I am new to this group and hoping someone can help me come to terms with my Asthma.
I was diagnosed with Adult Onset Asthma about 6 months ago after suffering with breathlessness for probably a few years before seeking help from my GP.
Gradually over the years my breathing difficulties became worse until finally a work colleague bluntly told me that this was not normal.
After heart scans, xrays and blood tests i was finally told it was Asthma. There is no history of this in my family.
My problem is that i feel a fraud. Although my husand is very supportive, i dont think my adult children or my employers are taking it seriously and still expect me to be able to do all the things i could before. They hear me coughing, they see me struggling to hold a conversation because of my breathlessness and the mucus that is constantly in my throat but they don't see me struggling to walk far, do housework, carry anything heavy or walk up hills. They dont see me struggling to breath with an overwhelming feeling of being out of control. My legs turning to jelly and just wanting to cry.
I have just returned from a week away in Norfolk and it upset so much that i was limited in what i could do or where i could go. I miss doing all the things i used to do.
Tomorrow i have a hospital appointment because my doctors now believe i have a combination of Asthma and VCD. I have been prescribed Montelukast which i dont feel has made any difference. I am also on Fostair and have a rescue inhaler too.
Why do i feel like nobody really believes me?..... Or maybe i am just struggling to believe it myself.
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JAM1AM
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Hi Jam1am, welcome to the forum. Firstly, you're not a fraud. Whether we have had asthma for ever or have received a recent diagnosis, our experiences are universal, in that we face new challenges every day. Not only do we struggle with symptoms, but oftentimes we have to face a lack of understanding from either family or friends or colleagues and sometimes even medical professionals. What should be a purely physical challenge is often an emotional one too.
I have a lifetime of examples where people have just not appreciated my symptoms and the struggle it can be to carry out even simple tasks, or even to attend work. I recall being very upset on one occasion at work in my early 20s. My colleagues, many of whom were smokers, just didn't believe that respiratory diseases were caused by smoking, especially second hand smoke. I decided not to take my rescue inhaler one day so that they could see my symptoms at their worst. No one batted an eyelid.
I was admitted to hospital on several occasions over the years as a result of asthma attacks but there was little sympathy from some. However, when we had a new recruit who was young and had a spinal challenge that meant their physical ability to do certain roles in the office, they too were met with scepticism. That really shocked me, so I was determined to ensure they had a champion to push back against the barbs.
I've had very understanding friends though. Maybe I've deliberately sought out empaths! On the whole my family are patient but I still have to ask people to slow down or wait while I catch my breath. I've never asked them what they think, maybe I should. I guess, they have seen me really well so just don't register when my symptoms are problematic. On one occasion I told one sibling that it's like having a plastic bag over my head with just a small hole through which to breath. (Other forum members use the example of breathing through a straw, I'm just more dramatic). That example really hit home...for a while.
So what have I found useful?
1) If a medicine hasn't made a difference to my every day symptoms, I give it a good 8 weeks, go back to the doctor or asthma nurse in order to review progress, or lack of it. There are a variety of inhalers and meds, not every one will suit me, so it's a matter of trying something else, and then another, until the most effective one is found. Or it maybe just a case of increasing the doseage or when to take it.
2) Inhaler technique is very important. There are good instruction films on Youtube. If you're on aerosol inhalers, then a spacer may help in getting as much of the medicine into your lungs. Or you may prefer dry powder versions. Fostair has very fine dry powder particles, so can be breathed in further into the smaller airways. Again, technique is important. Breath right out, inhale sharply, keeping the shoulders down and expanding the bottom of the rib cage, hold breath for at least 5 seconds.
3) Every day breathing techniques are important. Mouth breathing is not a good habit as we are designed to breath through the nose. It slows the air, warms it, mixes it with nitric oxide, all of which improves the gas exchange when our breath reaches the lungs. When we mouth breath we over inflate the lung, the breath isn't great for good gas exchange. You can learn more here, (other YouTube videos are useful too, look for the Buteyko method).
4) Weight & diet. My asthma is affected the more overweight I am. I have also learned, through trial and error, that processed foods aren't great for me. I avoid alcohol, omega 6 rich foods, too much sugar, carbs. But we're all different and it's taken me years to work out my trigger foods & drinks.
5) Exercise. I don't mean hitting the gym, but walking, moderate exercise can be beneficial. Walking is great as it helps our core strength & I practice nose breathing as I walk.. We need to look after our general health through simple methods - one consultant told me I don't need to train as an olympic athlete & I took him at his word!
I'm sure others will have excellent ideas for you to explore.
Good luck with your appointment tomorrow. Say if you think Montelukast hasn't made a difference and share your holiday struggles regarding your lack of mobility. It's important that you communicate to the doctor and nurse how much your symptoms are affecting your daily life. Ask about having an asthma plan and about monitoring your symptoms. It can help you decide when to take extra Fostair and when to see your GP or asthma nurse for additional treatment.
Welcome to this forum. It is friendly, funny, very supportive and well-informed. I am sorry you are having difficulties. I cannot add any more the excellent advice from Poobah.
