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What I wish I had known (and what I have learnt through trial and error!)

Asthma is a learning curve so here’s what I wish I had known from the beginning! In no particular order:

1. Asthma is different for everyone. Obvious now, but starting out to me asthma was asthma - a blue pump fixed it and a brown pump prevented it. Now I know all the different types and severity, and that everyone gets different symptoms! Not everyone has allergies, not everyone wheezes, not everyone finds that pred helps! Some people only need a blue pump, others need a mountain of drugs.

2. It’s normal to be tired when ill so take time to recover after attacks/hospitalisation. For a long time I would be in hospital one day and the next at uni/coaching. This usually led to a relapse within the week, or a very tired/emotional Emma! I know to take time out to recover after each attack so that it doesn’t happen again!

3. Don’t ‘wait it out’ - my asthma worsened whilst at uni. As a 20 year old, I would just see if it would calm down by itself, waiting months before seeking help even if I was over-relying on my ventolin. I now know the soon it’s treated the less likely it is to get severe and the quicker I’ll get over it!

4. Don’t be afraid to make a fuss - keep going back to the doctor if you’re not well. Just because they’ve seen you for 10mins does not mean they know what you’re going through. If you’re in hospital and don’t feel safe to go home, don’t let them send you home! Usually you know your body best and better 1 night more than 10 after another bad attack.

5. You can still have attacks whilst on steroids - I always thought this was a fix all, until my PF dropped 50% despite being on high steroids (and a lot of salbutamol - went to my GP because I thought they could do something 😅 - they sent me straight to hospital

6. It’s important to take all your meds, but not all you meds may be working - don’t stop taking them without approval, but try to work out what is/isn’t working for you. I managed to stop 3 different drugs after we worked out they weren’t really helping that much!

7. Doctors can be wrong (even specialists) - They see you for a short amount of time and ‘judge’ you. I presented at my specialist hospital completely asymptomatic so I didn’t have asthma, they took me off 90% of my meds and sent me home. 1 week later massive infection and asthma attack, made to wait til specialist appt (2 months)to get my old meds back - panic and melt down when I had my appt and admitted for 5 days hydrocortisone therapy - never has so many apologies from docs and nurses!

8. Different hospitals have different criteria for ITU or admission. My old hospital had a tiny itu and no HDU, so to get a bed there required intubation. My new hospitals itu is bigger so a life-threatening attack with lingering symptoms (or borderline intubation) sends you there (or to HDU). Now I struggle to answer ‘have you ever been to ITU?’ - not at my old one, but under the new hospital I would have been several times!

9. You don’t have to let asthma control your life - you have severe asthma, but their is almost always a treatment that will help (biologicals etc). Don’t be afraid to go out with friends if having mild issues, don’t miss social events you’ve been looking forward too unless you really have too. Work when you can, rest when you need!

10. Peak flows are personal. Yes there’s an average, but if your best is higher it doesn’t mean you don’t have asthma, and if your best is lower it doesn’t mean you’re unfit or very asthmatic. They’re a lot of factors affecting what your best may be. Just work it out and look up your red/yellow boundaries - ignore everyone else’s!

11. Asthma plans are important but can go out of date - A change of meds - new plan, a new best PF - new plan, a change in control - new plan. Always remember to update it when needed and give/put in relevant places (school/work/fridge etc)

12. Colouring in your PF meter is helpful - when I’m ill I can’t do maths so PF can be interesting esp when I have the shakes. Easy solution - colour in your PF meter (green, yellow, red, black) so when you blow the zone is easy to see as the pointer is ‘in’ the zone. It looks Rasta but every doc whose ever seen mine loves it, as it also makes life easier for them!

13. An ‘emergency’ sheet is essiential in attacks - I have 2 double sided sheets. It shows my personal details, diagnosis, meds, allergies, past medical history, steroid/antibiotic history, hospital/a&e trip history, my consultant info and when I last saw each, and what brought me in that day (when it started, what I’ve done treatment wise, who I’ve seen/spoken too, PF/ventolin measures and times, symptoms). This way if I can’t talk they have everything they need and I don’t have to repeat things or remember all the drugs that I’m on!

14. Home nebulisers are frowned upon but a godsend - yes I have one, no my consultant doesn’t like it! I know there’s the potential for abuse to avoid hospital so come up with ‘rules’ - mine are 1 neb see my GP, 2 nebs go to hospital. Also don’t let the hospital abuse it! I’m often sent home early because I have one at home, or I’m told to self-medicate on it my with no time restrictions - I once lasted 6 weeks of 2hrly nebs and 40mg pred before I gave up and went back to the hospital (they had told me they couldn’t do anything for me 🙄).

