Just discovered i have moderate copd (not mild as i was led to believe). Fev1 is 1.78 and 68% i haven't a clue what this means....

[Kazz51]

I joined a few weeks ago after being diagnosed with copd at the beginning of feb....i initially felt like i'd been given a death sentence but you good people on this site helped me to come to terms with it. Finding out it's worse than i thought has knocked me down again a bit. I'm struggling to stop smoking but was encouraged by the thought that it had been caught early, now i'm back to wondering if it's really worth the battle. I have seen the nurse today as i wanted advice on diet and exercise, she wasn't very helpful with that but has referred me for pulmonary rehabilitation and gave me the fev1 figures. I have a form to fill in for dla but i'm not sure what to put...i'm hopeless at working out distances but i get out of breath just walking upstairs or from car park to surgery (which my GP reckons is about 50metres) can anyone help please? I have just phoned BLF helpline but can't speak to benefits advisor today and my mental health social worker is coming tomorrow to help with the dla form but obviously she hasn't a clue about copd so i would appreciate any help. Also how do i apply for a blue badge?

[Gordon57]

Take your time and don't try and rush anything.

Stopping smoking is a priority really, once you get past the cravings you will improve your longevity a lot more.

68% puts you in the Moderate category. There's Mild, Moderate, Severe and Very Severe. Once you get talking to the BLF team they will explain more about that. But, you're a long way off yet. Walking 50 metres puts you at Grade 4 of the MRC dyspnoea scale, again, BLF can explain that for you.

DLA is a difficult one and if you're not sure, get help. Check your local CAB or DIAL and see if they can help. Sometimes they will help you fill the forms in and will know what words to use. It's a long form and I normally advise using the electronic version so you can go back and correct it if you need to. Go to gov.uk/dla-disability-livin... and click the one that says "Download ‘DLA claim pack - adult interactive’ (PDF, 698KB)" Save that to your computer, in a place where you can find it again, and don't forget to keep saving it as you fill it in, so you don't lose it all.

You can apply for a blue badge online - gov.uk/apply-blue-badge - and this goes on to your local council.

[Kazz51 in reply to Gordon57]

Thanks Gordon. I've got patches and an 'elite cig' to help with the smoking and i'm managing to not have any during the day (hard work though!) but i can't do evenings for some reason although i am managing to keep to an average of 3 an evening (5/6 if out drinking). It's just hard work and i really struggle with 'is it worth it', i don't have much in my life as it is, have other health problems and live alone...but i'm trying

[Hidden]

Hi Kazz

I was diagnosed with moderate COPD two and a half years ago with scores very like yours. At the time I smoked. I was quite breathless, had to mow the lawn in small sections, did not want to walk anywhere, drove to the shop 50yds up the road etc

I gave up the fags two months after diagnosis using Champix and over the last two years have lost some excess weight (stone and a half)

I now walk the dogs for 30 mins twice a day, spent this weekend mowing lawn, putting up new fence panels and cleaning the decking! (to be honest now aching from head to foot)

Smoking affects everyone who smokes however it has a huge impact on your level of breathlessness if you have COPD.

See your GP, get some support for giving up .... its difficult but it will improve your quality of life hugely and will reduce anxiety etc

All the best

Izzwhizz

[Kazz51 in reply to Hidden]

Thanks Izzwizz it's good to hear from someone who has been in same position and has benefited from stopping smoking as i have had people tell me that they've known people who got much worse after stopping! I'll keep trying....unfortunately i can't take champix although i've heard lots of people say they're brilliant

[Hidden]

Thanks Kazz

I have struggled with anxiety and depression for most of my life ....... COPD diagnosis does not exactly help with either. I thought smoking reduced my anxiety

I was so wrong!

I was scared to death by COPD, my GP made it brutally clear that continuing to smoke would reduce my life expectancy .... I didn't think I could do it ..... but I did ....... FEAR a great motivator! ........after three months I felt MUCH better ..... please try.... there is nothing more stressful than knowing you are seriously ill and possibly doing something that makes it worse.

