![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
So, it's hard to explain very clearly what my health problems really involve, and I know with other people's I often feel confused but not wanting to offend by asking. So, a synopsis.
Not required reading by any account.
In general, the symptoms which have been my lifelong companions and which tend to flare up any time anything is wrong with me are a sore throat, general malaise (feeling generally sick/tired etc) and digestive problems. This makes it hard to tell exactly what problem causes what so they all blend in together.
In order of appearance:
High susceptibility to respiratory infections: any time I get run down I get a cold. These used to be REALLY nasty, but have improved a lot as I've gotten older. The three most reliable triggers are the release of stress, a strained throat, and tiring myself out while sick (and here "sick" means anything on this page except my knees). For this reason I avoid stress, especially about particular days (I couldn't avoid getting sick on my wedding :/), avoid extended singing/loud talking etc, and am REALLY careful with myself when ill. My old work pressured me to work when I was sick until I got three infections in a row and had to take three weeks off as a result.
Food intolerances: These make me feel bloated, nauseous, and tired with a swollen throat, and the symptoms can last anything from half and hour to a few days. The main ones are dairy, soy, and cocoa butter. I didn't really deal with these until my early 20s (after I left home and could control my diet) which is why some people still remember me as a chocolate fiend. Can trigger chronic fatigue/colds.
Bad knees: caused by shonky ankles. I have orthotics now but still have trouble walking up stairs or steep slopes, and the more stairs I walk up the more it hurts, so I avoid them on principle. Otherise not really a problem.
Chronic fatigue: Given the above, it's hard to pinpoint when this started, but I'm inclined to think it was during the first year of my Phd in 2001. It causes fatigue, obviously, but overall I feel like I've just had a REALLY tiring day, so my muscles ache, I have trouble concentrating, and overall my body is just saying "LIE DOWN STOP DOING ANYTHING!". Also (naturally) my throat is often very sensitive which can set off/simulate a cold. I used to be mostly fine but get the odd attack, but my "normal" went down hill and the attacks got longer and more frequent, and have been pretty much my usual state for the last couple of months. At this point I spend large parts of my day sitting/lying down and trying to get the energy/waiting for my legs to stop hurting enough to do small things like make lunch or turn on the playstation. I have real trouble concentrating, which makes it hard to do a lot of day-to-day jobs like answering email, decide on a birthday present etc. I'm not low on creative energy though, so if I let my subconscious ponder something for a while and just let it flow when I feel inspired can still do stuff like lj posts/art etc. But I can't tell myself to do something if it's not sitting there pre-written in my subconscious. If that makes sense. (Another thing which requires too much concentration: proof-reading :))
Attacks happen at random but are also triggered/worsened by tiring myself (which at this point means "walking in to the kitchen for a snack one too many times") I can ignore it to some extent for a day or so if I have to but then feel REALLY BAD afterwards. Sometimes it's worth it, especially if I'm careful not to push too hard. Also set off by anything else being wrong with me, ie stress, a cold, reflux, food reactions.
Reflux: Oddly enough, I don't notice much actual reflux (as in, tasting/feeling stomach acid coming up) but I get a very distinctive unpleasant feeling in my stomach, my throat gets really irritated, and it tends to set off my chronic fatigue. This is triggered by all sorts things: fat, acid, alcohol, red capsicum/chili/paprika, watercress, and possibly other things I haven't figured out yet. Summary of all my food issues.
Consequences of sickness: I spend a lot of time feeling bored and lonely (though since I stopped forcing myself into work I'm not TOO miserable any more most of the time), and the under socialisation isn't helping my naturally awkward social skills any. Also I tend to spend too much time on the computer/DS and give myself a headache. I rarely get the chance to go out (and feel stupid and vague when I do), and the house is a mess :/ On the plus side, I have LOTS of time for writing lj entries :)
See also: Spoon theory.
And that's all I can think of for now. Let me know if I've missed anything you're interested in and I'll ignore your email for a week and then add it in :D
EDIT: While this does all sound pretty dire, it's amazing what you can get used to. And living with it at home is a HUNDRED BILLION times better than when I was this sick and trying to work. Blech.
Not required reading by any account.
In general, the symptoms which have been my lifelong companions and which tend to flare up any time anything is wrong with me are a sore throat, general malaise (feeling generally sick/tired etc) and digestive problems. This makes it hard to tell exactly what problem causes what so they all blend in together.
In order of appearance:
High susceptibility to respiratory infections: any time I get run down I get a cold. These used to be REALLY nasty, but have improved a lot as I've gotten older. The three most reliable triggers are the release of stress, a strained throat, and tiring myself out while sick (and here "sick" means anything on this page except my knees). For this reason I avoid stress, especially about particular days (I couldn't avoid getting sick on my wedding :/), avoid extended singing/loud talking etc, and am REALLY careful with myself when ill. My old work pressured me to work when I was sick until I got three infections in a row and had to take three weeks off as a result.
