One of those annoying moments

[Wheezycat]

Yesterday I had one of those moments. Still recovering from my chest infection I wobbled along to a meet-up with my book group. One member told me that someone in this town has developed a practice which ‘cures’ asthma naturally, and has written a book about it. She was corrected faster than she had anticipated, I think.

It doesn’t seem the book talks of ‘cure’, it was her misunderstanding. But let’s just say it did not sell the book well. I still have a feeling it will end up in our home whether I like it or not.

I assume the rest of you have also had such annoying moments. Any stories out there?

[Bsr92]

Oh that does sound irritating! I’m all for exploring alternative methods but if it’s not evidence based it annoys me!

Not quite the same but I regularly have people ask me when I’m going to ‘grow out’ of asthma 🙄

I had one family member suggest that eating healthy and losing weight would rid me of asthma. I don’t doubt will help but wasn’t very helpful at the after yet another hospital admission and being on long term steroids which hasn’t helped with my weight gain!

X

[Hidden in reply to Bsr92]

I used to have people mention “growing out of asthma” to me concerning my younger son. They were very quickly rectified. Mentioning that I developed the condition aged three (as did my son) and that I still had it decades later made the point very quickly. Said son is now in his twenties. His asthma is best described as mild, intermittent asthma these day - a very far cry from the days when I had to get a small boy, who had to use a preventer on a daily basis, to the GP quickly so he could be put on a nebuliser. But he still has it.

[Wheezycat in reply to Hidden]

Sounds like our daughter.

[Wheezycat in reply to Bsr92]

Quite! No one suggest I could grow out of it. One look at my greying locks prevent that one - but so annoying for you! We had that with our daughter when she was young. She never did grow out of it even if it improved to be an occasional issue for now rather than constant.

[gemmaashy in reply to Bsr92]

i know the feeling ive had a few idiotz say tat to me to i used to weigh 8 stone but in last couple of years ive put on just over 2 stone coz of medication etc and my health is just the same being slimmer or fatter what gets to me is people that take the piss that ive put on the weight and they laugh and make nasty comments especially at work which now my boss has warned them about and i even didnt go to works xmas party coz all i heard was whatever are you gona wear etc as if i want to sit and socialise with people like that and watch what i eat or drink.It is not nice when your already feeling under the weather and putting up with people like that

[Melanie1989]

Honestly when people give you the advice and claim it can cure asthma... Apparently they know better than all the drs and scientists who have researched asthma extensively... The most annoying thing is when well meaning people have told me to stop medication to 'teach my lungs how to cope without it'... this is when my lungs are so loud they sound like a terrible orchestra 😂

[Wheezycat in reply to Melanie1989]

Oh, dear! Annoying and ill informed!

[strongmouse in reply to Melanie1989]

... that makes me cross. Not only is the advice to stop taking medication unhelpful but could be dangerous for some people.

I am all for trying things which might help, but over the years of having various illnesses and people suggesting alternative ways of treating / curing I tend to be quite sceptical. Apart from a few, very few, exceptions, I have wasted time, energy and money following "magic cures". My advice these days is to do your own research before trying alternatives and always ask for what the advice is based on. One person's supposed cure is not sufficient. After all we have the most interest in being well and know our bodies better than anyone else.

Groups like this forum are really helpful as it is shared experience by people who live with the illness.

[Lysistrata Administrator Community Ambassador]

Turmeric. If I eat it, my asthma will be better. This from someone claiming to be very rational and logical. Now to be fair: turmeric does indeed have anti inflammatory properties so it's not totally mad. However, I looked it up and I'd need to eat about 2 tons to reach the.equivalent of low dose inhale steroids. I'd also go yellow ans have side effects - oddly enough even natural remedies have side effects. I actually prefer my remedies to have been extensively tested and the optimum dose determined scientifically - which happens despite all the people who ask why pharma companies won't use natural substances. They do, but they refine and test them and maybe add things to improve their efficacy and reduce side effects. Not perfect of course, but I prefer it to taking my chances with random poisons (cf belladonna vs atropine derivatives).

Also: the person at my old work who kept suggesting natural remedies and once told me my lungs were just the same as anyone else's even if I did have asthma so I should be able to run. Err...how about you leave it to me to decide what I can and can't do, especially with my reduced lung function?!

