Can't make the right decisions when I am unwell

I'm a bit cheesed off at the moment. Asthma is rubbish and not settling. been to GP and they put me back on pred, saying I should have started it myself much earlier. Just trying to avoid another stay in hospital. They keep telling me to go straight to A&E and not to them if I get worse as last time I got very sick at the GP surgery. They dont seem to understand what it's like. When i am really wheezy and sleep deprived I sometimes sit for ages wondering what I should do. I know the options are taking steroids myself, going to GP if not too unwell or going to A & E. Trouble is, sometimes I think I am not too bad and go to my GP and they flip out saying that I shouldn't have left it so late and that I should have gone straight to hospital. I never seem to get it right and now feel like they are putting pressure on me, like if I dont take steroids in time, it will be my fault if I end up in hospital. I know they dont mean that but that is sometimes how it comes accross. It's so hard making the correct decision when you are ill. The last time I ended up in hospital I struggled to my GP instead of going to A&E, which I know was wrong. Trouble is, I do not know or remember why I made that choice. Seems logic goes straight out of the window and I sit agonizing over what to do instead of just doing it. Is it just me that can't make a decision? I do know what I am meant to do when things get worse but somehow, I kind of think that if I get to my GP and they listen to my chest and put me on steroids, then they have decided I need to be on them, rather than me having to trust my own judgement. I find I do not always perceive how wheezy I am. Had many nights of broken sleep and nebs, yet during daytime just feel tired, not particularly wheezy. Doc said chest was awful though and why hadn't I already started steroids. I now feel guilty for not taking care of myself but to be honest, I feel like I am unable to judge my situation. Please tell me that someone else feels like this too as I am struggling today and could do with knowing I am not alone.

[Hidden]

Hello Karly.. so sorry to hear you are having such a rotten time of it...

It is hard to know when you should seek help, but all I can tell you is to err in the side of caution. Is better to be told that nothing much is wrong, than to get to the stage when you are having to be rushed to hospital.

Try keeping a record of how you ""feel"" and soon you will be able to compare the state of your asthma with greater confidence.

I am sure that some of the ""professional"" folks in the forum may have some other suggestions for you... but please don't torment yourself by telling yourself off... your medical team would not want to see stressed I am sure of that.

remember to take Peak flow meter readings not only when unwell but at regular times...maybe at least three times per day and soon you will get the confidence to have faith on your own judgement as you learn to recognise all your symptoms

Keep well and please look after yourself

Hugs and love from the Orkney Isles

Susy

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Thanks, just a bit frustrated. Seems the longer I have had brittle asthma, the more difficult it has become to predict. Sometimes I get really wheezy needing nebs and am better again in half an hour. Sometimes I do not get better and need further help. It's frustrating not being able to tell which its gonna be. Obviously, if you are trying to hold down a job aswell, you kind of have to make a decision to try and go to work or take time off and go to the GP or go to hospital. Trouble is, I can't ever tell what will happen. Seems I can't perceive my level of wheeze very accurately anymore either. My peak flow is all over the place on a day to day basis so not much help for me. i know most of you are in the same boat but just wondered if you have any advice. Sometimes, its like, if I go to my GP then they can tell me to take pred or antibiotics or send me to A&E and then I don't have to make the decision myself and I feel more confident with someone else making the decisions. Is this just really weird?? or do other people do this aswell? I feel a bit embarrassed confessing that this is how i feel. I think it makes me feel safer because I know that i am not relying on my own judgement any more.

[Hidden]

Hi Karly,

I'm sorry you're struggling at the moment and having to make these difficult decisions... it's not easy at all.

You're not alone in this one - I think all of us struggle with when to seek help and if we're honest we've probably all made the wrong decision from time to time. I know there have been occasions when I have left it too late and been more unwell as a consequence, and other occasions when I have gone in to hospital when I probably could have got away with treating the attack at home. Brittle asthma is by nature unpredictable and I'm afraid there are no easy answers.

It's totally normal to want someone else to make the decision for you or to validate your decision to go to hospital. Please don't feel embarrassed about that. None of us want to be seen as seeking help unnecessarily and we all want reassurance that we are doing the right thing. It's very hard to be objective about your own health and very natural to want someone else to take the decision off your hands - and to an extent, that's what your GP is there for. Obviously, if you are having a crashingly bad attack, calling an ambulance is the only sensible option, but seeking help from your GP for those 'in between' attacks when you're not quite sure what to do is perfectly reasonable.

