That's so true, that if someone had to make up the worst type of suffering illness they could think of, they'd probably come up with ME/CFS... Sorry you had such an unhelpful experience with your psychotherapist / counsellor, hope you're managing to keep some hope through the bad times :)
Hi D. I too just wanted to tell you that we all share your pain about these issues. After many years of illness, I have learned the hard way as well to only use support or Professionals who know ME/CFS or are willing to catch on quick. Otherwise, I found it uses too much energy and adds insult to injury, including trauma. I hope you can find people who know the illness and support you in your rest and pacing and hope so that you can improve. That is what I will see for you. Thank you.
I like what you said about it being a 'suffering disease'! It *so* is, especially since it is invisible, you suffer from the symptoms physically, then you suffer another layer of suffering from other people not seeing that you are suffering and *expecting* too much. Constant pain and fatigue is already a burden on the mind...it is so irrational of people to assume people with c.f.s. are depressed. Like telling someone with a toothache they are just 'in a bad mood'!!! (No-one does that.)
I think Psychological help for this condition exists, but what we really need is physical help. It's only because physical help is non-existent that we try to get help in other ways I think. It's also a shame that other people make us feel ashamed for our illness, acting as if it is not an illness at all but that we can just talk ourselves into doing more. It happened to me today. I got asked to do a carer job for disabled children and I want to say, no that is too much *I* am disabled!.
What I find really funny :-D is that the psychologist thought you had a lack of motivation, but you were such a motivated-type that you dragged yourself to a Psychologist appointment fortnightly despite c.f.S/M.E. and all the constant pain and exhaustion, yet she can't *see* all the hurdles and pain you had to endure just to *get there*!!!!!!!! She wasn't good at what she did, she totally missed the point, you were there to get help for C.F.S. :-(
@hi771lrt I suppose this is just not something she encountered before, and to the untrained eye i may have looked like another teenager who wants lock himself in his room. It's unfortunate that psychological help for this very real physical disease is non existent.
lol! Thanks for sharing that funny psychologist story. So sorry that happened to you, you really needed to see someone who actually knew about it enough to actually be able to help! (I also have learnt the hard way that making yourself see friends when you are not well enough always is a bad experience! It's sad that we listen to others, when we know ourselves our physical limitations. Next time say, "No, I can't." A good pyschologist, who knows about c.f.s. would give you that advice! :-)
I've had CFS/ME for about 3 years now and I've done everything the doctors have told me to do, taking large amounts of meds, forcing myself to stay awake when my body cried out for sleep, and CBT. While I tried all if the above with a good heart and a belief that doctors know best, after years of trying it their way and my symptoms and crashes becoming more frequent,they made a bad situation worse. My advice is to listen to your own body and accept that no one knows the best way to treat ME/CFS
@LollypopLittleVoice im sorry to hear that, it seems like everyone with ME eventually realizes they have to pace themselves, but sometimes it comes only after mountains of bad advice from "experts"
Hi there, yes I can relate to every word of your rant ! I liked the line about.... "if some scientists got together and tried to create a really evil disease with invisible symptoms etc they couldn't have done any better than this !" You're not alone mate, keep strong ....... I know it's so easy to say that.
Damn, I forgot to say, I managed to stay out of bed during daytime for about two weeks. That was the most I could do. Afterwards I was so damaged that even the psychologist said that it was ok if I laid down during the day. But it was too late. It took me five months to recover at least a bit of energy. I really thought it was all over cause not even massive rests like staying at home for a month straight helped me. Felt irreparable.
Good advice! Every ME/CFS should avoid psychologists like hell. I was in a hospital for a few months. Cognitive behavioural therapy. The psychologists were like you say "good at what they do". The problem was, they don't take CFS seriously. In my case, they forced me to stay out of bed during daytime. I told them that was impossible. That I needed the rest. Well it was not impossible, I managed to do it, but I've been devastated since then. My health has deteriorated immensely.
Great job explaining ME/CFS is not a lack of motivation. Our lives have been stopped in their tracks and there is nothing we can do to overcome it. PEM is a hallmark symptom and it can be brutal. I've had severe PEM last for four weeks straight and it can be emotionally devistating.