[Wheezycat in reply to Lysistrata]

Now why don’t you eat 2 tonnes of turmeric? You would likely also turn bright yellow! Surely that would be lovely! Side effects - anything can have side effects! St Johns Wort used for low mood does, and so on. Our daughter, who knows a lot about medicinal plants (works in the field in a sensible way) and often about potential side effects likes such natural remedies, likes them but not in a naive way, and most certainly not instead of.

My father, who had asthma from childhood, was made to run at his school, no understanding at all. Though I barely met him as he also died from the condition early I have heard all about it as he clearly suffered.

[Lysistrata Administrator Community Ambassador in reply to Wheezycat]

Your poor father! Such a shame he presumably never had access to the treatments we have now. They may not be perfect but they are definitely better than the old days with nothing that worked. I may still not be great with what I have but I would have no life at all if I didn't have my medications. It was bad enough when I was better than I am now but they decided I had no asthma and had no medications at all.

My uncle was bad as a child but opted for peaceful refusal - he said they couldn't forcibly pick up his legs and make him run, and being beaten was not as bad as asthma. Cannot believe the way schools used to be sometimes. Thankfully he and my mum ended up at a 'progressive' school where they didn't beat anyone and in fact asked him what sport he could do without getting asthma. He said swimming and they let him do that instead. He was very lucky especially for the 50s - PE teachers now can be worse!

[Wheezycat in reply to Lysistrata]

Yes, it was before ventolin even. Sadly, as I might then have had a chance to get to know him.

[Wheezycat in reply to Lysistrata]

True! After a cold our daughter could be well enough to go back but not to do PE, so I used to send notes to cover that. But at least once she was still sent to head master’s office due to this. In the end I got a letter signed by a gp to help - but even that could land her in trouble. The alternative would have been to keep her home longer unnecessarily. Very unimpressed I was.

[Js706 in reply to Lysistrata]

hey it would save money on fake tan

The whole myth about pharma companies not using natural remedies really annoys me!! So many are based on plant extracts etc, but like you say, have been refined and tested for maximum benefit!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Lol.re the tan! An evil part of me wants to suggest if they get cancer they could try eating yew berries directly (thinking of taxanes...). Not that I would want anyone to take me literally on that and in that case I hope someone would set them straight re natural remedies!

[Js706 in reply to Lysistrata]

I know exactly what you mean... I follow a fair few medics on twitter and some of the misinformation going around on there they try to correct is really quite terrifying! Let alone the fact that people are often profiting off of it!

How're you feeling today? Hope it went ok with the consultant!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ha yes and they say big pharma is in it for.profit! And these natural remedies are free I guess?!

I.am still here but want to crawl into a hole as so confused and upset and generally fed up, ans as ever made a prat of myself. He wanted to pull the 'protocol doesn't matter you are fine card'. I won but he said well you don't need to be here as nothing more hosp can do - well I thought the point of 24 hours off nebs is yes you are safe but they are observing to see that you are ok without the nebs as not available at home. They always make me feel silly for wanting to follow it because I am not yet ok moving around. Then he suggested home.nebs. Will actually PM so as not to thread derail, if you don't mind a rant lol!

[Js706 in reply to Lysistrata]

UGH how annoying! Please feel free to PM I'm always around for rants!

[EmmaF91 Community Ambassador in reply to Lysistrata]

Same as Js706! I’m here if you need to rant! I feel like we need a 3-way PM system just so we can let off steam without interrupting people’s feeds 😅

[Wheezycat in reply to Lysistrata]

Oh, that sounds horrible! But you are right and he was wrong, even if that doesn’t help you.

[Lysistrata Administrator Community Ambassador in reply to Wheezycat]

Thanks! I want him to be right. He is my asthma consultant and I so much need him to understand.

[Wheezycat in reply to Lysistrata]

Quite! In those situations you need to know someone has your best interest at heart. Sadly it sounds as if he failed this time. I hope he is better at other times.

[Anniecath in reply to Lysistrata]

An interesting one this. I take turmeric for my arthritic knees and it has helped enormously, enabling me to drastically cut down on painkillers. Antiinflammatory drugs never touched it. However I have never noticed any change in my asthma, some slight help with hay fever symptoms. So I go with conventional drugs for the asthma and turmeric for knackered knees. And as we are always saying on here, we are all different arn't we ? It is so frustrating when people say we'll grow out of it, its all in the mind etc ( i've had that one several times, and had to restrain my verbal response). If people could only stop and think before they go blurting out opinions on subjects they know nothing about.

