Whilst i was costafied i found things very awkward on my ward and at times almost slightly upsetting. A lady a few yrs younger than me was brought in after an asthma attack and was still struggling, eventually after she got very distraught and her partter quite tetchy they gave her aminophyllin and mag sulp which seemed to sort her. The next day i was talking to her and i was shocked surprised and frustrated with what she told me - despite only being on symbicort 200/6 she had home nebs?????!!!!!!
she frequently looses conciousness very suddenly during attacks?????(she kept on saying she was going during her attack on the ward but i think it was mmore hyperventilation)
She is a smoker (but refused nictine patches when offered).- this is what i found the hardest. As soon as she was off the ivs off she toddled for a fag then of course on return she was very wheezy and demanded lots of medical attention and always went straight back on the o2.
Now i never have smoked and do all i can to control my asthma with alot of meds and of course dont always suceed but when someone comes onto the ward like her i found it really upsetting and it also made me very angry but the nurses just flapped around her as is there was nothing she could do to help herself. She also managed to keep the whole bay awake all night and most of the day with horrendous snoring - i think she may have sleep apnoea and she ate for england,was very obese (i know im no skinny minny but i try to keep my weight down) blaming it on the pred when she only takes it occasionally.
I found it really upsetting and made me quite angry (not the norm) and it has left a lasting impression on me which i cant seem to shift.Any ideas suggestions and coping mechanisms that people kno to help me get over this.
It is so dificult when someone doesn't look after their general health and blames asthma for all their problems and then has all the attention because someone makes a fuss then they are not well.
I try to leave behind things when I go home or chat to a nurse about it at the time. It is difficult when you are slung in together with other people with differing perceptions of their health and their needs.
You can identify more with someone in a similar situation to you eg brittle and really having medical problems.
On the other hand...
I have discovered to my cost, the problems of befriending with someone in hos, who is 'brittle', becoming friends ( as often we all do for support! I have a few local brittle friends that I have met in hospital) But this suposed friend of a few years has caused me a lot of grief before christmas, and now today with a very upsetting text. (I think it was sent in anger)
Anyway, enough of my woes.
Every patient is different and needs differing amounts of treatment and it often results in some people being very demanding. People often need to find an excuse for their lifestyle problems and they blame illnesses instead of their lifestyle.
I can't really explain how to get over a bad experience apart from chatting about it and airing / venting your frustration.
Hope your feeling better & take care
Love & Huggs
Kate
XXX
PS well done to Daughter! XXX
I would have been equally angry and upset to meet such a person. However there are many people out there who have asthma and choose to ignore it and do nothing to help themselves until they get really sick.
If this has really upset you, get a piece a paper and try and work out what annoyed you.
From your post, I will make a list, and then you can dismiss these ideas.
1) why was someone on symbicort 200/6 also had a home nebuliser? Prehaps she badgered her doctor into giving her one, prehaps she is a 'firefighter' and does not take her drugs properly. why did that annoy you?
2) Her partner made the most enormous fuss, and so did she? Did that mean all the nurses attention went on her, and so the rest of the ward was ignored?
3)Was it the fact that after all this fuss and attention she went and smoked, and then was Sick again?
4) Was it because she was (as far as you could see) making absolutely no effort to help herself as she was obese and a smoker etc?
5) Are you angry because you think that as an asthmatic she might be giving all of the rest of us a bad reputation. Ie: all asthmatics are fat, smoking, ignorant, hysterical, and needy.
6) Did you think that people might put you in the same box as her?
7) Was it her attitude?
8) Are you still sleep deprived from the snoring?
Okay thats my list. So now you should make a list of the proactive things that you do to help your asthma. Then you should list all the the things that this women obviously does not do, and why they annoyed you. It should make you feel much more superior and hopefully a bit better. Then you could destroy it in an amusing way.
I think that when you are sick with asthma it is very easy to get upset. I find that particularly when I take pred. for any length of time I get very upset very easily. So I wonder whether there is not a little bit of pred speaking, assuming that you are taking it at the moment.
I can't say this will be helpful for you, but it is what I would do.
Cheers RI
Thanks for your replies you both came up with some very valid points, Yes i do think that pred mayb contributing as im on a horribly yucky high dose and that combined with still not being well has made me more emtional than norm.
