tylenol.
Thank you once again. This is the hardest of all things and I didn't know that my target is much lower than I thought. And now I need a video on what resting is :-)
Mad huh?! Hope you’re doing OK Eva :)
Thank you for this video. Pacing has been a real challenge so far. It’s so easy to do too much when you feel good for a few days.
Could we get an update how the panel members with LC have been doing since it has been a while ago?
Thank you so much for helping so many! I am late to the party - living in NZ and we are definitely behind the wave that has washed through Europe. Feeling so lost until I found this - it has anchored me. The gift of having what I am feeling and experiencing validated. Thank you thank you!!!!
Best of luck in your recovery Roisin!
Just the term pacing, which I was not familiar with in this context, is a revelation. I don't know if I have long Covid or not, but it feels like that, and when I take time off from some tedious work, I tend to call myself lazy or escapist. That is psychologically draining. The term pacing feels nice and I am trying it out. Look forward to more exchanges on the topic.
We got this people !
Thank you for gathering together such a knowledgeable panel of experts. This has been very useful.
What an eye-opener this video is, and what a gift. I learned so much, particularly about rest--what is and isn't rest--and about post-exertional-malaise. I now understand that I have been prolonging and worsening my ME or Post Viral Syndrome by starting back with exercise way too soon. I wish I had known this months ago! What a terrific panel, informed, articulate, and above all compassionate. I have bought the "Fighting Fatigue" book. Thank you very much for posting this! .
THANK YOU all - watching you guys not only do you validate my symptoms but alleviate my guilt 👏👏👏👏👏
Dee di you fully recover?
@@janybekorozaliev9052 oh God no - I'm still struggling on through. Since having covid at the very beginning April 2020 my health as never recovered and I doubt it ever will. I've subsequently been diagnosed with Coeliac Disease Pan-gastritis and recently osteoporosis of the spine. Prior to covid I was a runner/ spinning classes etc etc now I'm all on taking my dog for a walk - I'm far from being recovered- its not even on the horizon 💔
Excellent discussion! I wish I had known this when I first fell ill with ME/cfs. Pacing is so difficult. As a single mum, without any support, I just couldn't pace. Only now, that they've all left the nest, I'm able to. 22 years later.
low atp levels is what is keeping your me/cfs condition in place,if you get the coronavirus you will be a covid long hauler,your condition can be healed in a short space of time,i know what keeps all post viral conditions and all chronic fatigue conditions in place low atp levels ,if you dont know how to address the low atp levels you wont heal,i can type out a protocol if you want me too,your weak immune system cant expel dead virus debris from your system,thats what a post viral condition is ,this is easily addressed
Oh, you know me and my medical history, constellation of symptoms, things I tried and didn't try? Righto!
we got this
@@prosperinfoella1636 No, you don't. So condescending to suggest those things to a patient over decades. And it seems you don't have the first idea what pacing really is. Rewatch this video. Stop gaslighting and victim blaming. Because that's what you do, with you toxic positivity.
@@AJansenNL What on earth are you talking about..I smell negativity. I meant we got this as in we can recover. You need to stop jumping to conclusion you lost soul.
This video makes so much sense. I have not had COVID thankfully but I had a severe allergic reaction in March 2021 and since then I’ve experienced the same symptoms of long Covid such as racing heart and fatigue brain fog. Sometimes all I can do is lay on the couch in silence. Understanding the why is a huge help so thank you very much for this video. I have signed up for the Gupta Program and praying it helps!
Brilliant! This explains so much of my experience with long haul COVID-19. Today, I'm about 98% recovered, but it's been an assembly of trail and error information that works for me. Fortunately, I've been in a position to pace myself but dealt with guilt on why I took the downtime. Sharing these experiences with others has helped me stay focused on my recovery. Sympathetic vs Parasympathetic.
Thanks for the support bear!
@@RUNDMC1 watching your videos have also helped me tremendously with my recovery. Thank you for sharing so selflessly!
Nomebear are you fully recovered now? If so, for how may months have you been symptom free?
Oh my goodness - my 22 year old grandson has long covid. He did have covid=10...fast forward he goes to college then over to Barcelona for a semester and feels "sick" like he thought he might have had food poising - he did see doctors there and was getting worse and wanted to come home. OH sorry this was in January - all I know from the beginning was that he lost weight, had pain, weakness and couldn't walk, smh this is killing me, so right now he does get exhausted, he's isolating himself and now I'm understanding the cognitive aspect of things along with his fatigued. Not sure what I expect why I'm posting on this particular video, because it's a 2nd one. I will be sending this to my son. What I wrote is all I know..love my son though want more information, yet I understand his position also. Thank you all ~
The best video I have ever seen on this topic. Outstanding!