[emmasue]

Mine was always, "You'll outgrow your asthma." It never happened. I also had a consultant at a hospital tell me that I didn't have asthma and that it was just anxiety. I must admit to having a good cry after that one. When my GP heard, he called the consultant a few choice names.

[Wheezycat in reply to emmasue]

I am so glad he did!

[Lysistrata Administrator Community Ambassador in reply to emmasue]

Ugh I have had that far too often emmasue. So much that now I can't hold a sensible conversation with my consultant because I am so used to being told nonsense that I get defensive and anxious automatically. It's not a helpful response. Good for your GP!

[Wheezycat in reply to Lysistrata]

I know that kind of automatic response, not re asthma, at least not so far, but for other things. Hard to keep in check even if it would help.

[Lysistrata Administrator Community Ambassador in reply to Wheezycat]

I have trigger topics it seems around asthma. Touch one and I'll react and it won't be helpful or pretty. I find it insanely hard to focus and respond appropriately if one of them comes up. Seeing a psychologist in my asthma clinic who is the first professional person to get it- everyone else thought it wasn't an issue or I was just generally anxious, but it really is when you have to go to clinic etc a lot and it feels like an arachnophobe being in a room with tarantulas.

[EmmaF91 Community Ambassador in reply to Lysistrata]

Anything that is suggested as a ‘cure’ for asthma is a massive trigger for me! Whether it’s a natural remedy/mineral/vitamin, weight loss, an alternative therapy or just stopping everything and ‘maning up’ cause ‘the drugs cause asthma’ (yes I’ve actually heard that one! If I didn’t have the asthma in the first place I wouldn’t have been given the drugs!).

I’m all for people experimenting and trying things, and discussing if they found a benefit to it or not, but ramming it down our throats as a cure-all is not only ignorant and insensitive but also dangerous! If I were to stop all my drugs and exchange for an alternative treatment by next week I’d be in resus! People acknowledge that different asthmatics need different drugs but forget this when it comes al naturale!

And the ‘did you have it as a child?/you will grow out of it’ discussion! Does it make any difference when I developed asthma to my situation now? When will people realise that most ‘asthmatic’ children who truely grow out of it never were asthmatic in the first place, maybe it was a viral wheeze, maybe an over enthusiastic doc with a helicopter parent... kids with asthma can improve a lot to have very mild asthma as adults, or stay the same, or worsen, but they should always have a blue pump just in case they hit a situation that causes an issue 😤

Or these phrases; ‘well you look fine’, ‘Try to think about something else - you’re not that ill’, ‘it’s all in you’re head - you only have mild asthma with anxiety and a breathing dysfunction’ (from docs), ‘don’t you know you can die from asthma’ or alternatively ‘there are children dying from cancer, stop making a fuss!’ 😤😤😤 all things said to me over the years, some when just a teenager myself!

Whew- rant over! 😅 let’s not trigger ‘the beast’ again - maybe I should OD in tumeric and be the jaundiced she-hulk (esp with the roids currently in my system) 😂

[bookworm]

Hiya my stories aren't about my asthma but sometimes you just want to scream, you smile politely where possible and walk away if you can. And think in your head if it was simple as that I would be doing it by now. Have a problem with my speech and I sometimes get just breathe, take your time, you just need to remember to speak slowly and other inane comments and you think if it was as easy as that I would be doing that by now.

[Hidden]

The one that really annoys me is “Oh, that’s just asthma” or “That’s only asthma”. Those who say it to me never say it again, they get a very quick lecture along the lines of how many people die of it every day, end up A&E with life threatening attacks every day, etc. It’s quite an eye opener for them. They just didn’t realise how dangerous the condition can be.

[Wheezycat in reply to Hidden]

I always wheel out my father, who died young from asthma, in those situations. It is a bit of a conversation stopper, and sometimes I need one of those.

[EmmaF91 Community Ambassador in reply to Hidden]

Oh that’s a big bugbear of mine too!!! It’s only asthma - atop making such fuss!😒😤

[hypercat54]

Yes I find myself having to explain to family/friends why I am wheezing or coughing. I find my airways are now more sensitive to changes in temperature ie going from a cold room to a warm one and vice versa. Eating ice cream is getting increasingly difficult.

