My humour helps me cope!

[RD23]

I was searching on Pinterest for recipes for magnesium rich food and have discovered a whole host of asthma related quotes that definitely appeal to my warped sense of humour! (I find it helps) ‘You take my breath away. Well, it’s either you or my asthma’ 😂

Not sure if anyone else is the same, guessing they are but I deal with my asthma with a smile on my face and a good sense of humour! I find if I sit and ruminate after an attack it just makes me feel worse, although I’m not sure that me shrugging it off really helps my case with others but it’s my coping mechanism!

[Lysistrata Administrator Community Ambassador]

Lol I like to say I'd be a burglar/ninja/assassin if it weren't for my asthma. Everyone would hear me coming, I couldn't climb into houses or run from the police and all you'd need to do to stop.me would be wave some.air freshener or scented hand cream around

Can you share the quotes? May be dangerous of course I once nearly put myself back in A and E just after coming out, with a nice collection from Damn You Autocorrect.

[RD23 in reply to Lysistrata]

😂 the nurse said I sounded better yesterday after another neb and I replied, ‘yes, I don’t sound like an old heater anymore’

Yeah, they sound like occupational hazards! I tried to upload the photos but couldn’t, it might be me and my lack of technical ability 😂

[Lysistrata Administrator Community Ambassador in reply to RD23]

Someone at my old work sent me.a video of some hippos making noises and said it sounded like me when I was struggling. So true lol. My colleagues were pretty good there at taking the pissed in a good way and I I joined in - I much prefer that approach!

[RD23 in reply to Lysistrata]

Me too! I used to get called Wheezy after the penguin in ‘Toy Story’ and I’ve always done a great Darth Vader impression with my spacer 😂 it’s a case of laughing or crying and I’d much prefer to make light of it than sit feeling sorry for myself! Don’t get me wrong, I could after an attack and sometimes do, but it does me no favours and I soon bounce back!

[Js706 in reply to RD23]

My housemates and family all refer to me as “Mutley” - the dog from whacky racers because I sound like him when I laugh mid flare up😂

[RD23 in reply to Js706]

😂 it’s a good job us asthmatics are thick skinned!

It’s a much better approach though, I can’t stand being fused over!

The lead first aider at work has warned the others that when they have to ring my parents, my mum is very calm as she’s so used to it but to the point where if you didn’t know her you’d think she didn’t care! Must be where I get my approach from!

[Js706 in reply to RD23]

I just think you have to laugh sometimes and see the funny side! Otherwise you’d just be miserable all the time - which then can make everything worse!

My mum’s favourite thing is watching me try to eat soup in hospital (which they offer every day) as I normally either throw it everywhere or have to transport my spoon over a plate/bib 😂

[RD23 in reply to Js706]

Exactly! That’s how I deal with it or I’d never pull myself through it.

😂 I can only imagine, I’ve tried drinking a cup of tea in hospital with the shakes and nearly ended up wearing it😂

[Lysistrata Administrator Community Ambassador in reply to Js706]

I hope she doesn't sit too close and yes if we have to put up with it may as well get some entertainment!

RD23 Darth Vader is a role.model for all asthmatics

[RD23 in reply to Lysistrata]

It’s my party trick! 😂

[strongmouse in reply to Js706]

My recent stay in hospital for an unrelated operation wasn't such fun trying to use an inhaler in the same nostril I had a nasogastric tube! Ditto trying to eat soup and finding my newly grown mini elephant's trunk was in the way.

[RD23 in reply to strongmouse]

Not easy! Hope you’re ok now

[Lysistrata Administrator Community Ambassador in reply to RD23]

I also hate being fussed over! I find I have an increasingly black sense of humour to the point where I found it hilarious watching an F2 freak out over my ABG (he actually read a VBG as an ABG...which would be really not a good ABG considering the real ABG wasn't ideal once done). I also laughed madly (well as much as I could) when they got a malfunctioning machine to work in triage and my HR zoomed from 0 to 150ish...said (with difficulty) look I'm a Jag!

