Lung disease is a harsh bastard.
I wish it would make up it's mind. Sometimes I feel really good, like I'm not even ill at all, and I feel so far away from friends with CF or whatever who seem to struggle on a daily basis. Then I have those days when I lack the energy to even get out my own room, and it feels impossible that it's just a 'blip' and you'll get better b/c each and every task is so taxing. It's all very 'spoon theory', when some days you have more spoons than others.
I can't help but think that people see me as a hypochondriac. Especially if they only generally see me on good days, or hiding the bad days. Then if you get a really bad day that you just can't hide, no one seems to fucking believe you feel like shit, that every breath feels like you're being stabbed in the side and you don't have the energy to even sit up properly. The main reason I reckon people see me this way, is the whole pain thing. It's not something you can see. So you have to rely on the person in pain to tell you how bad it is. B/c I've had basically a year and a half of on/off pain, (and yeah I'll tell people b/c if I'm gonna suffer, they've got to suffer my whining too) which my dr seems to think jack shit of it. I'm sorry my lungs are complete arses, and are temperamental and sporadically like to make me feel like death, which doesn't necessarily look that way (I probably come off as a whiny child) and yeah I apparently seem to be looking for a miracle cure for this irritating-like-hell pain that won't piss off, but that's just how it is. I don't consider someone a competent dr when 'paracetemol' seems to be the answer for all.
I'm not after sympathy, by the by. I'm just telling it like it is b/c that's what I do. And I didn't really have a funny way to convey any of this, so it's sounding very 'woe is me', but fuck it.
First and last of 2018
Oh dear. I think this is a new record, one post for the entire year (Technically. I wrote on 1.1.18 but its likely I wrote it a few days bef...
3 comments:
Megs,
It's ok for you to vent and you don't come off as being "whiny". Your friends wish there was something they could do to make the pain go away. You don't have to be funny all the time. Just keep blogging and venting if it makes you feel better. We care and are here for you. Hope you feel better soon.
Hey Megan,
I love your blog. i'm sorry you're having a hard time at the moment but I'm glad you share how you feel because it makes other CFers like me feel less on our own because you express what it's like to have CF so well! I've been on pred and it's done nothing so i have to go in for IV steroids for a week, just waiting for a bed. Some days I feel great and can do loads of stuff, exercise etc. Other days everything is a struggle. and friends usually see the well side. my work colleagues were really surprised when i said i have to go into hospital because i 'seem' pretty well. they don't realise how good we are at 'seeming' well. So i know what you mean about feeling like a hyperchondriac. I really hope things get better for you soon. keep blogging because they make me smile ;oD
Frances xx
Yea, pain grinds you down and its is hard to think straight.
Sounds like no-one is listening to you. Suggest you need to find someone who will.
Never heard of spoon theory tell me more!
Dave
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