baratron: (aibo)
Today I experienced the joy which is seeing a doctor who doesn't know me. Apparently my usual GP is on holiday somewhere warm, lucky woman.

So I was explaining to the doctor that I have had chronic fatigue and pain on and off since I was 13 and I'm now 40, and that I was concerned about the pain in my left knee. The last time I was in this kind of pain was March 2003 when I got diagnosed with hyperventilation occulta. It's a chronic fatigue syndrome type of pain rather than an injury sort of pain.

I explained that I was concerned because I am unable to do very much exercise because of my exercise-induced exhaustion, and now because of this pain I can't even do the small amount of exercise that I usually do. It hurts when I sit, it hurts when I lie down, it hurts when I stand, it hurts when I walk, it hurts when I stretch. Nothing that I know of changes the pain. Since some of my other joints are starting to get achey too, I am concerned.

Trigger warning: unwanted diet advice. )
baratron: (sleepy)
Am still exhausted and not very functional. Having the kind of sleep patterns where I go to bed because I'm tired, but can't sleep for ages despite tiredness; and it doesn't matter whether I set my alarm for 10, 11, 12, 1 or 2, I'm just as tired when I wake up. Oddly, I only remembered yesterday when I was fretting about the blood sugar crashes that I do in fact have a known chronic fatigue condition, and none of the symptoms I've been experiencing are unusual for that. Sometimes I swear I have so many things wrong with me that I can just forget about one of them for months at a time :/

Having said that, despite being exhausted, things are happening v e r y   s l o w l y. Waking up every day with no expectations beyond getting out of bed and playing some Pokemon has been surprisingly good for me. On Friday I managed to weed the entire front garden - less impressive than it may sound, because our garden is the width of the house x a few feet deep, and is covered with a weed-proof plastic barrier and gravel. But animals rip the weed-proof layer when they come to poo on the gravel, so we end up with green and purple weeds growing inbetween the stones, which looks awful. Now, there are no weeds. The back garden is still infested with an enormous, diseased triffid of doom, but you can't see that from the road so I don't care.

Yesterday I dragged myself into town and bought many strange-to-me food products from the health food shop, then attempted to recreate the burgers from Fresh that I got addicted to in Toronto. The result was not completely authentic owing to the fact I hadn't got all the ingredients, but perfectly nice and edible. (I need to attempt the Fresh mayonnaise too, because I actually liked it, and looking at the recipe it contains almost no oil, so it's acceptable to my evil gall bladder.) I also cleaned half the kitchen and have caused far more worktop space to be available than previously existed, by finding places for things that occupy counter space to live. For example, we don't eat toast very often, so it's pointless having the toaster sitting on the worktop, getting itself full of dust which then smells awful when someone fancies toast and puts it on. Today, I need to find enough energy to wash my hair and attempt to finish the kitchen; and if more energy exists, take the cardboard recycling to the bin in town and/or start on the horrible mess that is the front room. It's possible that I will also make "curried garbanzo filling" (a.k.a. chickpea curry) from the reFresh book come into existence, as I bought the ingredients for it too.

It's frustrating to be operating at around 50-60% of my "healthy" capacity - especially because my healthy capacity is only 50-60% of an actual healthy person's. It's also odd where the barriers are - physical/manual work seems much easier to me than mental/creative work. I have a web site that's been 95% done since April, but I feel as though I can't finish it yet because it's too stressful. I have several stories on the go which should be easy to get done, but I feel as though I have no spare brain to deal with them. I'm sorry to be so... useless and uncommunicative to my friends. Ugh.
baratron: (me)
It seems not completely surprising to me that yesterday I woke up violently panicky and my left ankle was so swollen that I spent the whole day limping around at half my usual speed, leaning heavily on my stick. My physical and mental health is linked pretty closely. Nor does it surprise me that today I woke up panicky and my nose was full of dust and itching. The link between panic and chronic hyperventilation exists for many people.

