Asthma UK community forum

Am I such an inigma ?

I suffer from severe brittle asthma but as with a lot of brittles nothing makes sense , I also suffer from hyperventilation syndrome , anxiety , stress , dis functional breathing pattern, and my wheeze is quite often upper almost throat wheeze.

My sats usually hold abut van fluctuate but I very rarerlt retain PCO2 - I was told by the Brompton that my body has learnt a way to breathe which helps me to blow off any excessPCO2

So I cinstantly get disbelieved and judged and I have now began to have enough . Our hospital has got one lead chest Physio who is excellent but splits his time at so many venues . We had another female consultant who is outstanding but relocated with her husbands job .

We have had now has 2 locus and it's very hard to get continuity abd try to be understood and that you Ae aware of all the contribution factors a. . I am almost begging to doubt myself , , some times my wheeze is ther , sometimes not , there just seems no continuity yo. I had a plan which was on the alert sceme when I was admitted but sometimes it's ignited as is my plan devised with my Drs - because it's not on official paper .

Each time I am admitted and most admissions can last 5 weeks and I feel I deep heavy sigh around the unit - oh no not again .

My family,y are amazing and without them I would have given in years ago . To top it all I used to nurse and I like fed my job with a passion - something now that is a slap in thr face each time invcome I'm - I want to be doing that job !!

BUT THE DRS USE MY MEDICAL KNOWLEGE AGAINSY MR ME ADN CALL ME MANIPULATIVE TO GET THR TREATMEBY I WANT !!! Almost verging on munchausens - I'm getting desperate , I have no social life because if I did anything I have an wiped OT the day before and the day after ,

I know it seems all doom and gloom but it's caused me mu other health conditions and all I can pray abd be thank full I've hit induced type 2 diabetes ,

Am I alone , an I an ignighting - what else can I do

Feel so ioloted

5 Replies

Get a therapist. You need to find a way to think differently about your illnesses. As a nurse, you know that the mind has a huge effect on the body and unless you can be a bit calmer, you are not going to be able to cope with the rubbish your body is throwing at you. Obviously you're having a rotten time so look after yourself, body and mind; find a way to relax and talk to somebody who can help you. Don't be the typical medic patient (all medics are supposed to be lousy patients) be the calm, knowledgeable person you were at work. You can do this.

1 like

Would pulmonary rehabilitation classes help. If so try go to one.

1 like

Just finished a course m was best thing ever but have to wait another year to repeat


I don't find talking helps , I hate talking about my illnesses and when I'm well , I'm well , but thi this admission contrary to other admissions I've kinda been told to but out oof my care even tho I know what works and let the Drs who know best do there job , then they don't even review me after a really bad night with increased optiflow and magnisium . I am about to embark on some more CBT Was I fing this provides a tanaka ble so lotion to issues I deface . Thank you for your care tho X


Thank you x


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