Thank you!
I am still in absolute denial that pacing is the only option for the rest of my life. I’m having to do it for now but it can’t be forever.
Whenever I try to exercise at the same level as before my March 2021 hospitalization for Covid-19 (pneumonia, pulmonary embolism, etc) I feel HORRIBLE for a few days, all my long Covid symptoms come back in full force, and then some, and I have to rest completely for several days before I begin to feel better. I have a bit of weight to lose and I just can't exercise anymore. Scary and very frustrating.
I am treating many patients with similar symptoms who have been 'dismissed' by their doctors as it being 'in their head' and this so so so resonates with me! I feel for you- just as I feel so about my patients. They are going through a hard time and the journey will need a lot of work- pun totally unintended! That work includes rest! Really grateful for the depth and the empathy in your sessions; as well as the science and the logic to support the content! Would love to learn more... Thanks a lot! for your effort and for your dedication!
Thanks Nidhi!
thanks so much....Gez & Assad, you both have a heart of a bodhisattva!!
Remember when we were in grade school, and we took naps! And after had milk and a snack! It was tought to take a nap, no noise, no book reading no nothing, just sleep. I have a hard time napping or resting, its not in my nature. And if I do lay down, I have something on my nightstand to play with or read! Its terrible! But with these symptoms of lingering covid, I am so weak at times I can't do anything, and I do feel guilty! I sure hope I get better soon! Thank you for all your help! You are all such wonderful people, caring people at what you do! Such kind hearts! Blessings to you all for making this video to help us all! Kindness will be returned i guarantee it!♥️♥️🙋♀️
U got mildly or severly infected?
This is the best video I’ve seen this whole pandemic on this topic. And thank you for breaking this into two videos.
Thank you Evin!
Gez, thank you so much fot sharing this. I can totally relate because every time I think I've fully recovered (since March 2020) I relapse after what is a less-than-normal activity level for me. Guaranteed, I've always been a super performer, yet this makes it even more frustrating for those of us who have functioned at a super-human level our whole lives and now have to deal with this crap.
100% with you there Barbara
Same here. So frustrating.
Barbara are you fully recovered now?
@ Barbara Warren
How are you feeling now? Did you recover?
Thank you for this video, it's been really helpful.
I need to stop feeling guilty when I need to rest and ignore the voices that tell me I'm being lazy.
You do indeed Jimbo!
Super interesting and thank you so much, yet again. I just wanted to share the fact that my long covid illness has been evolving over the last year in a much more linear way than what many long haulers seem to experience and what seems to be discussed here in the video: people having better days and worse days, days where they feel almost normal, and others with very clear PEM and therefore quite an up and down experience. For absolutely ages i was never really in a state where i would feel like ‘right, i almost feel like i want to go for a very short run, shall i try it and see what happens’ - I never got to that stage, i was just too drained to even contemplate going for a run, it didn’t make any sense to try. And when i did try a little bit more like a very gentle bike ride, maybe three of those over a week around christmas time, i think i did experience PEM, but it wasn’t like a massive relapse, just a slight increase in intensity of what i was feeling like anyways. Lately i feel like the physical limitations are less present but the mental ones remain and are the most debilitating, and there again they just are there everyday, in quite a constant way. I’m a year and 20 days into LC, but i relapsed with it suddenly, 3 months after ‘apparent recovery’ from very mild covid infection. If anyone wants to respond. No worries if not! I still think all this is very relevant so thank you..!
Jean are you fully recovered now? No mor symptoms?
Great video. Probably the most important one you've made, that will help the most people.
What need is proper employment law protecting us, and financial help the government until we recover. I am on the verge of loosing my job and no cares that I am getting better, just really slowly.
Hence been forced back to work after I have already had a crash.
Yes indeed ! I think I have failed job interviews because I told them I had LC.
ua-cam.com/video/M5j96FewIoY/v-deo.html
I’d watch a panel on long term disability insurance and employment law…
I’ve got ADHD so trying to manage my time around both long covid and ADHD afternoon energy crash is hard work. Especially as a parent to 4 and 6 year old. I tried to carry on with my evening yoga/gentle exercise but I found that too much so then I was racked with guilt that being over weight made my covid worse but I can’t exercise to try and help me be fitter. I feel like I’m finally getting a balance but gah it’s hard trying to balance life and everything else and rest!
