I am so grateful to hear from this video that I can now really believe that this is not all in my head or attitude. Which is why I have pushed myself with variety of activities and wondering why I crash for days on end trying hard not to give in to despair, and yes, I feel so guilty and isolated from family and friends because they simply do not understand what I am going through and why I cannot accept their invitations to join them. Thank you Sean. I will continue to follow your videos with a new hope of steady recovery. God bless you, Sean
After 40 years with ME, I got the “ do you think it’s a mental thing” This from a young well educated doctor I find these videos somewhat emotional, my first time hearing someone talk about how Ihave felt . Thank you so much.
Yep...me too.... thank you for saying you've had it 40 years. For me it's 46....I was 14....60 next month...I find I can't listen to people complaining about having their life ruined when they've only had it 10 years.... The intense pain I could cope with... it's having to dumb yourself down cos my brain won't work, leave jobs, even part time kills you....and see people who don't have the skills you have get promoted over you. Can't even do simple stuff so forget about potential. I'd have liked to go to Uni to do art but couldn't even contemplate 13 hours a week. I'm ready to find out what this Baseline is....but I'm not able spend £1000s doing so. I've not had a career to speak of so struggled financially. It's never being able to plan to do things and missing out on family occasions that they plan and say "oh you can't do London in a day"...so i say "No id need to stay a few days"...they arrange that but don't let you know. You'd think that they'd remember you're disabled after all these decades...but no....I've missed 40ths and Hen Do's etc...you're expected to fit in...or be ok with missing out. It's so hurtful
@@LynnCalderaro Yes..I get it...They also pile on the religious guilt too. Tell you that God wants you to go to meetings/church several times a week...as if you've been unfaithful and fallen away.....I say " I think that what He wants is for me to be Well and Happy". We are allowed to be happy...
My son and I have chronic fatigue at the same time…activated by mold and heavy exposure to EMF. Worst part is his school turning against us and treating us like criminals …pressing charges because he is unable to attend school. Hes only 14 and that is a ton of stress. I won’t let them win and bully him into crashing. We are fighting legally but to be sick and have to deal with all of this is ridiculous.
Unfortunately many states have criminal charges available for truancy. Usually it’s related to incompetence on the parents part floor not getting the kids to school. However, my son was a great student with no prior disciplinary issues and great grades. These charges should not be added onto already unreal stress levels associated with this condition. Many states have these charges for truancy.
Hi toby I live in England I've had cfs since I was ten years old also restless leg syndrome ,I'm now 73 years old my life as been such a struggle ie cfs and trying to learn at school,working, trying my best to be a good father,husband it took the doctors until I was45 years old before I was diagnosed because nobody believed in cfs I was born in 1951 I've struggled so hard all my life just to feel normal nothing ever changed I still have every single symptom of cfs I hope you help as many people as you can with this ilness I've had cfs now for 64 years I still try to keep a smile on my face and have a very understanding partner,I will try to take the advice you give I wont give up God bless all cfs sufferers. Mr ken Bain. 😢😢
And furthermore, the doctors tell you exactly how long it takes for your bones to heal. For me, not knowing if this was going to last forever or not (it seemingly was) was absolutely the hardest part. The anxiety of it kept me in fight or flight and only exacerbated my symptoms
This 100%! Being told that 'this is how it is, you're not going to get better, just accept it' and then no support to follow up that massively devastating blow.... to this day i don't know how the health service are allowed to get away with that- its so mentally and emotionally damaging. honestly it made me suicidal and also was so destructive as I pushed so hard to prove them wrong and ultimately caused my health to deteriorate even more. So glad I eventually found this channel and am now gently working to turn things around. 🫶
Thank you for this video Toby. Yep, it hit home when you mentioned wanting your old life back! I have ridden and owned horses all my life, but when I lost my last horse 2 years ago, I decided it was best not to have another because of my health. I miss it so much. So after watching your video, I feel that I need to work on grieving the life I had in order to focus on my future and get better fully. This may be the missing part of the puzzle. Thanks again for all your free content and for caring 🙏 So grateful.