There are other options to Champix ... it does not suit everyone ... I gave up for a while (4yrs)years ago using patches .... its is really all in your head.......Just BELIEVE you will benefit SOOOOOOO much if you do!

I think those that say giving up made them worse are referring to the fact that if you completely stop your lungs start to come to life and remove all the gunk that sits in them so you will cough more for a while.

Take care

Izz

[jan99 in reply to Hidden]

Hi Kazz,spoke to you a few weeks ago when i was off the cigs for 12 days,now I am counting in weeks.Agree with izzwizz I feel so much better for giving up dear God I really struggle some days,but I just have to force myself to remember how much better I feel now to what I was like.Going to start pulmory rehab classes soon,was up yesterday for test.could not have walked the lengh of myself a few weeks ago ,did the test fine.I also suffer from depression have been on Paroxetine for 14 years since my 19 year old daughter was killed in a car accident.Tomorrow is her birthday and is not a good day as is every day but I must stay positive I have 4 grandchildren who depend on me being around a wee while longer.YOU CAN DO IT please try take care jan99

[Kazz51 in reply to jan99]

Hi Jan. Well done, glad to hear you're still off the cigs I'll keep trying....Thanks x

[Kazz51]

Thanks Izzwizz. I've battled with depression and anxiety for many years too and also have fibromyalgia (amongst other things). I know what you mean about being scared but then i also think (and i know it sounds bad) what do i have to live for and more to the point how long will i have a reasonable quality of life! I've tried the inhalator but didn't like it and don't really think it helped, trying patches now, been using them since last monday and yes i've noticed a slight cough that i didn't have before. Stress is a big one and at the moment i have the stress of all these benefit changes on top of everything else....life's just one big battle and i often feel like just giving up and saying 'what will be will be'

[Hidden]

Hi Kaz

I think you have main point .... quality of life .... mine is much better now since I gave up smoking ... a little bit richer, but more importantly able to enjoy going out and seeing the sky and moaning about the weather ... not something I was doing very often when I lived in the armchair and watched a depressing amount of daytime TV.

I know my quality of life will get worse, but (quoting one of my fave films ... Gladiator')

'Not yet my friend ..... not yet'

Hope is all we have

Be strong

Izz

[moneal]

Before you start to fill in the form, look around the internet for some help, I used:

benefitsandwork.co.uk/disab...

but there are lots of others, I was also lucky enough to have a friend who fills the forms in for a living. It is important to put the correctly worded answers in the right places, i.e. you don't have good days, you have better days.

The advice sites will tell you the sort of figures you should put in the answer boxes, as Gordon said do not rush it, I think we spent the best part of three hours filling it in.

Blue badges again Gordon says can be done on line, but if you get your DLA you automatically qualify for a blue badge.

Good luck, we all know how daunting that form looks and try not to reach for a cigarette halfway through.

Maurice

[Gordon57 in reply to moneal]

Blue Badge is automatic only if you get higher rate mobility component of DLA, not the other levels. There is no automatic Blue Badge under PIP by the way

I spent perhaps 2 weeks, on and off, doing my DLA application. I kept adding to and taking away until I was happy with it. That's why I used the electronic version, not the paper one they sent out. The disadvantage was that all the printed A4 sheets didn't fit in the C5 size envelope they had sent, even when folded carefully.

[Jo_BLFHelpline British Lung Foundation]

Hi kazz51

We are around today if you would like to give us a call about benefits and blue badge.

We always advise keeping a detailed diary when applying for benefits - just for a couple of days - start it from the moment you get up, what you do, how you do it, how long it takes you, how it makes you feel physically and emotionally to the moment you go to bed and anything that happens through the night. We would also suggest having someone from an advice agency to copmplete the forms for you (eg) CAB, Age UK - statistically you have a better chance of being awarded the benefit. Doing a diary is also a areally good way of seeing how the COPD affects your day to day living - because COPD can come on slowly people with it often 'adapt' or get used to not being able to do certain things anymore. It is also very important that any depression or anxiety are in the forma nd diary as well. As there is quite a lot of information it would be better if we could talk this through with you over the phone - 03000 030 555.

Cheers

Jo