Gosh Bex - I’m not surprised pacing is hard for you!
With you on the ADHD bit. It’s a double challenge for sure.
Bex did you fully recover?
ADHD is a risk factor for long covid and I’d guess struggling to pace ourselves might be the issue. Not sure if having kids is a risk factor, but I’d be surprised if it wasn’t :-0
@@jamiejones8508 since I wrote this I’ve had my ADHD medicated and things have vastly improved. I haven’t gone back to my old workout routine but fit regular exercise into my day to day life cycling most places and walking.
I find I have nearly zero long covid symptoms now too! What a difference a year makes.
Great video, thanks. 8 months into long covid and have been 'pacing' for about 6 of those months. It definitely helps but so hard to do it consistently well. The video has given me fresh insights.
Michael how are you now? Back to 100% normal health?
@@janybekorozaliev9052 hi, yes I'm fully recovered now. Long covid for about 12 months and then in January I tried something called the Lightning Process which has helped me enormously. Some people are very cynical about it but my experience confirms that for some chronic conditions it can be very effective.
Hope you are well
@@michaelatkinson4240 that's good that you've recovered! However I am a bit skeptical of the lightning process, do you feel that maybe it's just lying to yourself or does it really cure all the symptoms of long covid?
@@janybekorozaliev9052In my case I have recovered from all of the remaining symptoms and I believe it is a real effect and not just a psychological trick. The science behind the LP is actually well established (neuro-plasticity and the placebo effect). I can understand the skepticism. If I hadn't tried it myself I would also be doubtful. It's not a miracle cure; it requires consistent application of the process over time - in my case about 4 months.
@@michaelatkinson4240 thanks for explaining! I'll definitely check it out myself as there are a lot of videos on it
Yes “guilt” can be painful literally from our thoughts, but I recognize a swift rise in pain when stressed…
Thank you so much for this. I am now 80% recovered after 16 months of long covid. I’ve been getting help with pacing (and mindset) for the past 5 months from an NLP coach who specialises in ME/CFS.
Where do u find one of these coaches?
Boxerdog mum did you fully recover and if so for how may months have you been symptom free?
@@janybekorozaliev9052 Hi, yes. I am fully recovered and leading a normal life. I’m back at work, walking my dog and practising difficult yoga. I’m not sure exactly when I recovered. It was a gradual process. It was hard work. I needed a very slow phased return to work over 3 months. I just kept slowly nudging myself forward. I initially didn’t have 2 “activity” days in a row. I had rest days in-between. The most important thing was that I was kind to myself. I talked to myself like you’d speak to a small child who needed soothing and gentle encouragement. I’ve been at work fully since January 2022 (I got covid in March 2020), but for the first 9 months or so we had no idea what long covid was, so all those first months were wasted. So you might recover even quicker than me. And during that time, when I was partially recovered, life wasn’t as bad as when I was really ill. So, yeah, you can do this. Good luck 👍🏻❤️
@@boxerdogmum583 What were your symptoms? And what did you do tô recover? I've been suffering for the last 5 months
@@jhonybraavo You name a symptom and I had it. I prioritised lowering my inflammation levels and getting out of “fight or flight” and into “rest and digest”. I ate a high fibre diet and took probiotics (kefir, sauerkraut, kimchi, kombucha). I took naps during the day whenever I needed them. I lay down and listened to a yoga nidra once or twice per day. I started walking slowly, for 5 minutes every second day, then after a week increased to 10 minutes, and so on. I sat in my garden every morning to get the morning light, and I did 5 minutes of positive self talk while I drank my tea. I nudged myself forward gently, but I didn’t push myself. If I made a mistake, I didn’t beat myself up about it (negative self talk keeps you in fight or flight). I deleted all my social media because there was too much negativity and too many scary articles in the long covid groups. I stopped watching the news. Be kind to yourself. Get rid of all the sources of stress that you can control. Find the best balance between activity and rest. You’ve got this ❤️
Today is the first day that I've had enough energy to listen to (not watch) one of your videos, and I'm so glad that I did. Nothing very new to me here after two years with severe long covid, but so much validation and it is the most that I have heard people taking who all really get it. Especially Sue, everything that she said really resonated with my experience. Thanks for making this, and for stopping it before an hour, will definitely check out part 2 and other vids another day.
So sorry to hear you’ve been struggling so much. Best of luck with your recovery.
