Asthma Bingo: It’s a game Js70... - Asthma UK communi...

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Asthma Bingo

It’s a game Js706, Lysistrata and I have played privately, but is a good, light hearted way to hear the ‘common’ phrases that get thrown at asthmatics so you know it’s not just you!

The rules are simple... add a phrase/situation you feel you hear/see from doctors, friends/family, other asthmatics, strangers or the media a lot... like the ones which apply to you!

It can be something that’s true or that’s a lie. Please state which if it’s applicable, and which group said it 😉

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Medics: 10 puffs of vent = 1 neb (technically true but almost every asthma will say it’s a lie, cause nebs work a lot better)

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Media: ventolin works immediately (false)

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Hi,

I must admit it works immediately on me but sometimes I do take a bigger dose to get a good outcome.

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Asthmatics: eosinophilic asthma is the worse phenotype (false)

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Public: it’s only asthma... (🙄🙄🙄)

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F+F: but you were fine a couple hours ago (false, I just wasn’t as bad as I am now so you didn’t see it)

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Medics: high HR is salb (usually false esp of over 120)

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Media: asthma attacks are always dramatic (false)

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Healthcare: But your sats are fine?

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Healthcare: Just calm down and focus on your breathing

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F+F: YOU’RE IN HOSP? Maybe you shouldn’t come to (extremely energetic activity in 4hrs time)... (🤣🤣🤣)

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Healthcare: your sats are fine so it’s anxiety not asthma (false)

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Medic: A rapid heart rate, asthma doesn’t do that (well it does for me and many others!)

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A&E: Have you tried taking your blue inhaler? (Nah just thought I’d turn up without trying that...)

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Also when you ring 999. No I thought I'd start this fun game all over again without trying inhalers and nebs...

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I hate that one. Have done nebuliser at home and still rock bottom so grudgingly drag myself to A&E and first thing they do is exact same nebulising I had done at home instead of what I say is needed by that point 🤔😳🙄.

When that and everything else they try doesn’t work, only THEN they listen 🤪

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I also hate this... I’ll usually do a neb before calling for an ambo then b2b in the wait... then the momentary good zone the ambo arrives and I’m Okish... them hum and ha about hospital, then I get worse they neb and take me in... I then get a repeat performance in a&e and eventually the docs listen to me and the fact I need more than nebs to stabilise 🙄🙄

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Medics: Do you take your medication? (Because apparently there’s no way your asthma could be uncontrolled if you take your meds!)

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Public: but only kids have asthma (false)

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Medic: well I have asthma and... (🙄🙄🙄)

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Medic/public: don’t you know how bad steroids are for you? (Yes... but they’re better then the potential alternative if I don’t take them...medics then up steroids anyway 😅)

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Asthmatic: I would be happy with a PF/sats level like yours

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Yes well and then just taking PF reading and not symptoms. I think female, 48 PEF is 420-430. My PB is 410 but the % idea is crap. I feel bad at 350, between 300 and 350 I'm struggling. 300 or below I need medical intervention

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My PB is 440 but i’ve sometimes felt well at 350 and terrible at 400. Had an attack at 300 which I “shouldn’t” according to medics (obviously I was a naughty girl for being ill when I wasn’t supposed to be)

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Medics: nooo you're not a freak (just after meeting me)

Medics, after hearing more of the backstory: well, I don't like to use the word but since you say it...😂

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🙋‍♀️🦄 Love being different, NOT! My G.P calls me weird everytime, im like o.k we discovered im odd the first 5 visits, you don't need to reinforce it 😂

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Last time I got 'oh yes you're the weird one who nothing helps'. Err the previous time she refused to treat me for asthma!! Got mag for HR...I said as nicely as I could no most things do help you just have to spot the odd presentation.

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Melanie. I know I shouldn’t laugh at times you have obviously been very ill but I do like your sense of humour.

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I have found humor the best way to cope with it, otherwise i think we would be permanently miserable!

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Yes, you have been cracking me up with laughter this morning!

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I find it’s smile and laugh or rock in a ball and cry... think you go the same way as me!

