Am I stopping myself getting help?

I just wondered at what point most people take themselves to hospital or get medical help. I have had asthma since seven (diagnosed) but at 14 I was hospitalised every 2 to 3 days and had to give up my figure skating which was my main love. Been uncontrolled since then with some bouts worse than others. However I have managed to go to uni, and am now holding down a full time teaching job.

I was just wondering because my best PF is 570 and currently (last 4 weeks min) haven't got it above 370. I am nebbing morning and night, on 40 mg pred, just had Kenalog injection and taking inhaler every 2 hours an djust can't shift it. My asthma nurse is very good but is lost for next steps as she quite rightly says it has to be down to hospital now for the lind of meds we are talking about but last went in Feb and next appointment is August.

Just wondered if because I refuse to take time off and mask my symptom,s by not bothering to walk to the staff room for breaks etc, to the point that I end up in a mess evenings, weekends and holidays if I am in fact not letting them see how uncontrolled I am. I thought that getting a nebuliser at home was great because it meant less hospital trips and consequently less admissions but now beginning to wonder.

I just wish I could increase some of my preventative meds but can't so have to treat rather than prevent if tht makes sense and at 27 be able to walk up the stairs and be in a better state than my 80 year old Gran!

Feel sorry for myself rant over now, thanks for reading! ;)

Meds - Flixtotide 250, Fostair 100/6, Siriva Respimat, Fexofenadine, Kenalog, Prednisolone (40mg a day), Ventolin nebs and inhaler.

20 Replies

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  • my asthma is out of control as well. You sound very much like me and i end up getting told off by my gp as i avoid help till im really bad. So i would say to avoid getting worse and i guess your work place is closed for the holidays now i would get to ur gps tomorrow if you dont want to go to the hospital

    Amanda

    X

  • Ha, not too alike though - Reid/Morgan!!

    I kind of get to the point that I forget how uncomfortable it is as it becomes the new norm and then when you hit a perios of stability and your meds are down and your PF up you think, Wow I won't let myself stay back down there fo rso long again but when it is choice between just getting on or seeming to live at GP's I know my choice and am just glad I can make the choice.

    I read about some people's struggles with work and just think I can work when other's really can't so I will give it everything but think if I take time off I will jeoperdise my chances of getting a permenant contract anywhere and I just love my job.

    Glad I am not the only liability out there though!

  • yeah i know people who like rossi.

    I know that feeling im new to dealing with my own asthma and i hate going to see my gp about it. I dont know the asthma nurse at my gps. So i dont like going as i know people are worse than me.

    I dont work as i care for my mum so if i have a bad day i work through it thats what i did when i had appendicitus belive it or not. I feel like i waste my gps time. Which is how you feel i guess

  • Hmm, this sounds a bit too familiar, though I think your asthma is probably more severe whereas mine, if it is that, is just completely uncontrolled.

    I've never got to the point where I've felt I need to call for help quickly. I have often wondered whether I'm going to need it, but then I dither and seem to get through the bad patch all right so figure I don't need to (presumably if it were really bad, I wouldn't be able to avoid getting help eventually).

    However, I seem to be on a steady downward trend generally - I keep finding more and more things I can't do without getting breathless (latest is playing the cello which is ridiculous, it's not a tuba!), and more and more things I do that then make the everyday breathlessness worse - and like you, I try to disguise it by not taking walks anywhere at work (I fall way behind colleagues and feel stupid but I can't walk fast anymore, feel about 80!). I'm really impressed that you've managed to get through uni and hold down a demanding job with all you've been having to deal with - my asthma was pretty much nonexistent when I was studying and my current job is very sedentary and not very demanding.

    Also sympathise re the hospital appt - so frustrating when they are the only ones who can help but you can't get to them! My last was end of March and next is also not till August (though have to go back to repeat lung function tests as they were so odd my consultant thinks there must have been a technical fault!)

    I can understand where you're coming from with the job (I have friends who are teachers, and I know that one of the disadvantages to having the holidays is that you have less flexibility about time off during term). And the gap before your next appt just seems far too long when you're struggling. Is there any way of insisting, or getting your asthma nurse to insist, on an earlier appointment? Getting help now if you can could make it easier in the long run for your job if the evenings/weekends situation starts encroaching, but again I understand it's quite hard to suddenly say 'I need time off' when you seem to them to be fine. You could of course say quite reasonably that while you're coping fine, you want to make sure this continues long term and in order to do this you may need occasionally to take time off to sort it out.

    Really sorry, this has come out a bit long and no idea if it's any help. Hopefully not too much about me - I just wanted to say that while we're not quite in the same place, I understand where you're coming from but think if you can, taking some time to sort it might be worthwhile (says the person who hasn't even told her manager she has a problem...).

    xx

  • I can not see how you would like Rossi like that, he is a father figure, therefore those thoughts would be wrong!!!

    Yeah, somewhat. Went to work twice now the day I have broken ribs cos I just think, how is it going to hurt less at home when I can think about it more? Also think about how hard it will be to pick up from days off an dhaving had supply teacher in etc and think that would make me feel worse!! Your's is far less about choice though hun isn't it?

