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Corey ME CFS Navigator
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Добавлен 3 окт 2014
This channel is to use my own ME/CFS journey and research to help others with their journeys. Also to educate friends, family and doctors of ME/CFS patients.
I try to make the content as ME/CFS friendly as I can. To do this I intentionally avoid music, background noise and much movement. I try to stay mostly still with a neutral blank background. No text over images, no scribbles, nothing. I also do my best to keep video short where I can (around 5 minutes where possible) and mark chapters to make it easy to stop and start again.
I try to make the content as ME/CFS friendly as I can. To do this I intentionally avoid music, background noise and much movement. I try to stay mostly still with a neutral blank background. No text over images, no scribbles, nothing. I also do my best to keep video short where I can (around 5 minutes where possible) and mark chapters to make it easy to stop and start again.
Cumulative Crashes (PENE/PEM) with ME/CFS
This is about the way many tiny things we may not be paying attention to can add up to cause a crash (PENE/Post Exertional Neuroimmune Exhaustion/PEM/Post Exertional Malaise)
When you realize that the physical, sensory, emotional, and mental things together might have been too much you may be able to save yourself a crash through Aggressive Resting (see video here: ruclips.net/video/WUFZn6D6QGg/видео.html)
My main resource website: cfs-me-navigator.com
Let me also add a list of things that can make PEM happen (alone or together depending on the intensity of the thing and the severity of the person with ME/CFS:
Physical Exertion including exercise, but really anything including just using your...
When you realize that the physical, sensory, emotional, and mental things together might have been too much you may be able to save yourself a crash through Aggressive Resting (see video here: ruclips.net/video/WUFZn6D6QGg/видео.html)
My main resource website: cfs-me-navigator.com
Let me also add a list of things that can make PEM happen (alone or together depending on the intensity of the thing and the severity of the person with ME/CFS:
Physical Exertion including exercise, but really anything including just using your...
Просмотров: 446
Видео
Getting a ME/CFS Diagnosis
Просмотров 5476 месяцев назад
For information about symptoms: cfs-me-navigator.com/symptoms The International Consensus Criteria: img1.wsimg.com/blobby/go/1fd7e668-7095-4ec5-8e16-6f37d31759e6/downloads/Myalgic_Encephalomyelitis_International_Consen.pdf?ver=1707259902373 For information for and about Doctors: cfs-me-navigator.com/doctors My video series on talking to doctors: ruclips.net/p/PL37Wwe9yltlJErLH6UczTEL-S8ppDMtj7 ...
Personal Update January 2024- Doing really well, bouncing back fast!
Просмотров 4827 месяцев назад
This is just a personal check in on how I am doing with my gradual improvement. I am doing so well! I'm sorry about the noise in the middle- construction on road outside. Also please watch at your own pace and pause where you need. This one is on the long side (8.5 min).
Mental Health with ME/CFS #1: Your Past Self
Просмотров 2379 месяцев назад
Acceptance of where you are, letting go of comparing your past self to now. *Keeping in mind that when I was on the edge of very severe, I did not know I would improve as much as I have. For all I knew I was there forever. Holding Hope Lightly. Memories of your past self: a treasure you have that can't be taken away. Use your imagination to stay sane and keep depression at bay. Resource website...
Aggressive Resting to prevent crashes with ME/CFS
Просмотров 1,1 тыс.11 месяцев назад
Aggressive resting is a method of avoiding crashes/PEM. Crashes are one of the known ways we get worse. The more and harder you crash the worse you get. There is no research on it yet, but personally I have improved by avoiding crashes. This is one of my big tools for avoiding them.
Check In (continuing to improve with ME/CFS!)
Просмотров 193Год назад
I just wanted to check in and let you know how much I'm improving lately. Things mentioned: cfs-me-navigator.com Pacing Guide: www.cfsselfhelp.org/pacing-tutorial?fbclid=IwAR291HzxF522tqIiKG-b11dl9bHCrAtXBqWHO1SffBp7y3UVSXvuINaO1rQ Pepcid (over the counter stomach soother and h2 blocker and anti-inflammatory). I am taking 20mg a day as advised by Dr. Bonilla at the Stanford ME/CFS clinic. I rec...
