Thank you so much for your videos- I have CFIDS/ME and have ben so frustrated and have lost, sadly, nearly all my old friends because for "not feeling well" so often and having to cancel out at the last minute. Just hearing about someone else-you-who has the same thing means so much! Thanks
this is wonderful too. Really,even if no one else reads these [but us m.e. people] you have done a great service. It is so reassuring to watch them,makes you feel less alone. I love the "miracle cure"point,sometimes that is the most depressing thing...so many new ideas,and yes,usually they either a.]dont work [and are just more dissapointments or worse b.]punishing. so many great points,positive but real too. thanks. I really appreciated watching them all.
Giles, thank you for covering this aspect of having a chronic illness - having friends and getting support from friends - so very well. I appreciate having someone put into words in a respectful, kind, and yet direct way, pretty much everything I would have also said about this same issue. I will be sharing this with a number of friends and family. I hope it helps them see CFS and me in a better way. You haven't done a video for many years. How are you? Have you fully recovered now? I hope you are doing well, regardless of where your health is at. Thanks again.
Hi, thank you - no, we all get bizarre symptoms! I haven't done anything about work issues or benefits or anything... I think the ME Association can probably give some good support and advice on that? But it's important not to try to do too much (even part time) until you really are well enough. Rest is the most important thing, especially when you're first ill, or having a relapse. And then use that rest to try & gradually get better as you can... Hope that helps!
Thank you, and glad to hear you're still managing to be positive! I hope the improvements get more, and the setbacks get less for you. Re the fashion sense, I'm glad someone appreciates it lol!!!! :p I'll tell my stylist ;)
@pookiebear364 Thank you, really glad to hear it's helped just sharing my experiences too :) It can be such a lonely illness but hang in there, wishing you all the best :)
@ChibiYotsuba That sounds like a really difficult situation, I'm very sorry to say that perhaps for the sake of your longer term health you may need to rest more than your current work is allowing you to. The pill can affect hormones in such a way to exacerbate ME and make it worse.
@GetWellFromME I realised I had to take my anticonception pill which is upstairs, so I just took very long getting upstairs. Took like 5 breaks on 1 stair of 14 steps... At the moment, physically, I feel a bit better and can go to work again (5 hours a day), but I don't hope my work will keep taking this much from me. It's absolutely terrible to have to call in sick every time. If I do keep getting this tired, I'll have to talk to my jobcoach about it. It's just an assistant job..
@jessical1969 Thank you, I really only started doing them to start putting my own thoughts and ideas about ME together, so if anyone else feels helped through any of it, then that's great! I so wish that there were a "miracle cure", but I do know lots of people who have recovered a lot. :)
@ChibiYotsuba Oh that's really tough, sorry to hear that. Any point trying to claim for unfair dismissal because of sickness? Trouble is, the way ME is usually treated in this country, that wouldn't be easy, and would take a lot of energy itself. Look after yourself.
Hey there I was just need some advice. There are 6 members in my family including myself and my mum is suffering from ME. She isn’t getting any better and I don’t know how to help her. This video would be helpful for a friend, but is it the same idea for supporting a family member? Or do I need to do more things for her? Do I need to do the washing, cleaning and other simple jobs so she doesn’t have to worry? My dad works so he doesn’t really have time to help out and I am the oldest of my siblings but I am doing my GCSEs at the moment and it is difficult for me to do everything. All I need to know is that if I do all these things for my mum, will she recover? Keep up the great videos and I hope you have a chance to see my message thanks!
Hi, thanks for doing these videos. I have found them really helpful, even just for validation so I don't feel like i'm the only one and that I'm losing the plot when I get all the bizarre symptoms! I have recently been trying to get back to work but have become unwell again and been signed off by the GP for 8 weeks. Do any of your videos discuss work issues? sorry my brain isnt working at the mo and have looked but couldnt see one. Thanks again
@fatassassin123 Yes I am going to look into that too - but I've heard the testing isn't very accurate, and the treatment (antibiotics etc etc) is slow as well too?? But you're doing better now? Where would you say the best advice about checking out Lyme is please?