Yesterday's main panic was related to the fact that the doctor's appointment I've booked with my doctor (who is impossible to see at the best of times) was for "Friday 20th March", a date that does not exist. There is a Tuesday 20th March and a Friday 23rd March this year, as well as Friday 20th April. The practice computer says I am due a med review before I can have any more repeat prescriptions, and in addition I need to see my doctor this side of going on holiday. So I was really quite worried that my appointment was actually booked for April. But it isn't, it's on Tuesday. Hooray.

Stuff I need to see the doctor about. )

Meals this week. )

ouch!

Feb. 5th, 2007 02:58 pm
baratron: (Warning: Sick!)
Oh, man. My nose got blocked in my sleep last night, meaning that my mouth dropped open and I had one of my usual "can't breathe properly" nightmares. As a result, I spent some amount of time thrashing around in bed. I've woken up with my right hip in agony and my lower back completely twisted up.

I suppose this is nothing compared to the time I managed to both dislocate my right shoulder and pop it back into place while thrashing around in bed, but I feel very very hurty right now. I know I have a bad back, so I'm very careful about my movements when I'm awake and doing anything like lifting loads or dancing. However, I have pretty much no control over my movements in sleep. I'm good at waking myself up from certain kinds of nightmare (the recurring ones that are really, really triggery for me), but I don't know what to do about new ones that I've never had before.

Excuse me if I stagger around like a total crip today. Thanks.
baratron: (flasks)
I have quite a few regular medications on repeat prescription. For some reason, I keep getting screwed up by weekends. It doesn't help that my doctors' surgery now takes a full 2 working days to produce repeat prescriptions. It used to be the case that if I put a repeat prescription into their letter box over the weekend, they'd process it on Monday and the prescription would be ready & dispensed for me to pick up at the pharmacy on Tuesday afternoon. But now, unless I can get the repeat prescription request into the doctors' before they close on Friday evening, the earliest I'll be able to get my meds is Wednesday afternoon. This is almost a week.

So yesterday on my way into town, I stopped at the pharmacy to explain that I was about to run out of Efexor. Both the usual pharmacists there (identical twins!) know me and my doctor and have all my past prescription details on their computer, so they're usually happy to give me one day's dosage of something in advance of the official bit of paper turning up. However, yesterday there was someone else there that I didn't know, and I panicked and didn't go in. I meant to ring my parents and ask one of them to go round there in the evening, but I forgot. Bah. So I ran out of Efexor. Anyone who's ever been on Efexor/Effexor/venlafaxine will know what the half-life of the drug and corresponding withdrawal effects are like - not pleasant.

Also & unrelatedly, I had a severe attack of nasal congestion starting sometime in the night. I woke up around 8am exhausted & achey with a raging sore throat from breathing through my mouth. Usually, nasal spray & sniffing some Olbas Oil & sleeping propped-up on two pillows is enough to de-congest me, but not this time. So every time I fell asleep I was breathing through my mouth. The effects of several hours of hyperventilation are, in fact, virtually indistinguishable from the effects of Efexor withdrawal: pins & needles in hands and feet & shooting down my arms and legs, numbness in hands, weird electrical effects like insects crawling on the skin, dizziness, and jangling bells if I move my head too quickly. This would all be quite scary if i didn't know why it was happening.

So I feel like ick, and I don't know if this is Yet Another virus or "just" an allergy. I seem to be decidedly feverish, but I'm not sure how much my temperature has to change for me to be certain that I'm fighting an infection rather than "just" having a bad allergic response. The other day, for example, the only thing that was wrong with me was snot, but my temperature was 0.2-0.3 degrees C higher than usual. But I was absolutely fine apart from being snotty. Today I am snotty AND wheezy AND feel cold all the time, and my temperature's up to 37.6 degrees C. I'm assuming I am genuinely ill with something external because of the other symptoms - but I really want to know what kind of temperature increase is associated with what kind of immune system response. This is probably the sort of question that NHS Direct should be able to answer, except it probably deviates far too much from their usual script for them to be able to cope with it :/ I will mark it as a "note to self" to ask my doctor next time I have to go along. I also need to ask whether it's still the case that I'm not allowed to take decongestants - I can't remember which of my meds or illnesses made it inadvisable.

woooooood.

