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This is a normal part of recovery. It is not a linear process. I believe this will pass if you don’t give it too much attention. Try to keep your mood elevated. Calming your nervous system will help. Give yourself some grace.

How?!?! Im bedbound

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Hi, i also have CFS from Ehlers Danlos hypermobility. My brain feels numb all the time and i couldnt do anything at all. Totally unemployed and feel like a worthless person. Maybe u should check for hypermobility syndrome. There’s a great online community for EDS. Cheers!

Hi Conor. Chronic pain here too. Hoping for you getting better. Distraction and friends and family help. MindBody connection. Hope it helps.

Hi Conor - are you still taking medication to help your me/cfs, or did you taper off? Thanks

It been awhile

Hi Connor, Do you get notified when we make a comment or do you have to look manually? I wanted to make a longer comment when I had energy but it might take up to 2-3 weeks before I find the time and energy to do it due to spending my energy on other routine things. It’s like the odd day when I can spare some energy for something different like this. So feel free to check back. Don’t know if I should reply to my comment or make a new one. Anyhow, for now, don’t be too discouraged, set backs are perfectly normal, stay positive because our mood affects our health. A good positive thought for example is to see it as a learning experience. Maybe counselling can help with this kind of thing. Take good care of yourself.

Conor, thank you so much for sharing.

Hello Conner so good to see you please be kind to yourself I've had ME twenty years you've done remarkable but remember there is no cure for ME only management so rest it's not any kind of depression it's the illness don't listen to anyone saying that your living with chronic illness meditation is really helpful I use that on daily basis for over 15 years ME is so damn frustrating it's so all encompassing remember it's your body you know it best what you are experiencing is normal for ME keep your chin up followed you from beginning sending love hugs xx❤ take one day at a time know it's not any off your fault from fellow ME sufferer Patricia knights 🌹

Whole heartedly agree with you. Calming the nervous system has helped to stabilise for short periods but not a cure for me by any means. I hope you manage to settle and stabilise. Thank you for advocating through your you tube.

Hey Conor, I hope the steps you're taking help you to get through the mental side of the flare up. Make sure you give yourself permission to fully rest, I know the default for us humans is to think "What can i do?" but with M.E the best answer to P.E.M is generally do nothing, or at the very least a lot less. I know my P.E.M is much shorter and less severe when I'm able to rest properly. Best of luck, I am glad you have the support of family.

Sending hugs!

I’m also crashing after my exams this summer, it sucks! Hope everything begins to ease soon 🤍

Much love Conor. I think of you and wonder how you're getting on, so it's great to hear from you. Thanks always for sharing the process and your journey. I'm encouraged to hear about the things that you're doing. I understand doing things and not knowing how it may or may not provide any benefit, but I know that you're doing your best and that's all that any of us can do. God, the universe, love and grace, whatever it is in which we can place our hopes will have to care of rest and do what we can't for ourselves. Here's hoping that something like AI could be used to further research into illnesses like M.E. Sending my best wishes. -Michael

I highly, highly recommend Pain Free You. All his information is on UA-cam. If you type in Fast Start Playlist, he tells you everything in those videos. I did join his group coaching only because I wanted the extra support. I am so close to recovery about 90%. Its not just for pain , but other stuff and cfs as well. If you have any questions, I don't mind answering

Sorry to hear you've had what appears to be a bit of a relapse Conor, I'm hoping it's just your body telling you to really take a step back and rest more, the allotment will be fine for a while without you exhausting yourself . Obviously I've simply completely stopped making videos as i have an extremely serious health issue to deal with and I've just lost interest in making videos while I'm waiting for treatment to start. If i have a good day I might suddenly throw out a video 😁

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i hope you feel better soon! your videos have given me a lot of hope. i've had ME/CFS for 10+ years and i've been struggling a lot the past several months. it's so frustrating when people try to psychologize this illness. i know firsthand what it's like to have clinical depression and anxiety and it's a completely different experience. of course psychological problems can exacerbate the illness, but i still crash when i'm doing well mentally. i've found that using my apple watch to keep an eye on my daily step count and HR in conjunction with the free version of the visible app can be very helpful. pacing is key. sometimes it's a pain in the neck. it's so much better than being stuck in the push crash cycle though

Hello Conor. I'm so sorry you are having a setback. ME/CFS is a serious biomedical illness (contrary to what other commenters might say). I've found a carnivore diet to help my ME - 6,000 steps per day before, 10,000 now on my good days. I have videos on my channel about it, if you are interested. Best of luck with getting back on track.