I also find with fibromyalgia is the humidity in the air. It took me many years to spot that trigger. Sometimes it can be very humid even if it’s not particularly hot.
I found it helpful to think of resting as ‘recharging’. Somehow that feels more like I’m doing something useful by not doing anything! And thinking of my energy levels as a battery that I need to keep topped up regularly. If I let it go into the low-power zone I can’t function and then need to rest for longer.
Agreed!
Right. that is exactly how it works. You deplete the ATP and then need time to recharge your battery. Long time ME/CFS patient.
Spot on! All in and then recover. So true about overdoing it. Understanding the rest portion has disabled guilt due to not being able to accomplish.
Know this video is old. Thanks for the validation of needing to rest after showering, eating and bit of morning routine 👊
This was so extremely helpful. I am starting again with bed rest and only getting up to eat, monitoring everything to find patterns. Thank you so much.
“We have a big book on how to treat long haulers but they are too tired to read it”. Fittingly, as a long hauler, I don’t have the concentration enough to listen to this 48 minute video. 😉 Will try to listen in bits.
It took me 4 months to learn this the hard way. It’s good to have it validated. Thank you
Thanks for the validation of this battle and personal learning curve 👍🏻
Another awesome video Gez. Thank you for all you do in spreading awareness!
Thank you, Gez - and the whole panel (what a fantastic assortment of people to collaborate and contribute to this discussion). I really resonate with so many ideas communicated here: learning to rest, de-stigmatizing rest, changing expectations and perhaps training ourselves out of 'A-type' personalities and patterns, and really attuning to holistic energy management in order to support wellbeing and illness management and/or recovery.
I also reflected on how tricky this is, like - anything preventative can slip under the radar and be rendered invisible - thus, if one really masters the art of pacing and then is less symptomatic and more 'well,' others may not see or recognize the ongoing need for pacing.
I also learned and felt reminded of how activities like social media or stimulating entertainment can stress our system and to consider the nuances of exertion and rest.
Ongoing gratitude for your work and this service of education: you seem to continue to choose to protect and direct a significant portion of your energy and attention to be such a source of help for so many. I don't take that for granted, and I am deeply appreciative.
Thanks Nicola! Great comment and I hope you’re doing better these days :)
Thanks Nicola! Great comment and I hope you’re doing better these days :)
@@RUNDMC1 Thank you - I got sick at the same time as you, and I keep learning and experimenting. I find that I will have little relative upticks of improvement and then seem to plateau at a new level (with some ups and downs) - and then I keep letting time help, as well as tinkering with new supports. Hopefully, that slow trajectory will keep trending in that direction of stabilization and healing.
This is truly an experience that feels like the invitation is to let it change my life rather than fantasize or get frustrated that perhaps I can't currently (and perhaps won't ever) simply resume my old habits and baseline.
On tough days, I can still experience a little wave of hopelessness or grief - but on positive days, I feel hopeful for deeper recovery yet and even grateful for some of the transformative changes in my life.
I wish you ongoing improvement, too! I really can't thank you enough: you and your guests have been HUGELY instrumental in my ability to respond with agency and knowledge.
If you're comfortable, could you please send me your email? I might like to send a more personalized note of appreciation. (But no pressure!)
Take care, and thanks for your good wishes.
Thanks!
Thank you so much Geeta!
Thanks Gez for another helpful video and thanks to the panelist for taking the time to answer questions and share their knowledge!
Thanks Andy!
Perfect timing. At least for myself. I'm mostly cured at least I think I am. I'm currently in Spain taking care of a family member (not COVID related).
Before COVID I was cycling quite often. Had about 57 resting HR so I was in relatively good shape. Got COVID back in 12/20. Long hauled. Took me about 4 months to get better.
Now that I'm in Spain I'm trying to continue my cycling but this has proven to be challenging. I cannot perform like I did before COVID. I cannot get up any hills and nothing in Spain is flat. I don't know if it is that I'm out of shape again or of I am experiencing COVID damage.
Example, I tried going up a steep hill and my HR easily got to 187. I would have to stop, let my HR go down and get back at it again till I finished.
It's so frustrating because I want to go and I feel like I'm holding back the other people in my group. I feel like I'm fat and lazy. At least I feel that is how people see me. I want to go but my body simply does not want to go.
Take it very easy Mary with the cycling - you aren’t recovered *enough* yet for that level of exercise!
@@RUNDMC1 thanks I will now. I thought I was fully recovered till I came here. It is so frustrating seeing everyone else perform at their best while my heart feels like it's about to explode.