Sep. 6th, 2006 07:01 pm
baratron: (cute)
I haven't really been here for a few days. Friday was not my last day of evil summer school after all - while the group lessons finished, a few people continued with individual lessons on Monday and Tuesday. Between working all over the weekend and the fact I'm not breathing well at the moment, I haven't had enough functioning brain to read livejournal or talk to anyone on the phone.

Fortunately, I have absolutely no work between now & Monday, so I can get some house things and some organising done. Tomorrow's a 5p listing day on eBay UK, so I'll be posting all the clothes that no longer fit me that are worth trying to sell. I suppose I'll charity shop the rest. I need to get the camera's memory card cleared off so I can take photos, which means I might just get round to posting the Paris photos, you never know.

We also have concrete plans to do something about the breathing situation. I have really bad dust mite allergy (to put it into perspective, when they did skinprick tests for my inhaled allergies cut for minor squickiness ) This is supposed to be dealt with by things like dust mite proof mattresses (yes, I have a latex mattress and pillow despite also being allergic to latex - it's trapped behind several layers of fabric so not a problem), opening up the sheets & airing out the bed every day, HEPA filter vacuum cleaner, etc etc. Except there's a limit to the amount of cleaning I have the energy to do on a daily basis, and it's much easier to limit the amount of soft furnishings instead. So we've been planning to rip out all the carpets in our house & replace them with wooden flooring since before we even moved here.

More blethering about wood. )
baratron: (goggles)
Things you don't need on a Monday morning: waking up having a panic attack.

The mechanism of panic attacks is interesting. In summary, what happens is that the sufferer's basal blood carbon dioxide level drops too low, which causes their body to produce a massive surge of adrenaline in response. As adrenaline is the "fight or flight" hormone, getting a massive surge of it out of nowhere and for no (apparent/conscious) reason makes you start to panic. So if you're not able to shut off the part of your brain that starts squeaking "oh my god we're[*] dying" by telling it "no, it's just panic, we're[*] ok", you then have a panic attack.

Most people have panic attacks caused by disturbed psychology. Being anxious for a long period of time increases your breathing rate imperceptibly, causing the basal carbon dioxide level to slowly decrease. Just a tiny change from the normal 10-15 breaths/minute at rest to 15-20 breaths/minute is enough to cause the CO2 disturbance. The surge of adrenaline kicks in when the level drops below a certain threshold. The most interesting thing about it is that it's a vicious spiral - there is so much feedback in the process that every iteration gets worse. Being anxious increases your likelihood of hyperventilating, which increases your chance of having the adrenaline surge, which increases your chance of having a panic attack, which increases your baseline anxiety level. Rinse, repeat. This is the well-known phenomenon that "panic breeds panic". It's also why someone with PTSD, faced with the situation that is most triggering for them, might be absolutely fine while it's happening - then come home, collapse in a chair with beverage of choice and have a panic attack then. Because while they were hyperventilating during the stressful event, their blood carbon dioxide level was still ok - but the sigh of relief as they sat down at home was enough to drop their CO2 level below that threshold point.

And the whole special way in which I'm broken... )

Anyway. Not looking for advice - really not looking for advice, I've been dealing with this thing for so long that most advice would seem patronising; and if I did happen to need any more I'd go back to the breathing retraining physiotherapists and my textbooks. This is mostly just moaning accompanied by a bit of an explanation for anyone who's ever wondered how anxiety and panic work. Sympathy is welcome, especially from people who also have to deal with broken bodies and/or brains (and the denial about them) on a daily basis. Yay denial!

[*] I live in my conscious brain. There is "me", in my conscious brain, and then there is my hindbrain, which isn't exactly part of "me". It just bimbles along shoving random emotions in at inconvenient times. Thus plural.
baratron: (boots)
I am getting sick of hyperventilating in my sleep. I go to sleep lying on my front, but somehow in the night I keep rolling onto my back, and my mouth drops open. Then I start breathing badly, take in far too much oxygen, and have very strange vivid nightmares, which means I wake up exhausted, confused and distressed. Blah. I can do all the breathing exercises I like when I'm awake, but I don't exactly have a lot of control over how I breathe when I'm asleep. Apparently, the only real way to stop this happening is to tape my mouth up before I go to bed - and I'm sure that would make me panic too much to be able to sleep.

