On inappropriate envy

[sqbr]

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 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 :)

Comments

[flyingblogspot.livejournal.com]

This is at a bit of a tangent to the post, but do you mind if I ask a CFS-question (or three) Sophie? (Feel free to ignore if it's not something you feel like answering.)

I was just thinking about mostly-physical activities versus mostly-intellectual activities and wondering to what extent the CFS affects the latter in your experience. Do thinking activities contribute to the fatigue too? And has the experience of CFS in any way changed your intellectual processes?

[alias_sqbr]

It definitely affects my mental state. If it was just physical, I'd be able to work (at least a bit). But I have real trouble concentrating, and am disproportionately worse at abstract mathsy/logical stuff (ie, my job) There's a general mental fuzziness, rather like I feel at 4am with insomnia: not always unable to do stuff, but not thinking 100% clearly, and prone to errors of judgement. Also I get eyestrain and headache, which doesn't help.

I find my mental and physical energies are like two different gauges, and they go up and down fairly independently as long as I don't go into the danger zone. Once I push myself too hard, I feel worse on both fronts, though it affects me more on the one I overtaxed. So yes, if I force myself to think too much I lose physical energy as well in the resulting relapse.

And has the experience of CFS in any way changed your intellectual processes?
Unfortunately, answering this question requires concentration :/ Um...I dunno. I guess I've gotten better at letting my subconscious do more of the work, giving it things to ponder and get back to me on (often in an unexpected long lj rant :)) Since I think slower and have worse judgement, I tend to decide what I think on things in advance and stick to that rather than making decisions/reacting on the fly. I worry that this makes my real life conversations a bit repetitive and out of sync with the person I'm talking to (I can think about online stuff at my own pace)

And now I am out of brains for this reply, so shall stop :) *goes to passively surf the internet to build up mental energy*

[dabear.livejournal.com]

I found my short term memory was the worst. Like, from minute to minute, and when you're used to being able to use your brain for like, stuff... like knowing why you just went to the effort of walking down the stairs... it's kind of crazy-making.

[alias_sqbr]

Did I mention I forgot my sisters 21st birthday? :(

And yes, when walking to another room is a major effort, it's pretty annoying not to be able to remember why you did it.

[terrycat.livejournal.com]

I find that mental activity wears me down more, and that I don't bounce back as quickly from it. Which is why I have the reputation of being a bit of a grunt; I can handle doing serious physical stuff as long as I budget for it, but doing any intense mental effort leaves me drained for weeks.

[http://users.livejournal.com/peasant_/]

I'm lucky because my brain gives me a physical early warning sign (I start to stutter) so I know when I need to slow down and conserve mental energy. Before I was diagnosed I used to sometimes get to the point where my brain was so tired I would hallucinate. Not pleasant.

[alias_sqbr]

Ew. Worst I had was the annoyingly frequent situation of being not only too sick to work but too sick to leave work, so I'd have to have a nap to get up the energy to go home.

I've started wearing slightly uncomfortable shows, that way my feet start hurting if I walk/stand too much :)

(Also it's funny the random things you can have in common with people, isn't it?)

[http://users.livejournal.com/peasant_/]

I've started wearing slightly uncomfortable shows, that way my feet start hurting if I walk/stand too much :)

Oh that is hysterical and a brilliant idea!

Ultimately I have found that the only way to cope is routine. I have a routine and when I stick to it I stay reasonably well and can cope with the life I have. I still have to deal with my frustration about the stuff I can't do of course, but that too gets easier with practice.

I guess that is what I most wish someone had told me when I first got ill - so I'll tell you in the hope it gives you some benefit :) It does get easier. Even if you don't get better in noticeable increments (I am lucky, I have improved, but the timescale is years not months or weeks) simply learning how to cope becomes easier and that makes life as a whole easier.


not only too sick to work but too sick to leave work, so I'd have to have a nap to get up the energy to go home.

Oh yes. And the persistent problem of when one is feeling absolutely vile and can barely think, let alone move, and people will keep coming up and asking if they can help. Grrr. I have to train everyone that if they see me going off by myself to sit down with my eyes shut then I don't need help, I need to be left alone to get the rest my body is crying out for. The crying being quite literal on occasions because I can get very weepy when I am badly crashing.

Also it's funny the random things you can have in common with people, isn't it?
Yeh, it's weird. I must say I was blinking with surprise when I read your post. Although sadly this thing is reasonably common - whenever I tell someone I've got it I am never the only person they know. And of course there is a higher percentage of disabled/chronically ill folk on LJ because we have more time to waste spend online than healthy peeps :)

[alias_sqbr]

Thankyou and yes, it's gotten easier even over the last month or so I've been at my current level of illness.

And of course there is a higher percentage of disabled/chronically ill folk on LJ because we have more time to waste spend online than healthy peeps

We're not wasting time we're forming support networks :D