Perspectives on ME/CFS: The caregivers

[loriengland]

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.

[katierobertsfnp]

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

[GodsChild]

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.

[clarysagemannoroth]

I love Shannon's parents. They're amazing ❤

[LookUpp-]

Thank you for sharing this. My mom helps me so much. We are so grateful for you caregivers. Thank you.

[mutzicat]

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 this daily hour became my 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 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 :)

[nickylodge]

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.

[sarahhenley]

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

[trishcovich]

I just want this beautiful family to know that hundreds of people including myself get fully well using neuro training. It's the old brain stuck in fight or flight. Every recovery story I have read or listened to is from brain traing. I was so against this for ten years. Gastroparesis nearly killed me. I saved my life. Feel free to message me. I would love to help her recover and give you all your life back. Much love, Trish ❤❤❤

[andyknights]

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

[dixonjazzy]

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. ❤

[mypuritanicalopinion]

Great little video to cheer sufferers of this thing.

[xokallista]

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!