I’m sorry you’re struggling Jam. Because asthma isn’t visible in the same way as having a broken leg in plaster is, some people don’t understand how it effects you. Maybe they also hope if they don’t acknowledge it, it will go way (which was the way the medical profession behaved towards me when I was I child struggling with it). I agree with you in that there is probably part of you that is denying the diagnosis as well. In the end, you have to do the things you need to do to get well and stay well. Once you are feeling better you may find that the things you are struggling with now improve ( though continuing to avoid cigarette smoke is best!) It just takes a while to find what is the best approach for you. You are very lucky to have a doctor who has recognised VCD because most don’t, so take heart from that. I found speech and language and respiratory physio very helpful indeed for VCD. You might have silent reflux which irritates vocal cords so looking at portion size, which foods you eat and when can help immensely. Best wishes to you.
Hi Itswonderful, i have indeed, today been advised that i have silent reflux. When they explained it all to me, it made so much sense and i now have loads of info and exercises to do to help me.
sounds good! I now eat lots of fresh fruit and vegetables. Avoid processed foods , chilli, vinegar and the like and I have no dairy at all. The Gastrologist asked me to go a month without dairy and see what happened. I also eat only once and sometimes twice a day and no snacks after evening dinner. I drink loads of water. Good luck Jam1am!
Hello Jam , i can totally relate to what you are saying , our conditions i have only recently been told by my doctor are hidden disabilities, hills and carrying bags are my biggest problem.I now qualify in my area for a freedom travel pass at the age of 56 something i have been told i could of got years ago if i had only applied.Didnt even cross my mind to apply.I sometimes on good days feel like a fraud travelling on a freedom pass but the difference it has made is huge ,i no longer need my 4 year old grandaughter to push nanny up the hill 😀
It doesn’t sound as though the medication you currently have is of much use to you, it doesn’t seem to be effective. Do you take your relief inhaler when you feel short of breath? If one puff doesn’t ease the symptoms you can take another. It is advised to leave 15 minutes between puffs to allow the reliever to work. Perhaps. You need to take two puffs then leave a 15 minute gap, you can take up to 10 puffs - but if you do so you should then go into A&E to get checked out.
Are you an allergic type - are you more breathless around dust, pollens, animals, smoke etc? You may have other triggers. Even though you have medication it’s still advisable to avoid all triggers if possible. You need to ensure that your environment is as free of allergens as possibles - hard floors, look for hypo allergenic bedding - keep it clean. An air purifier might help.
Once medication that you find effective is being used you should be feeling much better with fewer, less frequent symptoms, if any.
Make sure your consultant is aware of all your difficulties. Good luck, I hope you feel better soon.
I was diagnosed back in February. I still get breathless. I am the only one in my family too. I am finding the Buteyko clinic breathing method good and worked with a breathing teacher. I also take Fostair 200 and Montelukast. All the best!
hi just wanted to let you know I have, the same, problem. My Mum used to say if u have a broken leg or arm and a cast on people can see and sympathise. But when u asthmatic nobody sees it. I have had, adult onset for 28 years and had circumstances, where I pushed myself at work as, I felt guilty.. I have gone to work after being up half the night and exhausted. Being short of breath can wear u out and I sleep badly when I have a flare up Just try to ignore. Think people need to have it to fully understand. Take care don't let them get to you it's, a funny old world x
Oh how I sympathise - as I'm sure most of us on this forum do! I just had to develop a kind of independent spirit to do what I can do and the rest of you will just have to get on with it. My family who saw me in hospital and so on, understand, and more people do as you get older, I find. I think part of the issue is the very variable nature of the illness: you can be perfectly fine one day and really struggling the next so you get 'Well, she was all right yesterday!' I did some talks for Asthma UK in my area and that helped a lot, especially with people keeping their dogs away from me!
I’m afraid asthma is another hidden disease- unless people hear you wheezing they just think you’re unfit.I have M.E too and some people still don’t even know what that is or think you’re a malingerer. I learnt to ignore what others think,just accept and adapt to your condition,work round it.If people suggest I’m faking I tell them they should be me for a day! What does make me laugh is when someone moans about their job,problems etc.I remind them they should be grateful they have their health and a job!I would love to be able to work again!
Nil carborundum illegitimi! You are not alone and if you can’t be bothered to explain and educate every time,just ignore the ignorant.You can only do what you can do. Have a good day anyway in some way every day .🤗
Are you getting worse since the diagnosis or better? Have you got a wheeze or is it more the silent asthma type? What is the rescue inhaler that you have and do you use it a lot? Does it work for you?
Hi Tugan, i have gradually got worse since being diagnosed but after my hospital appointment today, it is pretty clear that VCD is also aggravating the Asthma. I use Salbutamol as my rescue inhaler and i can say that it does work for me although i think i am guilty of not using it enough. ...another sign of refusing to accept this condition, i suppose. I dont have wheezing, my asthma is silent and the doctors say i have exercise induced asthma. This condition is ruining my life. I used to be very active and i hate that i can't do the things i used to be able to.
