Wonderfully caring and compassionate parents. All ME CFS patients deserve people like this in their lives but sadly they’re the exception not the rule.
Yep. I go it alone. Super hard year. Third bout in 33 years so I am one of the lucky ones. Luckily I made it this far so my kids can just dump me into nursing care if I cannot beat this.
Dear Shannon’s Mom and Dad, Every single syllable you spoke was completely true. You two are true American hero’s. Mahalo for sharing your experience. KT
Wonderful that Shannon has such wonderful parents who are with her.... I experienced a recent relapse of my diagnosed ME/CFS and was left tending to myself. I've never felt such loneliness or isolation in all my life, yes much like being a prison inmate - the loneliness they must feel. I too could not wash my hair for the first months due to arm fatigue. Luckily, I could just manage food prep as my bedroom was very close to the kitchen and I had a chair which I sat in while cooking. The rest of the day was spent in bed, except one hour when I would teach piano online from a rocking chair..... this daily hour became my therapy..... I began to love teaching like I'd never felt before.... I loved the kids, I didn't grieve at every mistake they would make, I enjoyed the lesson fully ! What. a great spiritual lesson after teaching 30 years, often much too much, often with impatience and getting stressed and exhausted. Great video, outlines the most important aspect of the illness. Glad there are 2 of you to deal with this. You do, however, seem to take the perspective that your daughter won't get better.... many and maybe most people with the illness do improve, some very significantly. I took 6 years for 'almost back to normal' level of heatlh, then was very well for another 6 years,.... then I overdid it emotionally and physically for about 18 months..... now a relapse - luckily not as bad as the first time 13 years ago. I do believe most people recover. Supplements can help many, as well as a new way of looking at life, if necessary. Thanks again :)
It is so helpful to see your comments, thank you. I am in almost the exact same position with my son, he needs full time care with ME/CFS and Lyme, 5 yrs now. I had to give up my job, and my whole life is based round him. He is wonderful and I don’t mind, but I see your suffering sadness for Shannon and I really struggle with that, it’s sapping my strength now, although I managed well for so long. I feel terrible for you people whose families don’t help them. I suppose our Sandy and Shannon are lucky to have this care. Keep strong and it sounds as though you’re doing a fantastic job.
I don't get the support I need. My family Doctor retired without letting me know and I have start all over again with a new one that is clueless! Compassion is so important and we patience fall through the cracks in the healthcare system. No body truely.understands the hell we go through. These people are rare to be this in tune to our problems. Thank you wonderful people. ❤
god bless you both such compassion and love what we all strive for but dont all have i also have sever ME but my family dont believe in ME so have abandoned me a greatly misunderstood illness all the best to you all
Me too! I am scared a lot of the time that I will die alone in pain unable to maintain my life. Hope you are doing well and getting the help you need. Best wishes to you and all that are impacted by ME/CFS, Fibromyalgia....
Just wonderful, I have been researching "define myalgic encephalomyelitis" for a while now, and I think this has helped. Ever heard of - Diyadelyn Ziyily Idea - (should be on google have a look )? It is an awesome one off guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the normal expense. Ive heard some incredible things about it and my friend got excellent results with it.
Wow, these seem like some symptoms of Long Covid or after Vaccine reactions. I had Moderna shot on August 17, 2021. It has devastated my life but simple things like driving, working going out to do basic things to sensitivity to seemingly normal things. I feel a lot more isolated now than before and I just don't know what to do to get better. I Pray that all that are suffering will find peace. God Bless!
No. Stress is a part of it. It could be mold, it could be lyme, it could be a reactivated herpes virus, a gut infection or a microbiome issue, heavy metal toxicity usually from mercury amalgam fillings. There could be a lot of reasons...
Wonderfully caring and compassionate parents. All ME CFS patients deserve people like this in their lives but sadly they’re the exception not the rule.
Ain’t that the sad truth.
Yep. I go it alone. Super hard year. Third bout in 33 years so I am one of the lucky ones. Luckily I made it this far so my kids can just dump me into nursing care if I cannot beat this.
@kathygreen6043ive had it 27 years from 17 pain my worst symptoms my father has it to though at 75 better than 40
Dear Shannon’s Mom and Dad,
Every single syllable you spoke was completely true.
