Just wanting some advice from others in the same boat. Recently had another admission and things went downhill very fast. Tried to get to GP but it all went wrong and ended up with me deteriorating at GP surgery and them calling an ambulance. Ended up quite unwell in HDU.
Went to GP since I have been discharged and they were commenting on my strategies for coping in an emergency situation and in making the right decision. I know they are just trying to help but I kind of feel like they are suggesting that I am being irresponsible by trying to get to the surgery instead of just staying at home and calling 999.
The thing is, its really hard to know what to do for the best. Sometimes I go to GP, get them to listen to my chest. They then agree whether I should start steroids and I go home. Other times, I go to GP and things get worse very fast. In these situations, I should stay at home and call 999. The thing it, I never know which its going to be until it's too late. I find i so frustrating and they make me feel guilty when I get it wrong.
I feel frustrated that they dont understand how hard it is making an accurate judgement when you are ill, especially with asthma that can change from minute to minute. I also feel that they only see it from the medical point of view. I also have to decide whether I will go to work aswell. Sometimes I go to work when I am probably not well enough, but I have a mortgage to pay and an employer to keep happy.
I just wish they could see how frustrating it is from my point of view. i am not trying to be an awkward patient but just a young adult trying to have some sort of normal life. I think they feel like I dont take it seriously, which isnt the case at all. If I think about my asthma too much then I just end up getting depressed about it all. My GP seems to think that my flippant comments mean that I do not understand the severity of my condition and she is worried by this. On the contrary, I am more than aware how unwell I can get. I just cant cope with talking/thinking about it too much.
My husband says should see another doctor but I feel that I need to go back to see if I can get her to understand where I am coming from.
Sorry about rant. Steroids causing high levels of tearfulness and emotion. post hospital tiredness playing a part too I think. Would be great to hear from anyone else who understands
I can empathise totaly with what you are saying, having type II brittle asthma my attacks can happen and or worsen very quickly and I used to have a really good relationship with the Nurse practitioners at my surgery but when my condition turned suddenly serious last year and I ended up going into respitory arrest whilst there they seem somewhat scared now to deal with me, my GP though is still great and understands more than they do so I tend to only see her now which works ok when shes in !!
My problem was the fear of having things go wrong at hosp if I went there and could not explain properly about my condition and what i did and did not want to happen which caused my reluctance sometimes to go there first, so with the help of my GP and the resp cons we drew up a protocal so at least I now feel a little more reassured as to what will happen and in what order.
I does not eliviate the frustration and I think only those that have been there know how it feels, and how hard it is to make the right choice but my GP put me at ease and said last time that at least i had done right in ""making a choice of seeking help"" even if I was not aware of where the best place because of how I was feeling, instead of sitting at home alone and leaving it open to maybe the worst happening and I have always felt at peace with that knowledge!
Hope that helps!
snowy
thanks Snowy, it's good to know that someone else can understand. I think I should go back when I am calm as I just ended up crying the last time and getting more and more angry with her as I felt she wasn't understanding where I was coming from.
Perhaps I need to sit down when calm and try to explain how I feel.
I think that would be good, its what I did and also try to devise an action plan and or protocol as it made my life easier, as we have both said they only see the ""medical"" side of it and not the emotional trauma that goes with having bad asthma symptoms, and the relucatnce of going into hops again when you have been there more times than you care to mention!! and for me esp not wanting to give in to it, you always feel like you can cope and when you cant it seems to happen so quickly that you feel v out of control.
I hope you get it sorted!
Hi
I just want to say that your not alone. My family friends work colleagues consultant and GP are all always telling me that I should make better decisions.
I have the same problem...brittle asthma...one minute I'm at work alittle wheezy and short of breath...half an hour later I'm on ITU on a vent. When they wake me up everyone is busy lecturing me about not leaving it too late and getting help before, if I go to my GP they send me to the hosp, if I go to A/E they call anaethatist before trying anything else which drives me mad as I know they're going to send me to ITU again when I'm sure some of the time I don't need it.
Like you Im not doing it to be awkard or to annoy people I can't predict how bad I'm going to be and so don't know what to do. I try to work because I too have bills to pay and an employer to keep happy, but spend all my time saying "" no I'm fine thanks...I don't need to be in hospital""
It's got so bad that even if I cough now people are saying ""have you got a bad chest, shouldn't you go to hospital"" I want to scream....NO I ONLY COUGHED!!!!!!
It drives me mad!!
