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
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.
Hi Conor. Came across your channel as I am going through something similar and can absolutely relate to many of the points you make. First of all, you should be encouraged by the progress you have had. This recent downtrend does not take away from that. Secondly, I would urge you to pace yourself better. I believe, as you, that ME/CFS is a dysfunction of several bodily systems. In particular I am inclined to believe that the immunn system plays a central role, and the immune dysfunction can happen following severe stressful events, whether it be emotional/psychological, infectious. and what not. For whatever reason, ME/CFS does not seem to manifest in exactly the same way in everyone, although there are clear commonalities. Some people for instance seem to be afflicted more with pain, whereas others have debilitating fatigue. However, most people have a combination of both. It is my understanding that pain has been the most debilitating symptom for you, although fatigue also has played a part. More recently you describe fatigue as being perhaps the most bothersome symptom. Personally I have had both fatigue and pain, but fatigue has definitely been the major hallmark of my illness. In particular I have had a extreme PEM and crashes following activity that at times have made me fully dependent on care. As of now I am doing somewhat better. Hopefully this will continue to last, as it mentally is so much better to be in an uptrend (psychologically it is so hard to reduce enjoyable activities that one has gotten used to, I know). Anyway, I would urge you to learn to pace yourself better. You seem to have been doing quite well for a time, and as a result, you naturally have tried to expand your barriers more and more. No one can blame you for that as the illness is inherently sadistic in the sense that it forces us to go against our very human nature. However, every crash actually makes your worse and it affects your long term credit. One of the keys to putting the illness into remission, in my humble opinion, is to avoid activating the dysfunctional innate immunity. Your simply have to pace yourself so that the crashes are avoided. Ideally altogether. If your are still in a crash state where you continye to deteriorate, I urge you to rest aggressively until things calm down. Then you start building your activities up from there, but do so conservatively. It is better to be safe then sorry with ME/CFS. I am not entirely sure where you are at, but get a mobility aid such as a power chair if necessary. And when I say "pace yourself", I do not mean do nothing. The only time when you should perhaps do nothing is when you are in a crash. After that by pacing I mean do what you can withing your limits. I am not sure the illness ever will fully leave us. But I am convinced that, based on the improvements that you have described in your videos, that you can learn to live well with this condition and have a meaningful life. It sucks for both of us that we are restricted by something like this. But let us not lose hope. Thanks for sharing something as deeply personal as this. Hopefully your journey can help others in the future, even though you are still on the path. All the best!
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.
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!
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.
@@me-cfs-strategiesforhealing Thank you for this and for pointing out how real ME is. There is a wealth of biomedical research that demonstrate the biological dysfunction of this unknown disease. Be careful about handing over money to a course that promises a cure (particularly if it's psychological). You cannot verify the person's story, they hide behind the keyboard and could work for the company trying to drum up business. Psychological models and or techniques may help but they do not cure ME (you can learn about most of them for free and there have years of strong independent research to show they can help to manage a wide range of physical conditions e.g. polyvagal theory to calm the nervous system, mindfulness). Unfortunately, it is very tempting when you are so ill and there are no answers to go for a programme that promises a quick cure. It is hard not to hope that it might be the very thing that will get you back to your life when the medical community has no answers...yet. It's a cruel game the people of these programmes play.
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 😁
Thanks Brett, I'm sorry to hear you are working through something too. Sending all the very best, I hope any treatment goes well, and hopefully your garden and trees will at least provide a therapeutic escape.
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.
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 ❤
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
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.
Hi yes I do, I just can't reply to everyone atm but that would be great if you had a longer comment. Be sure to not push yourself too much though. All the best 🌿
@@conorhope2307Hi Conor, sorry I’ve still not got round to the longer comment. I still hope to do it. I just had my own set back with a sickness bug, which caused more fatigue. Hopefully one day I’ll do it. Not gonna put a time scale though. I know you understand. At least you’ll get notified if I do. Hope you’re picking up!
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.
Hi Conor. Chronic pain here too. Hoping for you getting better. Distraction and friends and family help. MindBody connection. Hope it helps.
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
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.
👍
I’m sorry to hear you are in a crash. Time for rest and recharge
Hi Conor. Came across your channel as I am going through something similar and can absolutely relate to many of the points you make.
First of all, you should be encouraged by the progress you have had. This recent downtrend does not take away from that.
Secondly, I would urge you to pace yourself better. I believe, as you, that ME/CFS is a dysfunction of several bodily systems. In particular I am inclined to believe that the immunn system plays a central role, and the immune dysfunction can happen following severe stressful events, whether it be emotional/psychological, infectious. and what not.