I am so very pleased I found your RUclips channel, it is the best I have found that has helped, you have been able to describe what I have been going through throughout this long illness. I have overcome a lot of the things you talked about today, but nevertheless, I remember how they affected me at the time and can look back and see how far I have come and how I did it, for instance removing guilt from my life of the things I can no longer achieve. I very much appreciate your time and effort and wish you well, and all the people who suffer from this disease. Thank you Toby.
As ever, Toby, you nail it with great compassion and encouragement. It keeps us all going. The guilt work shop is a wonderful thing. I had to work through it for many years. God bless n many thanks
wow my mum said many years ago, if I had a pot on my leg everyone would understand but no one sees my arthritus and the pain i am in, but no one sees my grief i bear every day either, honestly life is hard at times and if we could only have a little more compassion, after my daughters passing i do try to give others my time, i am trying very hard.
I just finally figured out that I have ME, after 40+yrs. The only good thing about that is that I finally have an answer. What I don't understand is why has no Dr ever mentioned this?
My family has their own problems. They don’t want to hear mine. And if they should listen, they just say “you’re depressed” or “get some exercise to get your endorphins flowing”. Everyone’s lives are complicated for sure. I first sensed that something was wrong when I was about 5 years old. I’m getting old now and it’s getting worse.
All sounds familiar I kept pushing ended up in bed for 3 months ….. no one understand about CFS it’s not just tiredness 😢 AND there’s no way to tell them to understand
My brother insists all i need is regular naps and i will be ok and as for pain i have from cfs and fibromyalgia he says pain is all in the mind. How ignorant can some people be. They just dont understand or get it. I tried to explain. But no he just didn't want to understand it. It was a way to silence me too.
Hi Toby! I have got a question So my question is “if someone fully recovers in a year or two and feels kinda symptom free, does it mean, that the illness is gone and crashes won’t happen? Or it means that you still have to live a very disciplined life forever, cause otherwise you will trigger a new crash?”
I think that if you're Recovered... you're RECOVERED....that's how I understand it....but I ve been in the Reintegration stage for decades...so I only know that Alex Howard (Optimum Health Clinic ) etc is totally well and able to work 60 hours a week. You don't want to return to old unhealthy ways of living but your system won't be as sensitive.
I recovered toa bout 85% after about a year to year and a half, but then I tried to push myself and go back to working out and doing all the things. Combined with many emotional stressors I fell back again and now I am working on getting back to where I was. I think moving back to full recovery requires very very slow titration back to where you were previously. Just my experience.
I had one friend ask me, "Why dont you work full time?" Or ""Why dont you work part-time?" Or "You should have a BABY!" Like....wthell!!? She ended up ghosting me twice anyways and then i just blocked her. She kept asking me these things even AFTER I got my 100% Permanent & Totally Disabled status through Veterans Affairs and being diagnosed with CAEBV. 🙄
I am so grateful to hear from this video that I can now really believe that this is not all in my head or attitude. Which is why I have pushed myself with variety of activities and wondering why I crash for days on end trying hard not to give in to despair, and yes, I feel so guilty and isolated from family and friends because they simply do not understand what I am going through and why I cannot accept their invitations to join them. Thank you Sean. I will continue to follow your videos with a new hope of steady recovery. God bless you, Sean
After 40 years with ME, I got the “ do you think it’s a mental thing” This from a young well educated doctor
I find these videos somewhat emotional, my first time hearing someone talk about how Ihave felt . Thank you so much.
I have no friends... I finally saw one friend and I left her feeling guilty and..
I have no family support at all...
She said oh I thought you would have had a shift by now
This is just how I feel
Yep...me too.... thank you for saying you've had it 40 years. For me it's 46....I was 14....60 next month...I find I can't listen to people complaining about having their life ruined when they've only had it 10 years....