Unfortunately I've no advice as I'm in the same boat, only to try and keep safe.. as long as you get help from somewhere and don't sit alone whilst your ill. I think you should talk to your GP again and try an explain, perhaps suggest your GP looks on here, then they'll realise your not the only asthmatic with these problems.
I am lucky I have an excellent asthma nurse who understands why I make the decisions I make and also understands my frustrations.
Good luck
and remember your not alone!
Thanks truly, that helps alot to know I am not alone. I have another appointment booked so will see if I can try to put accross exactly how I feel without getting upset. I guess things won't improve unless I am quite upfront about how I feel. Trouble is, I get all upset and feel a bit intimidated with doctors so I am trying to stay calm so I can put my point accross clearly.
Thanks again for your words of support and also to those who have pm'd me
i can also sympathise with you. I was in the same sort of siutation my asthma attacks take me so quick I never know when theyll start and my GP says the same thing.
I am sick of these attacks and I dont think that the GP's realize how frustrating they can be as they lead ur life and u cant have a ""normal"" life. Luckily weve an asthma nurse who knows how we feel and can sympathise with us and when we explain to her how annoyed we all are she then talks to the doctors.
I have brittle one and two asthma and I hate ringing 999 thats y i always go to the surgery but it is worse so i understand y they say that th u as i nearly died i actually stopped breathing waitin to c a doctor.
what they are probably saying to u is if u think its gonna be bad dont wait just go to accident and emergency straight away. Comin from a student nurse someone died last week in the hospital i was in placement with an asthma attack and she didnt wanna ring 999 and drove herself
Karly - if you are worried about getting upset would you consider writing your concerns down and just handing the paper to your GP, I did this once when i felt unable to broach a particular subject and it really broke down any barriers straight away and the issue was sorted alot easier than if i had gone and tried to start the consultation verbally.
Do you have a protocol arranged with your consultant about when you should go in if not it might be worth discussing it with them or an asthma nurse.
I always used to go to the GP but after a discussion with then ,then my resp nurse i was given guidelines to at what stage i should call for an ambulance.
I intially found this very hard as at times i felt like i was going in too early and so tended to wait but then i learnt the hard way ending up in ITU on a vent as i left it to late . A +E would rather see you sooner than later and be able to send u home if appropriate then for you to come in a much condition.
I have been where you are too many times to count but i have gradually learned when to admit defeat (not always gracefully i will admit) would your GP let you ring for advice and then that gets them to make more of the decision if you are worried about getting it wrong?
I f you want to chat more pls feel free to pm me.
Thanks, I sat down and had a chat with her a couple of days ago and told her that I felt I was being misunderstood. That I am fully aware of how severe things can be but that I usually don't want to talk about so I just deal with it in a matter of fact way.
regarding when to get help, I prefer to get someone to listen to my chest so they can judge properly as I feel unable to do so. If I feel I can get to the GP then I will do that rather than calling 999. However, it doesn't always go to plan. I guess we need to discuss it further but it's hard for them and for me because none of us know how fast I am going to deteriorate on each occasion. For example, a couple of days ago I was so wheezy I couldn't speak. One neb and I was wheeze free. however, sometimes I am less wheezy and can still speak but nebs aren't helping as much. Sometimes I just sit thinking over and over trying to decide what to do and it hasn't got any easier then longer I've had brittle asthma. my attacks don't always follow then same pattern.
At least now I have spoken to my GP, she knows that there are issues that need to be discussed. I feel that often with brittle asthma, so much focus is put on the symptoms that you go to the surgery with (and rightly so) but sometimes the way you feel about things and the way you cope is pushed to the background and not addressed. This is partly my fault for not discussing it more openly and not wanting to talk about things too much. I guess now it's come to a head, we both are seeing things from different angles.
I can not tell you how much i have in common. I also have type one brittle asthma and was often in the exact same position. Not only with my GP's but also the hospital doctors on the ward. My asthma attacks were so sudden by the time you decide what your plan of action is going to be your already gasping for breath. Now do you wait gasping for breathe until the ambulance arrives (that is if you can talk due to the inability to breathe) or do you go to your local GP who can start you on a neb whilst waiting for the ambulance. Morale of the story as an asthamtic and also a severe asthmatic you have the right to see a speacialst hospital consultant. I have attended a problem asthma clinic for years now and the quality of asthma care is top class compared to my GP surgery. Not only do you receive excellent care but your also on the frontline for any new medications that become available.
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