Good to be able to talk: Hi everyone... - Lung Conditions C...

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Good to be able to talk

21 Replies

Hi everyone,

I've been having a bad few days, not felt like joining in much, but I have been reading all the posts!

It struck me (bit slow on the uptake lately) that all these conversations some very lively!

would not be possible in the 'real' world.

I get very out of breath talking, and often lose the thread of what I was trying to say! and often don't bother to carry on.

Dinner today we were talking and trying to eat, I couldn't do both, in the end I left mine half finished, exhausted trying to eat it, I also lost what the conversation was about as well.

What struck me, catching up on here, was, we all have lung problems (der) that the information and banter on this site makes us all 'normal', we are able to say things that in real terms would take an age "well for me it would"

So apart from stating the obvious isn't it Good to Talk.

Ps. I think I might take my iPad and talk to the doctor?

Brenda.

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21 Replies
Preshous profile image
Preshous

Hey Ruby I hope your feeling a little better. When I told my Dr that I use a site like this she frowned at me and asked if it was wise to listen to horror stories... :( . Not at all I replied I am among friends and using a site that is run by a highly respected organisation that is to say the BLF doesn't get much better than that really.

Gary

in reply toPreshous

Gary you should have mentioned its Health Unlocked, its a big site with health professionals looking in. With forums for many health issues, the BLF forum is only a small part of Health Unlocked.

Preshous profile image
Preshous in reply to

I didn't want to overwhelm her...lol. Only kidding but it is quite surprising how many people are unaware of the whole Health Unlocked site period. Its not until you have an ailment like ours that you stumble across, rather than get directed to this wonderful website. For me it is a place to live my life among people who understand what Im going through... :)

Gary

in reply toPreshous

wishing you happy days with your doc :)

Gordon57 profile image
Gordon57

Yes, good to talk, and we're usually all quite open about our condition, so that saves a lot of potential embarrassment. We suffer with the same things and have knowledge on our treatments.

We can chat in our own time and even late at night and over the weekends, when doctors, the BLF staff and many others are not around.

Once you get used to the site it's pretty easy to use, and tons of information if you go back through the many blogs and questions.

None of which would be possible without all those who contribute of course. Keep talking folks!

Thanks Gary,

Yes I bit better, I have to put my problems to one side at the moment my step-dad has lung cancer and was taken in on Thursday. My mum can't be left, she will be 90 jan. he was her main carer, my brother is there at the moment, and I will stay from Thursday, im as much use as a box of frogs really but I need to support my mum.

You see what I mean, I could not have said all that face to face....there would have been to many pauses.

B.

Davybaby profile image
Davybaby

Hey Ruby, great to talk! I'm in the real world too, know what you’re saying love and yes the net is fantastic and yes the knowledge that as a group we have together is better than the sum of the......you know what I'm saying (not sure I do).

Can I ask if you’re so hypoxic (short of breath) when and after eating are you on Oxygen? (perhaps just for eating/digesting) ............can't be leaving your dinner.

Blimey, now I find you’re called Brenda....duh......I find conversation on the phone for example difficult as I tend to breathe through my mouth instead of the nose via a nasal cannula, when it comes to conversation or food, good food takes preference every time, chat can wait!

If not on Oxygen next time you see your Doc'..........with an iPad .......Ooooh ask if he/she can check your Sats.

Look forward to chatting again,

d.

in reply toDavybaby

Thank d.

No not on oxygen, my sats are fine between 95/98. I just get so exhausted eating then I don't feel hungry anymore,

I really enjoyed a Sunday roast but will just have to have smaller portions,

Davybaby profile image
Davybaby in reply to

That’s where mine start (on O2). Little and often then?

See if I get a 404 too

d.

xx

Thanks Gordon.

I can't use the reply button just get page 404

I think that is the key we all have similar difficulties, but can talk in our own time.

B.

Preshous profile image
Preshous in reply to

When I get the 404 error I just close the browser down and come back in and the reply normally posts

Gordon57 profile image
Gordon57 in reply toPreshous

404 error was reported to the site team, they said it would be changed so as to stay on the same page, rather than give an error. That would confuse me even more if I clicked and it went nowhere. Lets hope they fix it properly someday soon.

B I would definitely be concentrating on eating then afterward chatting ;) There is no way I would try and do both and no way I would go without my meal. But is true you can talk as long as you can type the written words and sometimes this makes things easier. Good idea taking the ipad to your doc appointment. :)

in reply to

Hi Zoee.

Sunday's are often the day when we have visitors for lunch, and there are lots of talk,

Today was difficult I'm just tired, and wasn't pacing my breathing very well, took more ventolin, much better now, look forward to a quiet supper.

B.

in reply to

I understand, what I usually do is wait for someone to say you are quiet and then smile and say "I am soooo enjoying this delicious food, it requires all of my attention, sorry I'll catch up shortly" ;) x

junegirl profile image
junegirl

Hi Brenda, i know exactly how u feel im well known for falling asleep after a meal my kids are so use to it that the week id been on steriods for 7 days they couldnt belive the difference in me as i actually managed a takeaway staying awake and being out at my daughters something that never happens in the evenings! however now im back to normal tired after eating and having a kip! XX

in reply tojunegirl

Thanks June,

I did feel great when on prednisolone, all my aches and severe pain went away, I felt I could breathe and stand up straight, it took years off me!! Like someone had waved a magic wand. But I could not stay on them, my dr. told me it takes away all the inflamation in your body, of course it does damage your bones.

My younger brother has had several ops on his back, mine they can't operate.

We were both under Great Ormond Street, and the London Chest Hospital when we were babies in the fifties, pumped full of steroids and steroid creams, that's why I am only 4ft 11

Age does slow you down, but breathing can be exhausting!!

B.

junegirl profile image
junegirl in reply to

im no having such great wk this wk feel tired, bk to going to sleep after eating, woke with terrific headache and coughing so think the start of another chest infection, but me on steriods is a totally different person, kids feel like they have there old mum back even if it is for only a wk lol xx

in reply tojunegirl

Hi June

Sorry your not feeling so good, if it's an infection start with the meds as soon as possible.

Just been having a talk with others about the same thing, feel great on preds, feel as you said a different person,

Wish you well soon.

Brenda.

Jo_BLFHelpline profile image
Jo_BLFHelplineBritish Lung Foundation

Hi Rubyb24

I think you're right - sometimes not being able to physically see the person and the illness can 'allow' people to feel 'normal'.

The web community is a fantastic way to chat, get advice and support and to be with people who understand.

Best Wishes

Jo

in reply toJo_BLFHelpline

Thanks Jo

That's exactly how, and what I feel.

B.

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