[RD23 in reply to Lysistrata]

😂😂😂😂 that’s brilliant!

I’m the same, ‘how are you feeling now?’ ‘I’m breathing, always find it’s helpful’ I also joked with the consultant before he sent me home about my hospital gown being ‘haute couture’ 😂 I think they must like it as they probably don’t get much chance to have a laugh and a joke with patients. The nurse yesterday said I could have some water as the neb has dried my throat up and that if I managed to drink it without choking it meant they’d fixed me 😂

[Lysistrata Administrator Community Ambassador in reply to RD23]

I had a resp registrar try unsuccessfully not to snigger when he took me on a walk round the ward to see how I was doing. I was wearing one of those pink nighties plus my black work shoes as had come.in from work. When I got changed to go home he said wow you look different lol. I didn't mind as he was actually lovely and listened properly, didn't judge me for being odd and was very sensible. The sense of humour helped - I wish they were all like that!

[Js706 in reply to Lysistrata]

Hahaha I love it when monitors go weird 😂 mine at one point decided to say I had a heart rate of 0 and sats of 18 and the nurse just looked at me sat up chatting like “you know...somehow I think the machine is wrong”

Definitely agree with the black sense of humour. When I exacerbated again last weekend the resp reg told me there was a fair chance I would end up ventilated if I didn’t improve by the time itu arrived and my first response after they left was to text my mum (sat next to me) that I was particularly annoyed I wouldn’t get to eat the tasty chicken bites she had just brought me if that happened 😂 priorities! 😜

[RD23 in reply to Js706]

😂 the only time I don’t eat or talk is when I’m having an attack! My mum often points out it’s the only time I’m quiet, well as quiet as you can be when you sound like Darth!

Thanks for cheering me up btw 😊

[Lysistrata Administrator Community Ambassador in reply to Js706]

I once got really pissed off because I didn't get to eat my takeaway - too SOB. Love your attitude!

Machines are fun. I once had one which claimed I was in VFib and wouldn't shut up. I felt I probably wasn't but was vaguely annoyed that no one had checked with that noise going on, as it was getting annoying!

[RD23 in reply to Lysistrata]

I had one that wouldn’t stop bleeping when I was waiting for my heart rate to come down after adrenaline! I did point out that hospital isn’t really the best place to relax and get your heart rate to come down, especially with a machine bleeping in your ear!

Thank you, sometimes when people aren’t used to me and asthma in general I can come across as being a bit blasé but I’ve had it for thirty years now and I’ve coped with it that way this far! It’s good to see we all have a similar coping technique. As I said to my mum yesterday, ‘sometimes you just have to suck it up buttercup’ 😂

[Js706 in reply to RD23]

Definitely not. My blood pressure is normally slightly up in hospital and they keep asking if it’s normal for me, and then thinking and saying “well I suppose it’s probably normal for being stuck on hdu on tons of medication” 😂

Yeah my mum decided I must have been unwell this time because I didn’t really eat anything for the first few days of admission - and it takes a lot to put me off my food (particularly being on pred since feb!!)

And thanks to you too for helping cheer me up! It’s nice to find other people with a similar attitude (I definitely get a bit blasé too sometimes)

[RD23 in reply to Js706]

Or when they comment how high your peak flow is, well yes, you’ve just pumped me full of drugs, one would hope it’s high or something’s not working! 😂🤦🏻‍♀️

Pred has the opposite affect on me, ruins my appetite, which takes a lot, and gives me heartburn every time I eat.

I’ve also noticed how I can lose two inches off my waist following a bad attack just from sheer exhaustion! Every cloud! 😂 I call it the asthma attack diet but few people get my sense of humour!

[Js706 in reply to Lysistrata]

Ahaha too right!

And yeah my machine has said that a few times on this admission too - although I’ve discovered that when the alarms are muted they won’t go off for anything at all - including Vfib etc, bit of a design flaw methinks!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Hmm yes! I hate the trap of the alarm - I have to move to turn it off and any movement makes HR shoot.up so then it will go off again!