For whatever reason, ME/CFS does not seem to manifest in exactly the same way in everyone, although there are clear commonalities. Some people for instance seem to be afflicted more with pain, whereas others have debilitating fatigue. However, most people have a combination of both.
It is my understanding that pain has been the most debilitating symptom for you, although fatigue also has played a part. More recently you describe fatigue as being perhaps the most bothersome symptom. Personally I have had both fatigue and pain, but fatigue has definitely been the major hallmark of my illness. In particular I have had a extreme PEM and crashes following activity that at times have made me fully dependent on care.
As of now I am doing somewhat better. Hopefully this will continue to last, as it mentally is so much better to be in an uptrend (psychologically it is so hard to reduce enjoyable activities that one has gotten used to, I know). Anyway, I would urge you to learn to pace yourself better. You seem to have been doing quite well for a time, and as a result, you naturally have tried to expand your barriers more and more. No one can blame you for that as the illness is inherently sadistic in the sense that it forces us to go against our very human nature. However, every crash actually makes your worse and it affects your long term credit. One of the keys to putting the illness into remission, in my humble opinion, is to avoid activating the dysfunctional innate immunity. Your simply have to pace yourself so that the crashes are avoided. Ideally altogether.
If your are still in a crash state where you continye to deteriorate, I urge you to rest aggressively until things calm down. Then you start building your activities up from there, but do so conservatively. It is better to be safe then sorry with ME/CFS. I am not entirely sure where you are at, but get a mobility aid such as a power chair if necessary.
And when I say "pace yourself", I do not mean do nothing. The only time when you should perhaps do nothing is when you are in a crash. After that by pacing I mean do what you can withing your limits. I am not sure the illness ever will fully leave us. But I am convinced that, based on the improvements that you have described in your videos, that you can learn to live well with this condition and have a meaningful life.
It sucks for both of us that we are restricted by something like this. But let us not lose hope. Thanks for sharing something as deeply personal as this. Hopefully your journey can help others in the future, even though you are still on the path.
All the best!
Thanks so much for the thoughtful and helpful comment. Wishing you all the best, and I appreciate the advice 😊🌿
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.
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!
It been awhile
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.
PS I also have videos on my channel which talk about research that I think basically explains ME. Research from Germany and Charite University, Berlin
@@me-cfs-strategiesforhealing Thank you for this and for pointing out how real ME is. There is a wealth of biomedical research that demonstrate the biological dysfunction of this unknown disease. Be careful about handing over money to a course that promises a cure (particularly if it's psychological). You cannot verify the person's story, they hide behind the keyboard and could work for the company trying to drum up business. Psychological models and or techniques may help but they do not cure ME (you can learn about most of them for free and there have years of strong independent research to show they can help to manage a wide range of physical conditions e.g. polyvagal theory to calm the nervous system, mindfulness). Unfortunately, it is very tempting when you are so ill and there are no answers to go for a programme that promises a quick cure. It is hard not to hope that it might be the very thing that will get you back to your life when the medical community has no answers...yet. It's a cruel game the people of these programmes play.
Ketogenic diets made me go from mild / moderate to very severe.
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 😁
Thanks Brett, I'm sorry to hear you are working through something too. Sending all the very best, I hope any treatment goes well, and hopefully your garden and trees will at least provide a therapeutic escape.
@@conorhope2307 unfortunately its major surgery and I thought I was fine up until just over 2 weeks ago, you never can tell what's just ahead 🙄
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.
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 ❤
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
Thanks for the kind comment 🌿🙌
Hi Conor - are you still taking medication to help your me/cfs, or did you taper off?
Thanks
Conor, thank you so much for sharing.
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.
Sorry I spelled your name wrong, I know another Connor spelled that way.
Hi yes I do, I just can't reply to everyone atm but that would be great if you had a longer comment. Be sure to not push yourself too much though. All the best 🌿
@@conorhope2307Hi Conor, sorry I’ve still not got round to the longer comment. I still hope to do it. I just had my own set back with a sickness bug, which caused more fatigue. Hopefully one day I’ll do it. Not gonna put a time scale though. I know you understand. At least you’ll get notified if I do. Hope you’re picking up!
Sending hugs!
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.
Could you link to the free 30 day program please? Can't find it. Thanks!
@@mamatra1552faith canters free 30 day cfs program
UA-cam won't let me share the link
I’m also crashing after my exams this summer, it sucks! Hope everything begins to ease soon 🤍
🤗