Asthma and full time job

How do people cope with a job when there asthma is playing up? I am lucky that I don't spend much time in hospital but I find it stressful thinking about having a full time job where people are relying on me as when I have attacks I can be no use to anyone for days after as I'm exhausted and lungs can feel twitchy. I am having them every few weeks at the moment. Also the mind fog I sometimes experience will make things a whole lot harder. How do you cope with this?

45 Replies

  • I struggle a lot trying to appear healthy for the sake of the kids I teach, but I'm fairly lucky that I have an understanding agency who has other staff with long term medical issues too.

    The only down side is there's no sick pay with this company (in Japan), so if I had to be off sick for a while I wouldn't be able to support myself.

    I wouldn't be surprised if they didn't want to renew my contract next year though.

    Although, I've been to work when I'm super wheezy and I only took 1 day off when I had laryngitis a few months ago (had to practically force my voice out) hopefully they see my dedication haha!

  • It can be really hard to cope with dodgy asthma and a full time job. There have been times when I've seriously wondered if I can keep doing my job when my asthma's been playing up. I used to have a lot of time off work and when I did work I'd struggle to do it, it would make me very tired and I'd spend every evening and day off just resting and recovering, which doesn't really give you much of a life. I nearly had to give up my work earlier this year, which I love, but I'm very fortunate that a change of meds has meant that my asthma has been loads better, and other than having to take a few days/week off here and there then I should be ok to carry on working full time as long as I pace and look after myself. It is a bit stressful knowing that if you have to take time off because of asthma, then you're letting people down that are relying on you. I feel like I let people down, but sometimes I need to take the time off, it's in my own best interest and also the employers too.

  • Sounds like you've both done really well to keep going in. I guess I will just have to see how I get on when the time comes.

    Has anyone had a bad experience with employers?

  • Hi Unigirl2, this topic is something which plays on my mind a lot too. I HAD a full-time job which I attended on days when I REALLY shouldn't have, leading them to have to call an ambulance for me on a few occasions. I enjoyed my job, for the most part, but the stress that the company put on me (not just about my health, but I was responsible for the legality of the company so it was an important role) lead me to seek something else. Hence, I am starting university this sept for the second time - yes, I already have a degree! The last time I took time off, I was only off for a few days as I was hospitalised, but the company decided to take the disciplinary route, so I sped up my search for something else before they decided that I wasn't worth the effort. Looking back, I suppose I did add to the worries of the other managers, however unintentional, especially those who were not first-aid trained.

    It does worry me that I may get through this new course and not be able to hold down a full-time job, but I have to try. I'm not a quitter!

  • Thanks for your reply Chukkin. First off good luck with your degree, what are you studying?

    I can understand why the employers were worried and I guess it makes us sort of unreliable in terms of attendance without meaning to be. But would't the disciplinary and the fact that they decided ""you weren't worth the effort"" be considered discrimination? To me that's out of order. Did you struggle a lot with your asthma before you entered this job? I guess I will just have to try my best. I'd like to say part-time might be more suited to some if they can financially afforded it so us asthmatics can get some rest but as it's just so unpredictable I guess you'd be just as unreliable in terms of attendance. I'm going to aim for a less stress job, stress makes me worse and I get stressed easily too.. now where to find it.... (plan B: marry a rich man)

  • Even when you work for the NHS, once sickness reaches a certain level you have to attend a kind of disciplinary meeting with your managers and HR. I had to do this after time off with recurrent pneumonia and almost being ventilated in ITU. I have a letter which states 'the trust expects better performance' in the future.

    Whilst I don't think they go about it the right way, I'm the first to accept that I was no longer able to do the job I was employed to do. Fact, not discrimination - and I resigned. It would not have been right for me to stay, unfair on my patients, my colleagues and my employers. And my health. I view discrimination as getting rid of me due to my health if I was still able to do the job required with some adaptations - but I couldn't. It's pants.

  • I am sorry to hear this Nurse Furby. Do you think you will be able to go back in the future? What would be the alternatives?

  • I haven't been able to work for 4 yrs now - but I'm managing a part time psychotherapy diploma (one day a month Uni over three years) and I'm really hoping that when I qualify I'll be able to do a bit, even if its five hrs a week or something stupid! Just for my sanity ;) it will be physically less demanding and I can do it from home, sitting still lol. I do miss nursing though.

