10 THINGS NEVER TO SAY TO A BRITTLE ASTHMATIC

[servewithmintsauce]

1. "Aren't you worried about all the meds you're on?"

Not if it means I can breathe, no!

2. "You should try x inhaler, that's what I use."

I already have.

3. "*I* have the flu but *I* still came to college.."

Yes, and I hate you because of it!

4. "Just calm down and focus on your breathing."

…what breathing?

5. "Ughhhhh I have this cold I'm so ill I'm literally DYING…"

a) no you aren't. b) no you aren't, and c) no you aren't.

6. "*I* only need a blue inhaler…"

Well, lucky f---ing you.

7. "But you look fine to me."

Wow, you have such fantastic powers of observation(!)

8. "Have you tried…"

YES.

9. "OMG LIKE NIALL FROM 1D?!?!?!"

No, nothing like Niall from 1D.

10. and last but by no means least, "Oh, it's just asthma."

I don't think it's 'just' anything. It's 4 inhaled meds, 2, 2, 3, and

4 times a day respectively. It's tablets in the evening. It's not

being able to hang out with college friends because of people

smoking. It's having to skate away from a drill like a cop-out

to use your inhaler while everyone else works hard. It's telling

complete strangers or new friends or people who hate you not

to use their e-cigs in the bus/train/rink because the vapour so

easily could land you in resus. It's flu jab and pneumo jab. It's

popping out 8 tablets a day for a week or three every couple

of weeks to take down the raging inflammation in your lungs.

It's nebulisers that taste like sick and make your hands shake

so badly you can't even write a number. It's midnight trips to

A&E because your bronchi and bronchioles have closed up so

tight that no air can go in or out. It's testing your lung function

4 times a day at least. It's working your ass off at ice hockey

only to end up back in the hospital and back to square one.

It's hospital stays in your summer holidays, or hospital stays

when it's nearly Christmas, or hospital stays which mean you

miss a stack of work. It's doctors. Nurses. Nurse Practitioners.

Specialists. Consultants. Pharmacists. Meds. Meds. Meds.

It's knowing that your immune system could so so so easily

kill you.

It's not 'just' asthma. So don't tell me that.

***

Anyone any to add? I was thinking of doing a post like this on my blog, because I have quite a few posts I am slowly working on but I need some quick stuff so that on the off-chance that anyone reads my blog they don't get bored!

[Tracey1972]

My sister in law just like that tell me to breath normally when I used to live at home and I was having a attack really annoyed me still does when people say it to me

[servewithmintsauce in reply to Tracey1972]

Gosh yes. They're all like "look you're panting" or "you're panicking" or "you're hyperventilating". I know I'm panting, that's what 'asthma' means. Sometimes I will be panicking because I can't breathe…but I've learned to stay calm so 'panic' isn't a factor. And I know I'm breathing fast, but I'm not ventilating properly anyway, and right now while I'm still breathing is the important, nay crucial, time.

That's probably one of the ones I hate the most!

[Emmajayne75]

Omg that just made me lol, been struggling for a few weeks now and totally get these, got to add my favourite from the gp 'ur brittle and we need to be extra careful with u but I don't know what else we can do' Urm great well if u don't know how the hell am I meant to! Thanks for giving me a chuckle xx

[servewithmintsauce in reply to Emmajayne75]

Yes! Or "asthma can be very severe."

Like, I know..I live with it...

[Hidden]

Well said.

[Hidden]

You don't have to be a brittle asthmatic to get seriously annoyed by some of these. I've encountered a few of these over the years; the last one in particular always gets my hackles up.

[servewithmintsauce in reply to Hidden]

True!

Yes, I think that's definitely my most despised comment, alongside people being snarky about how *they* managed to do x, y, and z despite being 'ill' so why can't I and all that.

[servewithmintsauce in reply to servewithmintsauce]

Actually on second thoughts I still think the people who irk me the most are those who sit next to me in class and complain about how they're "dying" and how I have "no idea"…nah mate it's they who have no idea if they think 'dying from a chest infection' means 'being able to get up out of bed, come to college, come to class, work, cough, and breathe'.

