Asthma confession

Ok so I feel like an awful person even though I know full well that your first thought is not what counts, your second is..

But I can’t help but get frustrated at my best friend. They have moderate asthma and I love them to pieces and know that their mental health is in a really bad place but they smoke all kinds of things and often skip their preventer then complain that their asthma isn’t so great.

Meanwhile I’m in hospital for the second time in 3 weeks, having had to miss what would have been a fantastic performance of Handel’s Messiah with my new choir, and I’m a never-smoking, religiously-abiding-by-everything-my-doc-says asthmatic.

I know that’s unfair because asthma sucks no matter what, and I am doing what I can to support my best friend and get them to take care of themselves but yeah there’s my asthma confession!

[Bsr92]

I get this frustration too! A family member of mine regularly complains her asthma is bad when she openly admits she isn’t good with taking her preventer. I just think I don’t have a choice I end up in hospital whilst religiously taking them and long term steroids and I still end up in hospital! 🙄

[Hidden in reply to Bsr92]

Agh yes exactly, like some people could be so well controlled if they just took their damned meds yet they don’t. It makes me think of them as ungrateful!

[Minushabens]

I can relate to this, even though I know that I should be more tolerant of people, but one thing I find I really struggle with is seeing people with mobility scooters & (I strongly suspect) blue badges & PIP, who look like they have never followed a doctor's advice in their lives.

Meanwhile, I feel like I've struggled all my life, but with an expectation from medics that I carry on working because I'm capable, even though many days I really don't feel that I am.

I used to know a woman through work who had all the bells & whistles. I knew that she had always smoked heavily, drunk heavily, & was morbidly obese, yet was never done demanding her rights as a 'disabled' person.

The real me isn't really that intolerant I don't think, but there are days when I want to pour a bucket of water over the smokers in their wheelchairs at the hospital main entrance!

That's the end of my Sunday morning rant anyway...aaaannnndd....breathe (well I would if I could).

[Hidden in reply to Minushabens]

To be fair you can’t tell why someone’s in a mobility scooter! I’m guessing you’re maybe on about fat people but there are many reasons why someone could be fat and need a mobility scooter, and the two can play into each other as well. Having said that, I definitely get the feeling when I see people stood outside a hospital with a drip in their arm, smoking. I almost feel like saying “why are you even bothering?”

[Minushabens in reply to Hidden]

I think if I was to be serious on this point, I'd say that in general, I understand why people get in the physical messes that they do. I don't really begrudge anyone proper care, including smokers, drug abusers, heavy drinkers or anyone (having worked in those areas for many years).

I think where the (slightly tongue-in-cheek) rant came from is that somehow or other, I seem to get bugger all! I have been told I'm too fit for a blue badge and my GP & consultant weren't interested in signing me off work, saying I was far too young & there was no physical reason I can't work.

I feel like, especially these last few years, that I'm dragging myself along day by day but because I've always tried to keep going, the expectation continues that I always should. Even though objectively when I see people smoking away in wheelchairs or on scooters I know that I wouldn't swap my life & choices for theirs, I still feel slightly aggrieved at times that there doesn't ever seem to be any real acknowledgement or sympathy for people who have tried to make the right choices but are just feeling like they've done all they can do.

Anyway, rant pt. 2 over - I've got to get to work

[Hidden]

Meanwhile, because my moderate asthma is well controlled because I do use my preventer inhaler on a daily basis and know when to adjust the dose to suit my condition (winter means double the dose with me) people think my asthma is mild - which it is not. I learnt very recently that apparently even my hospital notes state that (and from what I’ve been able to discover that didn’t originated with my GPs). I’m now in the process of trying to get that corrected.

And yes, I’ve come across people like your friend and get intensely frustrated by it.

[Hidden in reply to Hidden]

I love my friend to pieces and I know they’re seriously struggling with their mental health but I still can’t help but sit in hospital seething a bit that they have the option of having well-controlled asthma when I don’t yet they’re throwing it away!

[Lysistrata Administrator Community Ambassador]

Ugh I do know what you mean (and I feel for you with the choir - I had to give up the one I was in because I'm too unreliable. I could join a more casual one but want to sing the kind of stuff where you need a lot of rehearsal!)

