sqbr: pretty purple pi (I like pi!)
Sean ([personal profile] sqbr) wrote2008-11-09 05:28 pm
Entry tags:

On inappropriate envy

Two things you should not say to someone whose life is significantly affected by a medical condition:
1) Wow, I wish I could life your life!
2) If I had to live like that I would die

I've had quite a bit of the latter when I tell people I can't eat much chocolate etc, it get a bit frustrating. I don't mean "That must be annoying", I'm talking a reaction of intense pity and shock. (It's not that bad!)

But now I have chronic fatigue I get a lot more of the former. To anyone who wants to spend all day laying around doing nothing? Do it! What's that, you can't afford it? You'd feel guilty? People might give you crap? That doesn't stop me, don't let it stop you!

Still, thinking about this reminded me to look up [livejournal.com profile] dot_gimp_snark. Also Lauredlh has a good post about chronic fatigue and invisible disabilities here.

Tactless oaf that I am, I have almost certainly said both of these things multiple times to different people, especially since most of the time it's just people reacting in "Oh god I don't know what to say" panic, which is a common state for me. So, you know, if you've done it to me I probably just accepted it as karma :)

[identity profile] firvulag.livejournal.com 2008-11-09 12:29 pm (UTC)(link)
Just try and find me being 'civil' during the first month of any attempt at 'no caffiene' or 'no coca-cola'. I'm not good company at all. after that month, I'm generally ok though. and then for some reason I end up back on it when I really should know better. I enjoy it too much though and it isn't 'that' bad for me anyway... :)

I would imagine CFS is similar to the effect of crohn's was up to and for a while after diagnosis. And anytime they took me off the steroids and other drugs. You have next to no energy. If you do something, mental or physical, you need to get that energy back and the only way to do that is rest/sleep.

I'm not game to let a doctor try to diagnose me with CFS, I don't want to know. I'll just pretend it's just work making me feel tired. It's better for me that way. (I have -1.5 sick days, and -1 annual leave currently, and I'm trying my hardest to fix that. already used 0.5 of the 1.8 I get back this month and it only started on thursday...)
alias_sqbr: the symbol pi on a pretty background (Default)

[personal profile] alias_sqbr 2008-11-09 10:45 pm (UTC)(link)
Hmm. See my reply to [livejournal.com profile] evil_megz above: if it is cfs you really don't want to push it or you could make yourself worse.

But yeah, I gave up on staying within my sick days a looong time ago :)

[identity profile] terrycat.livejournal.com 2008-11-10 10:01 am (UTC)(link)
You have next to no energy. If you do something, mental or physical, you need to get that energy back and the only way to do that is rest/sleep.
Except that if you sleep too much, you lose energy.
If this was a game, no-one would want to play it.
alias_sqbr: the symbol pi on a pretty background (Default)

[personal profile] alias_sqbr 2008-11-12 12:54 am (UTC)(link)
Except that if you sleep too much, you lose energy.

Ah, see, I get insomnia the next day.

Which leads to a lack of energy, so I guess it's all the same thing :/