Home » Discussion Forums » Blog Post Discussion » Bell ringing with ME
| Bell ringing with ME [message #39541] |
Sat, 19 February 2011 18:34  |
|
|
Bell ringing with ME
[Updated on: Sat, 19 February 2011 18:35]
Smooshes!
|
|
| |
| Re: Bell ringing with ME [message #39543 is a reply to message #39542 ] |
Sat, 19 February 2011 19:17  |
 mgw1979
Messages: 60
Registered: May 2010 |
Member |
|
|
ME sucks!
For me, the worst part (or, at least, one of the worst parts) is how badly I pay for pushing myself. I'm flat out today (and probably for the next few days) because I had a major deadline at work and then was staying up late to help my son with a bunch of important major deadlines. And, sadly, I had no control over either set of deadlines, and will have to push myself more next weekend to go to the frelling conference the work deadline was for.
As for CBT, I think it's great for the things it's good for (depression and anxiety) for many people, but it isn't right for everyone and it isn't a panacea.
OTOH, GET sounds like a recipe for disaster for most of us w/ME. There's no way you could get me to do it. Yes, I need to move around more (at least, once we crawl out from under the blankets of snow), but I also *need* to pay the exorbitant rates to park at work because there are too many days that I can either walk 3/4 miles from the subway stop to the office or work, but not both, and some days where I can't do the walk no matter what. Believe me, I'd love to save a few thousand dollars and take public transit if I could!
|
|
| |
| Re: Bell ringing with ME [message #39548 is a reply to message #39541 ] |
Sat, 19 February 2011 22:08 |
 |
HeiQ
Messages: 78
Registered: February 2011
Location: Canada |
Member |
|
|
| Robin said on Saturday, February 19 2011 |
But I wanted to add that I really, really did not mean to be getting at HeiQ and I hope she didn’t think I was.
|
Nope, I definitely did not feel like you were getting at me... It just felt a little bit like the other people commenting on your post were, which is why I felt the need to get a bit defensive, and here I go again, haha... Actually, I felt relieved and a wee bit starstruck when I realized that you were talking about my email, especially since I felt incredibly embarrassed about it minutes after I sent it. And, after all, I did call you crusty, so you have a right to say whatever you want. 
|
|
| |
| Re: Bell ringing with ME [message #39551 is a reply to message #39544 ] |
Sat, 19 February 2011 23:34 |
ravenandrose
Messages: 43
Registered: May 2010
Location: Oregon |
Member |
|
|
| Kuro wrote on Sat, 19 February 2011 19:39 |
You would think doctors would realize people with ME know their own bodies best and wouldn't force things like GET on them.
|
Yes, you would think so. Or, if you've been around a few of the wrong kind of doctors, at least wildly hope. My experience with both trying to get help for my son with asthma and my own experience trying desperately to find out what was wrong with me (and being told it was in my head, or "you're just tired from chasing a toddler", or 'simple' insomnia "lets give you a sleeping pill") has been that too many doctors do not listen to you, do not believe you know what you're talking about in any circumstance.  Then there are the few good ones who are such a breath of fresh air. They know what they are talking about AND they listen to you.
It was four years of increasing misery before I was able to afford to visit a naturopath(you know, holistic care being a frivolous extra Not paid for by most insurances) and really find out what was going on with my poor body and begin the long, slow climb to semi-health.
On being told to just get up and get moving--there were many, many days when that just was Not possible. I hated being judged as lazy by family members and the shame that went with that. It took me a couple years to come to mostly peace with the amount of "rest" that I need.
Ok, done ranting...