I’m sorry to hear you are in a crash. Time for rest and recharge

Hi Conor, did you feel it slowly building? Your body is being kind to you, telling you hey slow down. I need you to give me some self-love ❤️ Thank you for updating us. Yes, being unwell on top of chronic illness is a whole different ballgame. Your proactive now. I, too, love meditation, breathing techniques, etc. to help my nervous system. Take care of YOU ❤

Hi Conor, sorry to hear you're having a setback. I was really inspired by your video's when i was dealing with CFS. Some straight to the point harsh words: What i'm hearing is that you're probably on high alert for symptoms again. Your anxiety towards activity is constantly triggering your nervous system, which is draining your energy. You're not ill you're just stuck in a negative feedback loop. You're blood tests will probably not show any negative results because you don't have a defective organ or a major vitamin / mineral deficiency. You have just become scared of activity and you keep telling your nervous system that activity is dangerous and having a crash confirms this for you but really it is not the activity but the thoughts you have around the activity that is causing the crash. Being scared of activity and perceiving a crash will lead to a crash. It's like knowing that a bear is going to enter your room tomorrow (or whenever you have an activity planned) and by the time it does you're exhausted from fear. except in this case unlike a bear activity is not really dangerous, you perceive it as being dangerous. 3 things i did to recover: - Ask myself what healthy people are doing vs what i'm doing. (I was telling myself that activity was bad for me and that i would have a crash after, healthy people don't look at activity that way they just go about their business and don't give it a second thought.) - I stopped being scared of crashes and let them come and go as they please. I told myself that if i was tired after activity i would just rest and everything would be fine, which it eventually would. - Stop the negative self talk when having a crash i.e. "I will never recover", "Why did i do to much", "Why is this happening to me" etc. This is very triggering for the nervous system. I highly suggest taking a look at Faith Can'ters 30 day free CFS program also maybe checkout my recovery story i did with Raelen or Raelen's video with Dr Becca Kennedy. <- Please checkout these resources. You can turn this around very quickly i'm sure of it. Just really have a good look at your thought patterns pertaining to activity. Best of luck, i hope you beat this thing because you deserve it!

I wonder what will happen if you try to taper this psych drug cocktail. I was on Paxil for 5 months and I tapered it very fast, like 2 weeks. After that I went through severe withdrawal with myriads of debilitating mental and physical symptoms. Then I was prescribed benzos. After 2 weeks of taking that I went from moderate to severe. And never recovered to my previous baseline. Psych drugs are just powerful stimulants for your brain. They can mask symptoms temporarily. But they do not treat M.E. But they definitely can mess up brain chemistry to the point of no return. That's been my experience. I hope you won't go through the same. Take care.

Have they addressed your gut microbiome? Have they mapped it?

This sounds amazing and I’m very happy for you!! Have other patients with ME improved as much as you or are there a lot of differences? I’m very curious

Hello Connor so very happy pleased you are doing so well its wonderful turely is thankyou for posting ive watched your journey from being im fellow ME suffer over twenty years been bedridden now housebond sit up in wheelchair you are remarkable young man wish you every continued improvement 😊 lots love patricia knights my husband is typing for me xx keep on fighting ❤

Wow!! Was hat dir geholfen?

Bedridden for most of my day with central Sensitization or fibromyalgia or CFS idk i get different answers from different specialists. It's been 9 years, on & off, for me. Definitely spent the better part of that 9 years in bed. Im tired of living like this.

I was watching Tannah Murtagh's channel on chronic pain/ neuroplastic pain, and thought of you so it might be worth checking it out to see if it'd help. If it's not your cup of tea or you'd rather stick to the Leeds care plan, that's completely understandable. Just thought that if it's helped me, maybe it could help you too. Anyway, take care 🌵👍

Did they identify a root cause?

Hope you’re still doing better. Worried you may have relapsed. Certainly hope that’s not the case, but just wanted you to know, that you’re in the thoughts of others.

So glad you are doing better. It is very difficult not to think of how you feel. Having so much pain in so many parts of your body becomes very overwhelming at times. I agree that keeping as busy as possible is important. I try to distract myself as often as possible. My Fibro is very severe now after suffering with it for over thirty years. I get new and worse symptoms every year. My friend (who has severe arthritis in her knees and hips) went out for a lovely lunch last week. She was hobbling with her cane, and I with my walker, but we had such a lovely time and some good laughs. It was worth the discomfort getting there as we both agreed that we didn’t feel our pain as much when we were eating our lunch in a very pretty little cafe and laughing together. I try to force myself to go out every day, even if it’s just to walk around a grocery store using a cart to help me walk. I can’t walk very far now without the aid of my walker, but I keep trying to stay as mobile as possible. It is important to laugh as much as possible. I watch funny tv shows and try to stay as positive as possible. I recently had a severe flare up which lasted over a month and was very disabling. I live alone but am very fortunate to have 2 wonderful sons, great neighbors and friends who keep in contact with me all the time. It can be a very lonely Illness so it’s important to stay connected to the outside world as most days we don’t want to get out of bed or leave our homes. You are doing a wonderful job setting goals for yourself. I feel so bad to see so many young people dealing with this debilitating disease. I started with it in my late 40s, although think it started many years before. I did have a very bad virus which lasted for nearly two months and doctors never could find out what it was. (I think it may have been Lyme) I was also in a very verbal and emotionally abusive relationship for many years and think this is what brought on my fibromyalgia. I pray the doctors and scientists find a cure for all you young people soon as it is such an awful illness with very little help for our pain. Please take care of yourself and I hope you continue to improve. Big hugs from Canada❤️🇨🇦❤️🇨🇦