How I Still Do Art with ME/CFS (pacing +)
Просмотров 466Год назад
-Most importantly I pace. -I set timers to not get lost in the process and overdo it -I use machines -I get help -I set up my space intelligently I would also add planning and giving plenty of time to finish a project. If I used to be able to do it in 2 furious days of intense work, I now give myself a _month_. Also if your max sitting up time is shorter (say 30 mins.) sit up for less long (lik...
My ME/CFS Journey Version 2 (this time more coherant)
Просмотров 819Год назад
My ME/CFS resource site: www.cfs-me-navigator.com My Wheelchair site: www.mywanderingwheels.com The Hummingbird Scale: www.hfme.org/themeabilityscale.htm?fbclid=IwAR1Q5OYpywuVPKdZHseEI2O3I-iDwF12KufImxOIqR7p_4LeDgM5Oq3tk3I *correction- I was at the _edge_ of very severe. I don't think I said enough about how much more freedom and life I got back after getting the wheelchair van. I also didn't s...
What does the range from VERY severe ME/CFS to mild ME/CFS look like? *TW, mention of suicide
Просмотров 1,4 тыс.Год назад
In my video "What does ME/CFS Feel Like? I left out the _very_ severe, so I wanted to explain that as best I can secondhand based on what I have heard from many others. That video: ruclips.net/video/vwQRF0UBkkw/видео.html If you want a first hand window into the very severe experience, I suggest looking at Whitney Defoe's blog here: www.whitneydafoe.com/mecfs/ To get an idea of the range or whe...
How do I travel with severe ME/CFS?
Просмотров 695Год назад
I have traveled regularly with severe ME/CFS. It is possible. It may be that you are more severe than me (or even than I _was_) and you can't, and if so I am so sorry, but here is how I do it. I am now on the edge of moderate, but I have traveled while more severe. My guide to traveling with ME/CFS: mywanderingwheels.com/2021/03/02/traveling-with-me-cfs/ My guide to wheelchair travel: mywanderi...
What I Keep By My Bed (if you have ME/CFS)
Просмотров 2,6 тыс.Год назад
These are the things I keep by my bed. When I am crashed or need to fully rest to avoid crashing, these are all essential. *I forgot to mention blackout curtains for the room to keep it dark when I can't handle daylight -bolsters for propping up back -wedge for elevating feet -ear protection (AirPods, earplugs) I have a pretty quiet room, so I don't need the other kids of noise canceling headph...
When You're Improving or Having a Good Day with ME/CFS (be careful!)
Просмотров 436Год назад
This is about me messing up and how it happened. As hard as we try this illness is unpredictable and improvement is so seductive you feel like you can do more than you really should. It's so hard to gauge this ever-moving target of our energy envelope. 0:00 My Recent Crash 1:28 When You're Having a Good Day 2:18 When You've Taking a New Med That Helps
Setting up your house for ME/CFS (version 2)
Просмотров 225Год назад
I forgot to mention shower chairs for the shower, though I was too weak at first to sit up for that. I took baths. They had to be not too hot though to not raise my heart rate. A little over body temp is ideal if you are severe *My What I have By My Bed video: ruclips.net/video/5jjGPRM_jw0/видео.html THINGS MENTIONED: -Homekit/alexa for automation -Level Locks level.co/products/bolt -automated ...
Little Things Add Up (avoiding crashes)
Просмотров 200Год назад
After almost two years of avoiding crashes, I crashed for a month from overdoing it during Thanksgiving. What would I do differently? 1. Search your house for the things that take extra energy. Find ways to save energy in your house. For me it was the wheels on a chair. 2. Take really long breaks (like a week) after major activity or hopefully longer between major activities. This will look dif...
Talking to Doctors about ME/CFS #3 (formerly #4) APPROACH
Просмотров 310Год назад
This is more about the psychology of how to approach doctors than the actual information you give them. I had a video #3, but I think I say everything needed in #2 and #4 so for the sake of avoiding confusion and repetition I got rid of it. When I reference what I say in video #3, just look at video #2 because it's really all there. The information/links with validation for everything is in the...