    Also I do feel like I am wasting GPs tme but receptionist stopping me getting to see my asthma nurse. They only tend to give you prebooked appointments (three weeks ahead). Which is why I let my hayfever spiral my asthma down for three weeks whilst I waited for the appointment to come up. Also, do you urgently need to see someone today, well, I think I can keep myself alive so I guess not is normally my thought process! I think that question should be seriously reconsidered as if it was what I consider to be an emergency you would ring 999.

    Will probably try and do battle tomorrow as chest pains are just annoying me now and I don't see how I am going to stop the pred so guess I should haul my butt in. There, that told me!

  • i know he is. Spencer is my type of guy in real life. My mum likes hotch.

    The advise i give is what people tell me i would be even worse now if i hadnt listened to my mum or the auk nurses. I am very much like you my gps is the same and the receptionists like to play god with appointments i was having an asthma attack and needed to see some one and they told me i had to wait until the next day.

  • I have never really thought to phone AUK nurses. I am still building up to taking on the receptionists at the GP's, they can be so exhausting in themselves.

    I prefer seeing my asthma nurse as I don't have to go through my whole life history with her, ehreas when I see the duty doc I seem to have to go through everything everytime, even things like 'What brown inhaler do you take?' 'Brown?! I have pink, orange and green?' 'Oh, that seems an awful lot of inhaled steroids, ypou should stop one of them'

    This conversation actually happened and a doc at my practice told me to just stop taking one of my inhalers and actually took it off my repeats, quite a scary feeling ensued!

  • Hi nickynoo,

    well, I agree-it all depends on the surgery you're at! Mine's been fab. When I ring up and say I have acute asthma problems they always say to come in straight away. I usually ask to see my asthma nurse as she's the best, also my gp I'm registered with is good.

    On a few occasions when they were both not in I had to deal with other docs and the ones that aren't specialised in asthma were rather rubbish at giving advise.

    It all depends on how much knowledge they've got in asthma.

    But receptionists should know how serious our condition is and not delay an appointment!

    I would ask your doctor what to do about that.

    Love Lydia x

  • OK, is it really stupid that I am now in tears (of frustration)? Did finally ring the docs, receptionist got asthma nurse to ring me so thought was getting somewhere. Then told need to see doc, can accept that! Have an appointment with the doctor that tried to take away your inhalers! Aaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

    I actually give up.

  • Ask the receptionist if it is possible to see a different doctor... you may be lucky enough to get an appointment with someone else, if it is an emergancy appointment you may be stuck with the doctor you don't wish to see, but it is better than seeing no doctor at all and deteriorating and then needing an a and e visit...

  • I learnt that if I want to get better I need to take appropreiate action. So if I act fast, I won't get hospitalised for long.( Stay -ins) But get treatment in A+ E, my GP only deals with minor concerns . As asthma is too unpredictable and they end up calling an ambulance for me when I struggle to get to the surgery.

    If i need nebulisors i need them back to back for long periods, so this means hospital. If you get worse dont hesitate to get help, once your gp gets you sorted maybe the asthma will settle. If not, they can give you an action plan. so you know what you need to do if the asthma faills to respond to your meds.

    Gill

  • Thanks for that, is good to know what pther people do really.

    I went back to the GP today who kind of said what I was expecting, that as I am on step 5 already (although I thought I was step 4) there isn't much they can do and is down to the cons at Southampton. But she did up my pred for now on a reducing dose after 5 days.

    I have pred on repeat to start straight away and nebulisers and either 2 puffs of ventolin every hour or 10 puffs every 4 hours but I can't increase my inhaled steroids when things start to slide as they are already at full whack apparently.

    I guess it is just one of those waiting games, thanks for thoughts and ideas Nicola x

  • Hi there,

    Ijust wanted to say I know what that's like and have been there. I got myself in some scary situations because I was so ""used to it."" Except it was getting worse, and then I had some times I probably should have called emergency services. So finally this Fall I went to the ER three times? Anyways, I finally realized that if I was having the much trouble it was better having other people around to help out. Really I think it's supposed to be if what you usually do at home isn't working, and you are kind of miserable like that, that this is when it's best to go in. A friend of mine said that once you're wondering if you should go in, that this is usually a good time to go in. I totally understand the not wanting to live at the hospital though...that kind of sucks. Anyways, I hope you start to feel better on your pred. I know I hate it, but it does help.

    Bee

  • Thanks Bee,

    I guess I realised this last year as part of a study I had to have a nebuliser to do another spirometry and thought it was stupid as I was fine and then realised what real breathing was and hopped an dskipped out of hospital. I just feel like I shouldn't go to hospital unless I can't talk more than one or two words and/or am blue (sometimes don't even go then as I trust my own neb too much) and have been before because I can't do anything to realise tiightness and they seem to get really uppity and make me feel I am wasting their time because I am not at death's door.