It does feel very frustrating when you do everything perfectly and still struggle - or as MaggieHP says, when it does help but then no one realises that there's another side to it or that you had to try hard to get things to a good place and still need to be diligent. I think people don't realise fully if they see me when I'm doing ok that it's often not ok - and I include medical staff in that.

I would be quite inclined to drop some figures from the National Review of Asthma Deaths in with people like this, as I don't think they always know they are playing with fire. I know a couple of people who have looked at me and concluded that their asthma is not in the place mine is and therefore they ought to put up with symptoms and not complain about them. This doesn't annoy me but it does worry me a lot so I keep telling them they should be aiming for control, it is possible with most asthmatics, and they shouldn't think they're being unreasonable trying to get better control just because I can't currently keep my lungs from being pains! I was pretty horrified when one friend telling me about her asthma symptoms said that her mum, who is a retired GP, keeps telling her she doesn't have asthma anymore because it's better than when she was growing up! Thankfully I think she has taken on board that she really DOES have it and needs to remember that.

I'll admit it does annoy me when people say 'don't let your asthma control your life' - yes I know this is a reasonable message for people like my friend who need to realise they can do something about their asthma and get it under control, but when it is applied to all asthmatics it does grate. As though I should just pretend it's not massively disruptive, or I'm not trying hard enough somehow and 'letting it win'?

[robert1957 in reply to Lysistrata]

it would be nice to aim for a cure and not just control of this terrible disease

[Lysistrata Administrator Community Ambassador in reply to robert1957]

It would, but I'd settle for control right now given I haven't managed it yet! Control better than suffering with symptoms for people who don't have to.

[robert1957 in reply to Lysistrata]

hello lysististrata yes I agree control is the next best thing to a cure I have asthma I've been on all the meds the doctors. Throw at you to try and get it under control when it is under control you don't know what will set it off and put you in hospital again with more meds old meds removed new ones to take see how it goes in my case I stumbled on magnesium deficiency and symptoms of magnesium deficiency it has changed my life health wise now when I get a cold its only a cold nothing else it is sooo good to have my lungs working for me instead of against me so if you could have a look at magnesium deficiency it worth a try good luck ps its in our food .

[Hidden in reply to Lysistrata]

Yes, I’m with you 100% on this! I’m likely Type 2 brittle, so between exacerbations I’m usually reasonably controlled, but on quite a few meds and stringent avoidance of triggers etc. etc. in order to achieve that. And my lungs still burn through my ribs when I play hockey. But other than that, I’m controlled until I’m very much not, if that makes sense. So people see me going about and doing things, and then get surprised when I tell them that I’m in hospital. I also have a condition called Chronic Cluster Headache which is considered the most painful thing a human being can experience. Sufferers often use intense physical activity as an outlet when the pain hits, but can’t concentrate on reading or TV for example, and when it was particularly bad last year, explaining to people why I couldn’t have a job but could play hockey (the only thing that was keeping me sane) was just...not worth the hassle.

As for the medical staff thing, I distinctly recall one nurse at my GP practice, a couple of months after I came out of hospital, changing me to Fostair back before it came in a higher dose. I was doing ok at the time, but I knew that the dose of Fostair she was putting me on was wrong. It was not equivalent to my Seretide dose at the time but she insisted it was because “the particles are finer so it’s equivalent to half the dose” which was true and I knew that, and that was precisely why putting me on the equivalent of A QUARTER of my dose was NOT right! But she wouldn’t listen and I can still hear her saying “look, you’re not at any risk of ending up in hospital any time soon“. Well, a week later...

I’m so so sorry about the choir for you though. It’s one of the few things I hold on to in life!

[Hidden in reply to Hidden]

It’s not just nurses that seem to get the finer particle argument wrong. I’ve come across that in doctors. There seems to be a lack of understanding that different inhaled steroids have different levels of potency.

[robert1957]

please research magnesium deficiency and symptoms of magnesium deficiency foods high in magnesium its something we should be getting in our food .