One of my pet hates is friends walking far in front of me leaving me wheezing and puffing behind. They then apologise but I say no probs just don't expect me to be able to keep up! Then you are in the middle of a conversation with them and they are getting further away again by the second. x

[Wheezycat in reply to hypercat54]

A couple of years ago I bumped in to a friend on my way to an event. It was winter, and he is a fast walker. I tried to keep up. He prattled on, I could no longer talk and I felt increasingly light headed. In the end I stumbled across a low pavement and fell headlong. I had a winter coat on so no bit of me was harmed, but it made me decide never to try again. I then felt anxious about it at times - I have some long legged, naturally fast friends, while I am short and a bit dumpy - but I have become better at both just doing what I need to do and to flag it up if needed. Generally put my need in this respect first rather than too much breathlessness and not being able to breathe out. Mind you, before I knew, I would go to the gym (I hate gyms), to try to get better at walking up hill. I thought it was my lack of fitness that caused problems, when in fact it was asthma.

[hypercat54 in reply to Wheezycat]

Oh dear I know what you mean. With me it's not just my asthma which is thankfully mild and I have few real problems with it but I also have copd. Again this is mild but does cause some breathlessness. Add to this chronic back pain, well overweight (thyroid problems), age (in my 60's), and general unfitness and life does become difficult sometimes! Oh and don't forget depression too....

I sometimes think back a few years when ok I still had my depression but I could walk a lot faster and was much fitter. It's a double whammy now my physical fitness is compromised too.

Still I always think there are so many worse off than me and when I hear some of your stories here I shudder and thank god it's not me. And again others have the big killers don't they so I end up being grateful x

[BP135]

That is very annoying!

I haven't had it with my asthma that I can think of, but I also have a severe nut allergy which requires an EpiPen. I get told on a regular basis that if I ate small amount of nuts I could build up my immunity to them...uh huh. Apart from I'd possibly be dead before I got to that point.

I am very blunt now. I can't be bothered to listen to people that know nothing about your medical issues but decide they are the person to diagnose and cure you! I'm sure the advise is meant well but very irritating!!

[K8ty25]

The constant stream of well you don't look ill. Grrrr. By the time i look ill ive gone past the danger point to nearly dead. Also if i would just think more positively about my asthma then no doubt I would see a lot of improvement. Im not negative about having chronic brittle asthma just sensible about precautions. I take a lot of time to manage my condition. Im afraid i am also very blunt with my explanations because i have spent to many years trying to convince people my symptoms are real and can be dangerous. Although i find that the suggestions of try this spice or this supplement often come from a good place of people who are worried about me. So i try not to judge to harshly.

[Lysistrata Administrator Community Ambassador in reply to K8ty25]

Yes I don't like the whole 'I'm.sure it will be fine if you do xyz, just get on with your life and.don't let your asthma take over'. Err thanks for implying I have no life and am.some kind of hypochondriac! Like you say there is a need to be sensible. I'm not going to kill myself if I need to be relatively ok for an event next week, and I have a fairly good idea of what I can do but I still have a life - find it quite insulting when others suggest I'm obsessing about my illness. I sometimes worry in case I am but it's not my whole life even if it takes up fsr more time than I like and does interfere with stuff I want to do. I think some people don't understand all that without having lived it - I didn't before I had to, but I also hope I didn't try to tell others how to run their lives.

I don't get offended by the odd suggestion of a spice etc so long as they don't go on and on about it or suggest I'm giving up/being silly etc if I don't follow their suggestion. Or accuse me of being close minded as a family member did, because I.prefer not to go alternative! I do have a mind of my own...

[K8ty25 in reply to Lysistrata]

I find balance really hard especially when i can get so ill so quickly. Other than my parents i struggle to make people understand how serious things are. Balancing safety with wanting to go out and live life is soo difficult. And telling someone with Asthma to just get over it is like telling someone with a broken leg to just walk on it

[Wheezycat in reply to Lysistrata]

Our asthmatic daughter recently commented on how dominated I seemed by asthma. I pointed to the way our lives changed completely due to my father’s death from asthma (so of course I get anxious) and also ending up in hospital, just once so far, but so unexpected and me anything but recognising that I could end up in that situation. Later I mentioned it to my husband, who said he could not see how I could be anything other than dominated until I got a better understanding of how to manage etc, and a friend, who is a doctor said something similar. Luckily daughter and I can now talk a bit about these things in a useful way, and she wasn’t at all offensive aboutmit, just curious.