[lejaya in reply to servewithmintsauce]

Hey

this really gets to me to, Im having it with a mate at the moment actually who is complaining about having a 'cold' for a week, I would love to just have a cold and a week would be a miracle for me. I am also currently unwell at the moment and would love to just have a cold and not need endless antibiotics and pred.

[servewithmintsauce in reply to lejaya]

Ugh yes. I get that it sucks having a cold for anyone but really, they don't know how good they have it!

[Emmajayne75]

Oh another favourite of mine 'well take it easy for a few days and u will be fine' Urm yeah causes its really that simple

[servewithmintsauce in reply to Emmajayne75]

Yes! Or "oh stop milking it", "no-one has a cold for two weeks", or "if someone still can't go back to school after a week then they should be in hospital" (insinuating that I'm making it up, otherwise I would not be at home, for example!)

[Hidden]

'...so it's perfectly possible to do swimming/middle distance running if you're asthmatic because this Olympian has managed to do so". Er - what about those of us who are allergic to chlorine, or who struggle to run a hundred metres without bringing on an attack?

[TheOriginalSim in reply to Hidden]

The amount of times I have heard that one. It just makes me laugh because they're clueless 😂. 'Oh yeah that's cool that blah blah has mild asthma and is a marathon runner in the Olympics... But you see I don't have mild asthma.. I can't even run 10m without dying ' - my response throughout high school.

[servewithmintsauce in reply to TheOriginalSim]

I'm lucky in that my ice hockey teams and coaches are all really good with me. I'm also one heck of a stubborn sod; I keep getting knocked down or pushed back to the start by asthma but then I go back and back time and time again to ice hockey, despite the cold and exercise being triggers. Idk, I'm probably crazy!

[hb1977]

I love this; they are all so true! I'd like to add the 'I can't hear a wheeze so things can't be too bad'!

It's my pet peeve; I only wheeze when not too bad; when things are really poor I have no wheeze!

[servewithmintsauce in reply to hb1977]

I only left that one out because I was compiling a more general list..but I never wheeze, yet I get a lot of the "oh your chest is clear it's all good".

I say I never wheeze; I do wheeze but only when I'm having my allergic reaction to latex. Other times? No. No wheeze. I hate hate hate hate hate that one! Thanks for showing me I'm not alone!

[twinkly29 in reply to servewithmintsauce]

I get that from doctors in hospital. The usual ones, and good but "random" ones like at weekend, don't obviously but many others do.

[hb1977]

It's a fab list! I forgot about the 'chest sounds clear'! Another pet peeve! I often want to reply 'that must be why I feel so well and have a peak flow that is 48% of best'!!!

[servewithmintsauce in reply to hb1977]

Actually that's brilliant XD I might do that next time someone says "oh your chest is clear, that's good" despite me telling them a hundred times that it means nothing either way!

[TheOriginalSim]

No. 7. Literally don't think a day has gone past without me hearing that one in the past 16 years. People just don't understand unless they see it. Would be good to add to your blog because I think most of us with more difficult asthma can relate to it..also might educate some people from our point of view

[servewithmintsauce in reply to TheOriginalSim]

Yes, most definitely. It kind of merges with no. 10; people say "oh but it's just, like, a cough, right?" because that's all they see. They don't see the meds. They don't see the endless doctor's appointments, or nurse visits, or clinics, hospitals, specialists. They don't see the jabs, the avoidance, the hospital stays. They don't feel the tight chest, the pain, the fear..yeah. They don't see anything beyond a cough and a puff or two, usually.

[TheOriginalSim in reply to servewithmintsauce]

If only there was a way to show them.

The guys on my college course have seen me going into an attack before and just asked if I was okay to which I shoke my head down to..they just walked off and left me.

[servewithmintsauce]

ADDITION: "At least you can't die from it."

Discuss XD

[Hidden in reply to servewithmintsauce]

Going on from this point - an alternative to your response for number 1 "Aren't you concerned about all the meds you're taking?" Yes, but the alternative is dying.

[servewithmintsauce in reply to Hidden]

Good one!