In other news, I am almost certainly going to be running right up against the deadline for my thesis submission, so I am not going to do anything remotely interesting between now and July. I read LJ every day because it's essential for sanity, but I can't afford the time to be social in person. If you're having some sort of party in June, please don't be offended when I don't come. I'm not even going to do anything about celebrating my birthday - might do something in July. I've updated my amazon wishlist, but not the one on my website. I'm not going to link my wishlist here, on the basis that if you don't know my real name or email address, you don't know me well enough to be spending your money on me.

If you just want to wish me happy birthday, hold that off until I'm actually able to celebrate it. (I've had my birthday in exam time for long enough that it's no great hardship). Don't get me anything unless you can afford it, and don't give it to me until 1st July. Thanks.
baratron: (aibo)
I have a cold. It is not fun. I honestly would not have believed that one human body could produce this much snot, were I not surrounded by the evidence. Bleurgh. Will write more (and answer my month-long backlog of email) when my brain is actually functioning.
baratron: (bi_pride)
Alexa and Rowan are here. They had major car problems coming over and were very stressed, but we did actually get to the NFT in plenty of time for the film we were going to see. (This was a truly noteworthy occurrence, as it involved herding bisexuals - two of them women!). It was Eden's Curve, a bi-ish poly-ish film which could have been good if not for the tedious arty style. It was so tedious that for 20 minutes at the end, we were sitting through blurred film that gave me motion sickness, just waiting for one or both of the disgraced lovers to commit suicide. I don't think it's a good thing to be sitting in the cinema thinking "oh for God's sake just kill yourself so we can go home" :/

Anyway, after that we went to Tesco's, where they have cool funky electric wheelchair-trolley things. Basically, they're like the electric scooters or buggies that some disabled people (particularly elderly) use to go round the shops, with a large basket mounted on the front. Only these ones are free for anyone who needs them, really easy to drive, and have a tiny turning circle. It was really quite enjoyable to be able to propel myself around without feeling dizzy or tired, being able to go where I wanted to go without having to give directions to someone else all the time. But I have a worrying feeling that driving this wheelchair-trolley round Tesco is going to be the highlight of my week :/
baratron: (eye)
In a funny mood: up and down like a yoyo. I feel the need to blether, and I feel embarrassed blethering in livejournal. I suppose I want to go to a cafe with a group of people and socialise, but it's the middle of the week, Richard is working late, and I can't get out by myself anyway (can't physically, I mean). Chatting online fulfills some of my need to socialise, but my actual journal seems too permanent for me to want to put inane waffle that might only make sense to me in it. I did that the other night, and it was terribly embarrassing come the morning.

So - um, yes. I will try to stick to facts. I have been to the physiotherapist. ... ) It was as successful as I expected, i.e. she confirmed the doctor's diagnosis based on my answers to "The" standard questionnaire for this illness (and I have realised from talking to her that a couple of other things I hadn't even thought of as symptoms probably are!). So I definitely have hyperventilation occulta or chronic hyperventilation syndrome - the question that remains now is whether it is the cause of all my ailments or merely a cause. I now understand what I am supposed to be doing in terms of exercises, and she said some Very interesting things, which I will elaborate on at some later date.

A bit more about my day, if you're interested. )
baratron: (aibo)
I finally managed to get through on the phone to a physiotherapist (hooray!). I'm going to see someone who apparently has been treating chronic hyperventilation for 25 years, so hopefully she will be able to sort me out fairly quickly. (I told her some of my history on the phone). The appointment isn't until Thursday, though, and I'm feeling crappy. My chest hurts, I ache, I feel dizzy and tired, but can't sleep properly.

