helen-louise's journal

Today I had my asthma checkup and I learned a thing!

I've always wondered why my asthma symptoms are so different to those of most other people I know. I obviously HAVE asthma because I get wheezy and find it hard to breathe when I have a snot virus, or when I'm in the presence of triggers like cigarette, bonfire or barbecue smoke (or strong perfumes, or nail varnish solvent, or hairspray, or...)

But I don't get massive wheezing that you can hear, and my peak flow almost never changes. Some of my friends measure their peak flow every day to assess their lung health, but it's pointless for me. If my peak flow goes down from 410 units to 380 units on the EU scale, then I know I am very seriously ill and need to get oral steroids. For most people with asthma, that's a daily change.

Apparently what I actually have is called small airway asthma, i.e. it's mostly in the distal airways and alveoli rather than the bronchioles. That's why my symptoms are mostly snot and post-nasal drip.

Learning this is very interesting and in fact brings the diagnosis full circle. My excellent GP who retired noticed that I had bronchorrhea, which is apparently very unusual outside of end-stage lung cancer patients. Now I have an explanation for that. My asthma is mostly in the distal airways and has mostly been untreated despite high compliance with inhalers.

So I've been given a new and different inhaler to try. It has much finer aerosol particles so is supposed to get deeper inside the lung.

...I can't actually find anything online about small airways asthma other than scientific journal papers, which makes me suspect it's a very new diagnosis.

Urgh. I feel so ill. Felt like I might be going down with something on Thursday and have progressed through the various stages of a cold ever since. Made the mistake of going out for dinner on Sunday evening, and since then have also had a raging fever and severe aching as well. Not happy.

Also, my laptop charger is now so broken that it only charges if it's in one very precise orientation. (The laptop and battery are both fine, I had them checked over by the Apple Store a couple of months ago, when this first started). Since a new one costs £60, I have emailed my university Disability Office to ask whether I can just buy it from the Apple Store (10 minutes away!) and claim the cost back, or if Student Finance England are going to be wankers and expect me to wait until one of their official Disabled Students' Allowance suppliers can get one to me. I rather suspect that the latter will be the case, and it's anyone's guess whether I will actually achieve an 85W MagSafe power supply for 15" MacBook Pro made before 2010, or whether I'll be sent one of the other wattages, or an 85W MagSafe 2 power supply, or... Who knows. (Also, I think I might need to fill in a DSA form for next academic year. I can't remember if I've done one yet).

Also also, I put in a repeat prescription yesterday with a request for 5 items, and only 4 of them were dispensed. There is no indication as to why the fifth one wasn't, it hasn't run out of repeats yet, and I even wrote in large, bright blue letters on the first page "5 items on form". It's megadose folic acid, which every so often I think I don't need, stop taking for a couple of days, and then have a horrible mood crash and end up crying my eyes out for several hours whilst wishing I was dead. I have 2 days supply left, so I need to ring the doctor's surgery and say "Oy", but I have no spoons left at all.

Also cubed, one of the Important Drugs on my repeat prescription is going to run out within the next 8 days. Therefore I need to make a doctor's appointment. Currently I am too sick to leave the house, and certainly too sick to sit in a room full of other sick people and swap germs. Urgh.

Also to the power of 4, I need to talk to my next-door neighbours about smoking right outside the front door, rather than passive-aggressively closing the window whenever smoke blows in :/ That definitely requires spoons :(

In happier news, I watched Dara O Briain's Science Club on BBC iPlayer yesterday and it's amazing. They report science news in a reasonably non-patronising way, and do lots of little experiments during the programme itself, in all areas of science. I'm mildly amused because one of the presenters is someone I knew at Imperial, a guy called Alok Jha. He looks absolutely the same as he did then, which isn't bad considering he's claiming to be 37. (I don't think he can be, since I'm sure he was a third year when I was a first year, and I don't think he would have gone to uni aged 16... But maybe I'm misremembering).