[Js706 in reply to Lysistrata]

Yeah one time in a&e my housemate kept threatening to strap me down because it went off when I moved 😂

[RD23 in reply to Js706]

Definitely a design flaw! Any sign of them letting you go home soon?

I do think people totally underestimate what we have to put up with, one of my work colleagues emailed me and said ‘hopefully they’ll get you on the right medication soon’ and whilst I get the sentiment and appreciate it, it’s just not that simple! Triggers are triggers and I don’t think there’s much medication can do against humidity and hormones! As if being female isn’t crap enough sometimes! 😂

[Js706 in reply to RD23]

Depends how I do tonight, the aminophylline is being switched off shortly so we shall see! I think the nurse is a little stressed about how I’ll be as she knows me pretty well now 😂 but I’m on 2 hourly nebs between 6am and midnight (RIP sleep) so I still have 2 more to go that should tide me over!

If I stay alright through the night we can start thinking about reducing other stuff 🙌 although I’m meant to be starting my xolair on Monday haha, so I may well end up having that as an inpatient at this rate 😂

[RD23 in reply to Js706]

Hopefully they get you sorted soon, I’d be vile if I had to be woken up for a neb, I like my sleep too much!

Hopefully the xolair does the trick, I enquirer about going in it but didn’t qualify, something about the allergens in your blood?! 🤔

[Js706 in reply to RD23]

Yeah, it’s the IgE (evil allergy causing protein!) levels in your blood, matched against your weight.

At first mine were too high (or I think they were too high for the 4 weekly dosing, they don’t seem to be as keen on doing it 2 weekly here. Although they’ve given up with that for me now haha) but they had come down on my repeat tests a couple of months after.

They did keep trying to say that immunology had to deal with me first but then my consultant looked at the attacks I’ve been having this year and was like “oh god these are pretty bad aren’t they?!” 😂 just like “nah I just like to rock up to hospital for a week for the fun of it”

Being woken up is a little annoying but with the pred insomnia I’ve been awake every time for the last couple of nights anyway - and I’m definitely catching up on sleep in the day haha

[RD23 in reply to Js706]

😂 yeah the HALO at the hospital I go to keeps asking me how I am, ‘well, I’ve been better’ or you get the, ‘here again’ yeah I love seeing you just as much as you love seeing me, ‘cause an asthma attack and A&E are the highlight of my month! 🙄 sometimes it’s a good job I can’t talk when I’m having an attack, although I can’t do poker face so I’m pretty sure my face says it all! 😂

[Lysistrata Administrator Community Ambassador in reply to Js706]

Crossed fingers the reduction goes well! And you even get some sleep...are you wired up atm? Absolutely anything I do seems to make alarms go off so I hate them on the ward!

RD23 yes I think my work thinks the recent blip is a one off...nope they'll learn I feel! Though they do know more than most I think because of my industry.

[RD23 in reply to Lysistrata]

pin.it/h6zqndzowr64q4

[RD23 in reply to RD23]

Damn it didn’t work, still can’t figure how to upload photos! It says, ‘please excuse the crazy, I’m low on oxygen and sleep’ 😂

[Js706 in reply to Lysistrata]

Covered in wires! (Hence the muting of the monitor I think haha) I keep waking up strangled by the sats probe wire 😂 so it keeps doing the opposite of what we want!

[RD23 in reply to Js706]

😂 I shouldn’t laugh, but sometimes you just have to!

[RD23 in reply to Lysistrata]

Good point about the sleep, I’m not sure how they expect you too when you’re all hooked up, plus it’s always too noisy and light.

My work are good to be fair, because they know I have an underlying health condition they discount absences to do with my asthma. I just get the bitchy comments from people who just don’t get it and my mother colleague was just being nice but there is a lack of understanding there.

I do sessions to raise dementia awareness in my free time and often think there should be something similar for asthma and allergies. Maybe we should start our own campaign!