    I was lucky in that during the time I nursed, my employer was reasonably supportive until all the absence was needed because of lung stuff. Access to Work also joint funded specialist desk and seating, and car adaptations (I was a community nurse sister) which made a huge difference - but not to my lungs! I was very very upset and angry at the time, in the way it was handled, but also realised I couldn't do the job anymore. Having to sit in a meeting and justify your time off when you dont have enough breath to string a sentence together is a tad frustrating! Ironically my years in the NHS have shown them to be a pretty heartless employer when it comes to supporting staff with genuine health difficulties. You would imagine it would be the opposite eh!

    Have you got any ideas about what you would like to do Unigirl? :)

  • Hi Unigirl, I will be studying Operating Department Practice (basically working in an operating theatre in hospital during operations!). I agree with nursefurby, and I suppose it wouldn't have been discrimination since technically I wasn't fit enough for the job, despite my stubbornness (not sure that's even a word...). Don't give up though! Despite realising the depressing truth that I wasn't well enough to continue, I KNOW that I cannot sit and do nothing. The time between my leaving my job, and waiting for the course to begin is driving me completely mad! I can't just sit around the house and watch tv! Argh!

  • Nurse Furby, you would think they would understand better, we are a very misunderstood group. I get the general feeling that people aren't very empathetic to us. Ah well, we live to fight another day. At the end of the day health always comes first and it's great that you're doing your diploma. I know exactly what you mean about the sanity, got to keep the mind ticking over something. :)

    Well I am studying mathematics and statistics. I think I would like to be an analyst but I don't care in what field. To me it is the maths that is interesting. I did think being a medical statistician would be very interesting but I don't know if I have the energy for any more studying after my final year (think I need masters in stats for this). So I guess I wouldn't be in an active job. It is the winter time that worries me more, I find it difficult to get out of bed, I need my inhaler a lot(which gives me quite a few sides effects: headaches, palpitations espesh in night, sometimes insomnia) which is very taxing on my body and I don't know how I would manage a 9-5. Also I need around 12hours sleep a night in winter to feel remotely human - that cold air really is a bugger for me!! If you haven't seen my other post I am being tested as cons thinks I have something other than asthma which is taking its toll on my body.

    Chukkin, you are so driven, sounds like a very cool job waiting for you at the end of your degree. I can't sit around every day too, I like being out of the house.

  • Oh wow maths and statistics, my worst nightmare - you are clearly a clever bod! ;) was it you I suggested an overnight oximetry to? I can happily sleep 12-14hrs a night and still exhausted. I'm being checked for anaemia and secondary adrenal insufficiency this week as I have a load of other symptoms which point to those.

    I now always have a nebuliser before going to sleep which helps a little bit with the tiredness (cons thinks I am getting nocturnal symptoms but not properly waking). Is it possible you are getting night time symptoms which are affecting your sleep quality?

  • Ha, everyone says this, I'm not clever I'm a big nerd. I don't recall you mentioning this. What does this do/check for? Ah so it isn't just me who needs lots of sleep. I am checked for anemia, diabetes, thyroid and these things every winter. don't have these. hope you tests are clear.

    So we can get symptoms in our sleep? You would think you would wake but I think I may have had this problem. It is difficult to describe my nighttime. I can't lie down without at east 3 pillows (sometimes more in winter) as I feel breathless. Sometimes I wake in the night and the room can feel stuffy and I feel that I have a temperature. I feel like I can't get enough air out of the room - opening windows can help, nice fresh air, and sometimes need inhaler. During winter I wake pretty much every night to take inhaler. I have mentioned to many docs and it has been shrugged off so many times I guess I have just accepted it and forgotten it.

  • Chukkin - I know what you mean about the waiting. hope you get through it and lungs behave!

    I have been a little concerned about this - not majorly because I also don't have big attacks or usually end up in hospital (I've decided that the two visits I've had were an aberration).

    However I do get tired and rather brain-foggy with asthma and in Feb had to take a week off - GP told me to 'cancel everything' and take it easy; I tried to work as I work from home but even sitting at the desk working wasn't successful. It was better the next week but I was still rather brainless and slow and it all took a while to clear up. This, not the big attacks I don't have, are what worry me especially now I'm applying for jobs as I'd worry that I'd be sleepy and stupid a lot of the time and not perform well which wouldn't be good at all or fair on the others, plus I'd find it hard to explain why as I don't like talking about it with work people. Also I think a lot of ppl just don't really get the effect it can have; my masters supervisor who is very nice was pressing me slightly for work when I""d just come out of hosp -that sounds bad but she didn't mean it like that, I just had to explain that I'd been far too out of it since coming out to deal with loads of figures and would have messed them up (another worry as though I'm not a statistician my job might involve working with figures...)

