Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jody, Oct 27, 2009.
I have a new article up on empowher.com.
Multi-System Breakdown in CFS: Post-exertional Malaise
lol, nice Jody. I liked how you pointed out that the theories do nothing for us.
Jody, this may be your best article yet on EmpowHer. It reads like a poem and portrays the reality of post-exertional malaise better than I've read anywhere else. You sure have a talent for sprinkling in just the right words, without overdoing it. I'm wondering if you have the same talents with your cooking. Just enough salt to make it taste good.
I have never been so aware as I have been these past few weeks, that the theories don't do anything for us. Not for me, at least, and sounds like, not for you either.
At best, they bring up new ideas of things to try from time to time. But at worst, they scare the pants off me, and leave me confused and exhausted from my thoughts going 'round and 'round and leaving me no further ahead.
At the end of it I still end up doing what I've been doing -- taking the things I've learned help me and trying to avoid the things that don't.
I'm glad theories help research. But till that research has been cooked and set and is ready to eat ... well, I'd just as soon wait till things get to that stage before I try to digest any more of it.
Thanks for that.
I think your mention of cooking, flavoured my reply to Lisa.
And ... ahem, yes, I am a pretty fair cook, if I do say so myself. (And I do say so myself ... I don't know if I can get anyone else to say it for me. )
Except for the PASTRY stuff, Jody!
If it's the last thing I do on this forum, I'll get you making home-made pastry. Al & Jesse will just have to live through the practice sessions
What a lovely piece of writing! And, it's so evocative of the experience!
I agree that this was written with a light yet certain touch. You have a really good voice which is becoming fine before our eyes.
I think you've hit your stride. I can't see how you could have made that any better than it was.
You're a writer!
That's pretty cool, huh? Yeah, that's pretty cool!
You've painted a very good picture of PEM. So many people have no idea what a big part of this illness if for us. You are continuing to do a fabulous job in educating the public!
And yes, with just the right, light touch.
No guarantee that they WOULD live through the practice sessions.
Yeah. It is pretty cool.
Nobody is more surprised by it than me.
You and Koan both alluded to a light touch.
Can either of you tell me what you mean by this?
Jody, I love the way you captured the experience of this.
At least something worthwhile has come of going through this crap, eh?
I am touched.
I'll jump in here, Jody,
"A Light Touch" might mean that you use a minimum of words to create a powerful message.
(or, few ingredients & you don't overbeat the mixture).
I like that.
Though it's not often I'm told that I use a minimum number of words.
Nice analogy too, by the way. That is also the best way to make ... muffins, I believe.
I meant that in a nice way, Jody.
I'm not known for being concise & to the point (drives my Boss up the wall sometimes).
I admire the way you get your messages across with few words.
It's a great gift to have... (you'll have to give me some lessons sometime).
I took it that you meant it in a nice way.
I have always had a tendency to use the greatest number of words possible to get across what I'm trying to say.
When I started writing on the net for other people and had to meet a word limit for articles, it was SO hard for me. So I guess if I've gotten better at brevity it is probably due to this.
But I don't think you need any lessons at all. I like the way you express yourself just fine, just the way it is.
You validated what I've been trying to explain to people for so long. I really don't always know when I've crossed the limit until it's too late. And then you really don't know how long you'll be down or how far down.
My last crash snuck up on me because of some meds I was taking. When a nurse took my temperature and it was elevated, the tears started streaming down my face and I realized that I was sick again and I stopped and went back to bed. About 10 days later and I'm starting to come back to life.
Sometimes it hits like a hammer and sometimes it sneaks in like plastic wrap. I tend to ignore the plastic wrap one until it's too late.
Thanks for another great article. I'm enjoying them immensely.
Glad you're enjoying them.
It does help to hear from other people that they are running into the same things. Helps with the sneaky voices in our thoughts that wonder if it's just ... us? Maybe we're just inadequate or ... weak ... stupid ... lazy ... fill in the blank with your own personal demons.
It helps to hear from someone else that, yes, this illness IS the hell on earth we think it is. It really IS this hard and this tricky to live with it, and live in spite of it.
And that it sucks to have SO much down time, and it REALLY sucks the way the downtime can sneak up on us and catch us so frequently ....
I am sorry to hear you got snuck up on and brought down again. Glad to hear you are feeling a little better again.
Pace yourself. Pace yourself .... Pace yourself.
I read something else recently about the post exercise malaise in POTS and CFS being to do with reduced expression of neuronal nitric oxide:
You can also try a Google Site Search
Separate names with a comma.