[Lysistrata Administrator Community Ambassador in reply to RD23]

My work have been very good so far though I don't get paid for sickness in probation come on lungs make it to September... My last lot were used to me but I haven't yet quite trained people here not to offer me water/not to spray things near me. Chatted to the person who sits next to.me about travel and life insurance - I think she hadn't realised how bad asthma can be until I said I was unable to get life insurance!

More awareness would be nice that it's a) not about a blue inhaler b) not just for kids c) can kill (and that the UK is not good with that) (oh and d) is not just about allergies - put the spray down). AUK do a lot but too many don't know it can have the impact it does when severe and uncontrolled.

[RD23 in reply to Lysistrata]

Yeah I don’t get sick pay for my first year, which I point out when I get the bitchy comments! It’s like, ‘I don’t do it just for the sheer hell and joy of it love!’ People and their ignorance drive me insane!

Ha ha, yes! ‘Well you just need a few squirts of your puffer’ 🙄

‘I know how you feel, I had asthma as a child but grew out of it’ 🙄

‘You can die from it? It’s that bad’ 🙄 it’s your breathing, what do you think happens if you stop?! I could write a book on all the daft remarks I’ve heard!

[RD23 in reply to RD23]

Oh and, ‘does it really affect you if I spray body spray’ squirt, squirt, squirt. ‘It’ll only make you cough’

[Js706 in reply to Lysistrata]

Thankfully my uni have been really good too, although I’m currently suspend and due to go back in a month or so (so I could really do without my xolair getting delayed!).

Even studying medicine I don’t think my housemates and friends realised quite how bad things can really be until they started seeing me mid flare up. Especially as a lot of people do have asthma on the course, but either just have a daily preventer or only a reliever.

Also more is needed on how to interpret peak flows! I’ve had people I know say my peak flows are the same

as their usual while I’m having an attack and then someone will point out that that’s great to know, but for me it’s only 30% of my normal 😂

[RD23 in reply to Js706]

Don’t get me started on peak flows! Mine is usually 450-500 and only ever dips to 420 when I have a cold so my specialist has told me it’s not a reliable indicator as it only significantly drops to about 200 when I’m having an attack, by which time it’s pretty obvious that my asthma isn’t right. Some doctors are just obsessed with it though, ‘if you blow 500, I’ll let you go home’ oh, look what I just blew, because I want to go home! 😂

[Js706 in reply to RD23]

Thankfully while my normal is about 450 too it is a pretty reliable indicator for me.

I’ve had a few doctors start talking about how they don’t think peak flow is great because it’s very effort and technique dependent. Then they watch me really really try to do a good one and suddenly decide it’s useful again😂

[RD23 in reply to Js706]

Funny that!

As if we’re all different? shhh, don’t tell anyone that all asthmatics are different! 😂 as my mum said yesterday to the nurse, some doctors I’ve seen are brilliant and are led by what I know works best, others don’t want to put the textbook down!

[Js706 in reply to RD23]

Haha no way!!😱

I also like that everyone has their own favourite technique. When itu came down I managed a spectacular 130, he then said how he wanted me to do it differently, tried again, he exclaimed how much better that was, took the meter from me.... 150 😂 they then conceded it was in fact perhaps the asthma and not my technique!

[RD23 in reply to Js706]

I know, shocking isn’t it?! 😂 best keep it to ourselves though!

[Lysistrata Administrator Community Ambassador in reply to RD23]

Ugh peak flows! Mine is not at all.useful as a raw number especially without context, because I get middling numbers when I'm fine at work and when I'm heading to hospital. I have finally worked out how it can be useful but it seems no one is interested in listening.

Made.to do a walk last time so they could chuck me out - very hard, post neb PF went from 500 to 350 after and they then said oh well you told.us your peak flow isn't reliable so that means nothing as sats are fine. But the previous reading was over 75% so you're fine to go. Grrr. They'd claimed to be listening earlier too. I told them it responds to nebs! And pretty sure not meant to.drop so much after a short walk.

I do feel the effort taken is more an indication sometimes. I do hate having a high best and people saying ooh wish I could get that! Will gladly swap lungs, would you also like my crap FEV1?