Talking to Doctors about ME # (when they get condescending)
Просмотров 448Год назад
Talking to Doctors about ME # (when they get condescending)
ME/CFS Protecting your brain #3: Sensory Exposure
Просмотров 306Год назад
ME/CFS Protecting your brain #3: Sensory Exposure
ME/CFS Protecting Your Brain: #2 Stress
Просмотров 236Год назад
ME/CFS Protecting Your Brain: #2 Stress
ME/CFS and Protecting Your Brain: #1 media
Просмотров 242Год назад
ME/CFS and Protecting Your Brain: #1 media
How to support someone with ME/CFS (A note to family/friends/doctors)
Просмотров 818Год назад
How to support someone with ME/CFS (A note to family/friends/doctors)
Getting People on Your Side #1: Explaining What ME/CFS Costs
Просмотров 137Год назад
Getting People on Your Side #1: Explaining What ME/CFS Costs
Pacing With ME/CFS #2: Breaking things up
Просмотров 222Год назад
Pacing With ME/CFS #2: Breaking things up
Pacing With ME/CFS #3: Avoiding Rolling Crashes (really avoiding cumulative crashes)
Просмотров 468Год назад
Pacing With ME/CFS #3: Avoiding Rolling Crashes (really avoiding cumulative crashes)
Hello, 35 years old male here. Thank you very much for your video! I've been doing medical tests for those last 3 to 4 years, and we have the suspicion that I developed either CFS or Fibro. Another alternative, less likely but not discarded yet is MS. Anyways, my cluster of symptoms overlap almost 100% with the ones you explain here. My muscles get drained of energy very rapidly. I have problems chewing, swallowing and even talking because my mouth and throat muscles get tired with extreme ease. This problem is usually more severe when I am already fatigued after a long day. Some days I can work with relative normality, other days I feel as if my neck won't hold up the weight of my head. I have cervical, neck, back, shoulders and joint aches, vascular and tension headaches, chest tension and shortness of breath. Some days I experience extreme fatigue from the get go, other days I get totally tired after one specific activity (usually a simple task without much difficulty). I also suffer from severe brain fog (it varies from day to day though), problems recalling memories, thinking straight, using mental abstraction, etc. I also have problems reading and concentrating: this is very subjective feeling and difficult to explain, but I feel as if I had blurry vision without actually having it when I try to focus on my reading of a book page, and it makes me very anxious and frustrated. To sum it up, it's a wide and diverse array of symptoms, and thankfully they don't strike all at once, but they make life very frustranting as you have to refrain from doing a lot of social activities you used to enjoy.
These are all symptoms consistent with ME/CFS. Have you seen my "Getting a Diagnosis" video? Also many of us have both Fibro and ME/CFS- Fibro is a common co-morbidity for ME/CFS.
I also like the term rolling crash :)
Thank you Corey for all of your efforts! Keep up being a pioneer for those that can't.
thank you!
TE ESCRIBE UNA MEDICO ESP CON 44 AÑOS DE EXPERIENCIA SUFRI DE ARTRITIS REUMATOIDEA A LOS 25 AÑOS.CON UVEITIS EPISCLERITIS.ETCALA CALIDAD DE VIDA MALOS MEDICOSALOS TTOS CASIE MATA PLAQUINOL.ESTEROIDES ALTAS DOSIS.ARAVA FUE EL PEOR TUVE UN ATAQUE AUTOINMUNE TIROIDITIS EN VARIAS OPORTUNIDADES CON HIPERTIROIDISMO.EXOLTALMO.HASTA Q ME TRATARON EL INTESTINO PERMEABLE.ELIMINACION DE LAS CANDIDASBACTERIAS TOXICAS.SEMBRANDO CON PROBIOTICOS Y NUTRICION ANTIINFLAMATORIA Y MEJORIA DE TODOS LOS DOLORES SIN FARMACOS.
Thank you. Could you link the FB group? Can't find it.
below the threshold
@@samanthas3909 facebook.com/groups/1511910682235160
Thank you for sharing your story.
