What is it like living with asthma?

[Wheezies]

I'd love to hear from people who were diagnosed as kids with asthma and how it has affected their lives. Both positives and negatives. Also, anything that you feel that has made your life easier or worse regarding asthma.

Warning. My original post is a self pitying indulgent rant but i'm keeping it up as well for a bit of a back story and in case someone can relate...

Ds is only 3 and therefore too young for a diagnosis but several doctors have told us now that in the future he will probably be diagnosed with asthma.

Aibu to be terrified and feel so bad for him? I know it's not the worst illness possible but I just wish he didn't have this hanging over his head. My cousin and his dad have severe asthma and in both cases it has affected their quality of life though my uncle lived to age 90 and my cousin said that with current treatment options the impact on your life is minimal.

I just feel so bad for him. He's such an active, happy little boy but he picks up every virus going, gets extremely ill with every infection and starts wheezing or working heard to breathe several times a day even without any known cause. (This apparently is one of the reasons why they suspect asthma). He's also got a severe nut allergy, which apparently is often comorbid with asthma sufferers.

I'm also fed up of lying awake trying to figure out if he's wheezing or not and needs his inhaler, cancelling events because he's ill every weekend, missing work, having to work nights to make my deadlines, making him take his inhaler, when he resists, etc. I know in the large scale of things this is all super minor but I don't want this for him. I just want him to be healthy. I don't want to have to worry about him all the time.

A few years ago a little boy I kind of knew died because of an uncontrolled asthma attack and though I know that is very uncommon and there were fundamental failures in his care it Still worries me. And then I think back to 2020 and how asthma was one of the underlying conditions that could make a covid infection more serious and how if he had died then of covid he would not even have figured in the number of people who died without an underlying cause.

I've never had any chronic health condition (yet) and the thought of requiring life long treatment even if it's just a couple of inhaler puffs twice a day worries me. That and the nut allergy. Where ever he goes he Will always have to take his epi pens and his inhaler.

Rant over. You don't have to vote. I know I'm being overly dramatic and unreasonable. And I know that something like 1 out of 3 or 4 kids in the UK are diagnosed with asthma so it's not uncommon.

I have moderately severe asthma, my DD has a moderately severe peanut allergy. Neither impacts us day to day.

Wrt asthma, it's all about getting the preventer that works for you and staying on top of it. As you have sadly experienced, you do need to take it seriously as it can kill, but most people never get any where near that.

Do you need to speak to your GP about anxiety? It sounds like you're spiralling a bit.

As a child it was really hard in all honesty. I had a few life threatening attacks, nit being able to breath is obviously terrifying. If feels horrible too though, always felt really hot to me, kinda like when you have a skin reaction to something and it get shot and itchy and swollen.

As an adult I don't need a regular inhaler. I feel breathless and the same irritation in my throat from smoke and aerosols. I can only use roll on Deodorant, small amounts of perfume away from my face, can't use hairspray or air freshener. Chest infections are worse. But I haven't had an attack since my early teens.

But I still managed to do sports that I enjoyed and be successful enough to win fights as a boxer.

My DS was the same as yours. In and out of hospital with chest infections and we were told he may have asthma.
He doesn't.
He's a healthy 28 year old now having grown out of his chest problems by the age of 5

My oldest daughters best friend has severe asthma, she had to be pulled from her football team, her dancing and gymnastics as she really struggled even with treatment. On the other hand, my friends daughter has mild asthma and is able to continue to activities as normal.

My daughter is a lot younger than your son and we are starting treatment for her asthma in Autumn, we do have a diagnosis via her respiratory team though. I have asthma but was only diagnosed as an adult.

I have asthma. It's barely impacted on my life. When diagnosed as a child, nothing changed except I just had my inhaler with me. I do a lot of exercise (and historically have done) including IM. It's not life limiting at all. I've had a few serious attacks, had COVID twice, Glandular Fever (as a child) but I've cracked on.

In comparison, one of my cousins has asthma. We're a similar age, diagnosed at a similar time - she stopped all sports (her parents panicked and said she might die if she carried on...) and is obese tbh. Her breathing is awful and, if I am completely honest, I think a lot of her asthma related issues are made worse by how unhealthy she is.

I think a lot of managing asthma is actually about being healthy (eating well, exercising) and not being so scared of an attack that you're unwilling and unable to live your life.