15. Taking to people who understand helps - I went 2-3 years of multiple severe attacks before I found this site. I felt so alone and no matter what I said my friends and family didn’t understand. Even the medics and asthma nurses only had a vague idea. Now there’s people on here that I can talk to in similar situations to me, some are better off, some are worse - but they all understand and can support me at my worse or give me advice/prompting when I’m trying to avoid hospital!

16. Just because you’re severe doesn’t mean you always have life threatening attacks, or if you’re mild doesn’t mean you can’t! - an attack is an attack, anyone can die from asthma if you don’t get the right treatment

17. An exacerbation is the same as an attack, however usually indicates poor control and a worsening of your asthma. My first few attacks I didn’t identify as such - I used my ventolin more and more but that was just because my asthma was slightly worse... I didn’t need hospital did I?! If it’s caused by a cold than I’m just time wasting getting emergency treatment- it’s a cold. I always reasoned it off, and didn’t recognise my lack of control. At the time I didn’t have an asthma plan and had never done a peak flow either!

18. There are a lot of ‘undiagnosed’ asthmatics - I got pumps at 13, but didn’t get diagnosed officially until I was 22/23 and need referral for biological treatment- this delayed referral for 3 more months!

19. Asthma can be more scary for others than for yourself - I’m a calm soul, if I don’t think I’m literally about to die I don’t worry about it (and usually by that point I hit the ‘unnatural’ calm. If I’m in resus, why should I panic?, if things go bad they have meds there to help me. I lift to the ED is faster than getting the ambulance, so my PF is less than 50% I don’t feel too bad so why make a big fuss. Anyone with me tho freaks out. Family, friends, coworkers, bosses, doctors! Always being told off for making my own way in!

20. The most annoying phase is ‘calm down and take deep breaths’ - as previously stated I usually am calm, but telling anyone to calm down is only gonna stress them out more! And I can’t take deep breaths, I’M HAVING AN ASTHMA ATTACK AND MY LUNGS AREN’T WORKING PROPERLY!

21. Good sats does not mean no asthma attack - Just because your sats haven’t changed doesn’t mean you’re only having a mild attack. Even doctors get confused about this 🤦‍♀️

22. Pred head is a thing - steroids and the love hate relationship asthmatics have with them! Not only do you have to worry about long term effects, but also the short term effect on your mood! I get moody, teary or angry for no reason. I have cried over hot chocolate, and yelled over being asked if I’m ok. Explaining this to family and friends tho helps them understand that usually you don’t mean what your mood is suggesting - come back in 5 mins and I’ll be back to normal!

23. It’s ok to cry - don’t bottle it up, don’t be ashamed. You’re in a difficult situation, pumped full of drugs that effect your mood, in hospital not sleeping properly, and possibly nearly died, maybe you’ve just realised your now classed as disabled, maybe you haven’t slept through the night for a couple of months. Physically and mentally a lot has happened in a short amount of time and you have to adapt to it. So cry and let it out!

24. Not everything is caused by asthma, but everything is blamed on it! - tachycardia - it’s the asthma drugs, high blood pressure - it’s your asthma, palpation/shakes - too much salbutamol, reflux - it’s from the steroids, migraines - probably from the drugs/stress, easy bruising - it’s the pred... on and on and on. Very little gets followed up as a different issue, so you’re just treated for the symptoms not knowing the true cause - your asthma or something else? I’ve been at sinus tacky for years (minus the occasional drop) it’s always blamed on my drugs and never followed up. I can be dizzy and have palpations even when my asthmas good and I’m in minimal drugs... do I just ignore it? Sometime you need to fight for more investigation

25. Your PF doesn’t have to drop to be having an attack - you can be having issues even if your PF doesn’t suggest so. This is one of the most difficult types of attack as doctors just wont believe you unless they know you. Best thing to do if this is your ‘normal’ to is get a letter explaining from your consultant and hand it over if you ever need something more!

26. Spacers are important - not only do they make you more efficient at picking up the drug, but they can also reduce some off the side effects. Always getting oral thrush - try using a spacer! Get very shaky from your blue pump? - spacer! Preventer make you gag? - spacer!

27. 9x/10 orginginal meds’ work better than the generics - they’re more expensive so docs like to try you on generics but I get a highly different response from ventolin than I do from any alternative!

28. CFC does make a difference even if they say it doesn’t - it’s less environmentally friendly but it can double how much my improvement lasts!

29. Exercise is important (as and when you can) - it’s always difficult as a severe uncontrolled asthmatic to work out when to exercise and how much to do... I find I push the limit too far if I’m well but do nothing if I’m ill - I’m still trying big to work out a balance. Alternatively take up singing (in the shower if your ‘bad’) or a musical instrument - at least then you’re helping your lungs stay fit, even if your body gets fat!