[RD23 in reply to Lysistrata]

Yeah, my mum said that! My nieces also used to have a story book of the three little pigs, complete with toy characters and house and I was the only one who could blow the house over! 😂 one of my finer moments as an asthmatic!

When I did the manitol test the technician doing it was explaining SATS and peak flows, as my SATS are always 100% and he reckoned that because I’ve been singing since I was little, I’ve trained my lungs to get good air flow. I can also do that test with the cloud really well thanks to my singing! My respiratory system has to be useful for something! 😂

[Lysistrata Administrator Community Ambassador in reply to RD23]

For some reason I am shite at performing spirometry despite singing and playing the oboe since.I was little. It's given me my epic best PF and used to give me better than normal spirometry but these days that's crap even allowing for the technique - and harder when struggling, though easier on portable . machines. I now blow candles out on cakes with difficulty and then cough from the smoke hehe.

[RD23 in reply to Lysistrata]

I don’t think I’ve had candles on my cake for years!

I generally avoid birthday cake as my OCD can’t handle the spit being blown across the cake that everyone then has to eat! 🤢 I don’t think I’m quite cut out for motherhood yet! 😂

[Js706 in reply to RD23]

I’ve been singing for ages which helps! It makes me very good at maintaining myself for a long long time without tiring (which has come in very handy!)

I recently had to go for a test to measure nasal FeNo (rather than the exhaled one with the cloud) and you just have to hold your breath for as long as you can until the reading flattens out. The nurse sat doing it with me kept staring at me and when I finished was like “blimey you’ve got some impressive lung capacity on you, I tried to join in but couldn’t last!” 😂

[RD23 in reply to Js706]

The respiratory physiotherapist told me one of the best things to do is sing and since we discovered I breathe backwards and have subsequently re-trained myself, I can now give it some welly from the belly when I sing!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Oooh FENO is the one with the cloud! I'm really good at that too though it's really hard work ugh. The first time the cons said oh you may.struggle as you seem.to have dysfunctional breathing too...well that pissed me off naturally so.I showed him I'm very good at holding my breath and maintaining even now, it's just the weird spirometry breathing I seem to struggle with. The physio stopped bothering with breath hold exercises when she said I lasted longer than she could!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Meant to say sadly I think a lot.of drs don't get what it's actually like to have any chronic illness...at least you'll have an advantage there! I hate it when they claim they get it then say something that indicates they really do not.

[Js706 in reply to Lysistrata]

Yeah it’s definitely been educational! 😂

I had someone taking blood from my foot (bloody veins!) say “sorry I know it’s painful” and I was thinking “hmmm you know I’m not so sure you do actually!”

It’s difficult because it is essentially how we’re taught to communicate with patients. But sometimes you don’t realise how it can come across until you’ve been on the receiving end, e.g told one of my friends about having had a completely silent chest and they blurted out that they would have been interested to listen to that, before realising how it sounded 😂

[RD23 in reply to Js706]

Yeah one doctor told me the blood gas test didn’t hurt! Ha, yeah right mate, I’ve had it before! The nurse did give him a look that said, ‘are you mental? Of course it hurts’ and I gave him one that said, ‘come here then and I’ll shove a needle in your wrist’ 😂

[Lysistrata Administrator Community Ambassador in reply to Js706]

I'm sure I would come out with something like that if I'm honest (silent chest not ABG). There is a reason I'm not a Dr... I can sort of appreciate it is tricky and I wouldn't want to have to do it, but there are some drs who so clearly think that ticking off a communication skills box is the same as actually listening!

[RD23 in reply to Lysistrata]

I think maybe when they do it every day they forget, but yes, I’m not very sympathetic and would probably tell someone to man up 😂

[Js706 in reply to Lysistrata]

Oh yeah I definitely would too 😂 and to be honest I also kind of wish I’d had my stethoscope on me to have a listen haha.

It’s very hard to get the balance between being interested in what’s going on and not treating people as a symptom!

[RD23 in reply to Js706]

Most definitely!