The intense pain I could cope with... it's having to dumb yourself down cos my brain won't work, leave jobs, even part time kills you....and see people who don't have the skills you have get promoted over you. Can't even do simple stuff so forget about potential. I'd have liked to go to Uni to do art but couldn't even contemplate 13 hours a week.
I'm ready to find out what this Baseline is....but I'm not able spend £1000s doing so. I've not had a career to speak of so struggled financially.
It's never being able to plan to do things and missing out on family occasions that they plan and say "oh you can't do London in a day"...so i say "No id need to stay a few days"...they arrange that but don't let you know. You'd think that they'd remember you're disabled after all these decades...but no....I've missed 40ths and Hen Do's etc...you're expected to fit in...or be ok with missing out. It's so hurtful
@@LynnCalderaro Yes..I get it...They also pile on the religious guilt too. Tell you that God wants you to go to meetings/church several times a week...as if you've been unfaithful and fallen away.....I say " I think that what He wants is for me to be Well and Happy". We are allowed to be happy...
Thank you for the compassionate, and understanding way you put these videos out there Toby, you're a star x
You are so welcome!
Hardest thing for me was getting the energy to go to the doctors. Rest for weeks to get enough energy to get there and collapse afterwards for weeks.
And you get there and they tell you that you look fine!
Same… then trying to coordinate the blood tests and the appointments that are dependent on each other. But worth it, and we’ll get through this!
How are you doing now?
My son and I have chronic fatigue at the same time…activated by mold and heavy exposure to EMF. Worst part is his school turning against us and treating us like criminals …pressing charges because he is unable to attend school. Hes only 14 and that is a ton of stress. I won’t let them win and bully him into crashing. We are fighting legally but to be sick and have to deal with all of this is ridiculous.
That is the most ridiculous experience ever! Shame on the school. How is that even legal?
Unfortunately many states have criminal charges available for truancy. Usually it’s related to incompetence on the parents part floor not getting the kids to school. However, my son was a great student with no prior disciplinary issues and great grades. These charges should not be added onto already unreal stress levels associated with this condition. Many states have these charges for truancy.
Wow, that's terrible!
Hi toby I live in England I've had cfs since I was ten years old also restless leg syndrome ,I'm now 73 years old my life as been such a struggle ie cfs and trying to learn at school,working, trying my best to be a good father,husband it took the doctors until I was45 years old before I was diagnosed because nobody believed in cfs I was born in 1951 I've struggled so hard all my life just to feel normal nothing ever changed I still have every single symptom of cfs I hope you help as many people as you can with this ilness I've had cfs now for 64 years I still try to keep a smile on my face and have a very understanding partner,I will try to take the advice you give I wont give up God bless all cfs sufferers. Mr ken Bain. 😢😢
And furthermore, the doctors tell you exactly how long it takes for your bones to heal. For me, not knowing if this was going to last forever or not (it seemingly was) was absolutely the hardest part. The anxiety of it kept me in fight or flight and only exacerbated my symptoms
This 100%! Being told that 'this is how it is, you're not going to get better, just accept it' and then no support to follow up that massively devastating blow.... to this day i don't know how the health service are allowed to get away with that- its so mentally and emotionally damaging. honestly it made me suicidal and also was so destructive as I pushed so hard to prove them wrong and ultimately caused my health to deteriorate even more. So glad I eventually found this channel and am now gently working to turn things around. 🫶
Thank you for this video Toby.
Yep, it hit home when you mentioned wanting your old life back! I have ridden and owned horses all my life, but when I lost my last horse 2 years ago, I decided it was best not to have another because of my health. I miss it so much.
So after watching your video, I feel that I need to work on grieving the life I had in order to focus on my future and get better fully. This may be the missing part of the puzzle.
Thanks again for all your free content and for caring 🙏 So grateful.
Glad you found it helpful 💙
You were fortunate to have horses, I'm jealous lol 😊 I love them too 💕 but unless I win the lottery and beat Long Covid I'll never get one ..