That's so true, that if someone had to make up the worst type of suffering illness they could think of, they'd probably come up with ME/CFS... Sorry you had such an unhelpful experience with your psychotherapist / counsellor, hope you're managing to keep some hope through the bad times :)
GetWellFromME 4 months ago
Hi D. I too just wanted to tell you that we all share your pain about these issues. After many years of illness, I have learned the hard way as well to only use support or Professionals who know ME/CFS or are willing to catch on quick. Otherwise, I found it uses too much energy and adds insult to injury, including trauma. I hope you can find people who know the illness and support you in your rest and pacing and hope so that you can improve. That is what I will see for you. Thank you.
merae60 6 months ago
I like what you said about it being a 'suffering disease'! It *so* is, especially since it is invisible, you suffer from the symptoms physically, then you suffer another layer of suffering from other people not seeing that you are suffering and *expecting* too much. Constant pain and fatigue is already a burden on the mind...it is so irrational of people to assume people with c.f.s. are depressed. Like telling someone with a toothache they are just 'in a bad mood'!!! (No-one does that.)
hi771lrt 7 months ago
I think Psychological help for this condition exists, but what we really need is physical help. It's only because physical help is non-existent that we try to get help in other ways I think. It's also a shame that other people make us feel ashamed for our illness, acting as if it is not an illness at all but that we can just talk ourselves into doing more. It happened to me today. I got asked to do a carer job for disabled children and I want to say, no that is too much *I* am disabled!.
hi771lrt 7 months ago
What I find really funny :-D is that the psychologist thought you had a lack of motivation, but you were such a motivated-type that you dragged yourself to a Psychologist appointment fortnightly despite c.f.S/M.E. and all the constant pain and exhaustion, yet she can't *see* all the hurdles and pain you had to endure just to *get there*!!!!!!!! She wasn't good at what she did, she totally missed the point, you were there to get help for C.F.S. :-(
hi771lrt 7 months ago
@hi771lrt I suppose this is just not something she encountered before, and to the untrained eye i may have looked like another teenager who wants lock himself in his room. It's unfortunate that psychological help for this very real physical disease is non existent.
Dcebes 7 months ago
lol! Thanks for sharing that funny psychologist story. So sorry that happened to you, you really needed to see someone who actually knew about it enough to actually be able to help! (I also have learnt the hard way that making yourself see friends when you are not well enough always is a bad experience! It's sad that we listen to others, when we know ourselves our physical limitations. Next time say, "No, I can't." A good pyschologist, who knows about c.f.s. would give you that advice! :-)
hi771lrt 7 months ago
I've had CFS/ME for about 3 years now and I've done everything the doctors have told me to do, taking large amounts of meds, forcing myself to stay awake when my body cried out for sleep, and CBT. While I tried all if the above with a good heart and a belief that doctors know best, after years of trying it their way and my symptoms and crashes becoming more frequent,they made a bad situation worse. My advice is to listen to your own body and accept that no one knows the best way to treat ME/CFS
LollypopLittleVoice 9 months ago
@LollypopLittleVoice im sorry to hear that, it seems like everyone with ME eventually realizes they have to pace themselves, but sometimes it comes only after mountains of bad advice from "experts"
Dcebes 9 months ago
@Dcebes
Hi there, yes I can relate to every word of your rant ! I liked the line about.... "if some scientists got together and tried to create a really evil disease with invisible symptoms etc they couldn't have done any better than this !" You're not alone mate, keep strong ....... I know it's so easy to say that.
MultiYesindeed 8 months ago 2
@MultiYesindeed : D
Dcebes 8 months ago
Damn, I forgot to say, I managed to stay out of bed during daytime for about two weeks. That was the most I could do. Afterwards I was so damaged that even the psychologist said that it was ok if I laid down during the day. But it was too late. It took me five months to recover at least a bit of energy. I really thought it was all over cause not even massive rests like staying at home for a month straight helped me. Felt irreparable.
RyuBlade1980 9 months ago
Good advice! Every ME/CFS should avoid psychologists like hell. I was in a hospital for a few months. Cognitive behavioural therapy. The psychologists were like you say "good at what they do". The problem was, they don't take CFS seriously. In my case, they forced me to stay out of bed during daytime. I told them that was impossible. That I needed the rest. Well it was not impossible, I managed to do it, but I've been devastated since then. My health has deteriorated immensely.
RyuBlade1980 9 months ago
Great job explaining ME/CFS is not a lack of motivation. Our lives have been stopped in their tracks and there is nothing we can do to overcome it. PEM is a hallmark symptom and it can be brutal. I've had severe PEM last for four weeks straight and it can be emotionally devistating.
jimijamesh 9 months ago