Be careful. I was progressively getting better last fall after 8 months of gradual improvement. I tried to do long hikes and I would hit a wall and my heart would race. It caused me to "crash" and I felt like I was having to start over!
@@Unitedstatesian I think it is important to look at this almost in the context of Epstein-Barr virus. Obviously the mechanisms with which the virus and the inflammatory stage activates the TH1 pathway is different, and the physiologic manifestations that occur with exercise or increased heart rate are different, that the end outcome is similar, one step forward, three steps back. The more you do today, the less you will do on Thursday and Friday. I would recommend looking into protocols for mast cell activation syndrome, Dr Bruce Patterson and Dr Tina Peers have videos discussing this aspect of the inflammatory process. Increasing Your heart rate is like pouring fuel on the smoldering embers. They burst into flames again and your body becomes overwhelmed. There is a very good analogy somewhere in this thread about someone having a broken foot or leg. Even though they may look healthy, there is no possible way they could be expected to run a race with a bone that has not yet healed. It would be a minimum of 6 to 8 weeks before any type of activity would even be considered. The devil with postcovered symptoms, is that you look totally healthy, normal, and your brain tells you that you can do these things, until you do, and then there is a rude awakening :-(
Mary are you fully recovered now? If so, for how many months?
Thank you for this video. Heading to month 7 of long covid and recovering from my 2nd major crash. I keep hearing pace & rest but had no idea how to accomplish this. Now I do. Thank you!
It’s not as straight forward as it might seem!
Great to hear from the American guy that people with chronic illnesses who have to pace are seen as lazy or crazy. Just goes to show how badly treated people with ME and CF have been. Perhaps a public apology from Physios would be a good idea.
I have been sick with ME for over 35 years. I’ve tried everything and I am presently trying to use my Fitbit to stay within my AT, which by the way I reach by simply turning over. I am really interested in and aiming to improve my pacing skills.
you have low atp levels thats whats kept you stuck in m/e if you get covid you will be a covid long hauler,your weak immune system cant expel dead virus debris from your system,thats what a post viral or chronic fatigue condition is ,i can tell you how to heal do you live in the uk that will be very handy,if i told you your condition can be ended in about 8 hours the cost 7.49 uk pounds ,you think i am messing,nope i wouldnot do that with anyone who is ill
Thank you Gez and the entire panel
Im really THANKFUL that I found you! You have helped me so much more than the Doctors I have seen here in Germany... absolutely not empathy definally they don't take me serious.
☹ The doctors in the beginning were cruelly gaslighting me. Evil.
But I found one who is willing to to do the tests I have asked for. I hope you find some human beings and not robot doctors.
Super helpful Gez, thank you!! They referred to watches that beep when meeting HR threshold. Can anyone recommend specific watches?
I’m Covid positive end of April 2021. I recovered in 2 weeks but then exercised and crashed. So I’ve decided to rest full time for 2 months. Nothing more than walking around the house. Hope that helps speeds the recovery up!
Very, very good shout Stuart
Depending on how severe it is, don’t feel bad if you have to break up walk around the house, too.
I was the same late April, and only had a slight fever for 3 days. But I had a racing heart was my first symptom. Then once I felt better and it was about 3 or 3 weeks, I started to do my regular activities and boy did I crash. I had some side affects from the meds the doctors were giving me for the fast heart rate and I figured that was why I was so weak in legs and arms and felt luke I was gonna black out all the time. But then saw all the info on fatigue and long covid! I dont think we could say that we are long covid yet. I heard them say 8 months or so is long covid. So maybe we have a chance!!! I am starting a high vitamin C regime once I get my gut healthy then I am gonna apply a protocol of super foods to help my immune system! Good luck!
Did you manage to rest for 2 months?
@@andylay6745 yeah, pretty much. I did some light walking too
Great video it certainly gives you a different insight. Ive had ME/CFS for 14 years and like many others rubbish at pacing. Sue I loved your book wish i had it 14 years ago!!
I don't use language like 'I'm sorry I'm tired'. I am much more specific - and using an HR/HRV monitor, I really don't have emotional energy to expend on guilt - I'm at my PEM threshold and I have to rest for safety reasons. End of discussion. There is no reason why I should feel guilty I'm following basic safety protocol for people with ME/CFS. End of discussion.
Couldn’t agree more
Great talk from you guys thank you
Fantastic conversation. Extremely helpful both as validation of what I’ve been experiencing and as a guide moving forward. Thank you very much.