Hi, I’m a former research biologist. I now have severe ME. Heading into autonomic failure bc I’ve been either undiagnosed or misdiagnosed for over 20 years, ultimately left untreated as a result. I have spent the last 10 years looking for answers. ME is very much like post-viral syndrome. Think of the people who had Covid, known as the “Long Haulers.” It is essentially a type of post viral syndrome. In fact from what I’ve read, there’s not really a distinction between the two. At its core, both are a metabolic problem. Your body isn’t making enough energy for all your organs systems to work. This is bc within your cells, you have these minuscule little biological energy machines called mitochondria. Mitochondria make energy molecules called ATP. They do this through something called oxidative phosphorylation. Suffice it to say, it’s an aerobic oxygen) process. Now, have you ever heard of a thing they talk about runners going through, in which they run out of energy and their bodies starts producing lactic acid? They’re muscles aren’t getting enough oxygen so they start cramping from the lactic acid building up, burning, & ultimately, the muscles give out. It happens bc the runner’s muscles switch to all it has left, an anaerobic process, which it can’t keep up for long, bc it simply doesn’t produce anywhere near the energy needed to keep the human body functioning. The only thing it can do is try to conserve energy for the most vital functions. This is why we get all these seemingly unrelated symptoms.This also causes micro inflammation in parts of the central nervous system, and/or the peripheral nervous system as well. GI issues often are the result of neuromuscular motility disorders. I hope this makes sense of it a bit better. I’m actually about to try nattokinase, bc I’ve heard very good things about it, & there’s no danger in trying it unless you use aspirin or blood thinners. Edit 6/09/24: let me add you should start at a very low dose and check with your pharmacist about medications you’re on to make sure it’s safe, & your doc before you start. I thought I wrote this yesterday, but my brain fog is pretty bad right now. My apologies.
I know all this. I run a resource site called cfs-me-navigator.com. There are links to things explaining most of what you just explained on it. Btw to my knowledge none of the top ME/CFS clinics are using nattokinase. They are all using Low dose Abilify or low dose naltrexone and some other things (see treatments section of the page I listed for links to the research).
@@corey-me-cfs I’m on LDN. It wakes me up a little but that’s about it. Again, I’m severe, so anyone trying it shouldn’t assume the same outcome as me. Nattokinase is indeed being used to prevent microclots, amongst other symptoms. It’s easy to find if you do some searching. Honestly, it was a difficult thing to use my energy to write all that. I’m so severe I can’t talk, stand, or walk more than a few feet at a time. I’m alone. I lost everything. I accept that. I’m not the only person that’s happened to. I shared all I knew in case I could be of help to someone. I don’t need accolades & I’m not trying to steal your thunder. I listened to several of your videos in fact. If all my research, education, & personal experiences might help someone, that’s enough for me. I can tell I don’t have too much longer if I don’t get a handle on this, so I decided if I find info that could possibly help, I’ll share it. I have no other motivation. I don’t have the energy or ability to run a RUclips channel as an information sight for people with ME/CFS/Long COVID, etc. i think it’s great you’re trying to help. I have a lot of useful knowledge. I spent a lot of time and hard work acquiring it. I can’t actually work anymore, but I’m not wasting it. If I learn something, I’m going to try to get the info out there.
Also so sorry you have joined us in this condition. :(
With me, it presents as not being consistent. Every day is different, I can't make plans or have friends. It's eating a healthy meal, going to bed early & waking up with flu-like symptoms, a bad cold, a horrible hangover (no drinking involved) & feeling like I'd been hit by a truck. A shower can wipe me out for the day. Brain inflammation, I can feel my brain pressing on the inside of my cranium. A small upset or stress, or overextending myself physically or mentally can lead to a full blown crash. I can hike or go to a concert & be fine or I may have PEM (Post EXERTIONAL Malaise). Fatigue, where you have to stop in your tracks & sit or go to bed. I've worked decades with this. Covid-19 made it worse. LH Covid rendered me disabled. OR, I may be fine for a few weeks. I can push & crash or push & not crash. Weather changes can set it off. Foods, additives etc. I'm moderate to severe now going from bed to the couch. Nature, sunlight & warm weather make it better (for me).
keep in mind PEM can come 48 hours later (or for some people even later). If you push and don't crash later that day or even the next day, but crash 2 or even three days later when you think you've done nothing wrong right before, it may have been that activity you thought you got away with day before. It is a constant up and down and some many variables for all of us- it's always a moving target. But you can get better at learning what will crash you, and if you rest aggressively after activity BEFORE you crash you may avoid the crash.