30. Find the right drugs for you - keep going back until you feel your best, if you struggle with MDIs (aerosols) then ask to try DPIs (powders) - it took me a year of telling them MDIs made me cough and feel sick before they gave me dry powder inhalers - I didn’t even know they were an option at the time! Tell them if the side effects are too bad for you to deal with, even if it’s helping you breathe - there are usually alternative brands that you can try which may not give you any issues!

A nice round 30 points (until I think of something else 😅)

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I absolutely love this.

Reading 22 and 23 made me burst into tears (definitely emotional tears from the pred and sleep deprivation) but god, sometimes I feel like such a drama queen for wanting to cry. I just want to scream my face is like a moon, my 4 year old could dot to dot the spots on my face, I haven't slept properly in months, I'm surprised there's any blood left in my veins, I am now technically disabled and I just want a bloody break - and a really good sob.

Thank you for writing these. It's nice to know we're not alone.

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Oh Amber, I know exactly what you mean! Luckily I’ve managed to avoid the moon face (I’ve got the big belly), and my spots tend to stay on my torso although when I up to 40 they move to my face 😒. I have difficulty getting cannulated due to scar tissue and poor veins, however bleed heavily once they give up cause of the pred - it’s very frustrating!

Sleep even evades me when I’m well now... I’m not even sure if it’s the pred or just a habbit... oh it’s 12-1AM/ 3-4AM it’s time for your inhaler 😒😴. I only sleep through after hospital (if I don’t flare up again), but luckily as I have no dependents I can sleep the next day away if needs be. It’s the every night wake ups which are a struggle and people don’t understand how tiring it is to wake up gasping a couple of times a night - they always say ‘well I often wake up and I’m not that bad’ 🙄

I’m often hugged by hospital staff who know me as they’re the ones I tend to cry in front of - they understand it’s the pred but they know it’s about all the emotional support they can give whilst my condition is so uncontrolled.

Applying (and receiving) a blue badge was a big thing for me. I spent years kidding myself that I wasn’t that bad, then 3 different docs told me to get one, and finally accepting that I was disabled shattered me. I was 25 and an ex-national gymnast/trampolinist - to go from that to struggling to walk 100m was difficult. I cried once I accepted it and even now get emotional thinking about the past (tho I usually blame the ‘roids!).

Let yourself cry (either at night or when your little-lys not home). It’s cathartic (so long as it doesn’t trigger you!). Also have you a support network at home (friends/family) who are willing to help relieve some of the stress/help out when you’re ill with food/baby sitting etc? How about other severe asthmatics (who you can physically meet up with and let go with?) - actually talking (not typing) can help a lot esp with people who know what you’re going through!

You’re welcome - These are all things I’ve had to discover by myself with no support (didn’t discover this site til later 😔) but letting others know saves them the experience, and supports those also going through it! I’m sending you hugs through the network. 😘

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oh I have the swollen belly too, and the ridiculous bruising on my legs and arms (aren't steroids just delightful 😭). I know the feeling! I had a blood test after the hospital and they blew a vein so even more bruising - it's definitely frustrating!

Yes I get that too! I think our bodies just get used to it after a while don't they! For the first time ever I woke up at 2am needing my inhalers and before I checked my phone for the time I was praying it was 7/8am so that I could just get up and not have to keep waking! Oh I hate that, "well I woke up with a cough actually so I know the feeling" 🙄 I've been sleeping on 3-4 pillows to see if being propped up helps, but then I get neck cramps so it just doesn't end.

That's lovely that the hospital staff are like that. Honestly, I feel as though the most support I get is when I'm admitted. I've had staff sit with me whilst I sobbed because it just all gets too much, there's not much they can say but just having them there is a help in itself.

That is what I'm most afraid of. I'm in the process of applying for some kind of mobility support, as walking is becoming a task and money isn't too great having to take so much time off work after attacks. So hoping maybe some support towards a car will be a step in the right direction but it's just the realisation that at 23 I'll be officially classed as disabled. Oh I'm so sorry, i can imagine it was - you're bound to still get emotional about it, it's difficult when you're life just gets turned around when you feel as though it should only just be beginning.

I don't have the biggest support system, a lot of it comes from my sons dad and his family. I couldn't fault them at all for everything they do to help me. Whether it's ringing constantly during the day to check up on me, helping out with my little boy, to bring me some of my favourite foods or just to cry on. Because I'm so young I feel as though my friends are still at the point where they want to go out and have fun, which most of the time I'm not well enough to do so I don't like to burden them. I never thought about that and I wouldn't even know how to go about meeting other severe asthmatics that live near me! Have you ever met up with any? If so, how did you go about meeting them?