Have had cfs for twentie years, im from sweden and in sweden the goverment dont beelive there is any ilness like cfs me. so there a big strugel for new patients, doctors have invesigate me for two tames and they hade the same results bouth. I still dont have the illness , what the gov. consern.. any way. I m manything living whith my illness by my self. Tanks!
Your last upload was 5 years ago, and your last facebook update was over a year ago - do you have a different channel now? BTW www.getwellfromme.com says NO ACCESS.
Thank you for your video. It is very useful and informative. I wonder if i may ask you a question. One of my best friends has had ME for three years and stopped seeing people for the last two. We stay in touch and try many ways of seeing him but he just wont do it. He pretty much sees no one except his parents who he lives with. They are worried as they think it is getting worse as he now cant watch the football on telly with his dad and even doesn't let the cats in his room. Is this a common level of social anxiety for an ME sufferer or is this extreme? What can we possibly do to help, surely completely isolating yourself for so long cant be helping. Any advice you could offer will be most welcome. cheers
I can understand that. It is the sickness behavior that prevents him from socializing. Not feeling well, obviously causes e low mood of those activities.
Most sufferers of CFS have varying levels of anxiety disorder. Some are very bad. At my worst, I was paralyzed with anxiety for about a 2 year period, at times I could barely move physically because of the severity of the anxiety. But at present, though still chronically ill, my anxiety is much improved and minimal. "Gut and Psychology Syndrome" by Dr Natasha Campbell McBride helped me a lot in recovering from anxiety.
Thank you so much for your videos- I have CFIDS/ME and have ben so frustrated and have lost, sadly, nearly all my old friends because for "not feeling well" so often and having to cancel out at the last minute. Just hearing about someone else-you-who has the same thing means so much!
Thanks
There's one dislike on this,how?? Absolutely NOT,brill as always!! ;)
this is wonderful too. Really,even if no one else reads these [but us m.e. people] you have done a great service. It is so reassuring to watch them,makes you feel less alone. I love the "miracle cure"point,sometimes that is the most depressing thing...so many new ideas,and yes,usually they either a.]dont work [and are just more dissapointments or worse b.]punishing. so many great points,positive but real too. thanks. I really appreciated watching them all.
Giles, thank you for covering this aspect of having a chronic illness - having friends and getting support from friends - so very well. I appreciate having someone put into words in a respectful, kind, and yet direct way, pretty much everything I would have also said about this same issue. I will be sharing this with a number of friends and family. I hope it helps them see CFS and me in a better way. You haven't done a video for many years. How are you? Have you fully recovered now? I hope you are doing well, regardless of where your health is at. Thanks again.
Well done, Giles. Thanks for what you are doing for all ME/CFS sufferers.
Thank you all!
Hi, thank you - no, we all get bizarre symptoms! I haven't done anything about work issues or benefits or anything... I think the ME Association can probably give some good support and advice on that? But it's important not to try to do too much (even part time) until you really are well enough. Rest is the most important thing, especially when you're first ill, or having a relapse. And then use that rest to try & gradually get better as you can... Hope that helps!
@ChibiYotsuba So sorry to hear you're so ill - I hope you have managed to get a good sleep somehow, somewhere :)
Thank you, and glad to hear you're still managing to be positive! I hope the improvements get more, and the setbacks get less for you. Re the fashion sense, I'm glad someone appreciates it lol!!!! :p I'll tell my stylist ;)
@pookiebear364 Thank you, really glad to hear it's helped just sharing my experiences too :) It can be such a lonely illness but hang in there, wishing you all the best :)
@ChibiYotsuba That sounds like a really difficult situation, I'm very sorry to say that perhaps for the sake of your longer term health you may need to rest more than your current work is allowing you to. The pill can affect hormones in such a way to exacerbate ME and make it worse.
New subscriber. Great video. Thanks for posting this!
@GetWellFromME I realised I had to take my anticonception pill which is upstairs, so I just took very long getting upstairs. Took like 5 breaks on 1 stair of 14 steps...