You two are true American hero’s.
Mahalo for sharing your experience.
KT
This video 100% EXACTLY explains my life and my mom as my caretaker!!! It’s crazy, it’s like this is a story of my life.
Thank you for sharing this. My mom helps me so much. We are so grateful for you caregivers. Thank you.
Wonderful that Shannon has such wonderful parents who are with her.... I experienced a recent relapse of my diagnosed ME/CFS and was left tending to myself. I've never felt such loneliness or isolation in all my life, yes much like being a prison inmate - the loneliness they must feel. I too could not wash my hair for the first months due to arm fatigue. Luckily, I could just manage food prep as my bedroom was very close to the kitchen and I had a chair which I sat in while cooking. The rest of the day was spent in bed, except one hour when I would teach piano online from a rocking chair..... this daily hour became my therapy..... I began to love teaching like I'd never felt before.... I loved the kids, I didn't grieve at every mistake they would make, I enjoyed the lesson fully ! What. a great spiritual lesson after teaching 30 years, often much too much, often with impatience and getting stressed and exhausted. Great video, outlines the most important aspect of the illness. Glad there are 2 of you to deal with this. You do, however, seem to take the perspective that your daughter won't get better.... many and maybe most people with the illness do improve, some very significantly. I took 6 years for 'almost back to normal' level of heatlh, then was very well for another 6 years,.... then I overdid it emotionally and physically for about 18 months..... now a relapse - luckily not as bad as the first time 13 years ago. I do believe most people recover. Supplements can help many, as well as a new way of looking at life, if necessary. Thanks again :)
I had CFS now more fybro still fatigue or it's the same just changing over decades.related to hypomobility Asperger's ADHD OCD
I love Shannon's parents. They're amazing ❤
It is so helpful to see your comments, thank you. I am in almost the exact same position with my son, he needs full time care with ME/CFS and Lyme, 5 yrs now. I had to give up my job, and my whole life is based round him. He is wonderful and I don’t mind, but I see your suffering sadness for Shannon and I really struggle with that, it’s sapping my strength now, although I managed well for so long. I feel terrible for you people whose families don’t help them. I suppose our Sandy and Shannon are lucky to have this care. Keep strong and it sounds as though you’re doing a fantastic job.
I don't get the support I need. My family Doctor retired without letting me know and I have start all over again with a new one that is clueless! Compassion is so important and we patience fall through the cracks in the healthcare system. No body truely.understands the hell we go through. These people are rare to be this in tune to our problems. Thank you wonderful people. ❤
My mum won'tr even look up CFS. I'm so so happy that Shannon has both of you to love and support her. Xx
god bless you both such compassion and love what we all strive for but dont all have i also have sever ME but my family dont believe in ME so have abandoned me a greatly misunderstood illness all the best to you all
This is so sad to read. A similar situation happened to me
Me too! I am scared a lot of the time that I will die alone in pain unable to maintain my life. Hope you are doing well and getting the help you need. Best wishes to you and all that are impacted by ME/CFS, Fibromyalgia....
Thank you so very much for this!!!
Just wonderful, I have been researching "define myalgic encephalomyelitis" for a while now, and I think this has helped. Ever heard of - Diyadelyn Ziyily Idea - (should be on google have a look )?
It is an awesome one off guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the normal expense. Ive heard some incredible things about it and my friend got excellent results with it.
Wow, these seem like some symptoms of Long Covid or after Vaccine reactions. I had Moderna shot on August 17, 2021. It has devastated my life but simple things like driving, working going out to do basic things to sensitivity to seemingly normal things. I feel a lot more isolated now than before and I just don't know what to do to get better. I Pray that all that are suffering will find peace. God Bless!
Great little video to cheer sufferers of this thing.
I don’t know how this video would “cheer” someone up?
Thank you...💝🙏💝
❤
#millionsmissing
The cause is chronic stress
I disagree but I will say that stress definitely can make matters worse.
You are not a researcher for ME so shut up
No. Stress is a part of it. It could be mold, it could be lyme, it could be a reactivated herpes virus, a gut infection or a microbiome issue, heavy metal toxicity usually from mercury amalgam fillings. There could be a lot of reasons...