(no subject)
I may have quoted this lyric in a blog before, so if I have, I apologise for the repetition, but it's really quite accurate.
"So sick, so sick of being tired, and oh-so tired of being sick"
It's Taking Back Sunday, You Know How I Do. If you don't know it, go listen :)
But anyway. I really try my hardest not to whine too much about being ill on here, because
1) There are people out there with far worse things than me who seem to cope much better,
2) It's boring to listen to,
3) I'm very aware that, unless you've seen me on a bad day, which most people haven't, its probably hard to imagine what I'm going through, and I don't wanna look like I'm moaning about just a bit of a headache.
But, every so often, all this gets really on top of me and I have a bit of a breakdown of being able to cope with it. At the moment is one of those times. I've been having a generally bad month anyway, which I've not had to deal with for a while. Thankfully I'm not as bad as I used to be when it all began, but it's still enough to suck up all my energy and make me feel drained pretty much constantly, even when the pain side of things actually isn't too bad. Then, when your energy levels are so low, it's hard to pick yourself back up and stay happy and positive when you're feeling so ill for a succession of many days. And it's that sort of thing that makes this illness so hard to live with.
(You know, I don't even like calling it an "illness". Because "ill" connotes something like flu or a virus that makes you puke all over the place. Something with symptoms that can be seen pretty easily and affect you right then and there. Something acute, I suppose. Whereas this thingy I have is chronic. And sometimes, I am ok, which makes me feel like I'm being insulting to those who are perma-ill by calling it an illness. I think "condition" might be a bit more suitable for what I have, but saying "I have a condition" sounds kinda pretentious, doesn't it? But anyway, I just wanted to include that little paragraph so you know my feelings on the semantics, in case you thought they were off too. I'll carry on saying "illness" for ease of communication though.)
Anyway, as I was saying, it is often not so much the pain that makes this hard to live with, it's all the accompanying symptoms. As I discussed, the exhaustion is horrible. It makes it hard to do much at all. Making a cup of tea is an effort. I can do a little bit of washing up (some cups, and mine and mum's plates from lunch) and then I need to sit down because my legs don't feel like they can keep me up much longer. That means that I find it hard to help mum and dad out around the house, which makes me feel like I'm just being a lazy arse, and they must think I'm being a lazy-arse, and I feel guilty because I'm not contributing to the household in financial OR helpful terms, I'm just like a big dead weight, a burden to them. It also screws up my sleeping patterns. I sleep longer, partly because I need it, and partly just because sleep means I don't have to face as much boredom because I can't so anything constructive, but that means that I'm not tired til later, so I go to bed later, then sleep a bit longer still, until we get to the point where I'm going to sleep at 5.30 am and getting up at 2pm. Which makes me feel even more lazy.
And it seems it's not just me that finds it hard to do anything, my immune system also likes to give up on me. It's weird, because this illness is, as far as I know, not an immunological problem, it's a neurological one, which means my immune system shouldn't theoretically be busy working on sorting my headaches, so shoooould be ok to fight off other crap. But it doesn't. I suppose it's a mixture of the stress and tiredness, which both deplete the immune system's capacity to work effectively, or something like that.. but yes, I've got a lovely lot of phlegm on my chest, you know like when you have a cough? Well, I have the phlegm with no cough. (I've not worked out if that's good or not yet.) I have the largest outbreak of spots I've had in I don't know how long, and things aren't healing as fast as they should. (and don't panic, "things" doesn't equal deliberate things, but like, I bit the inside of my mouth when eating the other day and it shoulda gone by now!). So all that is great fun to deal with! [/sarcasm].