Gez, honestly, as a seasoned athlete, you are one of the few people in the entire world who actually understands, and you are gradually connecting with the other super-performers in the world who truly understand - unfortunately, the professionals who are themselves long-haulers and can no longer live their lives and careers just "theorizing" based on old paradigms. They are now the heroes bridging the huge divide between those who know and those who just think they know.
This is certainly a brave new world and intersection of different forms of medicine!
Incredibly helpful
Thanks 😊. March 2020. Here. 9 weeks ago brain started functioning.. what a devastating virus
Another great video and the part of the recovery process I'm rubbish at (pacing) some helpful food for thought here to help me on my own journey to wellness. Looking forward to part 2. Cheers 😊
Thanks Sam!
This is very helpful! But its hard to stop everything. I live alone, and I have a garden, dogs and a house, bills, grocery shopping to all manage. Its been very difficult. In the beginning of my covid I was back and forth to the cardiologist, doctors because of my symptoms. And then all the meds the cardiologist had me on to slow my heart rate down just made me worse, I could barely walk out to my garden to put the water on. Getting dressed and showers were very hard because I had no energy and was very dizzy. Now I am off all the meds and I am just doing supplements. But I still have fatigue and racing heart. I figured out what I was doing, I was doing too much all in one day when I felt better, and then I was literally down for 2 or 3 days. It scared me because I thought something else was wrong with me. But I now have realized that I need to do only certain jobs each day! Pace my self. The only hard thing now is driving and shopping. I thought I was ok one day to drive and get blood work done at a lab inside the grocery store. Well after the lab I walked a bit around the store and I got light headed, my legs got weak, my heart was racing and then panic set in. I then just got a few items left the store and sat in my car till I felt better and drove home. I have never felt this horrible in my entire life, and the fear and anxiety that this brings with it makes it even harder. I am praying with pacing and taking my supplements will eventually get me over this. Its only been 2 and a half months for me. Im coming up on 3 months and I do feel better, but I am not functioning to my 100% level. I did not have any pneumonia only a head cold and fever for 3 days. My symptoms were racing heart and ill feeling, and it took almost 3 weeks before I tested positive. I find that strange. But my heart rate still races at times even when I'm asleep I get woke up in the middle of the night with a racing heart.
I live not far from Stockton, I really would like to get into contact with the gentleman from UOP. Does he have a clinic for long covid patients?
I think there is a clinic attached - but best to be in contact directly and ask.
@@RUNDMC1 thank you kind sir! You are so nice making these videos! Thank you!♥️🙋♀️
@@RUNDMC1 i didn't see an attachment, but I will try and get ahold of Todd directly in stockton. I will look him up! Yes, I am watching all the way out her in California! I have always loved England! When I visited Europe I had a wonderful time and I have to say the British and Italians were the nicest people! So bravo to you mate!!! Have a wonderful day!
D thank you - enjoy that Californian sunshine!
D - howdy neighbor! (I live near Yosemite.) How are you doing these days? I had cv last sept, followed by long cv, both so mild I had no thought of it being cv! Gez' vid on "Heres how to treat lc" set me on my path to recovery.
So eager to hear the second part,no doubt will fall asleep half way through as this.thought laying down with resp support would let me listen through. Was having lots of these problems before 'alleged' Covid and presumptive MG. Pacing has been frustrating, MD,PT needs to listen to this video.
Thank you all so much! This describes all I feel but unable to explain!
Thanks Justine!
😊Thank you so much for these infomative videos. It's like a breath of fresh air to discover you and to see that you speak my language. I've been trying to recover from Covid-19 since Oct. 2020 and I'm 81 years young/old. ❤
Thank you so much for this informative video ..so much need it from us who have been told to pace ourselves but with no real understanding what that involves and in relation to crashes, from our part and shockingly theirs .
The better I feel, and the stronger, there's a tendency to forget to manage and pace with the result of physically running oneself down. Managing to lose 45 kilos in two years, I'm now a thin, normal sized male. There's more energy, I recover quicker, but it's frustrating dealing with aftereffects.
Can you recommend a HR monitor that you can set alert for when your HR goes above a setpoint? Thanks
I am also very interested in an answer to this question!
Hey Gez one again thank you for the video. It really puts some of the things in perspective. Your videos have helped me trememndously in my own journey; Im about 9 months in. May I ask have you started running at all? Thanks
Not running yet - still being very careful about that!