    Re the night-time and sleepiness: I am pretty sure that I get symptoms which disturb my sleep without me waking up properly. I just get very restless and drift in and out of sleep/thrash around but don't wake up enough to take my inhaler; however the next day I'll be as sleepy as I was after an all-nighter at uni. I've mentioned this to drs but they don't seem that interested, which is frustrating as it does affect my life. A lot of the time it seems like it doesn't 'count' for them as a night disturbed by asthma unless you wake up fully and take inhaler (which can also happen), but I know those nights, and the falling asleep in the afternoon, don't happen when breathing is better - even with a short night in bed I feel a lot more alert and less sleepy during a 'good lung' period. Also I tend to feel a bit SOB in dreams when bad.

  • Philomela, we sound very similar in our symptoms! I do not go hospital a lot but suffer a lot with the brain fog and tiredness. Also, I am the same in that I don't like talking about it with work/uni people. I find that they are both very unforgiving. Usually I get told to ""man up"", I think part of the reason for this is I don't look as ill on the outside as I am on the inside-just look a bit tired some days, thats all. Obviously I don't want to look ill but it would be easier in getting people to understand.

    Do you have any anti-tiredness/anti-brainfog tips? I find a healthier diet definitely helps, I also like berrocca to get my vitamins. I don't drink often. Try to exercise but this isn't an option in winter. But sometimes the only thing for me is rest and relaxation.

    Does asthma ever come into your dreams. It does for me (only on occasion) and I'm not sure if it's because I am actually struggling but can't wake up.

  • Unigirl it does sound like you have unmanaged night time symptoms Do you use your reliever right before going to sleep?

    I get a lot of dreams about being unable to breathe when I don't have a salbutamol neb before bed but it still doesn't wake me lol. Takes a bomb to go off to wake me, I stopped breathing for 30 seconds a couple of years ago when I was ill, and shouted at my poor hubby for waking me up, then realised how stressed he was! I'm not good at the waking up bit ;)

    It's a real shame that you feel you've been dismissed about this as it may well be a contributory factor in your tiredness. I wonder who I mentioned the overnight oximetry to... that may be worth exploring either with your GP or consultant in view of your tiredness. It's like a screening tool to see if a sleep study is needed and it records your O2 saturation throughout the night (at home).

  • I don't take it no. I usually take salbutamol before exercise but never thought of it before bed. It gives me a lot of headaches so I guess I try and avoid if I can. I am on symibcort tho which I take before bed and has long-acting reliever in. However I will start taking inhaler before bed to see if it makes a difference.

    Do you think you're struggling in your sleep when you dream on asthma? Oh dear, hope everything was OK. Is it just asthma or sleep hypopnea, am not really an expert on hypopnea but from what I understand the airways reduce by around 50% for about 10seconds during night.

    Maybe you did mention it to me and I forgot. i'm going to go back over my post in an hour or so to write the suggestions down to tell my doctor about later on today. I will def mention the oximetry, thank you for the advice!

  • It was me who you mentioned it to! silly me!!

  • Lol I can stop wondering now then! ;)

    When I had my full sleep study, the reason for it was concern about respiratory failure - which there was no indication of :) but I did have some hypopneas which he was really surprised about - no apnoeas though. I'm really small and thin so hypopneas/apnoeas were the last thing he expected to see and he's trying to find out if its related to my odd neck anatomy due to a syndrome I have.

    You're right, hypopneas involve partial closure of the airway and a reduction in airflow, whereas apnoea is a total closure of the airway with no air flow.

    Good luck with doc :)

  • Nursefurby, interesting you say that re apnoea. I am not small or particularly thin and don't afaik have an odd neck, but I'm also not overweight . However, when I had a bronchoscopy a couple of years ago there was a note on the report saying 'very crowded palate - ?risk sleep apnoea'. So clearly there are peculiarities which can predispose to it! I don't think I have it but sometimes I do wonder if there is some kind of element of overnight breathing problems given how my sleep can be when breathing is worse; can't really ask consultant about it though as suspect he will just think I'm inventing illnesses to have. Got an appt tomorrow, would rather be having root canal tbh as I feel crappy after these appts and having to fight my corner to say that I'm not panicking about bad attacks I don't have, it's a quality of life thing with milder persistent symptoms.