The highlight of my day has been an advert on tv for yogurt which had a lovely blue ewok-like creature in it, but I can't remember which company it was for and searching online for "blue ewok" isn't very helpful. I want to find photos of the lovely creature, or download the advert or something. It was going on about being nice to your "inner self", if that's any help.

miserable

Mar. 20th, 2003 04:52 am
baratron: (ankh)
This is stupid. I am miserable and in pain, and afraid to post in my own goddamned livejournal in case people have a go at me for worrying about my health instead of the war.

misery... )
baratron: (aibo)
Hmm. I have had half a day of trying to breathe at 1/4 my usual rate, and I am in substantially less pain. There might be something in this.

To answer everyone's questions at once: the reason I feel as though I'm suffocating is that I've been breathing quickly and shallowly my entire life. This is why it's hyperventilation occulta - the hyperventilating isn't obvious even to me. It's not like the kind of hyperventilating when you panic, so breathing into a paper bag isn't going to help - it's hyperventilating over months and years, not minutes. I have to completely retrain my muscles and/or lungs to do something different.

The reason for my physical fatigue and muscle weakness is that for months and months now my muscles have been not getting enough oxygen, thus respiring anaerobically, and thus building up an excess of lactic acid. Most people are familiar with lactic acid buildup from exercising - well, this is like that on a grand scale. You get into a pattern whereby you breathe incorrectly and start to feel pain because of it, and the pain stresses your body and makes you continue to hyperventilate, and this spirals and spirals until it's completely out of control. I was rather unconvinced by the diagnosis because it seemed to be trivialising the problem, but the resources I've found about chronic hyperventilation syndrome suggest that yes, it's a very real problem, and if it goes on for long enough it can be as disabling as the problems I've had. More stuff about diagnosis. )

The other other thing is that in some of the articles I've read about chronic fatigue syndrome which have talked about it actually being a catch-all term for a huge variety of problems, chronic hyperventilation has been suggested as causing some small percentage of CFS cases. I completely ignored that when I was reading them before because I thought I knew what hyperventilating was and didn't think it had anything to do with me. Hrm.

What to do about it. )
baratron: (opinion)
Now that was... not what I was expecting.

My doctor reckons that 90% of the symptoms I've been complaining about are due to something called hyperventilation occulta, or unseen hyperventilation. I am unconvinced. Exceedingly unconvinced. But reading about it on the web, it does seem to be a real thing.

I didn't think I hyperventilated, but apparently you're only supposed to breathe 12-14 times per minute. What? I normally breathe at least once per second. You mean that's not normal? I'm sitting here now trying to breathe only through my nose, and finding it really damned hard - I think normally I breathe through my nose and mouth together. I feel as though I'm not getting enough oxygen, and desperately wanting to open my mouth and gasp for breath, but apparently that's the worst thing I could do.

How am I supposed to learn to breathe a different way? (Semi-rhetorical question - one of the links above talks about a course for people with asthma to learn to stop hyperventilating). Huh.
baratron: (boots)
Cold, cold, cold. It's bloody cold today. Had to put the heating back on, and my hands and feet are like little blocks of ice. Still, Alexa came round with the CAR! so I have been out of the flat and seen large amounts of south London, which is... not often pleasant, but is when you've been stuck inside for too long.

Back home, I'm procrastinating getting stuff together for my doctor's appointment tomorrow. Somewhat afraid that my wonderful "doctors not taking me seriously" history will repeat itself, feeling like a ninny for not just going to see any old doctor there, worried about how many blood tests I might need doing and how many months it'll be to get a diagnosis. I worry too much, and thus I procrastinate - because if I sit here and play The Sims or talk on irc for an hour, that's another hour in which I don't think about my illness (very much).