It certainly does, thank you so much. Sometimes it's nice to know there's someone else out there that gets it, whether it's through typing or not. Sending them right back 😘

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Yes the ‘inpatient’ nurses are excellent, especially after you’ve been in a few times. I’ve lost my hospital support network once I moved back home, but since August, 4 a&e trips, 2 admissions and 3 nights in, I’m already starting to build them up again. Last week one nurse made a point to come and talk to me, whom I had met previously. My GP practice is still learning about me but 8 (I think) appts with 4 different docs, another doc ringing me, 2 set of nurses giving me emergency nebs, and the other my flu jab - I think I’m making the gossip rounds quickly! 😅

I’m glad your sons family is supportive and can take the pressure off you a bit!

The only severe asthmatics I’ve met was in hospitals, usually at my xolair injections when I had to sit and wait for 3 or so hours. Starting mepo on Tues tho so hopefully I’ll have someone to chat to then! Had 1 I used to meet up with frequently (met him at the local and used to keep each other company in a&e), however when I was diagnosed as ‘not asthmatic’ he stopped talking to me so 🤷‍♀️. I don’t know any in my area atm, but I have only just arrived in it so 😅

Sometimes I get chatting to people on here and think about how great it’d be to actually meet up face to face - maybe at the asthma UK choir concert or something?

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Yes they start to remember you don't they. I had that a lot this time last year, they remembered as I was always the youngest on the respiratory ward. Oh god, August as in last month?! Sometimes I think they should just give us a permanent bed/room. Oh wow, a lot of involvement - at least you're giving them something to talk about 😅 from August last year to December I was hospitalised 4 times for a week at a time, 2 resus visits (for one I was code red in the ambulance on the way up there), 18 A&E trips and so many GP visits with emergency nebs I lost count. One of those times I managed to persuade them to let me out on Christmas Eve (stupid flu!) and so far since the end of August I've had 2 A&E visits, 1 ambulance journey and 5 GP visits - they're gonna be sick of seeing my face by December 😂

Oh are you looking forward to starting mepolizumab? I've just had my 5th injection - no positive results as of yet but it can take a year to work so I've been told! I bet that was nice to have some company with someone who had common ground! oh well, only using you for your asthma - how rude 🙄🤦🏻‍♀️ well fingers crossed you meet some at your first mepo injection, the wait around afterwards is painful 😅

yes that'd be great wouldn't it! a room full of people who would get the random bursts of tears or the slight furry beard on a female from pred 😂 where are they usually held?

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Yes all those trips since this August (plus 2 appts at specialist hosp) 😅😳 - blame the heat and a chest infection, plus dust (from moving home) paint (parents redecorating after a car hit the house - everyone ok, house still standing, but cracked in every room 😳) and lack of biological (xolair gave me hives and angioedema 😒). They will get fed up with me soon I bet! 😂

Yes, that how my dad found me on the ward - ‘I’m looking for Emma’ ‘who?’ ‘The asthmatic’ ‘oh the young one... yes I know where she is’😂. I swear everyone on resp wards are 70+ when I’m there!

I lost count with it all when it hit ridiculous territory! Countless resus, a&e, outpatient treatment, nights in etc etc. Avoided ambulance as hosp was just round the corner and the bus was quicker (I know, I know, I’m always being told off for it 🤫🤭🙈) tho now hosp 30 mins away so maybe I’ll have to change that 😢.

Yes looking forward to mepo, I was meant to have it last Friday but was in hospital on antibiotics so it got cancelled 😒. Well hopefully you’ll start to see improvement soon - I defo had improvement on xolair until the reactions- still needed a lot of ‘extra’ meds tho 🤫.

Yes we’d be a great bunch! This year it’s in London - seems to be the main place things are set. Luckily it’s basically opposite my specialist so relatively easy for me to tube too! X

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Oh my god, I hope that it all calms down from here! yes I can imagine all those factors aren't the most helpful! A car hit the house?! Id ask how on earth that happened but I think we've established people's idiocy (presuming) 🤦🏻‍♀️ I'm glad everyone is ok and that the house is still standing. Fingers crossed when mepo starts they won't have to see you as much!