    UniGirl, hope you got on ok with the dr. Wish I did have anti-brain-fog tips but I don't! I also have the thing where I look ok even if I feel absolutely awful which as you say doesn't help; people who know me well or a dr would be able to tell but someone at work wouldn't, and while it can be useful I do often get the feeling ppl think I'm being a drama queen, or don't get why I can't do something - especially as I don't like to explain. Was especially bad when I used to walk v slowly as I did look fine and was always getting left behind or ppl telling me to hurry up, and no-one got the whole 'I don't want to do that because I will be very tired if I do and I have other things I have to do'.

    I do sometimes have asthma come into my dreams yes - one time I dreamt I was scuba-diving (something I'd love to do but currently couldn't/wouldn't be allowed to) and I felt more and more tight and restricted!

  • I have 'struggling to breathe dreams' and based on how i feel when i wake up (pulled rib muscles in particular) so i think it is my body noticing me struggling adn trying to let me know.

    I had a sleep study over two nights at home, and had periods of lower oxygen that were not significant enough to make it look like sleep apnoea, but im not sure if thats an 'everyone gets it' thing or a 'not everyone gets it, but it doesnt matter' thing!

  • From what the RSSC Consultant said, its normal for people to desaturate a bit at night (ie even healthy bods). What did they do at home, was it just the O2 monitoring or something else?

  • it was when i had that weird thing on my finger at home! I assume that if you have sleep apnoea it'll happen every night (and wont only happen if asthma is bad), not sure you'll know this, but you seem quite knowledgeable about the subject :-)

  • LOL that 'weird thing' is just a normal pulse oximeter measuring and recording your sats ;) its a screening tool to see if you need a full sleep assessment/polysomnography. If you only desaturated when asthma was bad then it wouldn't be sleep apnoea, it would be asthma - totally different mechanism. Sleep apnoea/hypopnea is caused by the muscles and soft tissues in the throat relaxing and collapsing sufficiently to cause a total or partial blockage of the airway. Polysomnography is less fun, you are trussed up like a turkey LOL - and videoed all night!

  • videoed!? jeez Im showing my age... ;)

  • The doctor did not seem worried when I mentioned my night time symptoms but I can't say I'm really satisfied with this. I think I will wait for next appointment with cons or possibly mention it when I am back at my regular docs where I go to University. He gave me the old ""take more meds"". I have already started taking my preventative inhaler(symbicort) twice in the middle of the day as well as in morn and night due to worsening symptoms. Whilst this can be helpful advice, I feel I am told this a lot at GPs.... take more of this and that'll sort it. Never does! Maybe I wasn't explaining myself fully enough but I think I will start to make a diary of night time(as well as PF, amount salb taken). This is usually the way I manage to get things done, write them down so I can't forget and docs can look at it. I think I am very bad at explaining myself sometimes which doesn't help.

    Nurse furby, what can be done about your hypopneas? just the usual eat well and exercise?

    Philomela, good luck with your appointment tomorrow. I am the same with the whole quality of life thing. Luckily, with the two appointments I have had with cons I haven't had any problems with them taking it seriously, maybe because I bombarded the first one with a lot of notes of my symptoms, triggers, how I struggle day to day and espesh at uni, PFs, and all that jazz. It's the docs and nurses who I sometimes have arguments with. I think a slight part of the problem might be my young looking face and I do not like going there at all as I find it very stressful to talk about my symptoms so maybe I come across as a bit timid.

    I can sometimes feel like I am coming across as a drama queen too. I have also found that when I am going through a period of very little symptoms and feeling generally well, I can forget how bad it can get and I think ""maybe it was all in my mind"" then it all comes flooding back to me. I don't tend to do this as much anymore, was more when I was first diagnosed.

    I have had a recurring dream (or reality) over many years that I am lay on my front in bed and I can't get any air in because I am lay funny but as I am short of O2 so I can't move so I'm like a turtle trying to roll itself over. It is a very stressful dream(or reality, I'm really not sure!!) and very scary but as soon as I am lay on my side again I can breathe. I don't know whether I wake up or not, can never remember if I do.

  • How annoying unigirl but unfortunately all too familiar. I once said to my asthma nurse that I wished I had the docs phone number so I could phone them at 2am an,d she laughed and said upit would be useful. Over the past few months, I have also found myself taking more and more meds (my repeat prescription list now fills two pages but not all for asthma). I think of it as climbing a ladder and another med helps me climb a few more rungs but I never seem to be at the top. Writing it down has always been helpful for me even though I might have previously reported this.