I was diagnosed with asthma as a young child, as was my sibling. We both struggled with it as children; we were regularly very wheezy and needed to be admitted to hospital a couple of times each. However, this was during the 1980s and preventative treatments have improved a lot. After the hospital admissions, we saw a consultant at the hospital every 3 months and I think a combination of the inhalers he prescribed and us just getting older and growing out of it a bit really helped.

Someone we knew quite well died from an asthma attack when he was 10 (my sibling and I were a similar age at the time). My mum said she had to fight her incredibly strong urge to wrap us up in cotton wool after that. But she felt strongly that we had to live our lives as normally as possible rather than in fear. Once our inhalers were sorted, we were both able to play sport regularly and remain active and sporty to this day. My mum always recalls how we went from not being able to run 20m without being breathless to running about throughout our sports matches.

My last trip to the hospital (I needed to use the nebuliser as an out-patient) was in 1991 so it's definitely under control now! Nowadays, it has very little impact on my life other than I take my preventative inhaler daily. If I get a cold or similar, it does tend to make me wheezy so I up the dose and use my reliever inhaler if necessary and usually that's sufficient. If not, it's normally because it's a chest infection and needs antibiotics from the GP. AFAIK, I've only had Covid once and it was extremely mild for me and didn't affect my breathing.

I had several trips to the hospital due to asthma as a child. It was hard. Every illness (as you said about ds) went straight to my chest. Nebulizer treatments every month. My dm would put me in a hot bath or shower and that would help. When I hit puberty it calmed down quite a bit but I still suffer from it now and then. I think it's too early to tell how much it will affect your DS(and you) in the future. Some people have asthma that only flares up when they're around certain triggers, for some it's debilitating and flares for seemingly no reason. Now this is going to sound ridiculous so bear with me. I was so sick of going to the hospital for breathing treatments and oxygen I started using an aquarium oxygen pump as a way to get oxygen at home. Hooked it up to clean tubing, and would hold it to my mouth and it really helped me breath. Yes I know it's crazy, but I was desperate and it worked. Did it for years whenever I would get a cold or flu, it helped me get enough air to stay out of the hospital. I DON'T recommend this for ds as this could be dangerous when he needs proper medical care. I was much older when I started this probably 8 or so. Dm thought I was a loon until she saw that it worked. Was just mentioning it because I always think of it when I think of my asthma, and it sounds batshit. I'll also say that I got covid two years ago and never had one respiratory problem. I thought it quite odd.

Very hard as a child. I was diagnosed at 6 years old and I remember the doctor telling my mum my lungs looked like an 80 year olds due to how exhausted my lungs were by that point. It was very very hard as a child. It was hard getting involved in sports because my lungs were horrific and there was a time i was hospitalised when I was 9. I was trying so hard to breathe that I threw up all over the hospital floor.

I'm 27 now and pretty much outgrown it. I still have the blue inhaler in case I need it but haven't touched it since 2020. I was told it might affect me during pregnancy and now I'm pregnant with number 2 it hasn't ever affected me.

Currently sat at the GP with my 16 month old who I'm adamant has asthma. Not being listened to and I'm fed up with the back and forth at hospitals just to be told it's "viral" ever since he was 9 months old.....

I’m very lucky that my asthma has been under control most of my life but as the saying goes, it ain’t easy being wheezy!

I was diagnosed at 5 - I have a blue and a brown inhaler and most of the time i’m ok. But randomly some days I’ll wake up with a very tight chest and some days can be a struggle through to breathe. I also tend to pick a lot of stuff up on my chest - I regularly get chest and respiratory infections, bronchitis etc and have to look after myself.

I was hospitalised a lot as a kid and had quite a few asthma attacks I was rushed to A&E for but that hasn’t yet happened as an adult.

It does affect my quality of life as I do have to be mindful of my limitations sometimes but it doesn’t totally ruin my days!

I had it as a child. Thinking about it now is terrifying but as a child I would just use my inhaler and wait for it to pass, the episodes were kind of normal to me and not that frightening although they were reasonably severe and I had a couple of hospitalisations.

Taking up running in my early 20s totally fixed it for me. I now exercise regularly and I haven't used an inhaler in years although I still have one just in case. I did have a relapse when I moved to London due to the air quality though.

I had it fairly severely as a child, daily inhalers, occasional hospital admissions.

It probably wasn't as well controlled as it should have been when I was in school. Both of my parents smoked in the house, to the point there would be a blue haze at roughly my head level by the evening. The asthma improved dramatically when they divorced (and I had my own smoke free study in my mum's house)

I enjoy exercise and was reasonably sporty as a kid but have never been able to run even 100m without feeling very tight chested, especially outside. Other sports I can cope with, but running is a hard pass for me.