Hahaha that's one way to find you! they are aren't they!? I usually ask for my own room because I can't bear to look at the elderly patients that just look so helpless, I almost put on an apron and started feeding one once, she just looked so lifeless so I always request my own room straight away and because they know it'll be a long stay they usually give me one 🙄

It's ridiculous isn't it, feels like it's never ending! the bus 🙄 I can see why they told you off! I drove myself in a few times (when I had a car) and then regretted it when I had 7-10 days worth of parking to pay 😭

Oh no, sorry about that. Have they told you about the breathing tests and stuff on the day? That was the bit I was dreading most as every breathing test I've had I had to stay for a neb afterwards or it had to be stopped as I'd (unknowingly) broke a rib from coughing 😭 I had triamcinolone for a few months before I started mepo alongside everything else.

Yes I thought it would be! I live a fair few hours north to London so it'd be a long trip for me! That's handy! X

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Me too! Currently trying to kid myself that I haven’t woken up feeling like I’m ill again 🤫😶😣. The (sports) car hit the house because the driver had undiagnosed (early) dementia- she didn’t crash the car, she hit the break and sped up!

Yes, and 9x/10 with COPD. Then you’re compared to them constantly cause the docs for get they’re different conditions! I usually end up as an extra nurse if they’re demented ‘Guys, she’s pulling out her cannula again...’! I try to avoid private rooms as my hospital has no internet and no TVs so you go stir crazy as you see less staff. The only time I had 1 I had a bad experience and I suspect that on a bay I would have got more help (they had cancelled my salbutamol nebs less than 24hrs after questioning an ITU admission).

Hey - I’m better now - I get lifts from people (only cause there isn’t a direct bus link) 😅!

I’m assuming mepo with have the same requirements as xolair - spiro and PF on arrival 🤔. Ouch - luckily I’ve so far avoids rib fractures! 🤞🏻🤞🏻🤞🏻. I’ve never had triancinolone, but used to have 3 days of hydrocortisone (100-200ml +/- mag bag and lots of nebs) most months (in outpatients to avoid a&e) - I wonder it this would have been a better option - in new hospital now tho so systems isn’t in place😕

That’s a shame - everything always seems to be London based 😫. I hope you managed to get some sleep and have a good day talking to work/union and job hunting! Good luck 🍀😘 x

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This is really good! Thank you :-)

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Thanks! If it helps stop 1 person having to ‘learn through experience’ then it was worth it (tho this morning spotted all the typos/grammar issues 🙈 - lesson - don’t write an essay on a phone with a pred head!) x

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I can so relate to the symptoms all being asthma/asthma drugs! Also attributed to the constant general anxiety that comes with dreading another exacerbation of asthma. At least we know we are not alone!

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I know! Once you have a diagnosis that’s all that they seem to be able to see 😒!

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Excellent loved this 👍🏻

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Thank you ☺️

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Love this, almost comforting to see other people describe what goes on physically and mentally, although I hate that other people have to suffer too.

The last one got me, I’ve had years and years too if the ‘it’s because you’re asthmatic’ now a lot of the ‘symptoms’ have been left too long and damaged other parts of my body, long term and I’ve got a specialist in almost all hospitals departments lol. It’s so frustrating isn’t it!

Take care xx

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Oh no Amy! I hope they get the rest of you sorted - it’s frustrating enough when only your lungs don’t work properly, let alone if everything else joins in in the action! I’ve had so many ECGs, all show sinus tachy, but nothings ever done about it... even if it is asthma-related surely they should do something to stop damage?!

That’s what I was aiming for, let newbies learn from my experience so that they don’t make my mistakes, let oldies know it’s not just them and that they are not alone!

Look after yourself x

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Oh yes - I'm not that bothered by the sinus tachy but I find it a bit weird how they make such a fuss while I'm in but then never follow anything up! Also, for the millionth time medical people, it is not just the drugs!!! Do not use that as an excuse to.kick me out when I know it means my asthma is still playing up!

Amy that sounds rubbish :( hope they are.managing it better now.

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I know! Every time it’s ‘oh your heart rate is very fast, we must get an ecg’ then it’s ‘well it’s fast but regular’ - I only get concerned when I get other symptoms (dizzy, chest pain, palpitations etc).

Then they also worry about how my pulse jumps about on the monitor - it can go 126, 107, 135 in less than a minute - but they never do anything nor advise me to do anything 😒.

Yes - they need to look at the full picture at discharge, not just the small things that they can use to get rid of you! All an early exit means is a faster return 🙄

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Yep or.me feeling horrible for ages but not enough to justify going back so then I tell myself they were right after all. Last time was like that ans they would not listen to.me and said it was emotions, despite them acting against guidelines. But I assume they would consider they did the right thing as I didn't bounce but have been having smaller flares since and getting worse day to day...which I have just realised has been happening more or less since then, hmmm.