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I liked when I signed up to my new GP surgery... had to see a nurse (who happened to be a AN) to sort out my repeat (which a HCA has already made them book me a double appt for). She hears me coming, reads my med list, and I say how I’d probs be in hosp that night (predicted correctly). She rushes down the corridor and loudly says to my new (but not yet met) GP ‘I’ve got the worst asthmatic I’ve ever met... what should I do?’... I crack up, she tells me (from down the corridor) ‘stop laughing it’ll make you worse’ 😂😂😂. Way to be introduced to a surgery... I’m surprised they didn’t suddenly find they didn’t have space for me 😉

Luckily I’m more a zebra, don’t know how I’d cope as a unicorn 😅

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Love this story EmmaF91! Especially “stop laughing it will make you worse” Brilliant

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I always get told off for laughing too! 😂 there’s a couple of nurses I get on really well with who often work in resus in my local and I always seem to end up with one of them looking after me, which never ends well!

My favourite is always the heart rate monitor, which rather than just going for something like “very fast heart rate” flashes up “EXTREME TACHY” in caps when you hit a certain point. For some reason it always cracks me up, which then sends my heart rate even higher 😂

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OMG, I love that one too! I would be rolling on the floor with that one.

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I used to find the looks I got from doctors in resus hilarious... they went from chummy and friendly to glarey and grumpy or shocked and unimpressed when my answer to ‘how did you get here today?’ Was ‘BUS!’ 😂😂 (this was back when I lived a 5 min bus ride from the hospital and therefore was a LOT faster than getting an ambo)

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I always think it's somehow a good idea to use precious breath to tell it off. 'Oh shut up. SHUT up. Stupid machine. Be quiet. 160 isn't that extreme' etc. (ok I have a weird perspective now, my HR always misbehaves in attacks so I end up saying 'ooh 130 is fine don't worry' and when it's 160ish they freak out and tell me to calm down. Hello, who is freaking out here?!)

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Ooo. I do that too! ‘Shhhhh! Shut up... I said SHUT UP’ (usually followed by me finding a way to silence the machine myself 😂😂). I usually try to convince nurses/docs to up the boundaries so I’m less likely to be noisy!

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Yeah I always try to get that too. Last time they wouldn't and I had to press the button every 2 mins for ages. Problem is if it's anywhere not right there then the act of moving to silence it makes the HR go higher 😂

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Public, to me coughing: have a glass of water

Me (through coughs): thanks but it doesn't help

If lucky they will stop there. If not it will be 'are you sure you don't want a glass of water?'

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The paramedics tried this one on me! Changed his tune when i nearly vomited in his face 😂

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Ugh! I get people mean well but if I am coughing too much to speak I don't want to have to keep trying to explain.

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Recently I explained to a friend that it was better that I was alone when I had the asthma attack as I could concentrate on trying to breathe and get the Ventolin in. Not have someone banging me on the back or asking questions or making suggestions that I'm not well enough to answer.

Having someone to call the ambulance would have been good but at that stage they would have arrived too late if I hadn't managed to clear enough of my lungs to breathe. I do find having someone fussing around me while I can't take a breath extremely stressful. I need at that point to concentrate only on me and focus - and not have that focus taken away. It's only happened twice in my life (Thank God).

I do understand why people fuss - I would too - but I know that I handle it better on my own. I know what is working and what isn't.

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I'm exactly the same! I have luckily trained my colleagues to be a bit hands-off and not to fuss, but I'm choosy about who I want around (if I can be choosy). They don't ask me to talk or push water on me, and my immediate team also fends off these comments from others ('no she doesn't need cough lozenges thank you, she's having an asthma attack). After 2 ambulance incidents at work the whole team now knows mind you...

I also prefer to go to hospital alone though again colleagues were good when they did come. Only a few people can get it right and not fuss - I appreciate it's hard to watch but if they can't handle it it will stress me out more than the asthma feeling I have to be careful about not freaking them out!

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Public (and I suspect some healthcare): asthma never killed anyone (FALSE. SO FALSE)

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Yep.

(Old)GP: ‘don’t be so silly...asthma can’t/won’t kill you’....🤦🏻‍♀️

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Friends: “is it really that bad?”