Gez started posting these video’s about 14 months ago, when so many of us had no idea what was going on with our bodies and why we didn’t seem to be recovering from Covid. The video’s were a lifeline for us, just knowing that we weren’t the only ones suffering, and knowing other people were experiencing similar problems. He used his limited energy to help all of us, by trying to give us information. I feel that if it helps him to have ads in the video, I’m all for it, because I know there are thousands of people that have benefited from Gez videos. I’ll never be able to thank you enough Gez.
This was super helpful thank you!
Thanks Lauren!
Thank you for all your videos. Have helped me so much
Good stuff as always! Many thanks, your work is so much more helpful than any doctor I have met.👍
Thank you Christian!
Seems to be a quite strong variation between resting plus 15 as opposed to 220- age x .55 , with the former quite lower than the latter.
Thanks Gez! I find it so hard to rest! Some good suggestions from the panel! Personally, I have found that listening to Yoga Nidra meditation videos to be the most restful. It seems to both rest and help with the neurological issues. It also is active mentally without taking energy.
Yes - great advice!
So great to know what I am going through as a long Covid victim is totally "normal" ( I had a narrow escape from ICU but was nearly 50 days hospitalized) . I am fighting this since early April 2021, so 6 months into it. Hearing you experts confirm my own observations was simply great! Thank you for sharing your knowledge on this subject. A few notes struck familiar chords: 1) recognizing and accepting physical and cognitive limitations and setting up barriers for myself based on these, for myself, and between myself and others 2) knowing my organs intimately (in my case my digestive system). Eating has to be thoughtful, and free of stressful conversations so as not to consume so much energy. 3) finding physical activities that generate oxygen ( yoga and walking in open areas. Both activities require deep breathing but don't stress me out). And 4) doing the things I really like and am good at, which give me security and confidence. This video was so good!
Thanks!
Thanks Judy!
Wow! Excellent for me. I will need to replay a few times. I like detail. Do you have a “manual”, book or pamphlet that summarizes? I think Ruth said it great amidst professionals … but it’s a ton of info …
It’s all in The Long Covid Handbook!
Excellent video. I’m just sorry I didn’t see this 2 years ago, maybe my PEM wouldn’t be so debilitating. I tried pacing my activists in chunks, then sit down..:loung a bit on the chair, then resume whatever I was doing. It helped a little. More videos like this, pls. All of ur videos r so helpful. Thank you!
My pleasure :)
This has been such a help. I am going to send a link to the long Covid clinic people I deal with on line. They are urging me to exercise even though i have found it makes me crash. My comments about pacing fall on deaf ears.
I would like to see a video on the differences between post viral and bacterial illness.i do believe there to be huge differences. I got sick in a motel room way back in 81. Got an ulcer 2 weeks after the illness,then slowly progressed into a slow downward spiral.then in 1993 all he'll broke loose.i went through severe cytokine storm...it damn near killed me!
That’s scary that so many years later it hit you out of nowhere with a cytokine storm. ☹
It would be nice if you just get sick and then be done with it already.
I need to know there is a solution. I don’t have a life where “pacing”, laying down, doing nothing is an option. This video has CRUSHED me to the core. I cannot live this way. I need to know that in the two years since this video solutions are in place to get this virus out of my body.
Thanks very much for this excellent video. Much appreciated.
Thanks Alex!
Gez. How do we balance this against The video with Tommy Wood? This video goes the route of pacing and minimal physical / mental exertion. But Tommy Wood stated “try something new - project or skill set - to stimulate brain activity and retraining.”
You can do something new that doesn’t take much energy! It all has to be within your energy envelope of course and if you’re bed bound and 2 minutes attention on duolingo is too much then this advice is probably hard to enact. But for most of us, we can practice something new that isn’t too taxing and keeps us inside our envelope :)
It’s about looking at your whole life and balancing your energy between what you need, have to and want to do.
Youre looking really well. Hope youre feeling it too.
Thanks R - I’m definitely doing better!
My Question is how can you pace when you have a husband, school aged children and responsibilities that need to be taken care of that noone else can or will do? This has been my main challenge with the whole pacing concept that is needed to recover from long covid/CFS.
