Is, I am finding, the norm when learning about a condition that's new to you.
Nobody either wants to know or plain ain't listening.
EG,
At work, "are you still ill?"--Reply,it will never get better, if I kept smoking like I did I'd be dead inside 5 years, do you get it?--2 weeks later, what's wrong with you today!! feccckkkkkk!!
Spouse, the things she says show either fear of what's happened or not really listening, I'm opting for fear cause the other ain't very good at all.
"Why are youwatching these videos all the time?"
Cause I'm trying to learn as much as psooible about what the docs don't tell you to stop it getting any worse. Knowledge is vital.--2 week later why are you reading this all the time---fecccckkkkk!!!
Rant over, thanks
Written by
Robert_Helton
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We like to think we listen yet we hardly heard what the other person says! There are people who are skilled at it - I admire them.
What is important to you simply gets blocked before it reaches their listening receptors! That's friends and colleagues for you! But before judging them try and remember what they said to you recently and you'll see what I mean.
As for the wife; COPD, arthritis and sleep apnoea are ALL taboo subjects in our house. Like the proverbial ostrich, if you can't see it then it isn't there. I don't mean that in a nasty way, my wife (who does a great job of looking after me) just never, ever discusses these conditions.
Yes, at times that makes the journey lonely and frustrating but as much as I want her to understand my needs I also have to respect her needs.
I guess that's why I'm here ...
Best wishes and thanks to all those on the forum who listen
As y_not explains, people do try to listen but don't always take things in. Chronic illness is not easy to understand or take on board. I looked up all l could about sarcoidosis and COPD and Pete and l do talk about his illnesses just not too often.
Have a good day and enjoy it. Xxxx
Hooray Robert - you found us! The folks on here are the people who listen, discuss problems related to living with our conditions and have a combined number of hundreds of years of experience in order to offer advice. I have had my condition all of my life. I know more about it than most of my doctors. From childhood none of my family or my children have ever talked to me about my feelings related to living with this. My friends know that I have it but don't really understand what that means. A long standing friend even said 'you're coughing well' to me yesterday when handling a dusty book I was helping her with set me off. To fit in I have always kept it to myself. I live alone and have nobody to look after me when it flares up. I have never had a friend or family member take me to a hospital appointment. The world at large does not understand and doesn't want to understand. So during my lifetime I have informed myself as much as possible. I live my life in the best way I can to control my condition. I don't take nonsense from the ignorant and when The struggle gets me down I share it on here where, three years ago, I found a source of help and consolation. Welcome.
Keep coming here, Robert, because we do understand. Rant as much as you like.
I don't discuss my stage 2 COPD much with my husband because he would get more worried than me about the prognosis - he can't do much about it, but I can. He knows I want to get fitter, so he's always encouraging me to go out for a walk with him, which I love.
As for friends, the two who actually understood my diagnosis when told were really worried for me as one of them worked voluntarily with people with stage 4 COPD, and would have put me in a gilded cage instead of letting me be my usual busy self. But they do tell me when to stop and sit down sometimes, when I go pale and dizzy but pride is making me refuse to give up. Several others (all smokers) said, "Oh, I've got COPD too" and minimised it. I advised them to give up smoking or they could end up like me or worse.
I tend to wake up an hour earlier than my husband, and spend that time on here on HU's BLF pages. It's a great way to start the day, with friends who understand, I learn such a lot, and my husband is none the wiser.
Thankfully both of us always listen to each other and discuss our health problems as we know you need to find all the information you can as health professionals are quite often too busy to explain to you and often do not necessarily know that much themselves - it would be impossible for them to know everything, especially if you have something like bronchiectasis or Aspergillosis - my GP has admitted he had never even heard of Aspergillosis and he is retirement age now! i am amazed though at how much they don't know about something that seems to be as common as asthma - I didn't realise this until I got the other conditions and was seeing a specialist nurse at the hospital that there was so much that could be done for my asthma. Could almost say it was a good thing that I developed the other conditions!
That rang some bells Robert! Can be really frustrating but it's good to know we can always come here for a rant! Or advice, sympathy, the list goes on thankfully. Take care xx
Nobody ever truly understands how being sick feels, unless they have a chronic illness themselves.
When I was first diagnosed and the only information I had found was on good old google, ( The rediculous 5 years prognosis.) I voiced my fears to two of my SIL's, both, I might add are as fit as fleas, the answer one gave was
"Well, we've all got to die of something. "
Now, I keep my health problems to myself and on here. Finding this site was the best thing ever. xx
I'm afraid I have learned not to talk about my illnesses. I don't bring it up with family because I hate the concern in my mother's voice and my family that I live with see my symptoms and know when it's bad and when it's not.
As for friends I have barely told anyone apart from two or three very close friends probably for the very reason you've said. In the end it becomes a bit of gossip fodder which I truly abhor.
A lot if people don't understand I think. Because an illness is not clear to the eye it seems like it's not serious. So I feel forums like this are so very, very important. It is important to talk about it with people who won't make you feel bad.
All of us have bad days. I've ranted quite a bit on here. Do so any time you please. No one will ever judge you. I promise. 😃
I feel slightly the odd one out here, in as much as I do talk to my family and friends about IPF and more recently the 40% shunt in my lungs. Maybe carrying Oxygen bottles make it more obvious that I have a problem that is not straight forward.
My wife, daughter, parents and people close have been aware for some time and do listen and understand it will not get better. My son, is not so good at discussing his feelings and is burying his head in the sand, I can appreciate that he is finding it hard. At work, most, people appreciate that it is not getting better, that may be because they only see me intermittently as I work from home. So first they saw me with the oxygen bottle walking around, until, the last visit I made it to the settee at the entrance and "held court".
Then, there is this forum with all sorts of talented people, that have knowledge and experience.
All of these people are my support network, they help me bounce back on the days when I don't feel so good.
I feel extremely lucky to have all these people with which to talk.
It can be very frustrating at times. When coughing is part of your life, people that I see regularly, will still say 'you need to take something for the cough/cold' or 'you still have that cold?'.
I have come to terms that my husband is not very good at being a 'care giver'. I have had lung issues for years and it wasn't until I ended up in ICU on a respirator for 6 days, that he realized that I have a chronic serious condition. It took him years to understand that.
He's really good about taking me to the ER/hospital when I need to now.
At this website, everyone is going thru what you are going thru. It helps a lot just knowing that.
I don't talk too much about it, I don't like drawing attention to my condition. But if I meet some one that questions me, I will talk about it....I consider it a passing of knowledge moment.
My neighbour, who cheerily smokes like a chimney, said "...that won't kill you..." when I told him I'd got copd. I didn't try to talk to him any more...!
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