    The whole quality of life thing is a bit annoying too. I've been told on several occasions that it is fine to get by on my reliever (even needing 16 puffs a day) until they realised that my resting heart rate was 150! Saying that atrovent has helped but still needing Bricanyl a few times a day and am seriously restricting what I do (on school summer holidays at the moment).

    Sorry if this is not very useful. Feeling a little uncertain myself at the moment so reading threads like this helps!

  • Hmm yes I get the 'take more meds' conversation too, and something im trying to put off.

    I also have dreams where I can't breathe, I don't wake up but when I wake in the morning I feel sore and tired so often wonder if I've been struggling during thw night, but never properly woken.

  • ah Unigirl, it's so frustrating when they don't listen properly isn't it? I used to have the 'hmm maybe I AM imagining it' too as I think it's hard when you're well to remember the nastiness of not being well - I also find I kind of get used to it then it's only when I'm better that I notice the difference. I also HATE talking to drs but have generally found GPs better than consultants who on the whole don't seem to be very good listeners. This one used to be but he now seems to have decided it's mainly my perception despite the admissions - those were just me and the drs there overreacting apparently because they were inexperienced (despite me seeing a cons both times).

    So I am NOT looking forward to tomorrow; I feel he has some very odd ideas about me which I need to correct as I'm concerned he may take me off all my stuff and not replace it - it's not doing as well as it could but it's definitely much better than being on nothing, or minimal preventers. I would much much rather NOT be on lots of medication, but at the same time I feel I have given the perception argument several chances, seen physios etc and not really got that far with this approach though I have addressed some issues that did need addressing like breathing pattern. I have always had a lot more improvement in symptoms when they have assumed it is asthma though a bit unusual and treated it as such. I also get the feeling that he thinks you don't need to do anything in the 'yellow zone'; since this thread is about jobs I somehow doubt he could do his job(s) properly if he had frequent symptoms which disturbed his sleep, slowed his walking, made him tired and unable to think properly...but it doesn't matter unless PF Is below 300? grrr. All this research saying children with uncontrolled hayfever and/or asthma do worse at school: it's not just children who are affected in daily life but I get the feeling at times they only care if you're turning blue!

    Oops sorry for the rant. I'm nervous and also a bit fed up, didn't mean to take over your thread. When are you going back to uni? Hope the drs there can help.

  • Kayla, Sometimes rather than giving me more meds they just tell me to take more puffs of the one I'm on. I'd already put it up though! I have never been to the top either. When I say I'm well, I'm not like pre-asthma well, I used to play sports every day and now I can barely manage a half hour run! I guess I'm lucky that I had the 18 years pre-asthma to play all those sports and be able to study without interference.

    Surely it can;t be good for your body to have that much salb. Do you get any sides effects from it? My big ones are heart palpitations which often keep me up at night and a lot of headaches. When I went to my doc/nurse saying I've been taking reliever around 8-12 times a day she was really annoyed and told me to never suffer like that again. This was over crimbo and I didn't have the energy to go docs/don't like my doctors near my mums. So that can't be right!! Salbutamol is a beta-antagonist isn't it (am I saying this right, or would I say full of beta-antagonists?) Restricting yourself how? Just having a lot of rest days?

    I just like talking things through, keep me sane! not really got anyone outside the board who gets it.

    Butterfly, seems like a common problem then? I've had my not being able to breathe dream for years and pre-asthma. I just suspect I must have had some problems all my life that have gone unnoticed.

  • I've only just seen your post philomela, had to refresh page after I'd just replied. I absolutely agree, you get used to how you are, sometimes I can't see myself ever returning to any kind of normal but as the warmer gets warmer I get better (usually).

    Oh dear, can you not get yourself a new consultant? Either at the same hospital or go to a diff one, even if it means travelling. When I am home from uni it takes me about 2 hours to get to cons but it is worth it as I'm not keen on healthcare in my home town. And I get a day out out of the whole thing, woo. So what does he think your perception is? Does he just think its all in your head or something? It is annoying me just to think about someone saying that. I am guessing he is not an asthmatic but you would think he would be familar!!?? Is it possible he is fairly new to the whole cons thing and hasn't really run into anyone who doesn't follow the strict ins and outs of asthma, thinks everyone follows same thing or it can't be asthma? I hope all goes well, stand your ground and good luck.

