GD53. Hello everyone. I have copd, nearly 10 years now. I need feedback from folk who cope with copd day to day.

[GD53]

Like everyone I have good and bad days.My main problem is when I wake I never know how my breathing is going to be.

Any suggestions as to a routine which works for you, before I get out of bed?

Thanks. I'm new to the forum.

[sassy59]

Welcome to the forum GD53, my husband has COPD (chronic bronchitis) diagnosed 12 years ago. It affects everyone differently but Pete often struggles with his breathing. He has heart problems too and is seeing a cardiologist on Thursday.

I just wanted to say hello and I’m sure others will be along soon. Take care xxx

[GD53 in reply to sassy59]

Thanks for your welcome. Give my best wishes to your hubby. I know how scary it can be when you struggle for breath. Look after yourself pet too. xx

[sassy59 in reply to GD53]

Thank you, I will. Xx

[jackdup in reply to sassy59]

wish him good luck for the appointment on Thursday. Is this a routine follow up or to discuss treatment or tests? I hope and pray all goes well.

[sassy59 in reply to jackdup]

Thank you jackdup I will. I’ve re read the letter from the hospital and it’s a telephone consultation apparently. It may not even be happening as Pete’s had a message to ring cardiology but he can’t get through so none the wiser. Maybe we’ll hear tomorrow. Xxx

[jackdup in reply to sassy59]

I certainly hope you can get through. Frustrating enough waiting for these appointments and then nit to be able to get through would be even more frustrating.

[Ergendl]

Hi, and welcome to the group. I was diagnosed with moderate COPD in 2015. I have managed to improve that to the bottom range of normal for someone of my age, height and sex, through following the advice of many in this group. That doesn't mean I am cured, but it does mean I can do quite a lot without my COPD causing too many problems.

First, I take the medication I have been prescribed - Serevent inhaler twice daily, Ventolin as needed, and omeprazole for stomach issues and reflux.

I also overhauled my exercise regime. I go for a brisk walk most days. When I started in 2015 my breathlessness stopped me from doing anything physical. I went on a Pulmonary Rehab course where the physios helped me identify and correct my dysfunctional breathing. I started out only doing 2500 steps per day: I have gradually worked my way up to 10,000 steps a day. I also started a singing for lung health group which meets weekly, using karaoke songs and singing exercises to practise diaphragm breathing in a fun way.

I also try to eat more healthily and maintain my weight at a healthy mid range BMI of between 22 and 23. That doesn't mean treats are out, just that they are kept as treats, not everyday rewards.

The best bit of advice I got on here when I first joined was from Toci, who said 'don't commit suicide by sofa'.

[GD53 in reply to Ergendl]

Thanks for your reply and keep going with your regime. It makes my heart sing to know that you are keeping well. I am on Trimbow twice daily and Ventolin as I need it.I too have been for pulmonary rehab and found this invaluable. The diaphragmatic breathing techniques help with clearing my lungs and as my physiotherapist said, "You can breathe!"

I stay active looking after my 96 year old father, he is marvellous for his age, roles reversed, he is an absolute joker and great story teller!

Stay safe and well. GD53

[jackdup in reply to GD53]

Can you explain the diaphragmatic breathing techniques for those who have not been to PR. Thank you

[GD53 in reply to jackdup]

Hello. Firstly like to say that my visit to physiotherapist really helped me to control my breathing and clear my lungs. I recommend that gp/nurse practitioner refers all people who struggle for PR. Diaphragmatic breathing is as it says, breathe in through nose into your diaphragm, feels like your stomach is expanding, then out once again through your nose.

My physio gave me a routine of breathing with long huffs after which releases sputum.

I do this twice a day. When I have infection, I use a Aerobika which is a little easier.

My physio said, " You can breathe" this is in my head when I feel I'm struggling.

Hope this helps, probably bored you into submission!!

Best wishes. x

[jackdup in reply to GD53]

No not boring at all and appreciate you explaining it, one can never have too much knowledge.

Thank you for taking the time to explain.

[teddyd in reply to GD53]

Thank you. I had my first physio visit a few months ago. It was very helpful. Gave me a lot of helpful advice all the clearing info you were given. Told me I can phone him or leave a message if I have any questions or need anything. Gave me the local contact to get masks for my nebuliser . I usually have to go to the hospital that gave me the nebuliser which is a distance away. Also said if the breathing exercises dont work he would get me a flutter thing ( dont know it real name) I was very impressed with the Nhs physiotherapist and only waited about 2 months after the Gp referral.

