Feeling alone and frustrated

I was diagnosed following a viral infection 5mths ago and struggling... CT scan is all clear, other tests are clear (phew!) but I am currently on my 3rd course of steroids since December following yet another exacerbation... Hospital say its stress..... I am a shift worker and have been for 5yrs.. I love my job- I work front line for the ambulance service- and apart from the viral infection nothing has changed in my life for the last 5yrs... my previous illness consisted of migraines and I have not needed antibiotics for 15 yrs previous to this!!! My first ever chest infection !!!!

Hospital today ( I'm only ever seen by a respiratory nurse!) now say i need to make life changes and reduce my 'stress' by giving up work!!! And thats really simple and obviously won't impact on any further stress ( sarcastic tone !!!) Financially I need to work and emotionally I LOVE my work !!! Work have been excellent and are very supportive ( unusual I know for NHS workers!! Again sarcastic tone!) Does anybody else out there feel frustrated with the lack of help from the medical profession? Im being told I'm not showing signs of typical asthma! And I need to wait to see the DR if I get an exacerbation as they hand steroids out like sweets apparently... but after 5days of being breathless and on day 5 being unable to complete more then a 3 word sentence I felt I needed some help!!!

Would be nice to hear from anybody who feels frustrated with similar situation... I feel very alone.. part from work colleagues and family who can see how unwell I've been....!!!

Medical professionals make dreadful patients .... but I hope I can say I would never want my patients to feel likeI do at the moment when I attend to them!

9 Replies

  • Hi Wesley,

    I've been, come out of and am back in exactly the same situation as you are in. It took me years to get Drs to 'get' my asthma mainly because I don't wheeze and generally have quite a high peak flow. Then I had a run of severe attacks and was seen by a consultant when people took my asthma more seriously. However, I now have a consultant who believes it is stress and my weight (I am slightly over weight but don't really look it and by body fat is fine). I have been known to say the only stress I have right now is that my asthma is seemingly out of control and then I came across as anxious! I have also been told my GP over prescribes steriods which resulted in me ending up in A&E a few weeks ago. I have an appointment next week when I will be bringing this up.

    Sorry to rant - I think it is safe to say I am very frustrated with the situation too!

    Don't worry you are not alone and I am sorry I can't offer any advice. Have you tried giving the helpline a ring?

  • Hi KaylaP

    Thank you for replying... very frustrating isn't it... the machines say I'm fine but the body says I'm not..... !!!

    I too am a little overweight but am reasonably fit - work is very physical - and i have very active dogs that require walks, i swim with no adverse effects but can't go in the gym anymore as i am unwell for the rest of the day!!!

    Post viral exhaustion with the asthma is the hospital latest saying!! Not a typical asthma symptom - that was what the nurse said today!!! the only stress i feel is when the asthma is not controlled... and then i'm on a hamster wheel which I can't get of!!!!

    Sorry to hear you are suffering again but nice of you to get in touch as it reminds me i'm not alone... may try the helpline soon if nothing improves ....

    Take care

  • Hi

    I'm exactly the same! Basically in 2007 I got my first ever chest infection which left me with a persistent cough took me years to get asthma diagnosed as I don't wheeze unless I'm bad et just cough - had so many medical professions doubt me including a respiratory consultant who thought it was acid reflux except I had no other symptoms!

    The only person who believed me from the beginning was my asthma nurse who was fab, unfortunately she passed away last year but she suggested so many things to see what prevented it etc - simple things like perfume, air freshness etc

    Thankfully a few years ago I got re referred and saw a fab consultant who finally got it and helped 2 GPs at my practice get it and I was finally diagnosed with brittle asthma last year! My asthma flares up so quickly within hours no warning and only thing that helps is steroids and sntibiotics do I have a supply at home. It flared up 2 weeks ago with this virus that's going about and I'm still not much better so going to be off work again next week week 3, I also got a virus in December and was off for 2 weeks, I have been assured that there is nothing I coukd have done to avoid getting ill but I feel so guilty, I hate being off work and as sad as it is I live to work!

    Oh also my peak flow when at hospital last time in December was 650 I think, it's been at 350 the last week or so up to 420 today though.

    I should slso add that my asthma is irritated by allergies changes of temp etc in the summer I avoid outside like the plague, I've missed weddings, night outs, lost friend all due to people not understanding and now when it's fine it's great but when it shatteres it shatteres shuch is sooooo frustrating and disheartening.

    Sorry if this is a bit muddied up and a rant I don't mean it to be but my brain is serious mush!

    Please be reassured your not alone and it will get better

    Hope this helps and please stay strong and try and get an sppointnent eith your asthma nurse

  • An update

    I'm no better so phoned up Dr for advice spoke to a nurse who doesn't get it at all made me feel like a fake which I'm not I only wanted advice I've to go to Dr later but not holding out much hope as its a Dr who I've not seen and not many get how brittle my asthma is bad

    Peak flow 350 was 600 in December - was told that's hoid by nurse today but Dr said it wasn't kast Monday!

    ARGH I coukd cry in fact I am

  • I can totally understand how you're feeling, sometimes it can be so frustrating can't it.

  • Totally! I hate it and the way I'm made to feel

    Dr was great though and said I was def right to get checked out just to rest for another week and hopefully this virus will leave me and let my asthma go to normal

  • I know how you feel, the medical professionals have the worst communication skills! I recently went to see my GP as my symptoms were so bad, and he just gave me steroids and told me to 'deal with it'. I was feeling very stressed at the time and asked if I could possibly have some anti-anxiety medication instead of the steroids (as mine is stress related) but he just said that I would have to find another way. When I asked for some suggestions he just said it wasnt part of his job and the my 10 minutes were up! I mean, I could have had a nervous breakdown?! I decided not to rely on him as he is useless anyway, I found different ways of dealing with the stress which helps my symptoms. I also can not give up work (who can?) but I generally look after myself much more and try not to run around and achieve a million things in a day (like I used to). Instead I go for walks and try to enjoy life at a slower pace which is working for the moment. Hope it helps x

  • Thankfully mine has improved, still not great I lnow exactly what you mean about them not getting it or even trying to help!

    I would love to be able to go for walks, gym, swim etc but unfortunately it's so seneitive I cant

    Back to work tomorrow after 3 weeks off And I'm dreading it I'm still shattered and feeling rotten oh and my sinus have flared up big time but I need to go back, the longer I leave it the worse it'll get to go back :(

  • I don't know if this will help, but I find it does with me when I have a viral infection - or even if I think I'm going down with one. Basically it's a variant on the hot honey and lemon drink but I find it much much more soothing. One teaspoon of finely chopped root ginger plus one teaspoon of honey topped with hot water. We always keep root ginger in the house now, just in case ...

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