For example, I crash and relapse with horrid physical symptoms every month like clockwork because my 18 month old son doesnt care that mommy needs to rest. He is walking and going thru a wonderfully adorable stage but its exhausting. I crash because I have to chase him around the house and bathe feed and teach and all the things he needs in order to grow and develop. Then I have a 7 year old and 13 year old sons who need to be taken to and from school, need help with homework, time with mommy, lunches made for school, dinner cooked etc. I do not have any relatives who live near me so I have a huge burden as a mom and wife. My husband is a long hauler too and has to work and take care of us. I also work from home and when the fatigue hits I cannot fight it. But life goes on and I'm always needed in my household.
So yes pacing for me has been a catch 22. Long covid has been one of the most challenging conditions I've ever experienced! But it's my journey and I refuse to give up hope that one day I'll recover from this dreadful condition. I so appreciate these videos though they help me try and understand this new body and brain I am living in. That in and of itself is quite healing and provides so much hope! So thank you from the bottom of my long hauler heart and big hugs to any of my fellow long haulers out there. (Long hauler/Covid survivor since March 30, 2020)
There is no simple answer to this Rachel - it might be worth checking out the Long Covid Kids groups as I know they’ve got a bunch of mums on there who are experiencing this too. Wishing you the best in your recovery!
@@RUNDMC1 thank you, heres to more good days than bad and good health to you as well. I appreciate the work you're doing to help our Long Covid community, its truly making a difference. Cheers!
@ Rachel Johnson
How are you feeling today? Hope you are better. I am 12 weeks post Covid , and dealing with debilitating fatigue. I also have children (11 and 14) and I always tell people the responsibility at the house is impossible to get any kind of rest.
@@SongofaBeach2012 are you better now?
Hello, I am a mom with ME/CFS with 4 small children (ages 9-3) and I actually got ME following the birth of my 3rd child. (Yes, I had a fourth during horrible symptoms). I went from completely bedbound, or mostly housebound, to now working 3 days a week, and some days I can't even make it to work, most of my sick days are exhausted. I also have a husband, and he is at work, so I do most of the exact same chores you do. I learned to take a break whenever I need it, I will go lock myself in a dark room as often as possible when I let my Littles do a quiet activity. I scaled my life and expectations WAY down. I don't attend much events, they cause me overstimulatory overwhelm. I actually found that working part time in a chair helped me get 50% better. I have a lot less noise and stimulus, compared to being at home, and a change of situation is helpful to keeping my mind off of symptoms (even though at work I often feel I'll collapse). I have learned a lot of coping techniques from Dan Bulgio here on youtube hugely helpful. This summer I was able to even often. Go camping without crashing. But in the winter I had a bit of a relapse. I would not same I'm now well, but at least 50-60 better. So there is hope, even with small children. Boundaries and delegation and relaxation.
I’ve been told by my long covid cardiologist that she wants me to exercise more. I work full time and the job I have I walk most days up to 4-5 miles a day. This cardiologist told me that this walking at work does not count. Quitting time all I have the energy to do is too walk to my car and upon arriving at home I barely make it inside my home before collapsing
This is a terrible idea Sherry!!
These are really interesting. I have long covid type symptoms following my moderna covid booster
You’re not the only one Sarah! The Moderna booster has sent me backwards horribly
@@RUNDMC1 iam 7 weeks in now following moderna booster with racing heart, awful fatigue and muscle pain. Ecg, echo and 7 day holter normal thank goodness but doesn't help feeling so ill. When I had the holter fitted they said they had loads of referrals following moderna booster. Have started some of the vitamins you have recommended on your video. Another friend's mum is now on beta blockers and a friend has ongoing horrendous shingles on her face- reactivated by moderna booster. They are also querying post vaccine pots with me as well. Hope you improve soon!
I just had a relapse of symptoms after my Monerna Booster. The Work Insurance Board here in Canada cut me off because the Booster was not work related. So now I will have to back to work full time with no pacing. I work on Fire Alarms which involves thousands of steps each and everyday along with climbing dozens of flights of stairs. Than there screen on time all day as well. We also have to drive to the buildings and home again. The average day are 9 to 10 hours long with a week of on call time each month. So there could be 20 hour days with another 9 or 10 hours the next day. This is going to send me to hospital...
@@davidgough4750 so sorry to hear that. It's so unfair you do the right thing and get vaccinated and have your life taken away from you. Every medical person says 'well these things are new so we don't know what they are doing'. I just wish I never had my booster. Hope you start to feel better soon
@@RUNDMC1 I am very sorry to hear that. Are you feeling better now? I had a bad first dose before contracting covid. I am scared that if I get another dose it might worsen my long covid symptoms as well. Everybody says the vaccine helps with long haul symptoms but I keep coming across reports which state the contrary.