I am also terribly afraid of saying the wrong thing and thus getting the wrong diagnosis. Especially of saying the wrong thing and then getting the wrong treatment, which could potentially make something else worse. The most difficult part of this is that I entirely lack vocabulary to describe the most important parts of what is going wrong with me. Blethering on this theme. )
baratron: (me)
Work, body crapness and conclusions. )

I've been talking about starting to use a wheelchair, and some of my friends' reaction has been "Oh my God - I hope it doesn't get that bad!". And I'm like - it's already that bad. I can't walk reliably round the flat most days, let alone out in the street - and certainly not out in the street by myself, today proved that. I see a wheelchair as a wonderous thing that will let me have some semblance of a life, rather than a terrible thing that I will be stuck in. To be honest, the biggest problem I'd have with using a wheelchair would be other people's reactions. I am just so depressed and unhappy from not being able to go out, like I said, even just down to the bank to pay a bill - never mind whether or not I have the money, I can't get there. I'm completely dependent on Richard or Alexa or other friends to do everything outside the house.

If this is actually ME or chronic fatigue syndrome, then it's probably not a good idea for me to do very much - but I need to be able to do something, even if it's just being wheeled down to look at the flowers in the park. It's really hard to explain. I've been virtually housebound by depression before, and that pissed me off, but at least I didn't want to go out very much. Whereas now, I want to be able to get on with my job and my degree and my normal everyday life, and I can't. I actually would really like to be able to do my job, but it puts me in too much pain to get there: I don't hold a driving license and even if I did, I'm not sure I'd be safe to drive in this uncontrolled condition; and it's just not practical to have someone else drive me in.

Okay, that's enough moaning - no more sympathy, please, just practical suggestions :) Anyone who wants to bring me dinner over the next few weeks is welcome, if you call me to arrange logistics - if you don't have my number email me for it. Don't care who comes, really, just come and keep me company. Oh yeah, I should warn you it's a tip, because I don't want to spend the small amount of energy I do have on cleaning up, but if anyone is particularly bothered by it, you can come and clean for me :)
baratron: (aibo)
I officially Did Too Much at the weekend, and am suffering for it now. Weekend, and exhaustion. )

I am seriously thinking about getting a wheelchair to use outside the house. I'm sick of being housebound 4 or more days out of 7, and not being able to go shopping or to the bank.

On the basis that there are 4 or 5 illnesses with a similar list of symptoms, I've written out a complete list of my symptoms for the doctor: Read more... )
If there's anything you've heard me complain about that isn't on the list, let me know so I can add it.

I should probably go back to bed now - I've written this in three chunks with breaks in between, but even then I'm starting to fall asleep over the keyboard.
baratron: (me)
M.E. is an illness. M.E. stands for Myalgic Encephalomyelitis - which is a bit of a mouthful, but basically means muscle ("myalgic") and head ("encephalitic") symptoms. M.E. is also known as Post-Viral Fatigue Syndrome (PVFS), because it often follows on from a viral infection. Also known as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

As its name suggests, M.E. mainly affects the muscles and the head. Read more... )
baratron: (introspection)
Hellfire and damnation. I have yet another cold - sore throat, fever, etc. When I was talking on irc a couple of weeks ago about the cold I had then, and mentioned how frequently I have colds (every 2-3 weeks), someone said I should see my doctor. I said "But I've always been like this - I've always had at least one cold a month". He replied "Nevertheless, it's not normal". Now I have yet another cold from that one. My immune system is shot to pieces - I've known that for ages. I've been avoiding going to the doctor because they will probably want to do blood tests for HIV and leukaemia, and I hate having blood taken. I'm pretty sure it's not either of those conditions, because as I said, I've been like this for years - well before I was sexually active, for instance.

I remember when I was about 14 I had some sort of weird chronic fatigue thing that was never properly diagnosed. My short-term memory disappeared, I kept falling asleep in class despite getting enough sleep, and I had bad muscle pains. My doctor at the time thought it was ME, but didn't want to explicitly diagnose that because she said it wasn't a "useful" diagnosis. Essentially, even now, more than 10 years later, no one knows what causes ME and there is no real treatment for it.

Now, I know from a friend with ME/CFS is that it's like having flu all the time. So just now I decided to do a web search for the symptoms. And this is where the hellfire and damnation come into it. Here's a list of ME symptoms by the doctor who first reported the illness. Let's play the "How many of these do I have?" game. Things underlined are a yes, things in bold are a "Hell, yes!".
And it gets long... )

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