At the moment, physically, I feel a bit better and can go to work again (5 hours a day), but I don't hope my work will keep taking this much from me. It's absolutely terrible to have to call in sick every time. If I do keep getting this tired, I'll have to talk to my jobcoach about it.
It's just an assistant job..
@jessical1969 Thank you, I really only started doing them to start putting my own thoughts and ideas about ME together, so if anyone else feels helped through any of it, then that's great! I so wish that there were a "miracle cure", but I do know lots of people who have recovered a lot. :)
So sorry to hear :( I'll reply on your other comment...
@ChibiYotsuba Oh that's really tough, sorry to hear that. Any point trying to claim for unfair dismissal because of sickness? Trouble is, the way ME is usually treated in this country, that wouldn't be easy, and would take a lot of energy itself. Look after yourself.
Hey there I was just need some advice. There are 6 members in my family including myself and my mum is suffering from ME. She isn’t getting any better and I don’t know how to help her. This video would be helpful for a friend, but is it the same idea for supporting a family member? Or do I need to do more things for her? Do I need to do the washing, cleaning and other simple jobs so she doesn’t have to worry? My dad works so he doesn’t really have time to help out and I am the oldest of my siblings but I am doing my GCSEs at the moment and it is difficult for me to do everything. All I need to know is that if I do all these things for my mum, will she recover? Keep up the great videos and I hope you have a chance to see my message thanks!
Hi, thanks for doing these videos. I have found them really helpful, even just for validation so I don't feel like i'm the only one and that I'm losing the plot when I get all the bizarre symptoms! I have recently been trying to get back to work but have become unwell again and been signed off by the GP for 8 weeks. Do any of your videos discuss work issues? sorry my brain isnt working at the mo and have looked but couldnt see one. Thanks again
Elimxox--we have this in our family too. Hugs and prayers. There are facebook support groups -have you been able to try one? Take care!
@ChibiYotsuba Well no need to talk to my jobcoach about it... I got fired due to lack of work for me recently. Time to find another job somehow...
@fatassassin123 Yes I am going to look into that too - but I've heard the testing isn't very accurate, and the treatment (antibiotics etc etc) is slow as well too?? But you're doing better now? Where would you say the best advice about checking out Lyme is please?
i've had me since i was 10, im 14 now... so hard.. i've lost all my friends..maybe one day i'll be better :)
❤❤❤
Have had cfs for twentie years, im from sweden and in sweden the goverment dont beelive there is any ilness like cfs me.
so there a big strugel for new patients, doctors have invesigate me for two tames and they hade the same results bouth. I still dont have the illness , what the gov. consern..
any way. I m manything living whith my illness by my self. Tanks!
At the moment I'm laying on the couch wondering how to get to bed, 'cause I'm too tired to walk the stairs. Maybe I should sleep on the couch...? :'(
Your last upload was 5 years ago, and your last facebook update was over a year ago - do you have a different channel now? BTW www.getwellfromme.com says NO ACCESS.
Thank you for your video. It is very useful and informative. I wonder if i may ask you a question. One of my best friends has had ME for three years and stopped seeing people for the last two. We stay in touch and try many ways of seeing him but he just wont do it. He pretty much sees no one except his parents who he lives with. They are worried as they think it is getting worse as he now cant watch the football on telly with his dad and even doesn't let the cats in his room. Is this a common level of social anxiety for an ME sufferer or is this extreme? What can we possibly do to help, surely completely isolating yourself for so long cant be helping. Any advice you could offer will be most welcome. cheers
I can understand that. It is the sickness behavior that prevents him from socializing. Not feeling well, obviously causes e low mood of those activities.
Most sufferers of CFS have varying levels of anxiety disorder. Some are very bad. At my worst, I was paralyzed with anxiety for about a 2 year period, at times I could barely move physically because of the severity of the anxiety. But at present, though still chronically ill, my anxiety is much improved and minimal. "Gut and Psychology Syndrome" by Dr Natasha Campbell McBride helped me a lot in recovering from anxiety.
keep going don't give up lol