@@corey-me-cfs Right, Thank you for that. 6 decades in & I know about PEM & it still catches me off-guard.
@@barbarateresarhiannonsreal1756 it's so hard because its such a moving target. :(
For me it's also body temperature fluctuations, it can range randomly from 35C to 37.3C. Not just "feeling hot or cold." That was one of the symptoms at the onset, together with fevers and complete loss of appetite and nausea 24/7 for months and years. These symptoms are a bit rarer, so I wanted to mention them.
Yep. Thank you for mentioning.
Just wanted to add here 🌞 Sun! I'm in Seattle, I NEED the sun. ME/CFS (6 decades) Long Covid since 2020. I'm absolutely "out of commission" without the sun. In the sun, I can function like a normal person. I'm moderate to severe. I go from couch to bed 9 months out of the year. Unfortunately, Long Covid made ME/CFS worse & I'm unable to move to another state :(
yes thanks for this, I've noticed a lot of this for myself. my crashes involve a lot of spine pain and positional restlessness- while the screen is not ideal for aggressive rest, i use it to distract me from the pain and keep me in one place, but i understand i lose out overall in terms of rest and recovery. thanks for pointing out how essential the type of programme is- i have to watch out for anything that triggers too much emotion which also detracts from rest
Corey, all your videos are so helpful. Thank you.
I spend most of my time resting in bed, but I don't get better and my baseline is getting worse gradually. 😢
Yeah- as I learned when starting out at the edge of very severe-these things apply even in bed. Unless you are already living in the dark on a liquid/tubefed diet in utter silence not moving (which sadly some people are), there are things you can do. Pacing however you get to the bathroom (I paced crawling on the floor to a few crawls, rest a few minutes, repeat), pacing screen time, if you have light in your room, pacing light with breaks of darkness, etc. And watching for these tiny things adding up- one too many 2 minute conversation plus too much light plus not pacing enough to get to bathroom, plus stress from reading the news... the message is the same, even if the scale is different.
Maybe you are right. I pace my physical activities well. But I don't limit light or screen time. If I lie in darkness, I feel so much anxiety and boredom. It's so difficult. It feels like those things don't cause apparent crashes. But over time, my baseline goes down. And it feels like I didn't do anything different or special. Thank you for your videos. They are very educational for ME patients.
@@AlbaLynxQueen sorry to hear you are declining. I hope my advice helps. There are ways to pace and rest more even from bed.
*Aggressive Resting* is the perfect terminology for what needs to happen. This is very useful information. *Thank you.*
Hello- I have watched all of your videos. Can you tell me what medications you have taken in the past and what you are on currently? Thank you!
Everything is listed on the treatments section of cfs-me-navigator.com including what I tried and didn't work as well.
Currently on Valtrex (valcyclovir), LDA, LDN, Ketotifen, and pepcid plus supplements. Again, all listed on the site. I hope listening to my videos has been helpful!
I like your t shirt- where did you get it?
I got it here: www.meaction.net/2021/04/07/get-ready-for-millionsmissing-2021-purchase-your-t-shirt/ but I think if you search "still sick still fighting ME/CFS tee" you will find similar still for sale.
This might sound like a silly question, but what does rest look like for you? When you say you rest for a week, could you explain what exactly that entails? How many hours a day are you sleeping, and is it all continual, or broken into small segments? I'm relatively new to CFS - two months into a housebound crash, in the severe category (but closer to moderate. Each day I make two small meals, make my bed, wash a few dishes - but all things that my body is telling me I probably shouldn't be doing.) What I struggle with is I can rest about two or three times a day, for about 30-45 minutes at a time. I get so antsy, and feel like I'm buried alive just trapped in my body, just with my thoughts. I've always been a bad sleeper, and often only get about five hours a night (not in a row.) I'm amazed at people who can sleep 8 or 10 or 12 hours in a row. And those with ME/CFS who can sleep all night and then sleep most of the day too. Part of me is envious, because I know that's what my body needs. Nonetheless, I'd love to hear what rest for a day or a full week looks like for you, in terms of actual specifics, from the beginning of the day to the end. Much appreciated! Hope this finds you well.