Everyone say "Happy birthday" to my dear ex-girlfriend artremis tomorrow, because she's awesome, and I have failed to get a card to her due to the aforementioned sickness and blergh. She likes bunnies, knitting, coffee, and plushies, so if you can find pictures of knitted bunny plushies drinking coffee, that might work well.

I was going to eat this frozen macaroni "cheese" thing for lunch. It's one of the only vegan ready meals that exists which is also close enough to food for me to be able to consider it. But I opened the packet and it had a 1.5 cm thick layer of ice crystals on top. This wasn't promising. Hacked that off, and found the pasta and sauce underneath was all freezer-burned. Tried to cook it anyway but it's completely dried out and inedible.

Obviously, my mum can take it back to the shop and complain, but SOMEONE has fucked up the storage of the frozen food somewhere along the line. I'm suspecting it's the shop where she bought it because I've had dubiously slushy, obviously melted and refrozen ice cream from there before. Bloody "health" food shops that can't manage to keep their freezers at the right temperature :/

So now I'm eating a bag of crisps and an apple and pretending this is lunch. My back and left leg hurt too much for any kind of cooking which involves more than sitting on a BEKVÄM stool while stuff heats in the microwave. Can't even manage pasta or rice today since I can't bend down to get a clean pan out of the cupboard or reach up to get a bag of carbohydrate product out of the other cupboard... Life would be so much easier if I didn't have all these food intolerances - but the Chronic Fatigue Clinic specialist (an immunologist) reckons they're due to the chronic fatigue anyway. Urgh.

Have to go to UCL for a conference tomorrow & Wednesday. Not looking forward to an early morning. Well, I'll get there as soon as my leg lets me.

I'm at BiCon, and so are my allergies! Woke up 4 times in the night wheezing & feel like death. I blame the one, very thin pillow, which is still too low even after having some clothes shoved under it, & too smelly despite having been double-wrapped in a spare pillowcase I brought from home. I also blame the duvet of doom which must contain all the dustmites in the world, and the ridiculously thin sheet separating me from the mattress & who knows how many years' worth of student secretions?

Currently trying to decide whether to get up for the 11.30am session or go back to bed until the 2.30pm slot, & whether I'm going to the accommodation office here to see if they can give me another pillow, or just into town to BUY a new, clean one!

My poor lungs. My poor itchy eyes. My poor sinuses & itchy nose :(

Haven't written anything here in ages. This is because I successfully achieved my goal of spending the Easter long weekend doing nothing but sleeping and playing Pokemon :)

Oh, there was some other stuff. Went shopping for trousers, my least favourite thing ever, and achieved 5 pairs that fit - including the first pair of jeans I've owned in years! Managed this by picking up every size 18/20 pair of black trousers in Marks & Spencer and analysing it by the two essential criteria of "Is there enough fabric to cover my arse?" and "Will my fat thighs fit in this?". Then took something like 12 pairs to the changing room. Discovered that in some styles the 18 Short isn't just cut down in the legs like you'd expect, but also in the arse region (what?), so I have several pairs of 18 Short but also 2 in 18 Medium. Bought multiple copies of the trousers I really liked so I don't have to go shopping again for a few more years, yay.

Also: taught a few students, delivered leaflets for the Liberal Democrats, signed the nomination papers for the local LibDem councillors (!), saw Tim & Peter and gave Tim his birthday present. Ran out of antihistamine and discovered that it really does work! (itchy, sticky, miserable eyes with bizarre watering followed).

Did not do anything towards tidying the house courtesy of Richard being at work on Saturday and paintball marshalling on Sunday (and therefore sleeping on Monday). Just as well I hadn't planned to, eh?

If this is disjointed, bear with me. My brain isn't working too well.

Today the itching has been so bad that I decided I can't possibly go on as is. I didn't have a rash for all the months I was on 200 mg of carbamazepine, but I developed one within 6 weeks of increasing the dose. (The usual timescale for such things is 3-8 weeks.) What I wanted to do was keep going at 300 mg and see if the rash went away, but I just can't stand it, and it's too long until the blood test results will be back on Thursday or Friday. I really can't express what it's like to itch, itch, itch the whole time so that concentrating on anything becomes almost impossible.