Ri - I think i answered yes to most of your points i wasnt too worried about the rest of the ward as we were all okish at the time . I get very frustrated as i take all my meds religiously and yet still end up with frequent admissions and have tried all i can do to avoid attacks (no pets, smoke free, no carpets, anti allergy bedding, avoidance diet i dont even go to vivit my birth mum cos her and step dad are smokers etc etc)
like I said in my original post im not slim (in fact a couple of stone over (but she was 10+over) but it was the blaming her health for it when in fact if she took more responsibility she more than likely could have avoided the admisssion and certainly the extra treatment she ended up having.
sorry for ranting but it has kind of got me on my soap box a bit which isnt always a good thing!!! thanks again for the support tho.
Part of me wanted to befriend her as i felt that in some ways i maybe able to help her but her general attitude towards some things have marred it.
I have spoken with my nurse about it and hubby (he wanted to give her a piece of his mind!!) but for some reason its still bugging me.
I can lend you my shredder if I haven't worn it out in a couple of weeks.
I have written stuff down and then shredded it to relieve stress!
Some good points Ri too.
Take care please!!!!
Kate
XXX
just my voice
I was going to start this post off with I am sorry if I seem to be having a go! But no I changed my mind.
I hope I am not ever in a ward were someone is making judgments on my strengths / lack of control by what size / weight I am, or by how much I was eating.
I would hope not to have to give expiations to all others in the ward as to why I am over weight and to apologise for it.
I feel very strongly that we should not judge people by what weight they are. I had been a size 12/14 through-out my 20’s – 30’s and most of my 40’s until I became seriously affected with uncontrolled chronic asthma high dose’s of pred not only affected my weight it also has had a serious effect on my bones (spine) so due to my meds and lack of mobility the weight just piled on. I do not want nor need any sympathy as we all suffer to some degree from one thing or another.
Yes it’s not fair when people are kept awake due to someone smoking and making themselves ill but just how fair is it for people to make assumptions about why someone is over weight, and that people that are more overweight than others are a lesser sort of person due to the lack of control.
Yes maybe it’s my pred talking and I should just shut up and ignore the comments and just be glad it was not me in the bay at that time (thank god) but commenting on the appearance another person (who people would not have had the full medical history of)
I did find very offensive.
Thank god it’s a free country.
Chrissi
I did ino way make my feelings known to this lady and in fact we did actually get on quite well! I am not saying she is any kind of a lesser person either! What i found hard was that she blamed pred and her asthma for her weight when given the meds she was on and the obvious diet (which she admitted herself was disgusting) they were to blame. She discussed at length her health problems so i feel my comments are valid.
As i have also said i dont judge by size as i am not slim myself (size18-20) but what i do is try to control it as much as i can, i am also quite immombile due to damage to my bones thanks to the steriods plus other joint problems and have had to have surgery because of it and also due to my uncontrolled asthma as well.
My point was basically that i found it hard that as i make such an effort to help myself yet still have frequent (somtimes resulting in being ventilated)admissions yet i have done all i can to prevent these someone else can come in and cause alot of problems on the ward when they could obviously do things to help themselves and were blaming the meds and asthma when it was obvioulsy not the problem.!!! I hope u can now understand where i am coming from
Kate - thanks for the offer of the shredder i have a well used one here and have done as Ri suggested and in due course will shred the said peice of paper!!
Hops, I can fully undestand where you are coming from. It must be so hard knowing you do everything you can to stay well yet still have endless admissions. As regards the weight issue we al know pred causes munchies which inturn causes weight gain but becoming very obese can't be blamed on pred alone, eating junk has to contribute overwise every single asthmatic would be very overweight and they arent. The smoking issue I can never understand, there are ptients who stand outside RBH with drips etc puffing away saying they cant give up. Thats such a cop out as if people really wanted to give up they could.
I hope you feeling better soon Hops
j x
Hi hopalongkp, Just a note to say I know how you felt and agree with the others that possibly some of your annoyance was due to being ill yourself and the medications. I dont have brittle asthma but severe chronic instead. i get cross with people who don't have a health condition at the moment but who abuse their health by smoking or eating junk food and take no exercise. In my case I know it is about control - when you have asthma even though you do all the avoidance of allergens eating properly, taking meds etc. etc., you are never in control really. I want everyone to have their optimum level of health which in my opinion can only be done through control !!! how batty do I sound!!!
I think that when you do not have good health it is hard to see others abusing theirs even though I know you do not appreciate it until it is gone - when its too late.
Does any of this make sense - I am saying I know how you felt but then again we never know the sort of pressures other people are under or how focused they can be on their treatments - some people find it all a bit scary and bury their heads in the sand.