Robin, thank you for taking the energy to write this blog, I so love reading it. I hope you feel better soon!
|
|
|
| Re: Bell ringing with ME [message #39553 is a reply to message #39551 ] |
Sun, 20 February 2011 00:25 |
mgw1979
Messages: 60
Registered: May 2010 |
Member |
|
|
| ravenandrose wrote on Sat, 19 February 2011 23:34 |
| Kuro wrote on Sat, 19 February 2011 19:39 |
You would think doctors would realize people with ME know their own bodies best and wouldn't force things like GET on them.
|
Yes, you would think so. Or, if you've been around a few of the wrong kind of doctors, at least wildly hope. My experience with both trying to get help for my son with asthma and my own experience trying desperately to find out what was wrong with me (and being told it was in my head...
|
Absolutely! It was clear that I was being viewed as a neurotic middle-aged peri-menopausal woman - and while I might be those things, I also have ME/fibromyalgia. Took several doctors to find one who was helpful. Same with pediatricians and my son, who's had subtle hard-to-diagnose symptoms.
It's not just people w/ME, either. When my son was an infant, I was part of a "mommy and me" group and every woman there had had the experience of not being believed either during labor or childbirth (in my case, by the anesthesiologist from hell).
Robin - I'm in awe of you for being able to do all you do while dealing with ME. I'm exhausted just from reading your blog!
|
|
|
| Re: Bell ringing with ME [message #39555 is a reply to message #39541 ] |
Sun, 20 February 2011 01:07 |
UP4D
Messages: 11
Registered: May 2010
Location: Oregon |
Junior Member |
|
|
Robin--Thank you for the best laugh I've had all week. "One of the (many) things that makes me testy is the New Age la-la aphorism that illness is good because it teaches you stuff. Yes. It teaches you that life can be crappy. I don’t think any of us needs chronic illness too to learn that." I have fibromyalgia, and, though I've learned from it, and there are people starving to death in Africa and I should be grateful I'm not, I am ANGRY about having FM and see no reason why I shouldn't be. And since the doctors mostly have no idea what to do about FM (and many of them just think I'm whiny), I will decide what is good for me. Right now I need to read in the bathtub.
Hope you feel better soon.
In the fabric of space and in the nature of matter, as in a great work of art, there is, written small, the artist's signature. Carl Sagan
|
|
|
| Re: Bell ringing with ME [message #39556 is a reply to message #39541 ] |
Sun, 20 February 2011 01:57 |
 |
Diane in MN
Messages: 2731
Registered: October 2008
Location: Twin Cities, MN, USA |
Senior Member |
|
|
I heard a piece about that ME study on some public radio program last night, and thought of you, and a friend with very severe fibromyalgia, and the difficulties she and you and many others on the forum have had in getting even a diagnosis of an actual physical illness, let alone effective treatment. And as reported, the subtext of this study seemed to be "Regardless of why you feel this way, you could improve if you really wanted to and just kept trying." If this is true, it's insulting as well as extremely unhelpful.
One of the (many) things that makes me testy is the New Age la-la aphorism that illness is good because it teaches you stuff.
"Everything is for the best in the best of all possible worlds." Yeah, right.
I haven’t told you I have three service rings tomorrow. But only one of them is a quarter peal.
Good luck with them all, and especially the quarter. Be nice if all those bells could exorcise the ME!
"The point of books is to have way too many but to always feel you never have enough . . . " Louise Erdrich
|
|
|
| Re: Bell ringing with ME [message #39570 is a reply to message #39541 ] |
Sun, 20 February 2011 22:07 |
Catlady
Messages: 230
Registered: December 2008
Location: Aurora, Colorado |
Senior Member |
|
|
I just had to chime in and thank you for this particular post -- I have Chronic Daily Headaches (in my case, it's really Chronic Daily Headache, no "s," since it's been about five years since I last had a moment without pain and so it's actually just one really long headache), which I've now had for so long (almost a third of my life) that I don't even notice them when they're not too bad, which then leads to the madness of, "I haven't thought about it for several hours -- have I just been making it up this whole time?" and on the other hand, they're getting more painful for longer... And of course it's always worse if there's something I'm worried about, or looking forward to, or...
Not that I would wish chronic illness on anyone in the world. But it's nice to know there are others out there.
|
|
|
| |
  |
Goto Forum:
Current Time: Thu May 23 03:32:54 EDT 2013
Total time taken to generate the page: 0.19501 seconds |
Members
Search
Help
Register
Login
Home
