Chronic Fatigue Syndrome 2

some ranting. if you have me/cfs or something like it, id love to hear from you. : D

Category:

People & Blogs

Tags:

• Chronic
• Fatigue
• Syndrome
• ME/CFS
• CFS/ME
• blog

[hi771lrt]

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. :-(

[Dcebes]

@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.

[LollypopLittleVoice]

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

[Dcebes]

@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"

[MultiYesindeed]

@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.

[Dcebes]

@MultiYesindeed : D

[GetWellFromME]

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 :)

[merae60]

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.

[hi771lrt]

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]

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]

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! :-)