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Public: I’ve never seen that type of inhaler before, your asthma can’t be that bad (and your got your medical degree from?)

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Healthcare: your obs are normal :goes on about HR being high: : records everything as normal when it is not/ records the split second good number instead of the worse number it mostly is.

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Public: it’s not like you’re disabled/glares when you use a blue badge (false - severe asthma is a hidden disability!)

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Man stared at me when I got out of the car and used my blue badge. Just stared back then said b$¢¥¥<<< lungs. He just turned away lol

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Emma you should tell them it is none of their business (if you can) Only a small percentage of those with blue badges are in a wheelchair

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Your chest is clear, must be anxiety. Or lets ignore the lack of airflow and call it clear! No wheeze, no asthma!

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Had this one too

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Healthcare: RR 18 (you count at same time and it’s 30ish)

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Oh my god yes. Recording it as it should be isn't going to set alarm bells ringing because the nurse knows that's normal for me. But recording it in normal range will enrage me because docs think the obs are always accurate. Er no they're not.

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The classic:

Healthcare/some public: asthma needs a wheeze! No wheeze no asthma! Nebs won't help you because they treat wheeze! Chest is clear so you're fine. No wheeze asthma is not a thing. (Etc etc etc)

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“Salbutamol/Ventolin only treats a wheeze” 🙄

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Medic: insists on using predicted PF not your PB

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Asthmatic: shake me I rattle (😂😂 so true)

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Public: have you tried... (some unproven thing they’ve read in a health magazine)

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Medic/public/colleague: you must be so scared! Anxiety is a key part of all asthma attacks.

Yes and no - people do, it's normal to be scared but also frequent flyers especially may not be. I appreciate the thought but dislike the assumption that everyone responds the same way (especially if they then start deciding asthma features are anxiety). Don't keep telling me I'm scared if I am not and say I am not!

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Medic: You can only have oral steroids if your PF is less than 50%. (At 50% I need more an oral steroids, I need an ambulance!”)

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Medic: Take deep breaths in and out... I can't! That's why I'm here!

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I get that one all the time! 🤦🏼‍♀️🤷🏼‍♀️🤣

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Public: my son/daughter grew out of their asthma... maybe you will too! (False At 27 I’m unlikely to grow out of childhood asthma... plus the whole thing about true asthma waxes and wanes over a lifetime but never completely disappears)

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Yeah I thought I'd grown out of mine so I didn't have an inhaler at uni (and looking back I did have episodes and it was still there. I was lucky, but at the time so very clueless about asthma despite having it from age 7). Then swine flu came calling and I became a freak.

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I thought I was out growing mine, until I caught pneumonia. Now I am on Seretide 500 (moved from Clenil 100) and Montelukast. I had severe asthma as a child and I believe that puts you at a higher risk of reoccurrence later in life (i’m in my late 30’s). I’ve been pretty clueless about asthma. I’ve been a sufferer since I was 3. I don’t think anyone really sat me down and explained it all. It had just “always been”.

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All asthma is the same (so, SO false)

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Followed by comments that suggest all triggers are the same (again, nope. Please send over your cats to keep them away from the person turning blue over there, but keep your essential oils away from me. And no, stress does not trigger everyone!!)

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Absolutely! "You're asthmatic and have cats? And they're in your bedroom???!!"

Well yes, animals are one of the few things that DON'T set me off (happily for me)!

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Healthcare/public: exercise more... it’ll cure your asthma (false... it may help but as someone who was national level in 2 sports when diagnosed with asthma (and 4 as a child) it doesn’t stop asthma from appearing)

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'Paula Radcliffe has asthma! [insert names of Olympic gold medallists] have asthma! You can do it too!

I don't see you, non-asthmatic member of the public, winning any Olympic gold medals. Also there is a big difference between well controlled asthma and poorly controlled severe asthma.

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And top athletes can “shop around” to find a really great asthma specialist. Us mere mortals have to take what we are given!

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Public/medics/media etc: You should get rid of your pet (without bothering to check if you’re actually allergic!)

