I see this in my little sister. She's much younger than me, and has a huge set of symptoms that are very ME-like, though don't fit the definition exactly. I want to help her not make the mistakes that I did, but I'm not sure how. She is worried about it , but is also young and wants to live a normal life, and I'm not sure I can blame her for it. I don't know if I would have listened to anybody either, and I certainly probably wouldn't have made any major changes to my life plans based on what they said. It's hard to watch her, though, and to know what may be coming for her if she doesn't take more precautions...
Estimate of % of patients who achieve long remission?
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SOC
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@ justy, Sparrow
Thanks for letting me share your stories. My daughter can look at me and see where she could be, of course, but somehow that's not the same.
I'm fortunate in that she has had her pretty bad crash, so she's scared of being there again. I think she just wanted to be a normal kid for once. She's had ME/CFS for 8+ years, so the opportunity to be "normal" has gone to her head a bit. And the bf, as supportive as he is about her health, doesn't quite have a grip on how delicate the line is between being fully functional and being completely crashed.
One thing I want to point out to them is the pattern you've mentioned -- that crashes get worse and it gets harder to get back into remission. She really does not need to blow it in her senior year in college when she has her whole life in front of her.
My feeling at this point is that she has a good chance of staying fully functional long-term as long as she takes care of her health properly. My hope is that there will be substantially better treatments in 5-10 years, so if she holds on until then it may be plain sailing from then on.
Thanks for letting me share your stories. My daughter can look at me and see where she could be, of course, but somehow that's not the same.
I'm fortunate in that she has had her pretty bad crash, so she's scared of being there again. I think she just wanted to be a normal kid for once. She's had ME/CFS for 8+ years, so the opportunity to be "normal" has gone to her head a bit.
And the bf, as supportive as he is about her health, doesn't quite have a grip on how delicate the line is between being fully functional and being completely crashed.One thing I want to point out to them is the pattern you've mentioned -- that crashes get worse and it gets harder to get back into remission. She really does not need to blow it in her senior year in college when she has her whole life in front of her.
My feeling at this point is that she has a good chance of staying fully functional long-term as long as she takes care of her health properly. My hope is that there will be substantially better treatments in 5-10 years, so if she holds on until then it may be plain sailing from then on.
SOC
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Any hope you can get her to at least be checked by a reputable ME/CFS doc? A diagnosis might be just enough to shake her up...?
I was lucky my daughter was young enough when she first got ill that I could force medical care on her.
heapsreal
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SOC one good thing is that your daughter knows how she went into remission, so if she crashes again she knows there is a treatment for her??
SOC
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That's what I'm trying to help her understand. For example, she can have a lovely trip to Italy and walk all over Rome if she wants to, but it would be smart to break up the walks with regular stops to sit and take in the view. OTOH, a trip to Africa, where there are a number of endemic viruses she shouldn't be vaccinated for, is not a good idea.
SOC
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Assuming she could get Valcyte again. Dr Lerner is no spring chicken, you know.
Also, I'm not sure the treatment will continue to be as effective. Each crash seems to make things worse.
Hi SOC - your daughter is very lucky to have you thinking about her welfare and helping her. Not everyone is as lucky.
I agree that you need to impress upon her the need to pace still - but with a much higher threshold. For example not to take on too many stressful experiences at once and to nver ever push while in the middle of a viral illness like the flu. Make sure you generally get enough sleep, look after your diet - junk food ok, but not every day, and to stay clear of as many chemicals, toxins as possible. So drinking alcohol is ok at a party or on holiday, but drinking 4 times a week is probably not. This way it is possible to have an almost normal life. She may have to accept that she wont be a high roller in the city with 6 kids, 3 homes and a pencjant for working out 2 hours a day. This kind of life is not appropriate for us and i think would lead to a relapse in most eventually (who have had M.E before)
I seem to be currently experiencing another upswing in my health and can see a remission of sorts around the corner (or to be more accurate a couple of years down the road) but i dont know if i will regain my functioning to 85% again, stick at a lower figure or how long it will last for. I don't even know why i am getting better. At 43 i have to accpet that many things i always though i would do one day (when i was fit enough/well enough/not on antibiotics etc) are just not going to be possible. I am never going to swim the channel or swim for my local team, i am never going to walk the pilgrims trail to spain. I have wasted too many years of my life getting down and misearble about all this and fighting against it.
But my situation was much like Sparrow's - i wasn't diagnosed for 17 years so a lot of time was wasted on pushing to get fitter etc - especially during my long remission. Your daughter at least knows what she has - and has received treatment that worked. I agree that a treatment should be coming and your daughter needs to hold on for that.
I wish her well, and hope she fulfills her ambitions, and stays healthy.
Justy x
I agree that you need to impress upon her the need to pace still - but with a much higher threshold. For example not to take on too many stressful experiences at once and to nver ever push while in the middle of a viral illness like the flu. Make sure you generally get enough sleep, look after your diet - junk food ok, but not every day, and to stay clear of as many chemicals, toxins as possible. So drinking alcohol is ok at a party or on holiday, but drinking 4 times a week is probably not. This way it is possible to have an almost normal life. She may have to accept that she wont be a high roller in the city with 6 kids, 3 homes and a pencjant for working out 2 hours a day. This kind of life is not appropriate for us and i think would lead to a relapse in most eventually (who have had M.E before)
I seem to be currently experiencing another upswing in my health and can see a remission of sorts around the corner (or to be more accurate a couple of years down the road) but i dont know if i will regain my functioning to 85% again, stick at a lower figure or how long it will last for. I don't even know why i am getting better. At 43 i have to accpet that many things i always though i would do one day (when i was fit enough/well enough/not on antibiotics etc) are just not going to be possible. I am never going to swim the channel or swim for my local team, i am never going to walk the pilgrims trail to spain. I have wasted too many years of my life getting down and misearble about all this and fighting against it.
But my situation was much like Sparrow's - i wasn't diagnosed for 17 years so a lot of time was wasted on pushing to get fitter etc - especially during my long remission. Your daughter at least knows what she has - and has received treatment that worked. I agree that a treatment should be coming and your daughter needs to hold on for that.
I wish her well, and hope she fulfills her ambitions, and stays healthy.
Justy x
