My daughter is bedbound and on her list are things like: read a page from a book, talk to me for 20 minutes, go to the toilet, have a shower, cut her hair, eat food other than low fodmap, look through the window, use her mobile phone or computer, listen to music, look at the sky...
I empathise with your daughter so much💖... yes, these are also my goals. And whatever the future brings: we will cross that bridge when we get there...and until then we will continue to believe that miracles happen when we least expect them🌈🧚♀️💫🦋💖
Heart-felt greetings and best wishes from another ME patient in Germany, sent from my bed. ;) I've had it for 20 years now. The things on my list are quite small, but I can still go outside somtimes - today I found a plant, no pot, in the middle of the sidewalk of my street. Totally lost. I took it home and will give it lots of love. I'm exhausted and can't even find the energy to cook for myself now (I'm so hungry..), but this was a good day.
Same here. I’m only 25 but I’ve had ME/CFS for about 3 years now. It’s frustrating and sad. I don’t go to doctors anymore really because they don’t help. What helps is knowing my limits.
Yep, unless you have some virus or other medical issue that needs attention doctors appointments just use up more of our very limited precious energy. And often are the cause of another crash😑
Please stay strong and keep your message going, Im in it for 28 years now but i have never had the words to describe, because of people like you the message is getting out there. Thank You
Well said Emma, I care for my 29 y/o son bed-bound 3 years now , We have so much hope with OMF, We donate ever chance is can. Thank you for speaking for us♥
I love this, I'm going to make my own list and keep it on my wall. I need a reminder of why I'm resting that doesn't just involve the negative ideas around you're resting because you don't want to end up a vegetable unable to speak fear just isn't a good motivator on its own, it's just plain scary. I'm already a "hope builder" donating to OMF, it's only a tiny bit each month but I reckon it's better than nothing. And then I give extra when I can for the special stuff like May momentum etc. Thanks for doing this video though. I hope I get some improvement in the future, even if it's temporary, it's just been all downhill for 5 of the last 6 years.
Hi, Emma. I too have ME/CFS, was diagnosed in 1991 and didn't know, until a year ago, that it was what was causing all my problems, as the focus had been on the connective tissue issue and the Postural Orthostatic Tachycardia Syndrome, which often come with it. Now I'm learning pacing and radical rest therapy, along with the nutritional and other things I taught myself, tending to this body for 57 years. I know what you're saying, the confusion, the loss, the isolation, having been bedridden on and off 11 years and just now getting the help I've needed so long. Bless you!
Thank you for sharing with us your experience with ME - I love the idea of your list. I've had ME since 2004 - diagnosed in 2009, it's a long time to let the days go by. I'm pretty much bedridden at the moment but I had little reprieve at time, where I could go outside and take short walks assisted by my dog. So far, I haven't found 1 doctor who were able to help. I have been to the most prestigious hospital and clinicians in the States. ME is the type of illness that makes you wish you had cancer, at least with cancer, you do your chemo and treatments and you get better - not so with ME.
Thank you for this video, im going to share this with my loved ones who dont understand what we are going thru. I have this horrible illness, 20 years now, of no answers and medical professionals, just as you described have nothing to offer, most don't believe cfs, fibro are real...yes still. I thank all those who donate to open medicine as it gives me hope to keep going.
My daughter is bedbound and on her list are things like: read a page from a book, talk to me for 20 minutes, go to the toilet, have a shower, cut her hair, eat food other than low fodmap, look through the window, use her mobile phone or computer, listen to music, look at the sky...
I empathise with your daughter so much💖... yes, these are also my goals. And whatever the future brings: we will cross that bridge when we get there...and until then we will continue to believe that miracles happen when we least expect them🌈🧚♀️💫🦋💖
@@Angel-rp4nu Yes! Believing for my miracle as well!
So sorry to hear she is that severe.
Heart-felt greetings and best wishes from another ME patient in Germany, sent from my bed. ;) I've had it for 20 years now. The things on my list are quite small, but I can still go outside somtimes - today I found a plant, no pot, in the middle of the sidewalk of my street. Totally lost. I took it home and will give it lots of love. I'm exhausted and can't even find the energy to cook for myself now (I'm so hungry..), but this was a good day.
❤🙏 This horrible disease robs us of so much life, we can’t help but learn to appreciate all life.
💖💖💖 One day, we will all be dancing all over the world together and celebrating 💖💖💖
Same here. I’m only 25 but I’ve had ME/CFS for about 3 years now. It’s frustrating and sad. I don’t go to doctors anymore really because they don’t help. What helps is knowing my limits.
I so agree. I stopped bothering with doctors. But there is more hope for us since long covid more research I hope leads to help for us
Yep, unless you have some virus or other medical issue that needs attention doctors appointments just use up more of our very limited precious energy. And often are the cause of another crash😑
Please stay strong and keep your message going, Im in it for 28 years now but i have never had the words to describe, because of people like you the message is getting out there. Thank You
Well said Emma, I care for my 29 y/o son bed-bound 3 years now , We have so much hope with OMF, We donate ever chance is can. Thank you for speaking for us♥
I love this, I'm going to make my own list and keep it on my wall. I need a reminder of why I'm resting that doesn't just involve the negative ideas around you're resting because you don't want to end up a vegetable unable to speak fear just isn't a good motivator on its own, it's just plain scary.
I'm already a "hope builder" donating to OMF, it's only a tiny bit each month but I reckon it's better than nothing. And then I give extra when I can for the special stuff like May momentum etc. Thanks for doing this video though. I hope I get some improvement in the future, even if it's temporary, it's just been all downhill for 5 of the last 6 years.
Hi, Emma. I too have ME/CFS, was diagnosed in 1991 and didn't know, until a year ago, that it was what was causing all my problems, as the focus had been on the connective tissue issue and the Postural Orthostatic Tachycardia Syndrome, which often come with it. Now I'm learning pacing and radical rest therapy, along with the nutritional and other things I taught myself, tending to this body for 57 years. I know what you're saying, the confusion, the loss, the isolation, having been bedridden on and off 11 years and just now getting the help I've needed so long. Bless you!
Well-said, my experience too. 20 years now and im 56 yo now. Maybe our freedom come soon! Peace from Seattle xx
Thank you for sharing with us your experience with ME - I love the idea of your list. I've had ME since 2004 - diagnosed in 2009, it's a long time to let the days go by. I'm pretty much bedridden at the moment but I had little reprieve at time, where I could go outside and take short walks assisted by my dog. So far, I haven't found 1 doctor who were able to help. I have been to the most prestigious hospital and clinicians in the States. ME is the type of illness that makes you wish you had cancer, at least with cancer, you do your chemo and treatments and you get better - not so with ME.
Thank you for this video, im going to share this with my loved ones who dont understand what we are going thru. I have this horrible illness, 20 years now, of no answers and medical professionals, just as you described have nothing to offer, most don't believe cfs, fibro are real...yes still. I thank all those who donate to open medicine as it gives me hope to keep going.
Me dancing in The Netherlands...who else is in..😊
Very well said. Best hopes for healing. Cheers.
I liked the reality of the comments by the woman with ME/CFS. My situation is almost the same.
Thank you and blessings.
People outside ME see videos like this and think "She seems OK".
I think "How long did she have to rest to recover from making it"
Exactly.
It feels like it is my list. Many things in common.
Thanks for this. In my 4th year now.
I did that too. Helpful
💖
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