Hope you are feeling better now emotionally and physically,
Take care
Sandi
Sorry I have to agree with Chrissi. I too have just come out of hossie and too were sharing a bay with a young girl who had had a bad asthma attack and who seemed to abuse everything.....smoked, ate, didn't take meds, had cats etc etc.
I too was annoyed as being 'perfect' i take my meds religiously, eat a healthy diet avoiding wheat and dairy, dont smoke or drink alcohol, try to stay fit etc etc and still end up being admitted and being ventilated for the 11th time!.
However I'm sure that in reality and not the 'perfect' world I too may be seen as a 'problem patient' I am about 8 stone overweight this being due to my rubbish diet 60mg pred and no exercise. When I can;t breath (all the time) and can't walk to the kitchen and stand and cook I nibble ( crisps, choc and bread) which puts weight on. Because I can;t breath I can't even climb stairs so can;t exercise not even a walk. I used to smoke in the days when I could breath but stopped about 5 years ago when I didn;t have the breath to draw on a fag.... and stopped purely for that reason not because I thought it was a good idea to stop to help my asthma. I now work with people and try to help them to stop smoking and believe me this is no easy task. Being in the medical profession I find myself disagreeing with doctors and questionning the care I am given which to an outsider must be viewed as being the 'difficult patient' when really I don't think I am.
It's all to do with self discipline which unfortunately I have none. Especially when I'm not well and feeling sorry for myself.
Please have a little patience next time your looking at someone and judging them they may be doing the same to you and drawing the same conclusions.
We seem to have a difference of opinions on this thread, and I can relate to both sides of the argument.
In an ideal world, we would all get along with our fellow patients, and we would all make good life-style choices and behave in a way that is optimum for our health. However, the reality is that we are all human, and most of us are probably guilty of making decisions that are not entirely consistent with what our doctors recommend. Most of us have probably also been in the situation of feeling frustration or even anger at another patient - feeling unwell, sleep deprivation, high doses of steroids and frustration about being in hospital all make things worse.
I think we all recognise that these feelings can be slightly unfair or inappropriate, and I hope most of us would not express them to our fellow patients. We are lucky that we have this forum, where we can vent our negative feelings without upsetting the people concerned, and know that people will understand and sympathise.
Take care all
Em H
How mad is taking yourself to a football match week in week out when you know that the cold and wind are a recipe for disaster, but I still do it and often pay for it dearly, but I am still going to football. I am an ex-smoker too so I can hardly preach. And I am no perfect patient, if I forget my pred I take it later in the day, if i miss out the inhaler I don't lose sleep over it, it does not happen very often but I am not perfect by stretch of the imagination (hmmm should have been fosimax today but was starving when I woke up so will do it tomorrow) I would never ever claim I religiously take my medication on time, sub cut gets done when it beeps but if I am driving then it waits until I next stop. The only thing that I will not delay is nebbing if I need to neb then it gets done right away waiting to find somewhere to hide is not an option! There is no prefect balance I have been driven insane by other patients but I have the tolerance level of your average angry wasp especially when miles away from home and my family, I am sure I drive others mad myself. I have cried, hidden, shouted and even once thrown a peakflow meter across the floor in temper when I could not get the damn thing to record anything above 250! Put a couple of frustrated predded up women together in a ward and there are bound to be the odd bout of fireworks. I get annoyed when I hear of people being non-compliant but a little of me wishes I could also not take my meds and not worry about the consequences.
I think we have to remember that we are all different and that none of us are perfect.
I have to admit that I am not a non-smoker, but an ex-smoker and can appreciate how difficult it is for any smoker to give it up. Smokers are nearly all addicts and addictions defy all reason. I smoked for 25 years, knowing that it was bad for me, but could not give it up despite many attempts. I did eventually, but to this day, 15 years later, do not know where that extra bit of strength came from. It was a fight that did not just stop at giving up - it went on for many years after to stay a non-smoker. That was equally as hard, if not harder. It was not asthma that made me give up as I did not suffer from it then. What would be wrong here would be if she inflicted her smoke on others, but that does not seem to have been the case.
I think we also have to remind ourselves that asthma can be extremely frightening. I think it has been said before that those who have had severe asthma for some time can tend to be rather matter of fact about it as they are used to the major events. I am only a moderate asthmatic and have never been admitted to hospital for that. I have only ever had to have help from the emergency services twice because of breathing difficulties and can vividly remember just how frightening both those occasions were. I was not used to it and I had no idea what would happen. In such circumstances, hyperventilation would be easy to understand (IF that is what it is/was). That unknown can be even scarier for loved ones because they can feel so helpless and can only imagine what is happening.