    Pred does help and I am very responsive to Ventolin which is why I kept holiding out, thinking it would kick in soon! Well I guess my lungs have no choice now but to listen to and resond to four hourly nebs and 60mg of pred!! Listen and listen good oh useless lumps of bluey grey tissue!

  • I know...it's awful when health professionals don't take us seriously. I'm still convinced it's better to go sooner and be a bit healthier than be desperate I suppose. I got into trouble with a home neb. once and rather learned my lesson. But you know best what you need. Give em grief if you have to. But I'm glad you got the pred. That always helped me too...but it had to be the right high dose :).

    Bee

  • NickyNoo, You've had a very hard time with your asthma and having to give up your skating must have been heartbreaking.

    I think that most of us have a degree of resistance to admitting that we need help - I have always found it very difficult, even when I know I'm in real trouble and should see someone pdq, and I have always made excuses to myself like, my problem isn't serious enough to take up their time or it's getting better or it's just something I've got to live with so I need to just get on with it ...

    Anyway, a short conversation with a friend made me realise why I do this, which I won't bore you with now, 'coz that might turn this post into a novel (heheheh)

    So, now I understand why i'm reluctant to go and realise that this behaviour doesn't do me any good, I try to ask myself what I would say to a friend who had the same symptoms as me. If I think I'd tell them to get down to their GP (or A&E) then I figure that I ought to take my own advice and go. It's very easy to say but not nearly so easy to do, I'm afraid, but I've taken to giving myself a treat as a reward and I'm slowly improving.

    I guess the important part is not the reason for being slow to seek medical help, but accepting that this behaviour doesn't do any good and trying to find a way to get past it without increasing the level of stress. If I could only find somebody willing to lay a trail of chocolate that i could follow all the way to the surgery I'd be fine ..... :)

    I do seem to have rambled on, and I'm sorry that this post is so long, but I'd hate you to think that you were the only person who finds it difficult to go and get help.

    Keep well

    xx

  • HI,

    'Getting away with it' once or twice makes it worse later, I think. Also if you go and they make you feel like a timewaster - I've had this sometimes with GPs for non-urgent but troubling things and it makes me more reluctant to go again, so imagine the same applies in more urgent but not obviously urgent situations when you're wondering whether to go. And I've never booked an emergency appointment - I always think 'oh, it's just a few days, I've always managed before'. I feel like if I do, they're going to say 'couldn't this have waited?'

    I've never actually gone to my surgery and asked to be seen immediately, or called out of hours or anything. I have no idea if I should have done, but because I've never actually collapsed or anything I always figure I didn't need to go, so next time I'll be even less likely to think I need to.

    It's a bad thing to do, but honestly I have no idea when I need to get help short of blue fingernails etc! I can't think 'what would I advise someone else?' because I always think it's best to be cautious with someone else, so I'll tell them to go if in doubt. I did urge my friend with a concussion to go to A&E, but that was a no-brainer after she told me she'd poured water all over the floor because her depth perception was off, shortly after catching a 9-stone cheerleader with her face.

    Sorry for being long-winded again, but even though I've not had the emergency situation I can sympathise with the dilemma.

  • hi i was just talking about something like this today. i think that sometimes its better to let people to see you as you are health wise and then they can help when you arent able to ask for it and allow you time to be at home or hospital without feeling guilty about missing work etc. you know yourself though that if your peak flow is low and you are feeling weak then you really should be heading to hospital. think you will find everyone on here has had a rant or 10 about feeling miserable over their asthma so dont feel bad :)

  • Thank you so much for all your advice and support, my asthma nurse does say that asthmatics are a dangerously stubborn and independent breed of theie own!

    I think my main query was if I don't present myself at Aand E and such when I go to cons appt it is just my word as to how bad things are, hence no Omalizumab.

    Saying that, I have had two days of 60mg pred and four hourly nebs and just walked the 400yds to ASDA with my dad, yippee! He wasn't too impressed at the speed, coughing or need for neb when home but I am chuffed lol.

    Another day of rest tomorrow and I think I will be on the road, with another 3 days grace of 60 pred.

    I really think if I ever get so bad again I will go to AandE honest promise, as I think I have scared myself a little, but really think I am pushing through now.

    I can not believe I never found this site in the last 13 years, so many amazingly lovely people. Mind you said the same about KAHs too, would have been great for me.

  • Yay to Asda walk! I have that feeling too when I manage something better than my usual but not great and am pleased, but everyone else looks at me weirdly. I also have odd insane moments when things have been a bit better and I think I can manage something more than my current usual zombie shuffle, so sort of speed up to catch a train - but I always pay for it big time later, and have to hope my doctor or anyone hasn't seen the moment of idiocy when I try to go fast or I will sound like a total liar!

    Definitely worth presenting yourself somewhere so they can see how bad it gets, I think sometimes actions speak louder than words. I was really quite pleased in a way yesterday that doing my lung tests was so hard and I was visibly knackered and breathless in an actual hospital, because it showed how things were.

    Good luck and hope you get things sorted out soon. xx

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