I am so very pleased I found your RUclips channel, it is the best I have found that has helped, you have been able to describe what I have been going through throughout this long illness. I have overcome a lot of the things you talked about today, but nevertheless, I remember how they affected me at the time and can look back and see how far I have come and how I did it, for instance removing guilt from my life of the things I can no longer achieve. I very much appreciate your time and effort and wish you well, and all the people who suffer from this disease. Thank you Toby.
You're so welcome!
I am 77 yrs old and in my 6th year with CFS. Lost my dearesr friend due to this. Thanks for the encouragement.
Sorry for your friend passed.
I'm so sorry. Please be kind and be the best friend possible to yourself.
Hugs. ❤️💕❤️
As ever, Toby, you nail it with great compassion and encouragement. It keeps us all going. The guilt work shop is a wonderful thing. I had to work through it for many years. God bless n many thanks
Thank you 🙏
Thank you , that felt incredibly validating. I needed that today. I appreciate everything you shared, it validates everything that I am experiencing.
Thank you ❤ this has helped me lots
Glad it helped!
wow my mum said many years ago, if I had a pot on my leg everyone would understand but no one sees my arthritus and the pain i am in, but no one sees my grief i bear every day either, honestly life is hard at times and if we could only have a little more compassion, after my daughters passing i do try to give others my time, i am trying very hard.
Thank you toby. X
I was diagnosed 13 years ago and am still at the "I don't know what to do stage" I'm intrigued to know what I can do to move forward...
Amen
Thank you so much, this is very encouraging.
You are so welcome
I just finally figured out that I have ME, after 40+yrs. The only good thing about that is that I finally have an answer. What I don't understand is why has no Dr ever mentioned this?
Namaste everyone ❤.
🙏🙏
My family has their own problems. They don’t want to hear mine. And if they should listen, they just say “you’re depressed” or “get some exercise to get your endorphins flowing”. Everyone’s lives are complicated for sure.
I first sensed that something was wrong when I was about 5 years old. I’m getting old now and it’s getting worse.
All sounds familiar I kept pushing ended up in bed for 3 months ….. no one understand about CFS it’s not just tiredness 😢 AND there’s no way to tell them to understand
My brother insists all i need is regular naps and i will be ok and as for pain i have from cfs and fibromyalgia he says pain is all in the mind. How ignorant can some people be. They just dont understand or get it. I tried to explain. But no he just didn't want to understand it. It was a way to silence me too.
@@sparrowbarnesmusic5864 fribro also and the pain is so real beyond a aching body …. Gentle hugs
Hi Toby!
I have got a question
So my question is “if someone fully recovers in a year or two and feels kinda symptom free, does it mean, that the illness is gone and crashes won’t happen? Or it means that you still have to live a very disciplined life forever, cause otherwise you will trigger a new crash?”
I think that if you're Recovered... you're RECOVERED....that's how I understand it....but I ve been in the Reintegration stage for decades...so I only know that Alex Howard (Optimum Health Clinic ) etc is totally well and able to work 60 hours a week. You don't want to return to old unhealthy ways of living but your system won't be as sensitive.
I recovered toa bout 85% after about a year to year and a half, but then I tried to push myself and go back to working out and doing all the things. Combined with many emotional stressors I fell back again and now I am working on getting back to where I was. I think moving back to full recovery requires very very slow titration back to where you were previously. Just my experience.
I had one friend ask me, "Why dont you work full time?" Or ""Why dont you work part-time?" Or "You should have a BABY!" Like....wthell!!? She ended up ghosting me twice anyways and then i just blocked her. She kept asking me these things even AFTER I got my 100% Permanent & Totally Disabled status through Veterans Affairs and being diagnosed with CAEBV. 🙄
Toby how do I join your group. How much is it please x
I said to Dr I was grieving after lost my whole family Dr said your depressed! Not all sicknesses are Visible
Thank you Toby 🥹
You're welcome!