Honestly, I have been mad at the world I’m always alone I haven’t how many friends because I’m always taking care of my daughter. I had her when I was 18 and she was from being raped by three guys the night of my high school graduation. She’s awesome now and I love her dearly. It’s been a very very hard long road. She’s 34 and I am 53. I just know that she’s taught me a lot And I love her dearly but the loneliness that I have felt all these years have been horrendous and now it’s getting worse because I tell people about Jesus and they told me off. Unfortunately a lot of people don’t want to hear about Jesus I don’t know why who wouldn’t want to go be with Jesus and be made new and not ever have pain or sorrow anymore maybe people who’ve never experience pain and suffering I don’t get it I don’t know. I just hope you seriously listen to what I’m saying.

I suffer from fibromyalgia, and I have osteoarthritis all over my body and my joints and now I have psoriatic arthritis. My point is I’m only 5 foot tall and I have a daughter in a wheelchair that is severely disabled. I cannot walk or talk or do pretty much anything so basically I live for two people, I don’t have the choice to lay down. I don’t have the choice to do anything I’m on my feet all day taking care of my daughter and they want to cry pretty much all the time because I am in so much pain in my body, but I want you to know Jesus is going to wipe away all my tears. Oh my daughters tears and we will suffer no more as soon as he comes and he’s coming very very soon I look forward to that moment, and when he calls us up to him, I probably will collapse in front of his feet when I see his face because I will finally finally be in front of him seeing him and I don’t know I’ll be so happy I’ll just probably collapse. I am so excited to be with Jesus, my Lord and Savior for eternity.

I pray that you have Jesus in your heart!!!!! Jesus is coming for the true believers any moment. If you don’t have him please confess your sins and ask Jesus in to you heart now. If you have him you will go to heaven and receive a new body. No more pain and suffering. For eternity!!!!! If you don’t have Jesus unfortunately you will perish . I don’t even want to say it but nonbelievers go to hell and suffer eternal damnation for ever. It’s too late to sugarcoat anything Jesus is almost here. He comes in the clouds and calls us up to him. It’s in the Bible it’s almost time. Get Jesus I’ll get left behind.

My perspective on inpatient rehabilitation centres Is that they can help people who believe they have the ability to do more and improve. Because they have that ability. Just like the PACE trial could probably help a few people, who were able to incorporate graded exercise therapy without getting worse. It’s when the rehabilitation is assumed to be able to help people who do not feel in a fit state to rehabilitate- or feel they have a ceiling - which might actually be most of the community that we have issues. I’ve heard of people, with severe ME do really well in the ward that existed in queens, albeit those in the private wing and ready to rehabilitate, I’ve also heard of people who walked in and were unable to walk out. Basically the people who seek rehabilitation can rehabilitate and self selects for success. This does not mean the answer for most severe ME is rehabilitation. This young male knew he was able to. That’s why he applied with great keenness, he was in the papers, he knew what they offered, he thought it would help. It’s also incontrovertible that severe ME should not be managed in a ward primarily geared to psychological illness. What biomedical research do they do there? Zero I expect. The fact he felt uncomfortable in pyjamas shows the level of severity they are geared for. This young man was very new into his severe illness where easy rebound is possible, again this doesn’t apply to many who’ve been harmed, and I wish those who publicise rehabilitation success would consider outside their own experience. Be careful about pain sounds potential issue I appreciate the video upload because my OTs are trying to get me in there despite me Ill decades and tube fed. No thanks. But the myth/ lure of easy rehabilitation vs biomedical research and treatment continues. The medication they use offers me nothing , tried sertraline, zero help, and i don’t have pain. And distraction therapy is the last thing I need. Biopsychosocial model has done so much harm to so many , because there has been zero biomedical research. RIP the young women who have died of ME without treatments thanks to the psychologisation Emily Collingridge Kara Jane Spencer Lois Owen Lynn gilderdale

What really helped you get better ?

Thanks for making this. I’m recently diagnosed and, not to be dramatic but, some stories are terrifying. It’s good to see someone not giving up and improving. Good luck with your recovery.

