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World COPD Day – self-management

BethanyBateman profile image
29 Replies

It’s World COPD Day so it’s quiet here at head office, as many of our staff are attending awareness raising events around the country.

They’ll be talking to members of the public about recognising symptoms (that could be caused by a host of different lung conditions) and the importance of getting them checked by a doctor. They’ll also be raising awareness of the fact that it is possible to live well in spite of a diagnosis of COPD, and that there are things you can do to manage the condition.

So, what are your top tips for managing your lung condition? What are the most important and helpful things you do to stay healthy and active?

I’d love to hear what you think.

Bethany

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BethanyBateman profile image
BethanyBateman
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29 Replies

Not getting stressed a think is number (1) as I think THINGs can spiral out of control if you don't get a grip AN or let things get to you.

Nummber (2) would be exersice no mater how little BUT is hard staying motavated when infections keep nocking you for six and flat on ya A##

mmzetor profile image
mmzetor in reply to

do agree with you

peege profile image
peege

Wouldn't it be great if just half of the members (who could afford it) gave £5 to your charity today.

It's very easy to do using a mobile phone text.

Thank you for all you do. Peege

BethanyBateman profile image
BethanyBateman in reply to peege

Thank you Peege. I love my job, as I think everyone does here. It's great to know we're making a difference.

peege profile image
peege in reply to BethanyBateman

We met at the RSM, London summer before last. Along with O2Trees, Parvati & Sohara 😃

BethanyBateman profile image
BethanyBateman in reply to peege

Oh fantastic! I didn't realise we'd met. :-)

Louisiana profile image
Louisiana

Free of stress - ha ha ha!! :) Try to be mobile as much as possible even with all the coughing. Follow the Pulmonary Clinic's advice......good luck everyone :)

Toci profile image
Toci

1. I am still me, not some product of a disease.

2. I am not to blame for what I have.

3. Exercise and a positive attitude are the key to a continuing life.

4. Do your research and understand your condition.

5. The BLF website is a lifeline.

velvet55 profile image
velvet55 in reply to Toci

Hi Toci

How true

Velvet xx

sassy59 profile image
sassy59

I try and keep Pete well by ensuring he has a good balanced diet, drinks lots of fluids, uses a scarf when out and about, takes all his meds, inhalers and nebs and just generally try and keep him away from people who are ill and that includes family.

I have recently donated to BLF too as you do a marvelous job. Thank you. xx

sassy59 profile image
sassy59 in reply to sassy59

Forgot to mention that I also make sure I take good care of myself too as not much good to Pete if I am ill. Take care all. xxx

BethanyBateman profile image
BethanyBateman in reply to sassy59

I'm glad to here it Sassy. Too many family members forget that their health and wellbeing is just as important!

Jessy11 profile image
Jessy11

Hi Bethany, I have COPD & there's a few steps to take to help you live with the condition.

Exercise & attend PR if it's offered or available in your area.

Eat healthy foods, small meals are better more often than eating one huge meal.

Sleep is a healer so get as much as you can.

Taking meds as prescribed by your GP or consultant.

Attend respiratory reviews & get help with any problems that arise.

Have your annual flu jab & pneumococcal jab every few years.

Keep active to the best of your ability. That is your mind as well as your body.

Have a positive outlook on life & don't stress about unimportant things.

We are in charge of our lung conditions & will manage them, not the other way round.

Take care & keep well everyone 💐

BethanyBateman profile image
BethanyBateman in reply to Jessy11

"We are in charge of our lung conditions & will manage them, not the other way round."

What a fantastic sentiment. And great advice too!

Billiejean_2 profile image
Billiejean_2

1. Try not to let your illness define you.

2. Be as active as you can exercise as much as possible.

3. Take medication as prescribed and at the correct times and dosage. It won't work if you keep forgetting to take it.

4. Find yourself a good doctor and consultant - this can be hard.

5. Keep informed about the latest developments in your illness.

6. Be pro-active about things like reading all the leaflets that come with your meds. Watch out for contraindications or drugs you should not take together.

7. Try and adopt strategies to make your life easier. Adapt your home to suit your needs.

8. Join the British Lung Foundation and access the mountain of information and helpful hints there.

9. Join HU for moral support , information and a little entertainment on the side.

10. Have a large standing fan in your bedroom that you can turn on when very sob. This is my saviour after my nightly battle with the stairs. Have a few small hamdheld fans as well. Nothing is as comforting as a great gust of cool air, when sob.

SquirrelsHolt profile image
SquirrelsHolt in reply to Billiejean_2

SorryBillyjean but u use the word sob - I'm even more thick than usual today, but what do you mean, when you atte having a hot patch and can't breathe? Apologies for seeming so stupid.

Billiejean_2 profile image
Billiejean_2

SQ, I posted an answer to you about an hour ago but don't know where it went.