    Oh dear, taking any asthmatic suddenly off their inhalers is not a good idea. Once I forgot to take my morning preventative inhaler and had an attack... coincidence? I think not! Haven't made same mistake since, I had a lot on my mind, didn't help that I had an exam later that day! It's almost like some docs think we just really want meds with all these lovely side effects. You cannot survive being in the yellow zone all the time, it isn't fair on you.

    Don't worry you're not ranting, let it all out, ha. I will move back early sept, start back at uni late sept but hopefully I will have another appointment before there.

  • Thanks UniGirl! I am already travelling to see him - have a complicated history with cons as I am weird, saw him before and he was really good and listened but now he's saying some odd thing - not just me in denial, but completely different from other asthma advice I've heard re what to do for actual asthma, very puzzling as he's pretty senior, would think he really knows his stuff, thought before he was good with 'odd' types but even for more classic asthma I was a bit 'wtf?' at some of it? Hoping it will become clearer tomorrow as I can't change again; really need to stick with one cons and build up a relationship, so hoping last time was just...odd. I'm getting allergy tests back, hope those are useful, and also have some numbers from the hospital from my attack to show him. He may not be planning to take me off everything but he was making noises about me being 'over-medicated' so I am worried as I don't want to go back to how I was before and really, it all does something though a different combo might be an improvement.

    Hopefully I'll convince him re yellow zone but am not hopeful; I get very nervous in appts which doesn't help especially as now he's convinced I'm 'highly strung' - pointed out that I am VERY different in those appts as I don't want to be there, and in all honesty I think people who know me would barely recognise the way I am there. I've decided I'm going to channel Elle Woods from Legally Blonde as she would not put up with this s**t lol.

  • You will have to let me know how you get on. I can see why you are worried but don't fret, if you notice any ""dip"" get straight back on them. If he tries to take you off things tomorrow maybe suggest that it is still prescribed for now and you can be the judge of whether or not you are OK without it and if you aren't you have it at hand to start taking it again. Are you taking anyone with you tomorrow? Maybe some support would help? Although it may be important for you to build up relationship, maybe that shouldn't be put first if you are having problems like this? Obviously you will know what is best for you.

    Yes Elle Woods is an inspiration to all!

  • I can't remember the last time I was at the top of the ladder really although I think that a few years ago I was probably there (after being quite severe with maintenance pred as a teenager, I managed to get to the brown inhaler and was taking part in triathalons and all sorts). I don't get exercise induced asthma really as I am much more of the allergic type but I struggle to walk into town with my disabled dad at the moment! In terms of restricting myself, I can do things at my own pace when I want to do them. So yesterday I was going to go into town but it was very humid so thought it would wait for another day, at the weekend I decided to do some cleaning but started to cough so left it for the day. Although I do get on fine with work (hence the reason for not responding to the thread sooner), I do find myself needing my inhaler a lot to get me through it and that is exactly how day to day life is at the moment. I do get the brain fog and tiredness so literally get home and sleep! This frustrates me as I know I have been more controlled with worse asthma than I have at the moment. The nurse on the helpline thought that I have perhaps been untreated with pred so it is not really getting to the bottom of it and then the preventers can't be totally effective (they were great and was on the phone to her for 47 minutes!) I may mention this to the nurse when I see her tomorrow (for once not directly linked to asthma but for an accident I had while having a minor attack). With the reliever, I can't tolerate even a little but of Ventolin (sends pulse sky high so have to take Bricanyl. As it is a turbohaler, I am probably not always getting the full dose in but my pulse is still rather high. This only worried the asthma nurse last week even though I have been saying for months that it is not good to take that much reliever as it is just covering up symtoms. When I asked my cons about what I can expect, she said that I should be aiming for four times a day but was more concerned about becoming desensitised to it.

    Sorry to have waffled a bit. Had a bit of a tricky day asthma wise and am still trying to digest all the info I have had.

    Unigirl - I hope you can get a bit more control to enjoy some of those sports again.

    Philomela - good luck for tomorrow. Hope it goes ok.

  • Wow, triathalons are impressive. I always wonder how these olympians with asthma manage all their rigorous training.

    Sounds very smart just taking your time with everything. Hope this will help you get better. You are the first person I've spoken to not on ventolin (I think).

    Philomela, how was your appointment???

  • Thanks Kayla and UnGirl!