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Yes!! I just commented similar to this above

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Public/healthcare: have to thought about moving to the coast?

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F+F: you’re so noisy... we can easily locate you wherever you are... shhhs (in both joking and not so much ways)

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Yep, in cubicles at the swimming baths "Hiya ***" They haven't seen me, just heard me coughing :'D

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It’s how my sisters find me when we’re out shopping😂🙈

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Anyone during a attack:have you tried your inhaler? 🙄

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F+F: nicknaming you Muttley, Darth (Vader) or Wheezy (penguin from Toy Story) (had a uni tutor think he was so original when he called me Muttley... I then informed him it had been my nickname for a year or so... he was most upset he didn’t think of it first 🤣)

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I was handed over as “Miss Wheezy” in A&E the other day 😂

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My ex boyfriend used to call me Muttley after I had a bad wheeze at his house and didn’t have my salbutamol. Thought it was a great joke. Please note the ex bit.

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🤦‍♀️🤦‍♀️🤦‍♀️. I was named so due to my Muttley laugh... we all found it amusing. This situation no so much!

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Yep I have a Muttley laugh at times - even more so when I had no voice :-D (separate but long-lasting problem)

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So many familiar comments but my favourite.

Medics

Your chest is clear so no infection its just your asthma.

As if to say if you were infected we'd be more worried but because it's just asthma it's not that bad/nothing to worry about.

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Yeah I've had that. 'You don't have an infection'. Yes I know...I didn't come here thinking I did. Would you like to get on with treating what I did come for, since the trigger doesn't really alter the need for asthma treatment (it's just I'd need abx too if it were infection).

Had a cons try to say infection was my only trigger. Er, no. It does set me off big time (also viruses) but I'm very lucky to not get that many, so no, I have plenty of other triggers. Had more than one cons try to tell me what my triggers are and assert that some of the ones I mention are not real.

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A&e doc (to a very experienced asthmatic): let me check your PF/inhaler technique. Makes you change PF technique that 3 other hosps and multiple docs (including spec hosp asthma Cons) approve of. You score lower and they record score the original high score, or they’re disappointed if you score the same...

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Any doc: Do you know how to use one of these? (Handing over PF meter, ignoring your list of asthma admissions)

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My own cons did that. Blow 350 (best 630). Oh you're doing it all wrong. Do this. Still blow 350. He then tries to send me home because I'm fine (that's 56% personal best and I still find it hard to get to the bathroom, could you just cool it please?! 'Why do you want to be in hospital?')

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Healthcare: I wish everyone did their PF like you do (standing, good seal on mouthpiece, deep breathe etc etc) 😇😇😂

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Doctors 1934, "It's Asthma, but he will grow out of it in 7 years". Now nearly 87!

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Asthmatics: general competitiveness about who is worse!

Yes some are worse than others but being supportive of others isn’t difficult... asthma sucks for us all, whatever the level of it, we’ll all have our own issues!

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Healthcare: PF is the best (and only) way to measure severity

Healthcare: PF doesn’t matter at all

(Both false. For some PF is a great indicator, or others it sucks! We’re all individuals guys!!!)

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Emma, it’s the same issue with sats;

Medics; your sats are ok so you’re fine!

My sats going up and down between 97 and 87 like a yo-yo! Medic “take a deep breath!!” To which even with a little breath it microsecond bounces to 97 then immediately slides again, but the nurse saw it read 97 albeit briefly so that is what is written down! This does not show the true picture! 😠

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Yep my oxygen is always perfect when sitting up but proven in testing for OSA my Sat's bad lying down

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This does my head in too. Mine always say 97 or above the instant the probe goes on then settle in a few moments to what they are. Good people take the most likely reading. Annoying people say oh they must be 98, the probes aren't reliable.

Same when they fluctuate massively and constantly. (Glad that's not just me though.)

Then you feel like a hypochondriac or something when you mention that it's not right.

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Grrrrr twinkly29, that one winds me up too ...... when it suits them, they say the probes aren’t reliable, however they put so much store on them as if to use the info like a stick to beat us with!

