I started to write this at 9.30am was almost finished when I touched the wrong key and lost what I've written, I have an iPad and so far have not found out how to save like you can on a pc.. The problem also is I have forgotten how I put this together, so will try again. I have just read poetic lady and others saying this site should get back to helping and supporting each other and I agree.
I have been really depressed since end of September, awaiting results etc, but have been reading what's been going on, and thought I would leave just like Rose.
I made a comment on AnneGodolphin post (not much known) it was in answer to Mark Pillings BLF. He stated that Chronic Asthma was not under the same umbrella as COPD because it was reversible. It's another story but I got a printed copy from GPs recpt of my hospital results
I have been diagnosed with Chronic Asthma,, I have had asthma since a child. It appears
it is now much worse,, it also states FEV/FVC of 65 with NO reversibility I am to remain on seretide and sprivia plus ventolin. I stated that to mark, and also the medicinenet.com
Where it stated that it did come under (umbrella of COPD ) there seems to be some confusion between the medical world, when all serious lung diseases were COPD and now only emphysema and chronic bronchitis are classed. Also that 'they' always state that chronic asthma is reversible.
My point to mark was not answered only another (helpful supportive) member told me very clearly to GET OVER MYSELF, suggesting I wanted to get under the umbrella of COPD.
Anyway my husband arranged a lovely weekend break. I feel so much better, that person is not worth me worrying about.
Maybe I was too sensitive at the time, but I can understand how Rose felt, I will not leave this site for having an opinion and wanting answers. I am sorry for having to get this off my chest (no pun intended) I am acutely aware of people on this site who are very very ill and do not what to hear or should I say read this nonsense. I just felt that I had to write this down.
Rubyb24, I am glad you took the trouble to write this down. You are right, some class severe cases of asthma as COPD whilst others do not. Whatever it is classed as it is very dibilitating. And being told to get over yourself is no help whatsoever. Did you report the comment? I think that is what we have come to realise through Rose's struggles, to ensure all of the bullying, rude, insulting comments are reported and then they can be dealt with appropriately.
I am really sorry you felt you may need to leave the site and very glad you decided not to. I look forward to speaking with you again.
Auntymary
x
• in reply to
Thankyou Auntymary
I hovered over the publish button for awhile thinking iam putting myself open for more cutting words. No I didn't report it I thought I was being to sensitive, also the person may have regretted it. But I've not heard any more.
I have to say that whatever you have it is a lung condition, and sounds like a baddun too, so whether its under the umbrella of copd or not, what does it matter. Richard has ipf, which is not copd because it is restrictive not obstructive, the most important thing is that sufferers of lung problems stick together, because the bottom line is you are all in the same boat. I told myself last night that after all the kerfuffle I would take a back seat and just read the posts, but here I am putting my oar in again, I do feel strongly about it though that you all get the support and advice that keeps you steady, lets try and keep it a nice friendly site, ignore the ones who think they can cause trouble because cyber bullies, which is what they are, are usually timid little pipsqueaks who wouldnt say boo to a goose if you met them.. OOps, for somebody who wasnt gonna talk av gone a bit overboard, butam a woman, its me job. xx
I will stay, and it was because of rose that I felt I had to say something. I do miss her blogs and questions she made me smile many a day.
B.
Thankyou b.
• in reply to
Having Asthma is enough without more stress do not worry about what your lung condition is only how you live with it and there is a lot of support whatever your lung condition (even for the carers of those with lung conditions) you should stay and talk.
Hello Ruby - I'm so glad that you took a stand for that is showing the bullies up for what they are. We are all in the same boat so to speak and as the old saying goes " A trouble shared is a trouble halved" Well done in voicing your opinion and giving us all a voice.
I feel better now for posting it I was really unsure, thought of letting sleeping dogs lie, but it was nagging in my head, my stomach kept turning cold, so had to get it of and out of my mind.
B.
• in reply to
You can still report the nasty comment you know. May help to put the naggy feelings to bed.
This is the British LUNG Foundation. So therefore it includes asthma, COPD and all the other ones. Whether they are reversible or not doesn't really matter in my opinion. Good luck to the ones who have a reversible illness though and I hope you get better.
My problem is that I have been very unwell since February and going through all the tests does make you vulnerable to depression, mainly because of conflicting diagnoses. I had my letter saying non reversible asthma, and Mark Pilling saying asthma is always reversible and he never replied.
I don't like labels, I worked for eighteen years with special needs children and implemented the many changes to how they were seen. However it is important that a condition is recognised and help can be put in place. If one decides I have COPD I would have access to resp nurse and pulmonary rehab, if another says chronic asthma then it stays with six month check up, I do not want a label of any kind, but sadly as with the children I worked with it is that label that gets the help!
Thankyou so much puff, that is just the explanation I have been looking for, I thought I sounded desperate but it shows how difficult it is to explain my situation. I was also wondering if it is budget wise that cutting half the asthma /COPD patients out means less money is put in the pot.
Thank you again. B.
Ps having lots of trouble with this site today difficult to post or see blogs.
• in reply to
Most of us having the same trouble with reading blogs or posting. Click on something and you may as well go make a coffee for the time it takes. Seems to be a problem whenever more than 2 or 3 are on the site at the same time.
• in reply to
Yes it seems to be a problem today! I got you twice? That's value for money Auntymary
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