[GD53 in reply to teddyd]

Morning. Pleased you found your PR visit helpful. The advice I got like yourself has been invaluable to me.The breathing technique is a little hard to master but with practice it becomes second nature.

AerobiKa is the flutter machine. It helps me when I feel my lungs are becoming congested, as it is more gentle and easier to use.

I found my physio friendly and like yourself can ring for advice at any time.

Best wishes x

[Ergendl in reply to jackdup]

When you breathe in, your stomach should go out, not your shoulders up. The easiest way to find the muscles is to lie down with a heavy book on your belly. Then try to raise it and lower it only by breathing in and out.

[jackdup in reply to Ergendl]

thank you

[Tykelady]

I was diagnosed 20 years ago and yes, the disease has progressed but only become limiting in the last three years and as I am now 80 I suppose I can expect things to be a bit more difficult in all areas.

[GD53 in reply to Tykelady]

Thanks for your reply. Hope you stay well and you're doing fine for your age.I suffer with osteoarthritis in most joints but function daily with my painkillers.

I try to stay active but copd makes me tired and sometimes I just want to rest, but that's your bodies way of telling you to slow down.

Look after yourself and stay warm indoors, this weather is nasty for all with chest complaints . Best wishes. GD53

[CDPO16]

Hi and welcome. Your breathing may be worse when you first waken as we all shallow breathe while asleep. Apart from using any prescribed inhalers first, deep breathing exercises may help before you get out of bed. I was diagnosed in 2014 and never know how I'm going to be day to day. I hope you will feel some benefit from joining our friendly forum.

[GD53 in reply to CDPO16]

Thanks for reply. I really do sleep soundly and what you say makes sense.Will try breathing and releiver before I get up and hopefully this will make a difference.

I can manage my breathing throughout the day but waking up still scares me.

As my physiotherapist said to me, you can breathe and this is always in my head.

It's good to know that someone out there also has this problem.

Stay safe and well.

[tomhatha]

I use singing every day for 2 hours it improves breathing almost to the point of thinking it's gone although it hasn't remember to keep the end of song NOTE going for as long as you can. it works for me no problem and I've had it about 15 years good luck

[GD53]

Thanks for your comments. This something I have not tried. I will definitely give it a go as long as no-one in earshot!!

Best wishes and stay well.

[Karenanne61]

Hi and welcome to this funny, friendly and informative forum. Ergendl has given some excellent advice. I too went to pulmonary rehab. I now do yoga, pilates and seated zumba. These classes have made s huge difference, not only physically but emotionally too. I lost a whole group of friends but classes have provided a new socal life. I'm under Harefield transplant clinic and their palliative team have, so far, helped me enormously with medication. E.g. codeine linctus to manage the cough a bit and oxynorm to help with the breathing. (Plus the usual inhalers, antibiotics etc.) This forum helps too.

[GD53 in reply to Karenanne61]

Thanks for your reply. So pleased that you're staying active and socialising, making new friends. I'm lucky because I have some very supportive friends who understand my illness and include me even though they know I will have to say, NO to certain gatherings.

My main activity is looking after my 96 year old dad. He's quite frail now but keeps plodding on, marvellous really!

Just hearing other people's experiences and their coping strategies is really helpful, knowing I'm not alone is a comfort too. x

[Karenanne61 in reply to GD53]

It must be hard looking after your Dad and yourself. It's so good to have supportive friends.

[GD53 in reply to Karenanne61]

You're right, at times I'm exhausted but I'm so very lucky having dad here with us. Also my family are there if I need them. Take care and please stay in touch.

[ghousrider]

good morning i had copd relly rough on a morning now i bought a recyliner bed double from dreamland best thing i bought i mainly sitt up to go to sleep but started to try little execises has your doctor sent you to rehab also i started my local gym to light duties i do i pay for that my peak flow on mornning is 150 after i go on ebuliser & excerises it goes up to 250 but i keep the execises up through the day i also have a tracky in my kneck to just work on your breathing , i am 59 years old ghoust rider

[GD53]

Wow. What a response to my question! Thankyou to all. Will read, digest and reply to all later. Just up and getting 🙄 sorted, you know what it's like. xx