It virtually disappeared after my late teens /early 20s and I didn't even have a blue inhaler. Didn't need one for years. Caught covid and it does seem to have reared it's ugly head again. I had a pretty nasty chest infection in October last year that saw me in a&e on a nebuliser and a drip again for the first time since before I was in primary school (am 33 now). That was a little scary I won't lie, and I haven't been the same since.

I have a review booked in for a preventer inhaler after a couple of months of being denial but it's my own stubbornness getting in the way there. I didn't want to admit I need a preventer inhaler again after all these years but I'm quite fed up of being wheezy all the time, and the daily inhaler is the lesser of two evils from what I remember.

Either way an asthma diagnosis isn't the end of the world, and the treatments for it now are much better than they were 30 years ago

If your son does end up being asthmatic, try to keep him active. This may mean needing a dose of inhaler beforehand, which might seem jarring. But I promise it's really preferable for your muscles to feel fatigue from exercise before your lungs hurt

Thanks so much everyone for sharing your stories. I have read that exercising and keeping active is particularly important if you've got asthma to strengthen your lungs so we definitely won't avoid that.

Ds had an asthma attack today morning (according to the gp. Thankfully it happened before 8am so I could book him an appointment with the gp). I'm Still hoping he will grow out of it. We have no family history of asthma on either side and so far he has never had to be admitted to hospital for oxygen. We have spent many nights being monitored at A n E but they have always managed to control it using salbutamol and steroids so far. Previously I was told that the big indicators of a child having asthma are family history and hospital admissions but now several doctors have said ghst even without those it does look more and more like asthma because of how often he has wheezing attacks.

Can I ask did you or your kids always feel (or sound) breathless even at rest or during very light activity? Ds always breathes really heavily.

Another thing that doesn't help is that I don't find it easy identifying whether he's wheezing or not unless it's obvious. There have been times when I thought he was wheezy but the doctors couldn't detect it with their stethoscope and many more times when I couldn't hear the characteristic whistling sound but then it was picked up with the stethoscope. And once at a n e the doctor couldn't detect any wheeze but said he must have been wheezy because he perked up so much after salbutamol. It's very confusing. Are there any tricks except for listening out for the whistling sound or watching his chest?

When you suffer from asthma yourself how do you know when you need the blue inhaler? Do you take it when you feel your cheat tightening up or are struggling to breathe?

Yes, I've had asthma most of my life.

I know to take my releiver inhaler when my chest (lungs and breathing) feel tighter and heavier.

Things that trigger my asthma are, stress, bleach/cleaning products, heavy forest areas around certain trees, sometimes sneezing, chesty coughs.

Also, I read too much on my phone, scrolling too much researching, etc.

Obviously, with a little one, they can't tell you their chest is tight. Wheezing is one sign, but also, if they are particularly quiet (less oxygen in the body), this could be a sign to look for.

Hot bathrooms full of steam help me if I get a bad flare-up, although it's rarer now I'm older.

Swimming is also a big trigger for me (chlorine along with exercise), so please be careful with swimming pools.

I've been hospitalised a few times. One time, the doctor was amazed I was alive, and he said I must have become acostomed to surviving on less oxygen, which is pretty crazy.

I'd swap out all cleaning products (Kit and Kin are amazing) I personally wouldn't wear perfume, or use any kind of room sprays or plug ins as these really trigger mine also

Xx

The cold is a pretty big trigger for me, also viral respiratory infections hit me quite hard

Dust, certain cleaning products, some forms of exercise are triggers

I know I need my blue inhaler when I have a persistent dry cough, my chest feels tight, I can often hear the wheeze myself even if others can't hear it (in I suppose the same way you can occasionally hear your own heartbeat but need to either use a stethoscope or put your ear to someone else's chest to hear theirs)

Sometimes I don't really realise I need it until a friend or relative suggests it I take it and then realise how much easier it suddenly is to breathe. It can be a slow creep with exacerbation of asthma. It's not always a sudden wheezing attack where one minute you're fine and the next you can't breathe

My now 16 year old has severe asthma and is under the care of a respiratory consultant. He started with bronciolitis as a 6 mth old baby and has had hospital admissions pretty much every year since. He also has lots of allergies and carries an epi pen for a walnut allergy.