Excuse me medic, but I have absolutely no idea how to make my sats go up and down like that, but they often make out as if I am intentionally doing something 🤪🤷🏼‍♀️x

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The most reliable reading is whichever one suits their theory/plan it seems (cynical, moi?) Ok I admit some can change based on data and A and E I have found better at this than resp consultants and medics but still grrr.

Not sats but had an eyebrow raise during recent A and E visit when Dr said 'don't move around, you said it makes you worse and I want to discharge you.' So clearly the concept of, you know, taking that into account when deciding on discharge is a foreign one here.

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Yep, my PF is almost always good cos I'm a woodwind player. I can blow a good PF and then spend the next 10 minutes coughing but because my PF is good "oh your asthma is fine"!

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Yep this is how I have an epic best of 630 (predicted 470) - played the oboe for years. My peak flow is only useful if you look at how it responds to Ventolin, not the raw number so much. I can maintain it at 60% even in my worst attacks (then I'll have a less bad attack - still admission but not my worst) and it will be 240. Given up trying to.work it out).

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Friends /colleagues : you are always ill.

Me: yes i have a chronic illness

Them: but you where fine yesterday

Me : sure maybe i looked fine...

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Random a&e consultant who looked in the cubicle: you just need to slow your breathing down

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Friends: the doctors should have sorted you out by now/they should be doing xyz....

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I get this ALL of the time, so annoying!

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Doc you're overbreathing . Doh I was 75 when I got asthma and don't know how to breathe differently

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Such a good game Emma! There is just so much fodder from everyone! Made my evening reading through these! 🙌🏻😆

A couple to add that I have quite often had;

Medics in A&E, with cardiac monitor on and constant alarming as it can’t pick up my breaths as they are so tiny “lets get rid of that noise” and they silence the alarms and walk off! What’s the point of a monitor without taking note of alarms?

Medics when you can barely string more than 1 or 2 words together “now tell me what brings you to A&E?” Then when you can’t talk they continue to ask more and more open questions despite pointing to the template you’ve taken in 🤦🏼‍♀️🤷🏼‍♀️ x

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I’ve got a similar one. Sitting in GP’s office wheezing loudly and GP opens with “so what do hope to get out of today?” (Ummm ooo i’ll have to think about that one, I know how about you treat my wheeze!)

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🤔🤣🙌🏻 x

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Healthcare: *looks at you weirdly whilst you crack up in majors/resus*

Me: *waves whilst bouncing and still laughing* ‘gotta love the hydro/neb high’ 😂😂😂

Healthcare: ‘well it’s nice to see a smiling face in here occasionally’ 😂😂

(I used to have nurses/docs who would come by just to say hi, cause they found me amusing... esp my laugh... one told me that whilst they didn’t like the fact I was back, it gave them a lift in other ways)

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Extended family and friends, notably in Sweden:

“Why are you coughing/so breathless/whatever?”

Me “It is my asthma”.

The other person: “Oh” in a bored voice. Then starts talking about weather/anything/whatever instead.

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GP: oh you sound really bad, let me just...

Me: NO! I mean yes I’m not great but I’m not letting asthma hijack yet another appt!

(Just cause I’ve got dodgy lungs doesn’t mean the rest of me falls in line and works perfectly! 😂😂)

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GP: “I can’t hear a wheeze, so it must be anxiety”

Me: “Take a look at my IgE’s from my last immunology appointment”

GP: *backtracks, then picks up the BNF and asks me to take my pick*

Me: 🙄

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F+F: oh you've still got that cough/oh you've got a nasty cough...

It's not "a cough", I'm not going to give you anything 🙄, it's asthma!!

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Yes! I used to do 10k races (stupid I know!) and then I'd spend the next 3 days coughing!

The caretaker in my first monday morning school would back away from me covering his mouth & nose no matter how many times I'd tell him it's asthma I'm NOT contagious!!!

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Chemist (many years ago) :- How are you going with the new CFC free Ventolin?

Me: Fine. (It was zipping through my blood stream but I still has asthma) Why?

Chemist: Some people are having trouble. Scientists think it is because they aren't breathing it in properly.