So today I only took 200 mg. I figured that I'd have a couple of days of relative sanity before severe SAD and inability to use brain came back, which would be enough time for the purpose. I totally forgot about my menstrual cycle. Which would be why I've spent the past couple of hours sitting here reading fanfic on the internet and crying my eyes out.

ARGH!

Thanks to all who commented on my last post. Visit to the doctor yesterday [0] went extremely well, far better than I could have imagined. I have an actual diagnosis!

One of the reasons I like my GP is that he's ridiculously experienced in all sorts of areas of medicine. He has a "special interest" in psychiatry and knows more about psych meds than any of the psychiatrists I've ever seen, but he's also worked on other things as well. When he does eventually retire completely, it will be impossible for me to ever find someone else that good. He's involved in the training of the new kiddy doctors that come into the practice, but there are certain things that it's hard for a person to teach. He's probably the only doctor I've ever met who is able to totally adjust his way of relating to patients based on his perception of the patient's intelligence and knowledge. I managed to train him out of patronising me years ago, and we have interesting conversations about biochemical modes of action of medicines rather than the "this is how your lungs work" type explanation that I get from everyone else. (Sometimes, even after I explain to them that I have a chemistry degree and tell them everything they were about to tell me. Grrr.)

Anyway, it turns out that I have a really rare form of asthma. h-l is weird - we all knew that already, right? Turns out my lungs are weird too. What I have is called bronchorrhea (with optional extra o in British English), which means extreme overproduction of snot, where "too much" is defined as more than 100 ml per day. I laughed a lot when I read that online and looked at a fifth of my 500 ml bottle of water. That's about the amount I produce from cycling up a steep hill.

Bronchorrhea is a common symptom for 70% of asthmatics but usually only in severe asthma attacks that you're hospitalised for. Generally, the only people who get it on a daily basis have serious lung diseases like emphysema, chronic bronchitis, and basal cell carcinoma. Something that causes damage to the cells of the lungs. I'm sure I don't have lung cancer because I've been snotty like this since I was a baby. So I am just a freak. ( Read more... )

WHY are my doctors permanently obsessed with trying to reduce my asthma meds? My asthma is good BECAUSE I'm on the dose I'm on. It's not a shockingly high dose for a person of my age and size - in fact, it's quite a low dose for an adult.

I'm annoyed because a) I went swimming on Friday for the first time in ages, and for possibly the first time since I was at school I could swim into the deep end of a chlorinated pool and not run out of air and panic, which impressed me greatly; and b) the dose I'm on is still not quite enough for me to cycle up Kingston Hill without almost dying of a snot attack. I'm especially annoyed because my doctor decided to change the drug without consulting me, so I now have an inhaler containing a drug which stopped working for me when I was 19. My asthma is very much worse than it was when I was 19, so there's no way it's going to work. Gah!

It is officially the week with the crappest air quality in the UK. This is something that I, of all people, know only too well. In 2003 I wrote a master's thesis on the statistics of air quality, in which I analysed the hourly air quality reports from seven sites in the DEFRA air quality automated monitoring network over as many years as data was available. I looked at PM10 and ozone from all seven sites, and PM2.5 from the two sites where it was available. PM10 is primary pollution produced directly from combustion, specifically particles smaller than 10 micrometres; and ground-level ozone is secondary pollution, produced by photochemical reactions on primary pollutants in sunlight.

Today is Guy Fawkes' night, which commemorates the Gunpowder Plot. Depending on how you look at it, we are celebrating either the salvation of the British monarch from being blown up, or the plotters' valiant attempt to destroy the Houses of Parliament. I suspect which depends on your personal opinion of the monarchy and our British Parliamentary system. We celebrate by lighting bonfires and exploding fireworks. The celebrations generally last from the Saturday before Guy Fawkes' to the Saturday after - and this year, Diwali falls within this time, causing even more fireworks to be set off.