    I'm not on Ventolin now either! I was on Bricanyl as a kid and now I take Atrovent - which is unusual but consultant doesn't approve of taking lots of Ventolin, says it does relieve short term but sets off an inflammatory cycle which can make things worse if you're taking a lot, though steroids protect from this to some extent (from what he said it was much like how long acting beta agonists shouldn't be taken without steroids, though the effect of SABAs like Ventolin haven't been much researched apparently so this is not at all a mainstream view and I may get people on here telling me their consultant thinks that's crazy!) I can only have Vento if PF goes below 300. Which it won't because it wasn't below that even when I was admitted - my PF is not always reliable that way. He and I still don't entirely agree re PF...

    Appt was a lot better though thanks. Much more about asthma and not really the perception stuff this time; I explained about quality of life issues and he seemed to take that on board and be acknowledging that I may well have uncontrolled asthma rather than it being my perception, and he was suggesting a couple of possibilities meds-wise to keep in mind for the future if needed (one of which really surprised me). Had a bit of a disagreement on what to do if PF Is above 50% but I can't talk properly in sentences; he said that wouldn't be asthma causing it if PF above 50% and maybe something else going on. I don't buy this as I know ppl who have been taken in with confirmed severe attacks, bad ABG numbers and PF above 50%; not saying I'll have one that bad but I just don't think it's THAT accurate and means that I should ignore symptoms! I did challenge him on the PF issue and he said it was possible but unlikely that I might have poor technique in that situation. Also really challenged the anxiety issue as I said am not generally anxious (except in cons appts) and certainly not when I'm having an attack - actually I am pretty laid back and the hospital never brought anxiety up, even suggested it for a moment!. I really don't buy that explanation at all, but he seemed willing to listen and consider that there is no anxiety, and said he wants objective evidence to stop others dismissing it as that which is a fair point. I just don't think PF is always the best for me - as it isn't for others - so that's slightly frustrating.

    I can now have pred at below 350. Which see above, seems still a bit low as a cutoff given where I'd be having significant symptoms but I'd hope to have something else to fill the gap, going to ask about that next time.

    Also I corrected something in the last letter and gave him ABG results from admission - not sure what he thought about those, he didn't say anything.

    So overall an improvement, much better communication than last time and felt my concerns about the asthma element were much more discussed rather than everything I asked about being down to perception. Need to be tested for tree pollen as that's the one I suspect I'm allergic to (all the others were negative which didn't surprise me as I didn't think I had a problem with any of them - though had a bizarre and totally paranoid/unfounded worry that he was going to tell me I was allergic to cats (love cats) or dust mites (am v lazy).

  • I'm glad it went better than expected Philomela and that you are not allergic to cats or dust! I have also started taking atrovent (last week) although I take it four times a day as a preventer. My GP was a bit against it as it is an older med bit I have found it to make a small difference. It has a horrible feeling/taste though especially if I take it with my nasal spray in the morning and evening which is also yucky! My cons also said she didn't like people taking more than puffs of a reliever a day as it can make you less likely to respond to smaller amounts.

    It is good he listened to the pf though. I may have mentioned it before but my pf is generally a better indicator than listening to my chest yet my asthma nurse and GP don't seem that bothered by it and I have not been given pred when it was just above 50%. I saw my asthma nurse (who is a bit on off to be honest) and she asked how the cons appointment went (the appointment wasn't asthma related). She though the cons discharged me as there is nothing else they can do (when in fact it was with a letter of 4 different options med wise to try - some of which were totally different to guidelines but had worked with a similar patient and the option of them phoning her to see me again if necessary). Think I will have fun at my next appointment with her and might even try and make it with a GP for a few weeks time so I get the one who actually thinks outside the box (even though he sees me as a bit of an experiment!)

    Just read this back and realise that it is a bit of a rant which I was trying not to do on here.

  • I am so pleased for you Philomela. Well done you, for changing the dynamics of your appt. Sometimes it just has to be done. I was optimistic for you as he was so good before. I think it does take time for them to get to know us too You just need your airways to start calming down now xx

    KaylaCP, in your post, how many puffs of ventolin do they not like you to go above? Just out of curiosity.

  • Hi JF,

    Reading back I have just realised that the number was omitted (I was probably editting it which is tricky on my phone!) I asked my cons how many puffs of reliever I should be aiming for as I have regularly needed 12-16 puffs throughout the day (although as I mentioned above it is a turbohaler so they think I sometimes need more than one puff as it is not going in. Ideally, she wanted me to have not more than two puffs a week (!) but said she could live with six puffs a day. However, the nature of my asthma at the moment is that it is very persistent but I am not having serious attacks.

