April 3, 2014

Barb Prime

MY LUNGS SAY ‘NO’ BUT KEEP SMILING

A typical tale of a smoker who developed emphysema and then COPD, Barb’s story is one of slow decline until oxygen has become part of her daily life.  This is my story. My name is Barb Prime and I am 61 years old, diagnosed with emphysema in 1991. Also chronic bronchitis years before that and I also have asthma.Firstly, I will always be thankful for doctors, specialists, hospitals, researchers and medications because I feel sure I would not be as good as I am now without them. I believe a good mental attitude and exercise has been a great help to me.

I feel regret that I ever had that first cigarette when I was 12 years-old and continued to smoke for 43 years.  The doctor, who first told me to smoke because it was good for the nerves better than medication for me, died of lung cancer. He also did not know the dangers of smoking back then and I do not blame him at all even though I forced myself to smoke because he said it was good for me. If only we knew then it was so bad.

I live with my husband who also has the beginnings of emphysema. I now have to ask him for help and I find that hard to do being such an independent person. At first I was in denial for several years until I was hospitalised a few times and then thought I had best find out more on the subject. I went to the internet and found a lady who directed me to a support group only five minutes away from me and I never knew it. So I went along and I read a lot and asked a lot and learnt a lot and now I run the Northern Windbags Support Group, with help from two others. It has been 12 years since I have been the President of the group and I am co-owner and moderator of the Lungaroos Internet Support Group for people with lung disease and their carers.

I was told I needed a lung transplant a few years ago but this will not happen. I still walk at least a half kilometre a day until I build up again to a kilometre and do a half-hour each day on the treadmill. I do go up and down. I keep active but am finding it a lot harder and slower nowadays and need more help.

For my condition now – My life has changed to not knowing how I will feel each day and I have to plan the day to how I feel and make plans on the day, never knowing if I will be well in making arrangements in advance but just say I intend to go. I have learnt that my mind says ‘yes’ I can do something and my lungs say ‘no’ you can’t and I try to pace myself but usually end up huffing and puffing trying to gasp for air. I am still learning to pace myself, a hard thing to do. I have ups and downs, good days and bad days. How very scary it is when you just can’t get enough air to breathe.

I am always tired, everything seems an effort, getting dressed, undressed, showering, etc. I am on oxygen for exertion, so do not need it when sleeping or sitting still. I try to ignore that I have anything wrong but the continued reminder is always there – HUFF PUFF, HUFF PUFF! I often have people say how well I look. Ha! If they only knew how I feel, sometimes. I do get annoyed at it all. I do have days of feeling bad about myself but I don’t allow myself to dwell on it too long.

Mostly I have a good attitude and smile a lot because I am thankful to wake up and am still breathing and I love life even with severe emphysema, chronic bronchitis and asthma. I am much more aware and careful of going anywhere there may be ‘flu or colds within reason and also try to stay out of the cold night air. The weather affects me when it is too cold or too humid or too hot.

I cannot use public transport because of the odours of perfumes and fumes etc.  Shopping is sometimes a nightmare when people wear perfumes. To try to get away from them without making them feel bad because I have problems breathing near them. Driving in my car can also make me feel ill with breathing problems caused by the fumes of vehicles.

Socially a night out or night time activity is rare as by the end of the day I am too tired. I live with the hope that one day there will be better medications with less side effects or even a cure if not for me, then for others. Adjusting is always hard, not being able to do what you used to, not so long ago, giving up activities and fun things not being able to work any more and finances hard to adapt to. But I am learning to not worry about what I cannot do but love everything I can do and be thankful for that.

The loss of old friends when you do not do what you used to with them! Complications are my enemy, the viruses, the infections; sometimes it can be quite debilitating. Some people’s attitude to emphysema I find unbelievable when they say we who have emphysema deserve it because we were smokers. No one deserves to suffer so much and we were not all smokers.

How do I feel having COPD? I don’t like it one bit but life goes on and I appreciate the time I have. I am still smiling. Right now, ‘how wonderful it is to breathe’!!!! Have a good day and keep smiling.

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