Although one to which I would undoubtedly get a response along the lines of "oh for goodness' sake you'd be fine/you won't die/you can't die", or "oh give over"..*sigh*

[Emmajayne75]

Ah yes got to love the 'ur not wheezing' Hmmm u can only wheeze when ur getting air into ur bloody lungs lol, I also have to add 'if u avoid ur triggers and make sure u take ur medication proper u shouldn't have such problems' really? Take my mediation properly? Omg i would have never have thought of that! And what if ur triggers can be the air temperature has changed? I will just go round in a climate controlled bubble shall I? oh dear uve gotta laugh... unless that sets ur asthma off then u probably shouldn't do that either

[servewithmintsauce in reply to Emmajayne75]

Oh THAT must be it(!!!)

Yes, that's up there with "have you tried snorting ginger" and similar ideas..

[Hidden]

Nailed it on the head it's nearly Xmas I'm in the Brompton but it's only asthma !!!!

[servewithmintsauce in reply to Hidden]

That sucks mate, I hope you're out for Christmas Day! Is it looking that way at all?

[Hidden]

Brilliant! Am not brittle but can still relate to them all.

Also hate "your breathing seems ok now so why are you still off work?" - because I am too exhausted to get out of bed.

[servewithmintsauce in reply to Hidden]

It can take a long time to recover, can't it are you ok now?

[Hidden in reply to servewithmintsauce]

Yes is taking an age! (thanks for asking). I was feeling brighter last week and got a bit over-excited about it so took my daughter to school on thurs and fri, and to really push the party boat out, I picked her up from school as well on friday. Have just spent the weekend comatose in bed, feeling ghastly and trying not to be furious with myself.

Have just had a text from a work friend "didnt see you at any of the christmas celebrations - are you still feeling a bit poorly?" Aaggg!!! Not roaring at my friend - she is wonderful - but the term "a bit poorly" really winds me up!!! Maybe another one for your blog? I have had that so many times!!! When I came out of hospital work emailed: "sorry you are feeling a bit under the weather, please make sure you send in your lesson plans!" Hahahahahahahahahahahahahahahah!!!!!

When are you going to publish your blog? Its really great, and as well as being useful info its also been great to read and not feel isolated or alone, as well as have a good laugh in whats been a pretty gloomy time! I am assuming you are a student? Can you put it on the college website/intranet?

[servewithmintsauce in reply to Hidden]

I compiled the top 20 yesterday in an extension of the original list, and published it on my wordpress blog which can be found here:

atopicalblog.wordpress.com

There isn't much right now as I'm still working on some posts but hopefully by tomorrow there shall be a good amount of content

[servewithmintsauce in reply to Hidden]

"A bit poorly" hahaha XD Yeah don't we wish that were the case! Aww no, I've been missing a lot of Christmas festivities this year as well, after 12 days in hospital and not being at college since then…going back tomorrow but it's not easy.

My blog has various parts to it. It's about living as a teenager with Atopy (asthma, allergies, and eczema) and has some features which will become regular now I'm out of the hospital (Tuesday Newsday etc.) as well as the occasional rant, updates to my conditions, resources such as videos, TV programmes/episodes, music, art etc., and an info page on each of the three components of Atopy and how they affect me. I also have 1 longstanding feature called 'One of those Lives', based on the Brad Paisley song of that name, which I aim to do each week; this looks at something maybe in the news, or an experience or something which has made me put an aspect of my life into perspective. I think I did one on Cystic Fibrosis not that long ago, for example.

-- Matt

[TaurangaSue]

I've also had: "You must stop using that (blue inhaler) so much, you'll get addicted" ......

[servewithmintsauce in reply to TaurangaSue]

I smell BS XD I hope you smelt it too and told them where to get off! Politely, of course..

[starveycat]

I was told I do not breathe correctly , how can you breathe correctly when your lungs are completely ✴✳✖❇ doh !

[servewithmintsauce in reply to starveycat]

Oh gosh yes all the people trying to tell you how to breathe.."iiiin..ooouuutttt" gooo awaaaayyyy is what I would say to them if I had the breath to do so!

[Hidden]

You know, this reminds me of a thread on the old list, some responses to which had me in stitches. I think it was something along the line of "Things you'd love to say/do to your doctor/consultant". I can still recall (with a grin) the suggestion of one, obviously frustrated sufferer who would have liked to put a (presumably less than understanding doctor) in a tightly laced corset and then set him/her to run four hundred metres:-), in the hope the doctor would then understand better what the sufferer was going through.