The thing about fireworks, and especially bonfires, is that neither of them are particularly good for air quality. Great quantities of PM10 and sulphur dioxide are produced by bonfires, as well as other noxious pollutants depending on what people choose to burn. (Plastics and rubber should never be burned on a bonfire.) The average urban level of PM10 goes up from 50 micrograms per metre cubed to well over 100, and may spike as high as 600. 100 micrograms per metre cubed is the warning level for asthmatics and other sufferers of respiratory diseases, greatly increasing the risk of asthma attack and hospitalisation. This increase lasts all week, and the weather becomes terrible as a result. PM10 are cloud condensation nuclei, which cause water vapour in the air to form as droplets. As a result, we get lots of mist and fog at ground level, and a lot more rain. Sulphur dioxide has an albedo effect that leads to cooling, and the temperature drops along with all the fog. It is unlikely that we'll see much sun all week.

I hate this week. I have to be careful about opening windows or going outside. I have to take far more asthma and allergy meds than usual just to function. The cooler temperatures and damp weather play havoc with my joints, and the lack of sunlight makes me want to crawl into a hole and die. The fireworks look pretty, but hardly compensate for all the rest of it.

On Tuesday, I went to see the new nurse practitioner at my GP's surgery for an asthma check. I obtained a new prescription, took it to the pharmacy, and exchanged it for three inhalers. This is very important in the story which is to follow.

On Wednesday, as I was packing my bag, I found myself entirely too low in spoons to estimate how many of each particular drug I should pack for a 10 day trip. (Some of my pills are once a day, some twice a day, some three times a day, some as and when required - way too many different variables to work out on not enough sleep.) So I overpacked everything - if I thought I'd need two strips of tablets, I packed three. In particular, I thought it was likely that my sodium cromoglicate nasal spray would run out halfway through the trip so threw another one into the bag, and I knew that my Flixotide inhaler was going to run out, as I take 4 puffs a day and it was reading "15". To put my mind at ease, I grabbed one of the new inhalers and packed it in my other bag, so that I'd have a Flixotide in each one in case one of the bags went missing. This is also very important to understand.

Last night I got back from the wedding and noticed the Flixotide I'd been taking was reading "3". By the time I'd actually taken it, it was down to "1". I was too exhausted and brainfried to figure out where the other inhaler was, but I told Richard to remind me I'd need it in the morning. Then I went to bed. For some reason, the room was hard to breathe in, despite it being supposedly a non-smoking room. We figured the airconditioning unit was dirty and/or blowing air from the smoking rooms into the non-smoking rooms, and opened the window instead.

This morning I woke up with my nose, ears and sinuses completely blocked, and head all foggy from not breathing properly. I spent 15 minutes clearing my nasal passages out with Olbas oil and saline and rebreathed my own exhaled air to get my carbon dioxide levels up. It was really important that I got all my allergy and asthma medication in correctly. Well, you can guess what happened. Couldn't find the new inhaler in any of the damn bags, and it's prescription-only, and I didn't even know for certain if the drug was available in Canada. Argh.

Cue the expertise of zedrikcayne's cousin Lorenzo, who is a local, who drove me first to a 24-hour pharmacy, and then to a walk-in clinic. It turned out to be the work of minutes to actually obtain a prescription for the inhaler (called Flovent in Canada) from a Canadian doctor. However, vast amounts of waiting around were necessary to get to that stage. It cost me CAN $50 for the doctor's time, and $41.06 for the inhaler, none of which I can claim back on my travel insurance, as it doesn't cover pre-existing conditions. And I was so lucky to have had access to a local with a car, because I'm not sure the hotel staff would have been able to help much at all. But we missed hanging out with nooks, annb and Henry, and caused inconvenience to geminigirl and zedrikcayne, and all kinds of inconvenience to Cayne's cousin, who was a total stranger.

I am eagerly awaiting getting home, so I can find out whether that spare inhaler is in fact sitting proudly in the middle of the living room floor, or if it did go missing in transit. Because if it's the former, I can kick myself, but if the latter, it's really not my fault.