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Thank you so much for your piece. It’s so helpful and informative. I was only diagnosed with asthma, cough variant type, three weeks ago and an still struggling so found your information extremely helpful. THANK YOU

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You’re welcome! Sorry to hear about your recent diagnosis, hopefully they’ll get you in the right combination of drugs to keep it controlled!

Look after yourself x

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Great summary - I’ve had asthma since I was a baby ( now 60!) inhalers were not available until I was 7 years old and as a result I have quite a bit of permanent damage. I would add to your list - keep active. I used to run in sports days with my inhaler in my hand, I took up XC skiing in my 30’s and am now Nordic walking.... all at my own pace but m6 consultant says I am a great example of how to keep my lungs fit. The air in Norway is soooo clean it’s brilliant and since I started I’ve improved...

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Hi sorry to hear the long term damage you’ve got 😞

Yes keeping fit is important- exercise when you can! I have a stupidly high PF when I’m well mainly because of my sporting history - unfortunately now I’m ill almost more than I’m well so struggle to find the right balance of enough but not too much - I find it had to pace myself - it’s all or noting 😅.

Oh how I wish I was in Norway right now! X

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This was great reading and really helpful. Totally agree they blame everything on asthma, i’ve been really itchy all over been told well thats part of asthma. Will be pushing for further investigations.

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Thanks. Yes I think it’s a bigger problem than we know! Definitely get that itchy-ness looked at further! Good luck x

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Thanks for this! I've been telling myself for ages I just need to put up with my instability because it's part of the uncontrollable asthma - and not bothering to tell anyone when once I would have because I feel that whole 'well I'll just be told it's asthma but not bad and they can't do anything.' Needing nudges to get me out of that as it is hard, and I so often compare myself to people who are worse and then think I shouldn't complain (eg I recover to 'safe'levels reasonably soon, if maybe not as soon as some.medics think, so can leave hosp which makes me feel like it wasn't that bad even if it was at first, then try to do too much. Bad idea all round - glad to hear not just me!)

Also, will be at carol service (with a friend I.met through the forum years ago in its old version).

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I was just the same - ignore, ignore, ignore! Then when I started going to my GP they refused to refer me to a consultant (despite me taking 3 months off uni because of asthma and needing weekly nebs that would only last the day if that!). When I finally played the system (went to hospital at night = admitted = consultant appt - before is struggle through til the morning) my hosp asthma nurses panicked with me and almost immediately started the process of specialist referral. They gave me all the drugs, but I was still ‘difficult’ and often scored 7-9 on the ACT 😳. I just learned to put up with interrupted sleep and the wheeze and the constant ER trips for severe+ attacks.

Now that I’ve tried xolair, I know that I can be completely asymptomatic! I can forget I have asthma, even during times I know would have triggered me previously, so now I have less tolerance for my condition. I learnt to live at 50% function at one point so didn’t notice a drop until I was very bad, now I notice a drop when at 60% so it’s slowly improving!

Yes I know quite a few people worse than me (even my old self 😅) so don’t tend to complain or make a fuss when I am struggling, hence why I need prompting to get help sometime (case in point last week 😳). And I’ve learnt to refuse discharge from a&e until I’m 4+ hours post neb - I to have an excellent response to nebs (increase my PF 50-100ish each one) but it rarely lasts more than 2/3 hrs meaning I get home, sleep, waking in the night struggling again but too tired to go back so put it off til morning 😬

Yes it’s so nice when you realise what you’re not the only one in the situation!

I’m thinking of going to the carols (maybe with my parents) but not sure as that time of year/night is not my lungs favourite esp in London! X

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Great Post. Lots of useful points. Don’t have a Home Neb but think it might be useful ‘just in case’. GPs seem inclined to suggest that multiple doses of Ventolin are just as effective. I’m guessing you’d disagree. Presumably the Meds you load into the Neb are Prescription Only, so would need to convince my GP that having a Neb as a ‘Stand-By’ Aid was a sensible idea, and that he ought to comply with Prescriptions for the same, as and when required.

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Thank you ☺️.

Yes I find them a lot more effective - 1 it forces me to stop (I’m good at taking vent on the go 😅), 2 there’s no issue with breathing/timing cause even with tidal breathing and a spacer that can be a struggle, 3 it’s easier to focus on breathing to the base of my lungs as once set up I don’t have to do anything (like hold/press pump). There’s a reason why you get nebs in hospital and aren’t just made to use your pump!