I take my reliever everywhere I go. If I get breathless, I take it. Some people take two puffs before they do exercise. I notice that if I am having a good day, I hardly need it at all. Other days, I take it more often depending on why the asthma is playing up. It could be because of a chest infection or dust or pollen. Some people react strongly to the reliever and get a fast heart rate. I rarely get that at this stage.
Asthma should not be limiting your life as much as it seems it is. You definitely need to see the doctor again and explain how debilitating it is for you - give examples. Sometimes doctors don't get what you are saying until it's specifically illustrated for them.
Just thought - two things that may help you to check on your asthma - 1) an oximeter which when placed on your finger gives a general idea of your oxygen levels as well as you heart rate and 2) a Peak Flow meter. Peak Flow readings are very important in deciding how well your breathing is going.
"The peak flow meter works by measuring how fast air comes out of the lungs when you exhale forcefully after inhaling fully. This measure is called a "peak expiratory flow," or "PEF." Keeping track of your PEF, is one way you can know if your symptoms of asthma are in control or worsening."
LysistrataAdministratorCommunity Ambassador in reply to Tugun
Just to say, pulse oximeters aren't really generally recommended for asthma - sats don't necessarily drop even in an attack and shouldn't be relied on. This post from the asthma nurses explains more: healthunlocked.com/asthmalu...
Peak flow is more useful, but again can be individual. Some people find it more helpful than others, but it should not override symptoms, especially during an attack. It can be very helpful for people who aren't great at noticing their symptoms, and who have a peak flow that reliably matches how asthma is doing - again, not everyone. JAM1AM, this post about peak flow may be helpful for you: healthunlocked.com/asthmauk...
I hope that the reply which Lysistrata sent to my reply concerning oximeters and the peak flow meter also went to you. Some very interesting information concerning both but , in particular that the oximeter is not a good indication of worrying asthma. The links she sent on the reply were excellent and are extra to the other links sent to you in the general response. I hope that makes sense! Forgive me if it doesn't!😕
i started with asthma later in life but i was suffering with hayfever which is related. And i too got worse tried most combi inhalers not good ended back on the inhaler i started first with adthma. Had ct scan found that ive got scarring and nodule in my lungs afterva bout of pneumonia nearly 3yrs ago. Just got worse consultant discharged me ftom clinic without letting me or my gp snd my asthma about zny change of medication. So now my asthma has get intouch for advice after he told me and them thst he was either giving me sn extra inhaler or chaging them completely wouldve found out if he kept his promise to ring me not write to me now still wsiting to hear about whats happening.
So make sure you get short changed( don't get fobbed of by them ). Suggest you mske a note of any quedtions you want to ask and also ask for any letters he going to send to your gp mske sure you get a copy of it. Then if any problems you can show your gp your letter if different also if they ask you if you drink they twist that around and make up out to be an alcoholic so be careful i had thst done so did an old lady i knew.
Hi and welcome! Sorry to hear about the diagnosis - you're not a fraud, but a lot of us struggle with feeling that way as I think asthma is often underestimated, even by medical professionals sometimes. I won't repeat the great answers from others, but just adding some more info/links - don't feel you need to read all at once, but they may be helpful.
Asthma + Lung UK will be doing a live event here on the forum on the evening of Oct 5th with their in-house doctor, if you have any questions: healthunlocked.com/asthmalu...
And the asthma nurses are always ready to listen and advise: 0300 222 5800 M-F 9-5 or WhatsApp - 07378 606728.
Hi, sorry to hear you are struggling so much. I'm another newbie, diagnosed last Christmas, and mine is also triggered by exercise (and also by damp weather, so I'm bracing myself for autumn!!!)
You said you were guilty of not taking your reliever inhaler enough. I used to be like this too. I'd read all the advice about how you 'shouldn't' need it more than a couple of times a week as if it meant you were somehow 'failing' if you did, so I would struggle on without it. I've found since I started reaching for the 'blue rescue' as soon as I start to struggle, I actually end up needing it LESS. I think it's because by taking it as soon as I feel discomfort, my lungs don't have the chance to get really irritated. If I wait, they then get so sensitive that the least little thing sets them off over the next few days. So don't try to 'cope' without the reliever - as soon as you start feeling discomfort, use it.
I'd also really encourage you to ring the helpline and talk to one of the nurses. They are so kind and helpful, they don't mind how many 'obvious' questions you ask, and they've always left me feeling much more in control and confident about managing my asthma. They've also helped me know what to say when I speak to my GP - I would be totally stuck if I was just relying on the GP surgery for help!
Try not to get discouraged. It takes a while to get the right balance of treatments and to work out your triggers and any lifestyle changes you need to make, but you do get there.
I am the same was diagnosed after having covid in 2020. I had such problems with my chest i could not breath, walk long distances etc. Nobody could or would understand that therecwas something wrong. Luckily i have a brilliant gp who realized that it could be asthma and started treatment while waiting for a referral to the chest clinic. Ater that it was a simple diagnosis Asthma. It took a while of adjustment but now am on the correct medication and inhalers iam eventually starting to stabilize. I get the occasional flare up but my gp is very quick and treats it. . I take numerous medications including montelukast which takes a while to work but it does work. I always carry my ventolin inhaler with me just incase i need it.
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