Sleeping is hard, but once I'm asleep I usually need 10-12 hours. I don't (can't) nap unless I'm inches from a crash. Aggressive resting is staying in bed, limiting screen time, putting on the blackout curtains. If really aggressively resting I do this with only audiobooks, no screens (or check media hours apart for only 5 min at a time). At this point a day or two of aggressive rest will usually stop me from a crash, but then I have to "rest"-rest for a week in a lot of cases. If I'm resting it's more like doing way less than usual, mostly staying in bed, mostly keeping the curtains drawn, but a little more screen time and getting up for some things other than bathroom/food. It really depends on where your baseline is at. If you are more mild aggressively resting could be my "resting". If you are very sever you might be totally in the dark, no audiobooks possible. It depends where you are. Yes, rest is hard (I'm ADHD and never could sit still), but when its hard I imagine myself needing a feeding tube (will happen if you get bad enough through push-crash cycles) and its easier.
The symptoms you describe come from an overactive amygdala and the vegetative nervous system. Stress/fear. And then you go to all kind of doctors and they can't find a thing. You have to figure out what's not right in your life or what holds you back.
My father has CFS I have CFS fybromyalgia found out I have autism add reason amagdalia sensitive father surely as adhd
@@Truerealism747 interesting. These things are all connected together. It is all about the family constellationnamd how we grew up. Do you live with your father still? And what about the mother? Is she free of symptoms?
@@user-we4ww7tz8wlost my mum.lost year to severe ms autism heds my grandfather had it his mother and grandmother
@@user-we4ww7tz8w also ADHD autism connection Dr lenz
Thank you for sharing your experiences with ME/CFS. I’m trying to learn more about it and these videos of yours have been eye opening.
this is an amazing advice. Thank you 🙏
Thank you so, so much for your wisdom and reassurance! I’m relatively new to the game-long COVID sufferer since about April 2020-and all of your tips are so, so helpful in my particular situation. It’s often incredibly difficult to enunciate how much my senses need protection, or how much energy is sapped by seemingly “non-exertions” to lay people, but your articulations are both validation and helpful. Thank you for your work!!!
Very welcome! So glad to help!
I could barely hear you, and I really wanted to listen.
This is so helpful. I’m moderate to severe. The cane and rollator barely get me around my tiny home.
Re. the PACE trial, I read somewhere (don't remember where) that it was underwritten by a medical insurance company. Does anyone know any more about that?
I have heard rumors, but haven't seen the facts on that.
I So needed to see this video!!! I have CFS and fibromyalgia i need a wheelchair to preserve some energy. I have a cane, and I also have a walker ... you are not alone
My doc calls it post viral condition. Finished
ME/CFS is a post viral condition, but your doctor probably doesn't understand/hasn't heard of ME/CFS. The resources for ME?CFS for doctors are under ME/CFS not "post viral condition". See doctors section cfs-me-navigator.com
How about just walking in and asking them why the fuck am I telling you about ME when you’re supposed to be a doctor and then ask them to go away and do their homework and come back when they’re actually qualified to treat you ?
Likely when they went to medical school it wasn't taught or it was literally a 2 minute aside in one lecture. It was also likely taught as "psychosomatic" unless they graduated in the past few years. They simply weren't taught it. The CDC only changed their guidance 7 years ago and Great Britain's guidance changed just last year. Now with Long Covid there is much more awareness of ME/CFS so you can make actual headway by emailing them reasorces.
@@corey-me-cfs that is true yes. It is the system to blame more so than individual doctors in a lot of cases. Do you think there’s a lot of people who think or pretend to have it ? It’s also a trend these days.