Food intolerances: These make me feel bloated, nauseous, and tired with a swollen throat, and the symptoms can last anything from half and hour to a few days. The main ones are dairy, soy, and cocoa butter. I didn't really deal with these until my early 20s (after I left home and could control my diet) which is why some people still remember me as a chocolate fiend. Can trigger chronic fatigue/colds.
Bad knees: caused by shonky ankles. I have orthotics now but still have trouble walking up stairs or steep slopes, and the more stairs I walk up the more it hurts, so I avoid them on principle. Otherise not really a problem.
Chronic fatigue: Given the above, it's hard to pinpoint when this started, but I'm inclined to think it was during the first year of my Phd in 2001. It causes fatigue, obviously, but overall I feel like I've just had a REALLY tiring day, so my muscles ache, I have trouble concentrating, and overall my body is just saying "LIE DOWN STOP DOING ANYTHING!". Also (naturally) my throat is often very sensitive which can set off/simulate a cold. I used to be mostly fine but get the odd attack, but my "normal" went down hill and the attacks got longer and more frequent, and have been pretty much my usual state for the last couple of months. At this point I spend large parts of my day sitting/lying down and trying to get the energy/waiting for my legs to stop hurting enough to do small things like make lunch or turn on the playstation. I have real trouble concentrating, which makes it hard to do a lot of day-to-day jobs like answering email, decide on a birthday present etc. I'm not low on creative energy though, so if I let my subconscious ponder something for a while and just let it flow when I feel inspired can still do stuff like lj posts/art etc. But I can't tell myself to do something if it's not sitting there pre-written in my subconscious. If that makes sense. (Another thing which requires too much concentration: proof-reading :))
Attacks happen at random but are also triggered/worsened by tiring myself (which at this point means "walking in to the kitchen for a snack one too many times") I can ignore it to some extent for a day or so if I have to but then feel REALLY BAD afterwards. Sometimes it's worth it, especially if I'm careful not to push too hard. Also set off by anything else being wrong with me, ie stress, a cold, reflux, food reactions.
Reflux: Oddly enough, I don't notice much actual reflux (as in, tasting/feeling stomach acid coming up) but I get a very distinctive unpleasant feeling in my stomach, my throat gets really irritated, and it tends to set off my chronic fatigue. This is triggered by all sorts things: fat, acid, alcohol, red capsicum/chili/paprika, watercress, and possibly other things I haven't figured out yet. Summary of all my food issues.
Consequences of sickness: I spend a lot of time feeling bored and lonely (though since I stopped forcing myself into work I'm not TOO miserable any more most of the time), and the under socialisation isn't helping my naturally awkward social skills any. Also I tend to spend too much time on the computer/DS and give myself a headache. I rarely get the chance to go out (and feel stupid and vague when I do), and the house is a mess :/ On the plus side, I have LOTS of time for writing lj entries :)
See also: Spoon theory.
And that's all I can think of for now. Let me know if I've missed anything you're interested in and I'll ignore your email for a week and then add it in :D
EDIT: While this does all sound pretty dire, it's amazing what you can get used to. And living with it at home is a HUNDRED BILLION times better than when I was this sick and trying to work. Blech.
Tags:
- cfs,
- health,
- just so you know,
- life,
- me
no subject
(also, I thought your reflux was worse than mine - apparently not. I wish I could whine to my doc "she get medication - why not me?")
no subject
no subject
Off the top of my head, I can't think of anything you can do apart from be generally friendly and understanding when I am sometimes a bit slow to respond, but you were doing that anyway :)
It's quite possible that my reflux is worse than yours *in theory*, but since I'm on medication and you're not I imagine yours is much worse in practice. With me the main issue isn't so much the reflux itself but the fact that it sets off my cfs and throat.
By which I mean to say: Yes! A doctor! Nexium and Pariet are the two most common prescription treatments afaict, both have no side-effects beyond fixing reflux. If one doesn't work try the other and/or a higher dose.
And as seaya says, there are some good over-the-counter antacids, though apparently some can cause issues with overproduction of acids. I like Gaviscon myself.
no subject
For the record, I have no problems answering questions on any of my physical or mental health issues; if you ever have anything you want to know, ask away!
no subject
Although it does not compare to the difficulties experienced by patients, I think it would be fair to say that chronic unwellness is also quite trying for medical staff, as diagnosis and management are difficult and unrewarding, and psychological problems quickly come into play. Hence the lure of surgery...
no subject
no subject
For the record, I have no problems answering questions on any of my physical or mental health issues; if you ever have anything you want to know, ask away!