[servewithmintsauce in reply to Hidden]

Careful, I might take that idea on board XD

[servewithmintsauce in reply to servewithmintsauce]

If you can find that post, would you link me to it?

[Hidden in reply to servewithmintsauce]

I don't know if I'll be able to. I. can't remember any of the names of members who posted on that thread - let alone the one who started it. I'd only just joined the forum (about eleven months ago) when I found the thread, and I was browsing through the various different sections - you'll remember there were four. There was, I think, one headed severe asthma (though I could be imagining that) and I think I found it there. There were quite a few contributions to it, as I'm sure you can imagine:-). It was either there or under the one for topics not asthma related (though why it would be under that one escapes me). I'll keep an eye out for any names that I might recognise from it.

[servewithmintsauce in reply to Hidden]

Thanks! Yes, I remember the old forum..I liked that there was a special area for severe/brittle asthmatics to talk about stuff that just related to us, but I'm not sure whether I prefer that, or the current system where everyone and anyone can contribute..I guess I probably like them both equally!

[Hidden in reply to servewithmintsauce]

Is this the post you're looking for?

healthunlocked.com/asthmauk...

[servewithmintsauce in reply to Hidden]

Yes! That's brilliant XD thank you admins

[Hidden in reply to servewithmintsauce]

Yup, that's the one - or something very similar. But having had a quick glance I also remember chuckling at the breathing through a straw suggestion:-). Many thanks for finding it admin.

[Hidden in reply to servewithmintsauce]

I'd forgotten about the fitness one (you're just unfit). I've certainly fallen foul of that one before now.

[servewithmintsauce in reply to Hidden]

Yeah, that's quite a frequent one. Sure, I'm not the fittest specimen of the human race but I'm working on it and most certainly fitness is NOT a big factor in exercise as a trigger for me.

I did have someone before ask me if I was 'sure' I played ice hockey...no, of course I'm not sure, I must be dreaming 3 times a week..(!)

[Hidden in reply to servewithmintsauce]

These days people know better than to say that to me. Most people know I do ballet, or they find out very quickly if exercise is mentioned:-). Actually, I got a very nice surprise a few years ago when I was transporting/supporting my elder son (not asthmatic) to cross country events. Whilst I was waiting for one race to finish I got talking to someone who had a friend in the same race. When she discovered that both my husband and my son were in the race, she asked if I did any running (inevitable I suppose). When I said no, and explained that I was an exercise induced asthmatic she responded not only with understanding and sympathy, but she also said that doing cross country would be just about the worst thing I could do. When I then told her I did ballet, she nodded and commented that that would certainly keep me fit. Turned out that she was connected to Bath University's sports Sciences department:-).

[servewithmintsauce in reply to Hidden]

Hey that's brilliant and I had no idea you do ballet! I attempted ballet for a term when I was younger, and I wasn't terrible or anything, it just wasn't my thing..although watching ballet is something I wish I could do more often! It certainly is an excellent form of exercise, a bit like swimming (not all asthmatics have trouble with chlorine) in some respects.

Yeah I had a nurse who said "oh you should really be doing some exercise. It's not that hard once you get going." I wouldn't have minded but for the latter part of the sentence, so I just glared at her and said "actually, I already do. I walk a lot at college…"

"Proper exercise!"

"…and play ice hockey twice a week, and have skating practice 1-2 times a week."

"Are you sure?"

Uhhhh…yeah, you know, just a little bit..

[Hidden in reply to servewithmintsauce]

It's the stop start nature of ballet that works so well for me, though I'll admit I've had to use ventolin in class for the past two weeks and today was feeling tight after just the barre session despite taking ventolin before the class began. Fortunately the first exercises in the centre were fairly gentle and my teacher (who's well aware of my asthma) paced the class after that so I could cope (it's a one to one class). It's also good for another condition I have - my collagen's a little too elastic, I'm hypermobile; the ballet strengthens the muscles supporting my joints.