Then we have the stupid neurological fuckery that goes on. There are all sorts of things that fall into that category, some of the most prevalent being dizziness and light-headedness, being rubbish and balancing, headrushes and visual disturbance. In small doses, the visual disturbance doesn't actually bother me, you learn to live with it and kinda forget that the rest of the world doesn't get black dots laid over the fruit and veg aisle at Tesco when they're least expecting it. It's been getting worse lately though. A few nights ago my vision almost completely went again, because my field of vision was filled with opaque sort of "sparkling" lights. And that's scary. I've lost my eyesight completely twice before, and can honestly say it was the most frightening thing I've ever experienced, so to feel like it's coming at me again is quite distressing. (blergh, that sounds so melodramatic, I'm sorry.) And I keep fucking seeing things that aren't there, which just makes me feel like a total nutbag. In small doses, it can be kinda funny to feel like a nutbag, but it's been getting more regular. I've had imaginary snakes in the bathroom, spiders in my bed, things that weren't there before "appearing" then fading away again. And I KNOW I'm not going mental, because it iiiis a side effect of headaches, but it's still a pain in the arse. And then recently I've also had a new thing start up, which is hearing disturbance. I've had ringing in my ears, and a high-pitched whistling sort of sound that won't shift, one ear going muffled, and more often, both going all muffled. You know that feeling when you first walk out of a gig and you feel like you've got cotton wool in your ears? It's like that, spontaneously. And that, too, is fucking annoying. Especially when you're happily watching Strictly Come Dancing: It Takes Two and wanting to snuggle Brian for being so darn cute with Ali (...I know none of you watch Strictly, so will be like "Huh?!" at that, but SCD references are good for my soul!) then all of a sudden can't hear his loveliness!
Writing all those things down, they seem quite trivial, and yes, most of the time they don't bother me quite so much (because, no matter what the actual headache's doing, I still get these other things any time) but when you've got the headache and the exhaustion along with it, thus the inability to do anything long enough to take your mind off it, they actually start to become the only "events" in your day. which is pretty fucking pathetic and upsets me. And it's harder to deal with because no one I know, knows what it's like. I don't know anyone who has to live with it or anything similar, and I really wish I did sometimes cos it gets kinda isolating. I don't even like saying that, because I feel bad because I knoooow pretty much everyone tries their best to understand and be sympathetic and things, and I don't wanna make it seem like I'm snubbing people's efforts because I really, really am not. But just as I can never completely understand, say, my friend who grew up in care, because it's an experience so alien to my own, others can never truly understand the impact that living with illness has on you, aside from it meaning you're in pain some of / a lot of the time.
I think that's all my bitching done for now, I've got it out a bit. I should probably be off to bed, even though I'm not all that tired. Night night all, and sorry again for being a moany cow. I'll try and be back soon with a happier blog :) xxx
"So sick, so sick of being tired, and oh-so tired of being sick"
It's Taking Back Sunday, You Know How I Do. If you don't know it, go listen :)
But anyway. I really try my hardest not to whine too much about being ill on here, because
1) There are people out there with far worse things than me who seem to cope much better,
2) It's boring to listen to,
3) I'm very aware that, unless you've seen me on a bad day, which most people haven't, its probably hard to imagine what I'm going through, and I don't wanna look like I'm moaning about just a bit of a headache.
But, every so often, all this gets really on top of me and I have a bit of a breakdown of being able to cope with it. At the moment is one of those times. I've been having a generally bad month anyway, which I've not had to deal with for a while. Thankfully I'm not as bad as I used to be when it all began, but it's still enough to suck up all my energy and make me feel drained pretty much constantly, even when the pain side of things actually isn't too bad. Then, when your energy levels are so low, it's hard to pick yourself back up and stay happy and positive when you're feeling so ill for a succession of many days. And it's that sort of thing that makes this illness so hard to live with.
(You know, I don't even like calling it an "illness". Because "ill" connotes something like flu or a virus that makes you puke all over the place. Something with symptoms that can be seen pretty easily and affect you right then and there. Something acute, I suppose. Whereas this thingy I have is chronic. And sometimes, I am ok, which makes me feel like I'm being insulting to those who are perma-ill by calling it an illness. I think "condition" might be a bit more suitable for what I have, but saying "I have a condition" sounds kinda pretentious, doesn't it? But anyway, I just wanted to include that little paragraph so you know my feelings on the semantics, in case you thought they were off too. I'll carry on saying "illness" for ease of communication though.)