Thankyou, I will keep that in mind.
no subject
As far as I can tell you're not going into work at all these days, and before you stopped doing that you were missing a lot more work than most people do due to sickness.
It seems weird that your employer doesn't mind this. Are you still getting paid?
I realise that this is none of my business, so you're welcome to delete/ignore this comment, but I can't help but wonder.
no subject
I'm currently on unpaid leave for the forseeable future, having used up my annual leave and sick leave (and have been on unpaid leave for large sections of my employment when I ran out of other leave. Not that my previous, casual, jobs had leave at all...). Which means going back down to a single income, which sucks.
no subject
(I don't know what you all have in Australia regarding social services.)
no subject
no subject
Sometimes I'm not really up for typing much due to pain issues, but you know. Otherwise.
*non-hugs*
I know what you mean about things sounding dire but it's amazing what you can get used to. Comprehensive lists of my own stuff tend to make me embarrassed and feel like I'm lying/exaggerating because, really, who'd live like this?
no subject
There's not really any way to say "I am largely housebound due to chronic illness" that doesn't sound dramatic is there?
no subject
YOUR
THYROID
TESTED
NOW!!!!
Don't make me address you by your spice name! *8)
no subject
no subject
I don't remember
everything you say is me. have it, got it, felt it...
I have had CFS/FMS for almost 20 yrs now...
it is amazing what you get used to. I retired 3 yrs ago (very early) because i was sleeping in my car at work. But the digestive probs were puzzling at first until explained to me that the gut is also a muscle, like the rest of them, and subject to equal weirdness.
Bored and lonely pretty well describes it. With bits of joy and lots of sitting and resting.
Re: I don't remember
My digestive system has been a problem since LONG before the cfs :) But it certainly doesn't help.
no subject
(also, I thought your reflux was worse than mine - apparently not. I wish I could whine to my doc "she get medication - why not me?")
no subject
no subject
Off the top of my head, I can't think of anything you can do apart from be generally friendly and understanding when I am sometimes a bit slow to respond, but you were doing that anyway :)
It's quite possible that my reflux is worse than yours *in theory*, but since I'm on medication and you're not I imagine yours is much worse in practice. With me the main issue isn't so much the reflux itself but the fact that it sets off my cfs and throat.
By which I mean to say: Yes! A doctor! Nexium and Pariet are the two most common prescription treatments afaict, both have no side-effects beyond fixing reflux. If one doesn't work try the other and/or a higher dose.
And as seaya says, there are some good over-the-counter antacids, though apparently some can cause issues with overproduction of acids. I like Gaviscon myself.
no subject
For the record, I have no problems answering questions on any of my physical or mental health issues; if you ever have anything you want to know, ask away!
no subject
Although it does not compare to the difficulties experienced by patients, I think it would be fair to say that chronic unwellness is also quite trying for medical staff, as diagnosis and management are difficult and unrewarding, and psychological problems quickly come into play. Hence the lure of surgery...
no subject
no subject
For the record, I have no problems answering questions on any of my physical or mental health issues; if you ever have anything you want to know, ask away!
Thankyou, I will keep that in mind.
no subject
As far as I can tell you're not going into work at all these days, and before you stopped doing that you were missing a lot more work than most people do due to sickness.
It seems weird that your employer doesn't mind this. Are you still getting paid?
I realise that this is none of my business, so you're welcome to delete/ignore this comment, but I can't help but wonder.
no subject
I'm currently on unpaid leave for the forseeable future, having used up my annual leave and sick leave (and have been on unpaid leave for large sections of my employment when I ran out of other leave. Not that my previous, casual, jobs had leave at all...). Which means going back down to a single income, which sucks.
no subject
(I don't know what you all have in Australia regarding social services.)
no subject
no subject
Sometimes I'm not really up for typing much due to pain issues, but you know. Otherwise.
*non-hugs*
I know what you mean about things sounding dire but it's amazing what you can get used to. Comprehensive lists of my own stuff tend to make me embarrassed and feel like I'm lying/exaggerating because, really, who'd live like this?
no subject
There's not really any way to say "I am largely housebound due to chronic illness" that doesn't sound dramatic is there?
no subject
YOUR
THYROID
TESTED
NOW!!!!
Don't make me address you by your spice name! *8)
no subject
no subject
I don't remember
everything you say is me. have it, got it, felt it...
I have had CFS/FMS for almost 20 yrs now...
it is amazing what you get used to. I retired 3 yrs ago (very early) because i was sleeping in my car at work. But the digestive probs were puzzling at first until explained to me that the gut is also a muscle, like the rest of them, and subject to equal weirdness.
Bored and lonely pretty well describes it. With bits of joy and lots of sitting and resting.
Re: I don't remember
My digestive system has been a problem since LONG before the cfs :) But it certainly doesn't help.