The System Ignores Atlas Dislocations. Label and Treat the Complications with Pharmaceuticals. They left Me Hung Up like a Roping Steer. They think everybody's depressed. The Herd of Ignored Atlas Dislocations comes with Blood Flow Restrictions to and from the Head. Damaged Nerves in the Skull Atlas area. Misalignment of the Jaw and Throat. I don't think Depression is a Good Name for Seizure Issues. My Chronic Pain and Fatigue are from an Atlas Dislocation. Ignored or not. That's the cause of mine. Hyper Sensitivity and such with No Energy. Barely able to walk is not a Fun Place. Sounds like They want You to OD on That Cocktail. Good luck and God Bless, C. wears an Air Brace.

Hey Conor, glad to hear that you're staying positive and doing more with life! I've had chronic fatigue twice and fibromyalgia once across the last 8 years once and want to let you know right now that these conditions are entirely reversible. I want to share this with you to save you potentially years of frustration going from doctor to doctor, most of whom don't fully understand your condition. FYI I'm free of all symptoms now. I want to point you in the direction of working with a functional medicine / integrative medicine practitioner. Yes, this means going private, which can be quite expensive, but it is a paradigm of medicine that _actually understands_ the causes of fibromyalgia / CFS (hint hint, it starts with gut issues, and eventually leads to mitochondrial dysfunction... mitochondria make ATP, or energy - is there any wonder why you're tired?) rather than only masking the symptoms (have pain? take a painkiller!). Secondly, get informed. We live in the age of the Internet - if only we knew what keywords to Google! I've found searching for "ME/CFS" yields only sob stories. However, searching e.g. "functional perspective on fibromyalgia / CFS" instead gives you actual informative solutions. I was shocked that the science was clearly out there, and yet, the NHS continues to claim there 'is no cure' (how's that for being hopeful?!) So do your own research. 'Blocker' medications are not the way to go (anti- this, anti- that). You'll find nutritional support and supplementation will be much more effective at helping your body heal itself. Straightforward example while I'm at it... e.g. instead of blocking extra pain signalling by using painkillers, how about actually supporting the nerve cells process pain _correctly_ by giving them what they need, i.e. CoQ-10? Saying that, there's no substitute for working with a practitioner, because every individual is different and you need a personalised approach to helping you reverse the cascade of issues that led to this condition in the first place. Also, ignore the Wikipedia page about functional / integrative medicine. It's painfully out of date ;) I hope this helps everyone else who follow your channel too =]

Conor! Glad to see you back, and so pleased you’ve improving, pace I promise things will slowly get better takes time, stay strong you’ve got this! :)

It's been great to see the progress you've been making Conor 👍, onwards and upwards 🤞

Thank you for posting it's great to see you looking so well with your lovely companion issay great to hear your update how far you have come your progress is fantastic well done Conner take good care all the very best for the future followed you since your first post enjoy your holiday I live in Ayrshire Scotland love hugs 🫂 from fellow ME sufferer patricia knights 😊 🤩🤩

Brilliant to see how far you've come.🎉 Thanks for the update 🍃👍

thanks for the update, hope you continue to improve, been watching for a while now

Your dog is so, so cute!, my dog heard your dog whining and looked up to see where that was coming from😅 I'm really glad you are doing so well! Remind me what you have done to get where you are now? I've been making improvements over the past few months and just walked 13 minutes which is big for me. Creatine has helped my muscles. I still have some bad days, but they don't last. I have been loving the Pain Free You youtube channel! I do his group coaching, but all his content is on youtube as well. Using his teachings has really helped a lot!

Hey Conor! Michael Beck here. I've been following along with you on your Instagram, but it's great to get a video update as well. I'm very grateful and blessed to hear how you're doing! It's a privilege to be collaborating with you to share your story on my podcast. I'm excited for that. Until I hear from you next stay well and enjoy your holiday in Scotland!!

Hi Conor! So happy to hear from you again. It's great to see your improvements in how you are feeling and functioning. Remember to take a step back tho you've done so much already! I'm currently housebound and by the moment mostly bed bound, I definetly haven't improved in the way I would've liked to I've had some small ups but I know I'll get there it is just not easy dealing with several mental health problems at the very same time... Thanks again, hope to year from you soon peace 💚

Thank you for updating us here who don't have the other social media to follow you on. It's great to see you out and about - it's amazing the difference from when you struggled so hard just to go from night-bed to day-bed, even though you still have your current limits on energy and of course the pain as you said is still a factor for you - it's brilliant to see your improvement. You are the reason that I signed up to UA-cam, and your channel was my first subscribed channel. I hope that you can (carefully and mindfully) live your best life. Remember, not to push it though, and all that. Your dog loves it out there too, clearly. Conor, it was great to see the update, look after yourself and best of luck for your future plan that you talked about! To everyone else who is still bedbound and suffering - you are 'remembered', so to speak, please be kind to yourselves, I hope for you all, the best.