My GP was the one who told me to get one as at the time I was having to have a neb 1-2x week with them plus hospital trips on top 😱. This way I could just call that I had had one, and it would ‘force’ me to hospital if they weren’t working (I’m a avoider). GP’s also aware how much I dislike getting up at 2-3am to go to hospital (I never have - I would just pump it out (sometimes 20 pumps 😬), go back to sleep and sort it out the next day) - he thinks I’m safer with one so I can use it, have a good response and be ok til I seek help 😅. I usually improve b about 100 on my PF after each one!

It did take about a year of issues to get to this point (was spiralling from ‘normal’ asthma to severe, with multiple a&e trips and hospital admissions, despite a lot of GP appts and hosp follow up appts so very uncontrolled 😅).

As stated my consultant doesn’t like me having one, but I know I’m more likely to abuse my ventolin as that doesn’t have ‘rules’ that were given with it. To me 2 nebs in a day means hospital but 50+ ventolin doesn’t need anything 😅😬🤭

Yes the nebules are salbutamol 2.5ml or 5ml and prescription only. 2.5s are better as basically as effective but less side effects. I can also use saline nebules if I’m struggling to shift gunk from infection/virus etc (again prescription and for some reason more expensive than the salbutamol ones 🤷‍♀️😅).

If you’re at the point I was (severe, uncontrolled) then maybe ask about getting one with ‘rules’? Or discuss with your consultant... some don’t mind if they trust you to be sensible with it - mine doesn’t like it but hasn’t stopped me having it - think he’s more concerned about other docs abusing it as stated above 😏

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Oh Emma ! You’ve got it all so right, I especially agree with the ‘unattural calm’ I wondered why I wasn’t worried about anything! I was just amazed that with all this stuff going on, I was totally calm and unworried. An excellent post. I was only diagnosed last year aged 65, and it’s not at all how I thought of Asthma! A very steep learning curve,

I was due to go on a walking holiday in Italy with husband and friends, after an exacerbation I was on my last day of Prednisalone, still unable to walk for more than 40 yards, Asthma Nurse sent me into the GP for another prescription, he said that I wasn’t wheezy, chest was clear ( I have CVA) and to go and have a good time in the sun, so GPS need to get their act together to, needless to say I didn’t go on the holiday.

I’m going to print your list off and keep it in my handbag

Thank you

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Thanks!

Sorry to hear that you’re having to learn through experience - yes asthma is never what you think it was going to be aka just a blue pump! I’m sorry you had to miss your holiday 😞

The one thing I’m glad about is that I don’t have CVA - I don’t think I’d have managed as well as I did if people were constantly telling me I was ok when I knew I wasn’t! Keep preserving with them - maybe you’ll be able to educate him about CVA!

😂 just fix the typos and spelling mistakes! I’ve also thought of a few more;

25. Your PF doesn’t have to drop to be having an attack - you can be having issues even if your PF doesn’t suggest so. This is one of the most difficult types of attack as doctors just wont believe you unless they know you. Best thing to do if this is your ‘normal’ to is get a letter explaining from your consultant and hand it over if you ever need something more!

26. Spacers are important - not only do they make you more efficient at picking up the drug, but they can also reduce some off the side effects. Always getting oral thrush - try using a spacer! Get very shaky from your blue pump? - spacer! Preventer make you gag? - spacer!

27. 9x/10 orginginal meds’ work better than the generics - they’re more expensive so docs like to try you on generics but I get a highly different response from ventolin than I do from any alternative!

28. CFC does make a difference even if they say it doesn’t - it’s less environmentally friendly but it can double how much my improvement lasts!

29. Exercise is important (as and when you can) - it’s always difficult as a severe uncontrolled asthmatic to work out when to exercise and how much to do... I find I push the limit too far if I’m well but do nothing if I’m ill - I’m still trying big to work out a balance. Alternatively take up singing (in the shower if your ‘bad’) or a musical instrument - at least then you’re helping your lungs stay fit, even if your body gets fat!

30. Find the right drugs for you - keep going back until you feel your best, if you struggle with MDIs (aerosols) then ask to try DPIs (powders) - it took me a year of telling them MDIs made me cough and feel sick before they gave me dry powder inhalers - I didn’t even know they were an option at the time! Tell them if the side effects are too bad for you to deal with, even if it’s helping you breathe - there are usually alternative brands that you can try which may not give you any issues!

A nice round 30 points (until I think of something else 😅)

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Thanks, I’ll print that off too.

Thankfully, I usually see an Asthma Nurse, one of them actually has Asthma, they are very good, the GP I saw wasn’t my usual Doctor, the nurse wanted me to see him to get another prescription for Pred and to sign a letter for me for the holiday insurance, he said I was fine!