Anyway, as I was saying, it is often not so much the pain that makes this hard to live with, it's all the accompanying symptoms. As I discussed, the exhaustion is horrible. It makes it hard to do much at all. Making a cup of tea is an effort. I can do a little bit of washing up (some cups, and mine and mum's plates from lunch) and then I need to sit down because my legs don't feel like they can keep me up much longer. That means that I find it hard to help mum and dad out around the house, which makes me feel like I'm just being a lazy arse, and they must think I'm being a lazy-arse, and I feel guilty because I'm not contributing to the household in financial OR helpful terms, I'm just like a big dead weight, a burden to them. It also screws up my sleeping patterns. I sleep longer, partly because I need it, and partly just because sleep means I don't have to face as much boredom because I can't so anything constructive, but that means that I'm not tired til later, so I go to bed later, then sleep a bit longer still, until we get to the point where I'm going to sleep at 5.30 am and getting up at 2pm. Which makes me feel even more lazy.
And it seems it's not just me that finds it hard to do anything, my immune system also likes to give up on me. It's weird, because this illness is, as far as I know, not an immunological problem, it's a neurological one, which means my immune system shouldn't theoretically be busy working on sorting my headaches, so shoooould be ok to fight off other crap. But it doesn't. I suppose it's a mixture of the stress and tiredness, which both deplete the immune system's capacity to work effectively, or something like that.. but yes, I've got a lovely lot of phlegm on my chest, you know like when you have a cough? Well, I have the phlegm with no cough. (I've not worked out if that's good or not yet.) I have the largest outbreak of spots I've had in I don't know how long, and things aren't healing as fast as they should. (and don't panic, "things" doesn't equal deliberate things, but like, I bit the inside of my mouth when eating the other day and it shoulda gone by now!). So all that is great fun to deal with! [/sarcasm].
Then we have the stupid neurological fuckery that goes on. There are all sorts of things that fall into that category, some of the most prevalent being dizziness and light-headedness, being rubbish and balancing, headrushes and visual disturbance. In small doses, the visual disturbance doesn't actually bother me, you learn to live with it and kinda forget that the rest of the world doesn't get black dots laid over the fruit and veg aisle at Tesco when they're least expecting it. It's been getting worse lately though. A few nights ago my vision almost completely went again, because my field of vision was filled with opaque sort of "sparkling" lights. And that's scary. I've lost my eyesight completely twice before, and can honestly say it was the most frightening thing I've ever experienced, so to feel like it's coming at me again is quite distressing. (blergh, that sounds so melodramatic, I'm sorry.) And I keep fucking seeing things that aren't there, which just makes me feel like a total nutbag. In small doses, it can be kinda funny to feel like a nutbag, but it's been getting more regular. I've had imaginary snakes in the bathroom, spiders in my bed, things that weren't there before "appearing" then fading away again. And I KNOW I'm not going mental, because it iiiis a side effect of headaches, but it's still a pain in the arse. And then recently I've also had a new thing start up, which is hearing disturbance. I've had ringing in my ears, and a high-pitched whistling sort of sound that won't shift, one ear going muffled, and more often, both going all muffled. You know that feeling when you first walk out of a gig and you feel like you've got cotton wool in your ears? It's like that, spontaneously. And that, too, is fucking annoying. Especially when you're happily watching Strictly Come Dancing: It Takes Two and wanting to snuggle Brian for being so darn cute with Ali (...I know none of you watch Strictly, so will be like "Huh?!" at that, but SCD references are good for my soul!) then all of a sudden can't hear his loveliness!
Writing all those things down, they seem quite trivial, and yes, most of the time they don't bother me quite so much (because, no matter what the actual headache's doing, I still get these other things any time) but when you've got the headache and the exhaustion along with it, thus the inability to do anything long enough to take your mind off it, they actually start to become the only "events" in your day. which is pretty fucking pathetic and upsets me. And it's harder to deal with because no one I know, knows what it's like. I don't know anyone who has to live with it or anything similar, and I really wish I did sometimes cos it gets kinda isolating. I don't even like saying that, because I feel bad because I knoooow pretty much everyone tries their best to understand and be sympathetic and things, and I don't wanna make it seem like I'm snubbing people's efforts because I really, really am not. But just as I can never completely understand, say, my friend who grew up in care, because it's an experience so alien to my own, others can never truly understand the impact that living with illness has on you, aside from it meaning you're in pain some of / a lot of the time.
I think that's all my bitching done for now, I've got it out a bit. I should probably be off to bed, even though I'm not all that tired. Night night all, and sorry again for being a moany cow. I'll try and be back soon with a happier blog :) xxx