As you say, in brittle asthma, peak flows are often all over the place on a regular basis, so the usual Asthma Action Plan with instructions for particular peak flow readings can be less than useful. Nevertheless, if you monitor your peak flows regularly, you may find a pattern which predicts whether you are about to have a bad attack - lower peak flows first thing in the morning, for example. It might be worth asking your GP to prescribe a PIKO-1 peak flow meter, which measures FEV1 as well - experiences and the evidence are mixed on these, but some people find that FEV1 is more representative of how they are than peak flow.

As already mentioned, it's also worth keeping a very detailed diary of symptoms, sleep quality, inhaler and neb use and so on. Again, over time you may get to know some of your warning signs and see a pattern that will help you to predict how things are going to go. Unfortunately, though, by the nature of brittle asthma, there may still be those attacks that surprise you by coming out of the blue.

I'm concerned that you mention lots of symptoms and need for nebbing at night. Night-time symptoms are a big indicator that your asthma is out of control and should not be ignored, however well you are feeling during the day. You should certainly seek help as soon as you start to have disturbed nights.

The real take home message, I suppose, is: IF IN DOUBT, SEEK HELP. Often that will mean calling an ambulance. It's far better to call an ambulance, even if you are in doubt as to whether it's strictly necessary, than to risk the consequences of not seeking help. Most of the asthma deaths that occur in this country are preventable, and most of them occur because people do not seek help at an appropriate time.

I would suggest you discuss all these issues with your GP; he or she obviously knows your asthma a little and may be able to give you more guidance as to when to start pred, go in, etc. You may be able to come up with a modified Asthma Action Plan between you.

Take care, and remember you're not alone with this problem

Em H

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Hi Karly, really sorry to hear you are having so many probs at the moment. Believe me you are not alone!!

I am a parent of a 12 year old boy who has asthma. Like you, I feel the longer he has had bad asthma the more difficult it becomes to determine when to start pred or seek help. If I stuck to his plan he would be constantly on pred and taken by ambulance from school on a daily basis. He is supposed to start a course of pred at the first sign of a cold or if PF drops below 50%. The school are supposed to call an ambulance if his pf remains below 50% after 10 puffs of ventolin, but he has been regularly below this for the past 2 months and displays no signs of struggling. They would look pretty silly asking for an ambulance for a child talking in full sentances with normal breathing and pulse rate who is not wheezing! Obviously if he was struggling they should call an ambulance, but we have now come to an agreement they will call me if he appears fine but with reduced pf and I will take him to get him checked out.

In the past year I have been 'told off' for being too complacent, asked why I keep taking him to A&E when he appears fine, told I should have started pred sooner, been told he didn't need pred and had the suggestion perhaps his asthma is stress related as he doesn't wheeze. I have even had a specialist hospital say he needs admitting to our local after an out patients appointment only to be told when we get there that there is nothing wrong. If the doctors can't decide when he is ill, how am I supposed to?????

What I am trying to say is that brittle asthma is very difficult to grasp as the response to ventolin can vary so much and relying on pf's to note a deterioration just doesn't work when they are so varied on a daily basis.

I sympathise and understand how frustrating it can be. Do not let your Gp bully you into not using them. They are your first point of call if you do not feel you are in an emergency situation, it is horrible having to make a decision whether to take pred or not and I certainly feel better having a doctor say to me it is needed. We are fortunate that Jay has an emergency card which gives us direct access to the peads ward at any time or advice over the phone if needed. This has significantly reduced our GP visits and I now let them decide what to do. I don't suppose they do this for adults?

Hang in there and don't worry about bothering them, it's their job. If they feel you need hospital treatment they can arrange it from the surgery. If they feel frightened by your condition they should understand how frightening it is for you and not expect you to make such important decisions alone.

Take care, Nikki

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Thanks so much for your support. I was starting to think I was really unusual for wanting my GP to tell me what to do all of the time. They tell me that I should know my asthma better than them, but sleep deprivation and worsening symptoms have a weird effect on my decision making and I just want someone to tell me what to do so I don't have to be responsible for the outcome. It's good to know that other people feel this way.

[KateMoss]

Hi Karly,

sorry your having a naff time at the mo.

I know what you mean about making decisions. I have on occasion got in early just in case to be told am OK etc & I can just as well manage at home.

Other times I have left it too late............

Tiredness is a real pain when making judgements about our asthma. It can be difficult to decide if you are just tired on top or really struggling.

Perception can be difficult too especially when brittle asthma changes its behaviour.

I am sure you are taking care of yourself but sometimes feel why should I be ruled by my symptoms all the time and putting them aside to get on with life.

Brittle asthma is a huge juggling act with too many balls.

Your not alone!

Some good coments already so won't waffle on any more!

Take care

Kate

XXX