    I do agree with you re changing the dynamics of the appointment. I think this takes a lot of courage which I find hard to do without becoming too defensive. Well done Philomela!

  • Philomela, so glad your appointment went well!! :) oh dear, I take a lot of ventolin in winter to cope day to day, need to sort this!! You mention that you'll be on pred at 350, is it just me who 350 is normal for? I must have tiny little lungs. Glad you don't have cat and dust allergys. I have both of these but then again I don't like cats - my cat growing up was pure evil!! Are you more of an exercise/stress induced asthmatic rather than allergic??

    Quick question for anyone re nasal spray. When ydays doc was looking at my med list and he saw a nasal spray he said ""oh do you have hayfever"" I dont (as far as I know) and explained that its for the runny nosey I get a lot and he kind of looked at me funny. I thought nasal sprays weren't just for hay fever? was he just being silly? I thought it made a difference anyway.

  • You're not alone - 350 ia about normal for my these days but 400 is more my personal best. The duty doctor over the phone asked me if I was short when I told her this!

    I don't think nasal sprays are strictly for hayfever and I take them all the time. There are different sorts too - one of mine is a antihistamine so def for allergies but the other is the steriod spray so it relaxes the inflammation like a steriod inhaler. As you are allergic to cats and dust, both would be taken for these if it was a problem. I have them for a post nasal drip caused by this but also cold really cause problems too and apparently the steriod one helps with this. In fact, the nasal spray which I have started this year for hayfever was first used to treat acute sinusitus a few years ago when I had a cold.

    (Having an easy day today which is why I am on here a lot!)

  • Well I am short so I guess this explains my ""low"" PF. Ah thank you for clearing this up. The doc I saw has a lot to learn then.

  • Well I am short so I guess this explains my ""low"" PF. Ah thank you for clearing this up. The doc I saw has a lot to learn then.

    PF predicted norms are based on gender and height, but remember they are statistical averages so there will be a reasonable variation of normal range.

    Im 172cm (not sure what that is in feet and inches?) and best PF is 300.

  • I think nasal sprays are sometimes px for PND but don't quote me ;)

  • UniGirl. I'm not short (5'9"") and also my personal best is 600 which is well above my predicted of 470! Not sure why mine is so high but think perhaps from lots of singing/playing woodwind?

    It doesn't seem to help my asthma much; actually seems to cause more problems than anything else having such a high PB - I keep having to say that a reading in the low 400s or high 300s is not good for me though drs/nurses who know me get that (nurse doing spiro yesterday right away said my PF was not good for me and nor was spiro). I often express it in percentage terms first when asked by someone who doesn't know me!

    Technique can make a difference - I used to have an INSANELY high PB of 700 until my cons asked to see me do it and said I was doing it all wrong and just coughing into it would give anyone a high result. But I can still get 600 with proper technique when I'm well.

    Re appt - thanks :) Cons is actually easier to talk to than others though last time I did feel he was hard to persuade and wasn't listening so much (but better compared to my last cons who started out nice and ended up basically taking out his frustration on me/blaming me for not improving, and not really seeming to care what I said).

    But I now feel comfortable challenging this cons and just saying 'why? I need more explanation/are you sure/I don't agree'. I certainly don't agree with him on everything as I've said esp re PF, but he has said I should ask/challenge him. I think it also helps that mostly he seems to think I am intelligent (he said I was logical/rational though 'a bit intense' hehe - I said, again, yes this is not my favourite place to be) and not a stupid patient to be talked down to (I think at times some drs do seem to have this attitude that the pt can't know anything and any questions/queries are just down to them being anxious etc). Last time I just hated the idea that he was going off on the 'perception' path and questioning everything I'd been told by others which didn't make for an easy appt - and I didn't appreciate the whole 'anxiety' thing being brought into the mix either. I think generally I just need to challenge him where I'm not happy with what's being said, but I appreciate that I can do that as it just wouldn't happen with a lot of drs. So not quite there yet but defo an improvement and I didn't shut down and think 'this is pointless' as I have so often in other appts.

  • I'm 5'3"" and best pf is 550, my predicted is 440. Like Philomela I'll often refer to pf in percentages. I think mine's high because I'm really active.

    Philomela- I'm really glad your appointment was better.

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