helen-louise's journal

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. )

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. )

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.

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.

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.

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. )

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... )

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.

( 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 :)