Me (Thinking): Asthmatics don't know how to breathe in properly? They've spent years concentrating on getting the next breath. This sounds weird.

After thinking about it a few days, I tried the old medihaler and within a week my asthma which had got systematically worse over a period of ten months, went back to normal and I then moved on to the powdered form - Ventolin rotacaps. Have never looked back.

When scientists blame the patient - an easy off-load - and don't look any deeper, I get sceptical.

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Actually said by a (previous!) Doctor: Maybe your breathing would be better if you lost 10 pounds (4.5 kilograms)?

Ah, if only...

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Yeah the consultant said to me mine was because of my weight / made worse because of my weight I said that's funny I lost 2 stone and then it started maybe if I gain 2 stone it will go away again? .... he giggled but I think he got the point... i am now 3 stone lighter than before it started and its only gotten worse

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Precisely! I acquired asthma when my weight was perfect for my height and frame. Over time, I gained a bit, and the asthma improved. Dropped the extra few pounds, the asthma worsened. Had the same question as you for the doc. Methinks they sometimes grasp at anything, including patient shaming, because they don't have answers

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My asthma nurse, “I have asthma and don’t use my inhalers.....but you should.”

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Im on a respiratory ward at the moment and one of the nurses said the same thing. I would have thought that they would be hyper vigilant working in this environment but apparently not

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Crazy isn’t it. I know at the moment I couldn’t go without my Seretide. It’s keeping me upright!

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I have given up on upright. Far too much like hard work!

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People who dont get asthma at all: its just a cough you'll be fine..

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One particular acquaintance (won't call her a friend!): "you have asthma? you must have mould in your house"

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Medics: (about my well known severe brittle asthmatic soon) Yes, he is wheezing, but he always wheezes, he is running around (thats what 5yos on large doses of salbutamol and steroids do), sats are fine, so he is fine, you can go home.

Cue - 2 hours later back in with reduced air entry both sides, low sats and multiple nebs/magnesium administered.

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A&e seem to struggle with the idea that early treatment saves lives and is a lot less stressful for everyone... plus common sense can be a myth in some docs...

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But your sats are 95?

(Me with no or reduced air entry) No wheeze so your ok to go home

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(I was having mild/moderate attacks every other day and my GP was being very difficult)

ME(in the middle of an attack in obvious distress) I don't know what to do to stop this happening all the time!

F&F Don't do anything, just ignore it

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Strangers: (well friends parent who was a headteacher of primary school)

*me: 16yo struggling with asthma at a sporting event* “I’m not sure if I can compete”

*her to my mum: ”such a fuss about asthma...should be grateful she doesn’t have cancer.........”

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OMG! Who says things like that!

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My team mates mum apparently... god help any asthmatics in her school

And yes. It was said in front of me so I heard

Also had an old coach/colleague ‘laugh’ at my spacer and tell me I was attention seeking cause I used one when in the audience of a sports comp... I was 19/20 at the time looked at her, sorted my self out and then went into a graphic description of why using a spacer helps ALL asthmatics... she didn’t apologise and I felt embarrassed when I next needed to use it around friends (who basically ignored it which was great 😂)

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This was just before a kid died in a school cause teachers refused to give ventolin/call for help until it was too late...

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I just have no words

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Other asthmatics:

”I have asthma, you just need to go for a walk round the outside of the building, fresh air will sort it”

...on a cold day with snow on the ground....

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Oh the classic 'I have asthma, so...'

Then you find their inhalers go out of date and never get used. Tbh even if they do actually have asthma bothering them and take preventers/get symptoms etc it annoys me when people try to say they get it when they clearly don't, and you can do xyz because they can. Had a cons like that ughh.

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Medics: 'the average best peak flow/whatever for someone like you is X, so it's not possible to be any different from that.'

Guessing you slept through the stats lectures at med school then? Even GCSE maths students are meant to know how averages work!

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A&E medic:

‘let’s check your PF after this neb, it’s a good way to measure how you’re doing’

*gets a low score/haven’t responded the way they wanted*

‘oh that’s fine...PF means nothing anyway...you can go home’🤔🤔

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