The chlorine issue seems to run in the family. My father (not asthmatic) had to wear goggles and a nose peg whilst swimming, or he got rhinitis, as does my younger son (asthmatic) who can also have breathing problems resulting from it, as can I.

[servewithmintsauce in reply to Hidden]

Ah I see yes ballet is excellent for strengthening joint muscles My cousin has EDS and I was considering suggesting ballet to her :/

Maybe it's genetic? I don't have trouble with my asthma and chlorine (although to be honest I haven't been to a swimming pool in a few years, so I wouldn't necessarily know!) but my eyes and skin were very sensitive to it.

[Hidden in reply to servewithmintsauce]

I was diagnosed with benign joint hypermobility syndrome/hypermobility type EDS last year. Believe me, it explained a lot of problems I've had over the years (other than those caused by the asthma I mean).

[Triggerina]

I was recently told by someone that they understood how I felt when having an asthma attack........because they got hay fever sometimes.

Someone else told me to get some Tunes cough sweets to stop me coughing so annoyingly! (My lungs favour coughing over wheezing generally) .

Also told by a G.P.'s receptionist, when trying to get an appointment as my peak flow was sliding down, that surely next week would do as its only for asthma!

Guess we all have to keep plugging on trying to educate one person at a time!

I am lucky and do not have brittle asthma.

Hoping you all are able to breathe reasonably well over Christmas and into the New Year.

[servewithmintsauce in reply to Triggerina]

What an uneducated receptionist! I would've been fuming >

[Triggerina]

I was...... Complained to GP . Been Ò.K. since.....hopefully for everybody not just me!

[Emmajayne75]

These are great, and much needed today as I've had another bad day, keep them coming xx

[TuckBox2]

I once phoned my GP surgery at 9.00 finally got to see a Dr (not my usual Dr) at 11.40, he said take my salbutamol 5 times its as good as a nebuliser. I said look at my notes and check my asthma plan from the hospital. I said I'd take myself to A&E and let them know what he said. Only then did he nebulise me and gave me steroids and anti-biotics as per my AP. - (He has now retired)

Since then if I can't see my Dr in 1 hour I take myself to A&E or dial 999 if I'm really bad.

Thankfully since being on Omalizumab injections I have not been hospitalised for 2 1/2 years.

[servewithmintsauce in reply to TuckBox2]

Wow!

Even without such a clear action plan for you, that's still incorrect. Yes, in moderate exacerbations, *_10_* puffs through the spacer is usually as effective as a neb, but in severe, life-threatening and near-fatal attacks, that's bull and by no means is it ever 5 puffs! I'm glad he gave you the right treatment eventually but grrrr!

[Emmajayne75 in reply to TuckBox2]

Wow that's bloody disgusting! What a twat of a gp! Glad ur currently well

[Janien]

Gosh this is a busy thread, fun reading though!

My annoyance is when people take offence that you can't go round their house cos of severe cat allergy. No, it's not that I don't like cats.......

Someone said to me Monday who is having a Xmas eve get together at their many cats present home..........." Can't you just take anti histamine"

Really.........NO! I said, it's asthma I have, and she looked at me blankly!

[twinkly29]

Thankfully my GP surgery is fab. Sometimes they literally call 999 and then make the paramedics take me to my hospital not the one they say is nearer but isn't (except to their ambulance base!)

I get "make sure you get properly better this time".

Also, " it's about time the doctors sorted you out " - yes because they've just been pretending all this time!!

Ooh I did get a nurse on triage in a&e saying "ooh brittle...that sounds like it might break". Erm yes in a sense I am breaking. No, ignore my good SATs. No, I should not be in Minors and I don't " just need a set of obs because I'm a little short of breath" (she said that to another nurse having shoved me in minors - as soon as the critical care nurse spotted me I was moved and she took over!!)

[Alliecat]

or just calm down! arghhh.. that makes me more angry! lol.. or "your asthma can't be that bad!" ummm do you see me walk outside a lot in winter? NO!.. do you see me use a nebuliser? NO!.. cos I do it indoors when you are not around....."at least your not in hospital often".. that's because I try to keep it in control which is not easy at this time of year.. and I tend to stay indoors most days so I don't get too many colds.. and I don't go out that often for the same reason.... ughhh...