I think the number of undiagnosed people is WAY higher than people who "pretend" to have it. @@PaulKitching11
@@corey-me-cfs see this is the problem. You don’t admit that factitious disorder exists. Or that people are very depressed or deconditioned and convince themselves they have ME. They go to the doctors, the doctors can see through it. And then real sufferers get put into the same bag as these people and ME itself gets seen as not real. They are also the same people who tolerate the term CFS. Don’t tell me you haven’t seen them on social media.
@@corey-me-cfs by validating these people it renders real sufferers less believable and ME less credible.
This is eye opening, I have had fibro for about 20 years and I’ve been getting worse and worse brain fog, fatigue and PEM for at least the last couple of years. Diagnosed with trigeminal neuralgia and migraine as well and the most recent surprise, random tachycardia for no reason. I am finding it hard to think and get words out, but trying to write things down so I can talk to specialists. Thank you for this.
Luck!@@Miss_Distress
But how does one no it's fybromyalgia or still CFS I have heds do you? Autism ADHD now diagnosed after 27 years of symptoms@@corey-me-cfs
Your set up looks similar to mine. What are Casetta lights?
Thank you for posting this message. After living with ME/CFS for many years, my social circle has shrunk to just a few people. But living like a hermit is better than wasting precious energy arguing with those who don't believe I'm sick, who believe it is just 'stress' or whatever, who believe that all I need is vitamins/exercise/positive affirmations etc etc. People with invisible disabilities will never be believed for lack of hard evidence.
It's so frustrating. See also the first "Talking to doctors" video because that might be helpful too.
Sorry for another question... I appreciate your help/videos/input! How do you get over the embarrassment of using a wheelchair? I use one to access most of my community activities (which are rare) but medical appointments are hard for me... doctors and staff who knew me long before ME. Plus navigating power wheelchair in the small exam rooms when I need a physical exam (cancer checkups etc). But I literally don't have the energy to go most times and end up cancelling/rescheduling which is unacceptable due to my cancer history. But I'm so embarrassed about using it & explaining the whys when asked.
It is a hard mental shift at first (I was a gymnast, then dancer/circus performer/martial artist, ten wheelchair user so I get it). That said it's a tool that can give you your life back. I put my feelings aside and just use it and demand respect. I find that people who aren't used to me in a chair see me in the chair, they realize how serious my condition is and I get more support and understanding for having ME/CFS. Give yourself permission to use what you need. As to navigating in it- it's a matter of practice. I also have a wheelchair site www.mywanderingwheels.com if that is helpful for you.
I'm a recent subscriber to your channel. Some very good information, resources, and personal insights. Many thanks. Really glad to know you're doing much better. I hope things continue along that path. From watching and catching up from your previous videos it's obvious you're looking and feeling much better. A healthy glow!
Cory I haven’t watched many of your personal updates but just wanted to say how meaningful it is to hear you speak in some level of detail about your day-to-day decision making, challenges, and thought process. It made me cry just listening to you talk about your experiences with daily life since they’re so similar to mine. While people post in support groups about some of the bigger deal stuff, something about hearing you talk about the everyday stuff that we have to think about constantly, it really made a difference for me. Thanks as well, obviously, for your encouragement and inspiration to rest aggressively
Very welcome. Glad it is helpful!
So happy for you 🥳 i hope it continues on this trajectory! I watched your video where you paced your crafting. I’m not at a point where I can do that anymore but I miss making art so much, if I ever can again I’ll follow your advice :)
Corey it’s great to hear you are doing well. Thanks for this update, it helps keep the hope alive. Take care 💕
OMG, that's possibly happening to me.... I feel really flu like sick, very exhausted everyday, but I feel like I can walk 1km most days, very slowly. And sometimes cook a meal and drive for 15-20min. But after a few days or a week I get so much worse... I need the walks because I am so wired and restless that I feel I might go crazy if I try to stay in bed all day. It's vey difficult to tell what is better to do...
See cfs-me-navigator.com. If you have me/cfs the walks are likely hurting you. It's really hard to deal with the restless energy (I know I was hyperactive/adhd BEFORE getting sick!), but exercise will cause a crash, the more you crash the worse you get. Wishing you luck.