His asthma is now reasonably well controlled with seretide 125 twice daily and Fexofenadine as an anti histamine. He was in a footy team for 8 years and has run in cross country for school etc. He’s pretty active.

We have learnt over the years to know the early signs of an asthma attack - luckily we have a children’s hospital nearby so would always go straight to a&e where they start burst therapy immediately.

It’s not easy but the key is keeping it as controlled as you can - that reduces the risk of an attack. My sons come out of the blue but are often linked to cold or dust etc (hence the daily antihistamines)

Hope that helps xx

Oh and has your son got a peak flow monitor - that’s how we knew when he was younger that things were going in the wrong direction

DH has lived with asthma for over 70 years. It has had pretty well zero effect on his adult life, apart from a daily puff on an inhaler. He has a second inhaler for use if he gets an attack but hardly ever uses it. This is what asthma treatment aims to achieve.

The Covid thing was when they still saw it as a respiratory disease. Later on I believe they said asthmatics were no more susceptible than the average person

I have asthma. I'm allergic to dogs which really triggers my asthma but other than that, there really isn't anything I can't do.

I know you want your child to be perfect and have no issues but unless it is very severe asthma, it isn't life changing at all. Plus, lots of kids grow out of asthma.

Similar here. Especially regarding the cleaning products.

I also react to warm, dry air (central heating and blowers in the car) and I'm on Omalizumab injections every 4 weeks plus two types of inhaler. Very well managed at the minute.

An additional note about swimming pools. Not only is the chlorine a trigger, but when people use perfumes and spray deodorants, this sits on the surface of the water which means you're swimming through clouds of noxious chemicals.

I had to stop swimming due to that. Changing rooms are an absolute no go for me anyway. Way too many fragrances and aerosols used.

I have asthma and it has very little impact on my life. I make sure I always have an inhaler in my pocket and at certain times of year, like at the moment with the pollen, I will take it a bit more often. I remember getting chest infections all the time pre. the inhalers, but since then I have had almost nothing. Covid had no effect on my chest, strangely enough. I have wondered if it is because of the inhalers, but I have no evidence for that beyond my own musings.

My brother had much worse asthma than me as a child. He had grown out of it completely by his mid-20s.

I do remember that the peak flow meters were good at predicting attacks as you can literally see when your breathing output is less and can then assume airways have begun swelling. This was in the 80's so they're probably called something else now. Just a plastic tube you wrapped your lips around and exhaled as hard as you could. A plastic indicator button would rise to a certain level showing your output. If it was lower than what your level was during an attack free time, then you knew to start with meds. They were a true pain and I hated doing them, but it was better than the alternative.

DS (11) has has inhalers since he was 2 and had night coughs. He had a wheezy episode at 3m and bronchiolitis at 7m. He gets long phases where all is good, but it can flare following colds/ coughs or abrupt changes of weather. He's got a good medication combo and we can scale the preventer doses up and down as needed.

He can run 5k in 23 minutes when he's on form. Being fit does help maximise lung capacity and he's getting more confident at distinguishing normal out of breath from excertion and worrying wheeziness which had concerned him for a while.

As others have said, I know that my asthma is worsening and I need to up my inhalers when my chest feels tight and my peak flow drops. Also, it sounds weird but I yawn more which I think is because it means I take a big gulp of air. My parents looked out for it when I was young as a sign I was struggling.

Seconding all the comments about avoiding air fresheners, perfumes etc. Those bloody Scentsy burners make me wheeze and sneeze!

Dh had asthma as a child. Grew out it around his mid 20s. (After giving up smoking) Now in his 60s he occasionally has a puff of my rescue inhaler. He says it never really bothered him as a child, his mum. (A nurse) was more bothered by it.

I have adult onset asthma. Never bothers me so long as I take my meds and listen to my what my body is telling me. The biggest problem is trying to get a dr appointment or nurse appointment for a check up. (Impossible with t current practice).

I have chronic asthma that ive had since childhood.
It's okay and usually well managed with fostair spray daily and Ventolin if needed. Treatment has come on loads since I was a kid in the early 80s tho!

My triggers are lime blossom, rapeseed (when the fields are yellow my chest is dead), cats and orange flavourings as well as some really strong scents like Lush shops or bleach.
You learn what to avoid.

Worst time for it is when the seasons change, my chest gets tighter but my inhaler sorts it.

Lifelong asthma is manageable OP. And not life limiting.
Yes its worse if I have a cold or chest infection, but day to day its okay.