I am afraid that I do have to agree with Chrissi too about the fairness of judging people by their size. Why does someone being overweight make them a target for criticism? I have never understood that view. Making assumptions about an individual’s lack of control just because of their size is as equally offensive as judging others by the colour of their skin.
Sleep Apnoea is also an illness, as much as is asthma, and has, as recently as this week, been in the headlines for the new NICE guidelines as to how to deal with it. I am not a medic, but I understand that Sleep Apnoea has different degrees and can, like asthma, also be lethal.
It is certainly not my intention for this to be taken as destructive criticism. I offer my thoughts in the totally opposite vein – constructive. It is so hard to look for positives when we are really so ill – it is probably fair to say that most of us have been there at some time, whether asthma or something else. Being seriously ill distorts things and meds do more of the same. From a purely selfish point, thinking positive has got to counteract some of that and, thus, help our own progress. The fact that it can also help others is an added bonus.
I am delighted to know that you are no longer costafied. Is she?
Alan
Just a comment about her only being on symbicort but on home nebs. I had home nebs when only on a pulmicorte inhaler as for the majority of the time i was well controlled but when did have an attack it was severe and rapid and i lived a long way from a hospital, maybe there are special circumstances around why she had home nebs?
EEEKKKK!!
I really didnt mean to open such a can of worms i was only after a bit of support and a chance to vent.
Please can i make one thing clear- I have nothing against anyone of any size as i have already said ,but what did irk me was she constantly complained about her weight then proceeded to eat uneccessary amounts of food BUT this is beside the point and what not was i was originally posting about. If i had anything against her personally would i be keeping in touch with her ?!!! Plus as i have said a couple of times - i have problems with my weight and am over weight so i know what it is to be judged by weight i have struggled with an eating disorder for nearly 20 yrs because of it!!! So PLEASE peeps i have nothing against her weight!!!
Marmite- the lady only lives a few mins from the hosp so that isnt an issue from what she said she got home nebs cos the GP was fed up with seeing her at the practice for nebs - but for some reason he fails to assist her in gaining better control. I spent a long time with her talking about ways and routes that may help eg asking for a referral to sleep clinic, resp nurse etc. Would i do that if i had somethoing against her -if anything i feel for her .
Alan- no she isnt still in she discharged herself after 3 days(she was obvioulsy not well enuf to go but still did and has since done another 24 hr stint back in!!)
I was after support in ways to enable to me cope with the fact the despite i do all within my ability to stay well as i can and out of costa i cant, yet someone who obvioulsy can do things to help herslf doesnt! Is that so hard for people to understand? Thank you to those who have understood where im coming from also.
This is obviously an issue on which there are very polarised opinions, and which people feel very strongly about. There seems to be a lot of emotion behind some of the responses.
Kirsten, I don't think you were wrong to post wanting support about the way this patient made you feel and suggestions of how to deal with it. It is always difficult when other patients inadvertantly make you face hard facts about your own condition - in this case, that you are still experiencing problems despite making the sort of life-style changes that you see this woman failing to make. I can very much understand your frustration with her and with the situation - I think a lot of us have felt or would feel something similar in the circumstances.
I think there have been some really good comments and suggestions as to how Kirsten can deal with these feelings of frustration and anger that she has been left with. If anyone has any more useful suggestions for coping mechanisms that Kirsten can try, then please feel free to suggest them. If not, then let's let this thread lie now - we have had a variety of viewpoints from different people and I don't think it will serve any purpose to keep reiterating the same points.
Thanks, folks
Em H
(mod's hat on head)
Hugs Hops, you didnt mean to open a can of worms I guess you just touched a few raw nerves. I guess we all have differing opinions but I think its a shame that the fact you needed space to vent and get some support has got lost amongst the views on weight,compliance etc.
Take care
J x
Sorry Em, wasnt being rebel just posted at same time
Hops,
Sounds like one of the things that may help in the long run is keeping in contact with her and making sure she's not let down by her GP. She sounds like someone who has been let down by the system badly. Hopefully all the things you have suggested will help her to make informed choices about what she does and taking control of her asthma. I didn't know how much my weight was a factor until a Dr suggested it. Then I thought I must do something about it. Until that point I hadn't even considered it might be affecting my breathing. I personally hate seeing people let down by the system it frustrates me so much. People then cope the only way they know how and if they're not getting the right support it could make things worse for them. I often find that if I can do something practical to support the person then I will because it helps me cope with feeling outraged by the situation.
Appologies for upsetting the apple cart.
It was nothing personal just letting off steam like you were hopalongkp.
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