One of my friends is a paramedic and the first time he met me he told me I’d got good veins! 😂 I did point out it’s perhaps not his best chat up line 😂😂😂

[Lysistrata Administrator Community Ambassador in reply to Js706]

I prefer clinical interest to being treated like an idiot really! Usually if they are interested in me clinically it means they're more likely to pay attention to my oddiities and not patronise me/tell me asthma means wheeze.etc.

I did have to regretfully cut off an interesting but one sided conversation once with a resp reg who said I was a fascinating expert pt and wanted to know more. I indicated with a bit of difficulty that I would love to continue this conversation but it might be more interesting and more.equal after the nebs and mag he'd mentioned but not yet provided... hehe.

[RD23 in reply to Lysistrata]

😂 I bet they love patients like us! Yeah I’m not a fan of the standard, ‘so what’s been happen for today then?’ set of questions.

[Lysistrata Administrator Community Ambassador in reply to RD23]

I have my summary which was written to try and get past that. If they like that then it's a good sign. If they look at it like I've given them a used needle and then ignore it by asking all the questions it answers, it's never a good sign. I had one recently whose main question - not even meds - was why I went to an asthma clinic that wasn't the nearest to home. Key question in an attack I'm sure.

[RD23 in reply to Lysistrata]

I’ve had that question before, I’m pretty sure my doctor at the time recommended my specialist but they were the only one on the list that specialised in adult asthma.

[Lysistrata Administrator Community Ambassador in reply to RD23]

Mine is a specialist asthma clinic so obviously not an option in every hospital. I don't mind being asked but not as almost the only question and in an accusatory tone! She was very determined I wasn't having an attack and I have a lot on my summary about background and why I definitely do have asthma. Certain drs like to read it, ignore itnand say oh well this still isn't asthma whatever you think you had before.

[RD23 in reply to Lysistrata]

Some people just don’t like to be questioned or have their knowledge questioned!

[Js706]

Just went on a “celebratory” walk to the toilet without my drip. Now sound like one of the toys from Toy Story 😂😂😂 oops!

The nurse didn’t see me going and described me as “like a squeaky ninja”

[Lysistrata Administrator Community Ambassador in reply to Js706]

Lol brilliant phrase!

Ahh the walk to the toilet...sometimes I feel.we.should get a medal as it feels like running the marathon at times after an attack! I once argued and lost to not have the dreaded commode then nearly killed myself just with that!

[Js706 in reply to Lysistrata]

Yup! I mean I’m still doing pretty decent - when I first came in getting onto the commode and back resulted in a neb!

They keep telling me to stop laughing but I sound so ridiculous I can’t help it 😂

[Js706]

Sorry to hijack and rant on here but this is driving me nuts! 😂

Ended up back on the aminophylline last night. Felt better this afternoon so tried weaning my oxygen down to 4L from 8L (bizarrely no mask in between) - managed it for about an hour and then got tired out, boom sats down and back up to 8L 🙄 bloody lungs!

[Lysistrata Administrator Community Ambassador in reply to Js706]

rant away - sounds incredibly frustrating! Hope they start behaving properly for longer!!

[Js706 in reply to Lysistrata]

I’m just desperately trying to successfully reduce something 😂

It’s annoying with the oxygen because I definitely don’t need the 8L, but get tired out and drop on 4L - they must have decided to save money by not getting anything in between!

[RD23 in reply to Js706]

Rant as much as you need to, that’s what we’re here for. Hope they get you sorted soon

[Hidden]

Just found this site. When asked how long I have had asthma I tell them: I have had asthma since conception! Last time I was put in hospital for asthma the hospitalist asked me how I felt. I told him: If I didn't have to breathe I would be healthy! He dropped his steth laughing. It is a tradition at our house at Christmas to make a wish list. I only ever have one thing on mine. A new pair of lungs. My daughter told me this year she was sorry but Amazon didn't carry those!

On a more serious side I have been asked many times what it feels like to have an asthma attack. I tell everyone to get an empty paper towel tube, pull plastic wrap over it and poke a pencil thru it once. Now try to breathe! God bless you!