Because the disease can change frequently, we often have to re-learn, re-adjust, re-grieve again and again.The unpredictability is difficult and infuriating for everyone. You’re so right about how we don’t want to let our family and friends down and we push to show up for dinner, to listen to others, to to attend the wedding. Another point is that significant others shouldn’t make decisions for the person with ME. Don’t decide what we can and can’t do. Don’t tell us we have to use assistive devices on days we feel we don’t need them. We know our conditions affect everyone around us. I think most of us are hyper-aware of the toll ME takes on our families. Get the help and support you need from groups and therapy or from folks like this guy here.
🥀..to hear you SAY Exactly how one feels is So reassuring & supportive,many thanks & hope you're ok❤Thank you Johnny for being our voice when we cant/dont have one.Sharing this🥀
Hey man, great channel! Your video popped up in my feed and I decided to subscribe. Nice to see a fellow fighter spreading the word! I’ve watched three of your videos so far. It was nice to see you getting through to my husband in a way that I couldn’t (even though I’ve said basically the exact same things…lol! He’s always believed me and has been super supportive; his eyes usually just glaze over when I try to explain the deets. You held his attention, and for that, I am grateful 😊. Been fighting this wretched illness for 24 years. Finally getting a bit of traction.
Right from the start of covid i knew there would be more people getting it. My trigger was CMV, but i had so many virus before that i think contributed to it. Covid, CMV, chicken pox and other virus are mild for children but can be devastating for adults. Thank you for doing these videos. 😘 Now, go lay down.
Finally!! 1st sentence @kidcity.Keep digging! Johnny is best layman vid. Kinda keep you from going crazy. "Good man,"..When u ready for heavy stuff.Look in ur backyard!(Find the common denominator! God Bless! 💞
Thank you so much,a great video for new or long‐term M.E. Sadly the longer you have ME.the more it becomes the normal you & you're excepted as you are,which is lovely❤but that is when your ME.becomes REALLY INVISIBLE.Youve lost all friendships as you cant even communicate & Family who are so close to you dont see it anymore,its just how you are😢will be sharing Thank you❤😊
Thank you so much for these videos. I have listened to a few and found them heartening. I'll send this short one to some family and friends. It has been so hard to explain and so tiring. Your thoughtful testimony articulates the living reality experienced by those with me/cfs.
Women are taken less seriously by the medical profession, too. Not only was the female body and drug interactions on the female body studied until VERY recently (and minimally, even now), we're accused of being hysterical.
Full Version here ➡th-cam.com/video/R6PiuPcjPX4/w-d-xo.html
40 years in is still difficult to understand and explain to people. Thanks John
Because the disease can change frequently, we often have to re-learn, re-adjust, re-grieve again and again.The unpredictability is difficult and infuriating for everyone.
You’re so right about how we don’t want to let our family and friends down and we push to show up for dinner, to listen to others, to to attend the wedding.
Another point is that significant others shouldn’t make decisions for the person with ME. Don’t decide what we can and can’t do. Don’t tell us we have to use assistive devices on days we feel we don’t need them.
We know our conditions affect everyone around us. I think most of us are hyper-aware of the toll ME takes on our families. Get the help and support you need from groups and therapy or from folks like this guy here.
🥀..to hear you SAY Exactly how one feels is So reassuring & supportive,many thanks & hope you're ok❤Thank you Johnny for being our voice when we cant/dont have one.Sharing this🥀
Hey man, great channel! Your video popped up in my feed and I decided to subscribe. Nice to see a fellow fighter spreading the word! I’ve watched three of your videos so far. It was nice to see you getting through to my husband in a way that I couldn’t (even though I’ve said basically the exact same things…lol! He’s always believed me and has been super supportive; his eyes usually just glaze over when I try to explain the deets. You held his attention, and for that, I am grateful 😊. Been fighting this wretched illness for 24 years. Finally getting a bit of traction.
Im very happy to hear that the video helped! It's so important to have our spouses understand this difficult illness. Thanks for watching.
Right from the start of covid i knew there would be more people getting it. My trigger was CMV, but i had so many virus before that i think contributed to it. Covid, CMV, chicken pox and other virus are mild for children but can be devastating for adults. Thank you for doing these videos. 😘 Now, go lay down.
I had chicken pox at 15. That did it for me
@@Anchor7 I'm sorry
May I ask what CMV stands for?
@@twelvesmylimit Cytomegalovirus
Finally!! 1st sentence @kidcity.Keep digging! Johnny is best layman vid. Kinda keep you from going crazy. "Good man,"..When u ready for heavy stuff.Look in ur backyard!(Find the common denominator! God Bless! 💞
Thank you so much,a great video for new or long‐term M.E. Sadly the longer you have ME.the more it becomes the normal you & you're excepted as you are,which is lovely❤but that is when your ME.becomes REALLY INVISIBLE.Youve lost all friendships as you cant even communicate & Family who are so close to you dont see it anymore,its just how you are😢will be sharing Thank you❤😊
Thank you so much for these videos. I have listened to a few and found them heartening. I'll send this short one to some family and friends.
It has been so hard to explain and so tiring. Your thoughtful testimony articulates the living reality experienced by those with me/cfs.
I wish I had family that wanted to understand :’)
Women are taken less seriously by the medical profession, too. Not only was the female body and drug interactions on the female body studied until VERY recently (and minimally, even now), we're accused of being hysterical.
❤️❤️❤️ Thank you for making this video.
You are welcome!
Thank you. ❤🫂
I can't hear you even with the sound turned all the way up. I had to bail on this video.
Weird. Sounds perfect for me
👍
❤
🤙🏼
Sound very low.
Sound please tkyu
Sounds fine on my end