Sob means 'short of breath'. When I joined I didn't know what it meant either :)

SquirrelsHolt profile image
SquirrelsHolt in reply to Billiejean_2

Thanks for that Billiejean 2. There seems to be something "up" with the site as I posted that a few days ago and I've only just seen your reply even though you sent it earlier. Never mind, now I can say I'm S.O.B also.

onamission profile image
onamission

number one is exercise for me and trying to eat healthy but if I had a magic wand I would like

1 The government to understand COPD and how it effects us.

2 Gp's to send all COPD patients on a PR course in the first 6 months of being diagnosed, I gained so much from mine.

3 Set up a exercise group up for people with COPD a local gyms.

BethanyBateman profile image
BethanyBateman in reply to onamission

We'd like that too Onamission! Hopefully it won't take a magic wand but sometime it does feel like we need one.

onamission profile image
onamission in reply to BethanyBateman

Hi Bethany nice to see you on line if you get a magic wand let us know but I think if we all stick together we might be able to get them to change the rules on assessment for PIP & ESA and fund the PR groups.

When I did mine I got so much from that short space of time but the thing I did learn was people will take steroids when they don't need to this is costing the NHS a fortune.

onamission profile image
onamission in reply to BethanyBateman

Hi Bethany I see George Osborne has scrapped the working tax credit plans I had a email from 38 degrees. It might be the best time to hit them with the assessment for work request.

undine profile image
undine

First I would like any further public service broadcasts warning people of the symptoms of COPD not to put so much (or in fact all of the stress as they have in the past) on having a hacking cough - I saw these broadcasts and in fact thought well I must be OK so did not go to the doctor despite being a smoker, and losing weight and being short of breath climbing stairs etc. and thought well it cannot be my lungs as I do not have, and never have had a hacking cough. I think this should be stressed and that other symptoms like shortness of breath and weight loss and being less active and getting tired more easily should all be stressed. Also as it is an invisible disease especially if you do not cough I think the public should be aware that we do not have to be panting for breath all the time to be ill - in fact the opposite - I control my breath and have to all the time - I have to walk slower, stop, rest pace myself precisely to stop myself getting out of control and panting but people think if you are not panting and gasping for breath then you must be either well or malingering - either is offensive but I am not going to lose control just to satisfy their expectations. Every moment of the day especially when moving has to be planned thought out the easiest way to do something, to sit down to wash, have help with a shower, pay for help with housework, fear of going out alone, plan any outing even with someone with me know where the next seat is, above all do not let yourself be in a position where you have to rush or hurry as we just cannot do that and get flustered upset and yes gasping. etc. from being someone who enjoyed life and was very independent I now barely manage on my own just to survive in everyday things all of us used to take for granted and - no I will never get better - no cure in sight - all I can hope for is to tread water so to speak and pray my lungs do not deteriorate too quickly -

BethanyBateman profile image
BethanyBateman in reply to undine

Hi Udine. For some people cough is the only symptom that something is wrong (whether that something is COPD, lung cancer, bronchiectasis or something else altogether. But you're right - to imply that it's the only symptom you need to be aware of is just wrong.

A year or so ago we provided our Breathe Easy groups with some materials about breathlessness and encouraging people to see their doctor if they were becoming more short of breath than their peers. I know that Public Health England ran a short awareness campaign on breathlessness but that was only in the East of England. It would be great to see that rolled out across the UK. And of course, the other symptoms that you mentioned are just as important.

undine profile image
undine

Thank you for your comments above but my point was that whilst a cough is a prime symptom for some people - for some like me it is not a symptom at all - so would like to see stress laid on this point that you can have COPD without coughing at all - so not that it is ;not the only symptom' but that for some it is not a symptom at all - sorry I am repeating myself xx

BethanyBateman profile image
BethanyBateman in reply to undine

Don't apologise Undine. Because COPD is a mix of emphysema and chronic bronchitis, many people have quite different symptoms depending on the make up of their particular condition. For some like yourself, there is no cough, while other may experience very little breathlessness.

I can see how awareness campaigns can be misleading when they don't acknowledge that not everyone who has COPD will have a cough.

undine profile image
undine in reply to BethanyBateman

thank you bethany I feel I was misled despite having the other symptoms breathless, and fatigue etc. I carried on smoking as I thought it was initially just old age creeping up and actually said to myself well it cannot be the smoking or my lungs because I do not have a persistent hacking cough just wish now I had not left it so long to go to the doctor - have given up smoking but of course, all too late now the damage is done.

_Esined_ profile image
_Esined_

Hello, new on here I have copd , asthma, and lower back problems. I had pneumonia a couple of years ago, and have various other medical problems (I won't bore you with! ) I have difficulty doing the "normal" things in life such as showering, housework etc and get out of breath very quickly! Am in the process of filling out disability forms and wondered if anyone has any advice to help me - I'm 46 years old with a young child of 8! I only have my mum for support and she's in her 70'S (although fit as a fiddle) the forms are half way through and I have been for a blue badge assessment last week , which went well (for a change) gp is useless and am getting depressed and feel unsupported. Thanks in advance

BethanyBateman profile image
BethanyBateman in reply to _Esined_

Welcome to HealthUnlocked! I'm sorry to hear you're having such difficulty now, but you've come to the right place for advice and support. For help with your disability forms I'd suggest talking to our BLF Helpline as they have experts in this kind of thing. You can call them on 03000 030 555 or email them at enquiries@blf.org.uk.

Good luck!

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