I saw her recently for an annual Asthma check( who knew they did that?) And told her that I probably didn’t help myself as by the time I staggered down to his office I couldn’t remember why I was there, I was also concerned about the number of people in there with me all talking...... on the way home my husband said that I was talking a load of rubbish, the Nurse nodded and said I was probably Hypoxic, thanks Doc, he didn’t notice! Thing is when you’re in the middle of an exacerbation as she calls it, you are unable to say anything about anything, that is quite scary when you’re used to telling people where you hurt or where the problem is. I need to talk to my family and tell them that if I start talking gibberish it’s probably Asthma and I need to get some Ventolin in me, I use spacers and I always get prescribed the actual Fostair and Ventolin, so no worries on that score.

Thanks again your post has been very helpful, after I read each point I said , that’s me!

J x

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I’m glad you have a good asthma nurse who understands! Yes asthma reviews are meant to be annual even if you’re stable! Some people never see their docs about their asthma so it can get forgotten about until it suddenly worsens. They also use the appt to up or down grade your meds so if your a little symptomatic they’ll think about adding to your meds, if you’ve been well for a year or more, never getting issues, they’ll try taking something away so you don’t take unnecessary meds!

Oh yes - when I’m hypoxic I get giggly! I also can’t spell, do maths or concentrate/remember things, I stumble over words and go off in obscure tangents (which I find hilarious 😅) and my eyes cry. It does mean that when people see me they don’t think I’m too bad cause I’m laughing at stupid things 🤪🙄.

If she sends you down again either make her write down the problems (so you can just hand it over) or get her to come with you to fight your corner (or your husband if he knows what needs to be said aka you don’t wheeze you have CVA).

You’re welcome! I hope you’re in a good place atm! X

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I’ve got a streaming cold at the moment so I’ve upped the Fostair back to 2x puffs, as I’m aware of my breathing, usually I just breathe without thinking, that is a sentence that only an Asthmatic would understand 🙂! And I’m keeping the Ventolin handy.

Hope you’re well too.

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Emma, you are a star!! I wish you had posted this a week ago! I would have liked your post 5 times if I could... You are about to get quoted again ;-) as this is too useful to ignore!

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💁‍♀️😂

Thanks - I saw a lot of these kind of ‘I wish I had known’ on a different community (living with asthma), and just thought I’d throw in a 2 cents worth 😅. I thought it was a good way to help those new to their condition and compare notes with others who have been through similar situations!

I’ve just updated the list to a nice round 30 as I had added some in a comment somewhere 😅

There are more things out there that I have yet to either learn or remember so it’s definitely a work in process post and as more people talk, more things can be found in the comments!

Hopefully it helps you now, even if it is a week late 🤞🏻😅 x

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Thanks Emma,

I also take the powder form of Ventolin. I have Ventolin rotacaps with a Ventolin rotahaler. I discovered that the CFC free propellent in the aerosol actually gave me asthma! I was allergic to it. The rotacaps have worked well for me for over 18 years now. I have to order them in (Some pharmacies don't even know they exist!) and I have two pharmacies with a supply of them so that I never run out.

You have been through much over time but it sounds as if you have worked out a lot!

All the best -

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Hi Emma,

I too take Ventolin by powder. I discovered years ago that the CFC free propellant gave me asthma! I have used Ventolin rotacaps and the rotahaler for over 18 years now.

It sounds like you have been through much but have worked out a lot of things.

Wishing you all the best -

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Hi

My biggest difficulty was switch my spiriva from respimat to handihaler as that’s only licences for COPD despite it being the same drug! I also switch between the ventolin accuhaler and evohaler through spacer - accu for ‘everyday’ issues, evo for if I’m really bad but can’t access my neb/CBA to set it up as by that point I physically can’t use the accu 😬

Luckily my preventer is relvar ellipta so it was DPI from the get go! I was previously on others which were MDIs til my GP got fed up with me constantly saying that I didn’t like taking my preventer (so would avoid if I could) as it made me gag/feel sick for an hour-ish afterwards - tried a DPI and had absolutely no problem! I have the same issue on any MDI salbutamol which isn’t CFC ventolin!

My new surgery has yet to allow me to order both at the same time, and keep only allowing the evo so will have to make a accu only order!

I hope you are well as we head into winter x

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Hi Emma,

When I had to sign in, I thought that my first post didn't go through so did the second one. Thanks for replying. I'm seeing a specialist tomorrow so your information has come in very handy. I'm from Australia so we're now heading into Summer. I already feel my body relaxing with the heat. I find the minute I breathe in cold air my lungs get tight so unfortunately my heating bill is excessive in Winter. Wishing you good health during the Winter - Maybe a trip to Spain!

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No worries 😉. Good luck tomorrow and enjoy your summer! X

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Thanks....

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