Your description of the fatigue is so spot on
My symptoms fluctuate so badly 😢 I can slowly clean the house, and drive the next day and so on. And be fine for 2 weeks. And then suddenly after resting I can be in muscle pain, have extreme exhaustion and brain fog, unable to read or listen to audio. My heart rate is 130 every time I stand. My doctors keep gaslighting me. Can it be M.E? Or the crashes can only be delayed up to two days?
That's so great. Congratulations
I can't rest really. I am so wired that I don't rest when I lay in bed😢
People are different. I'm a pessimist. What helps me most is imagining how much worse it could be. I can still shower, eat and use the bathroom on my own. There's a real risk of losing that, too. Maybe that state is one bad crash away. So, I tell myself, stop playing with your health and rest more, or I might regret it. Just like I'm regretting triggering my previous crashes. No situation is so bad that one can't mess it up even more. 😅
Thank you for this information. I’ve been doing that for quite some time; but perhaps not as intensely. Good information.
My experience/perspective: I like the metaphor of a fuel tank. - Every activity depletes it, every rest refills it. - The healthier I am, the faster it refills and the slower it depletes, vice versa. - So I try to never get close to depleting it, as it makes it far more costly to refill. The fuller it remains, the more overall "active time" I get. Also, crashes can cause chronic, almost irreversible fatigue with new symptoms (my newest skill is vertigo). So they should be avoided at all cost. But maybe depleting the tank (hidden crash?) can also cause that? All the more reason to maintain a full tank.
Yeah, you are right! Crashes can definitely do that (I went from mild to the edge of very severe in a single day) but running close to empty for too long without ever quite crashing seems to do it too.
What do you think of people who have formally had ME/CFS who say that a full recovery as possible with (mainly) brain retraining? I've been trying to follow their advice/recommendations for over a year and all I've seen is a decline in my health/ increase in my symptoms. I don't have even close to the $400-$600/month to spend on their full access programs.
@@natashalundgren9677 yes, thats the answer! Its hard to pace but it works and brain retraining doesnt. My physical therapist taught me pacing, so its not laziness at all!
Our set-up’s are very similar! 💙
The aggressive effects: So, as you say: aggressive resting is key, the only thing ME-Suffer can do to survive years and decades, which is true, but what are the consequences for the soul or body-soul-system? There is a point where you just can't rest any longer in that way. Every acitivity which is needed for the soul and and balance of your body-soul-System leads to crash, for years and decades. You feel, that your psychological needs are so urgent, that you cannot longer stay in bed. Thats the limit of Pacing in severe but also moderate Patients. She can be reached on day.
ME/CFS is absolutely soul-crushing, and it is so hard to forgo things, but to get worse is even harder. With pacing though, you can often do way more than with "pushing through". The "aggressive resting" is specifically for before and after moments when you know you are doing more and extending yourself- doing something maybe that feeds your soul knowing it will cost you. It's a tactic to stop a crash when otherwise that extra activity would absolutely crash you. It makes it possible to go to that extra thing that feeds your soul.
You are so true! But personally after many years of moderate ME I experience a horrible impatience and often need those extra things to survive psychologically. It's tricky. But I know you are true. @@corey-me-cfs
The word aggressive is appropriate!
It's so hard, I know @@marionjeannesuterbrightestdark
I definitely struggle with that too. I've never been a good sleeper in spite of my best efforts as a now expert in sleep hygiene, and when I'm just laying in bed, awake, and doing nothing at all, it feels like torture. That inevitably leads to rumination, and spiraling of depression and anxiety. I wholeheartedly recognize the need for aggressive rest, but it feels like being buried alive. @@marionjeannesuterbrightestdark @corey-me-cfs
I really appreciate your videos, they are helping me understand what’s happening to me so I can take care of myself.
So glad they are helping. Wishing you luck in this journey.
Thanks for all your great videos! They are very helpful and give me hope and so good tips on going forward with my recovery.
Thank you!
Here’s your evidence that preventing crashes is the way out of this terrible disease: workwellfoundation.org/wp-content/uploads/2023/01/Functional-Outcomes-of-Anaerobic-Rehabilitation-in-a-Patient-With-Chronic-Fatigue-Syndrome.-Case-Report-With-1-Year-Follow-Up.pdf