An active life despite having copd and using oxygen thanks to the NHS.

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Today it was brought to my attention that I have used oxygen for mobility for over two years. The years seem to pass so fast as we get older. Almost like being on a magic roundabout that speeds up for every year we live. The truth is though without our British National Health Service. For all it’s faults. I would most likely be dead.

The NHS has provided drugs to enable me to lead as normal a life as possible. And oxygen to allow me to go about my normal business. Without which quite simply I would not lead any kind of life. It is because of the NHS that I can attend meeting on our health board, help the British Lung Foundation with publicity. To do a multitude of tasks I would otherwise not be able to do. At present I am also looking forward to getting involved in research from a patients point of view as part of NHS studies. Quite simply I don’t want to do nothing with my life. I want to as long as possible put back into the system.

By doing volunteer work and being involved in board meetings and other activities I keep my brain active, myself to a degree active also even though I use red most times. When I started to use oxygen I was surprised by the response of most people. I found I was accepted with a cannula by most almost without question. As if wearing one is a normal part of life. It is for me of course but it appeared most did not even notice the cannula. If asked I explain I have emphysema. And that I have low altitude sickness. If asked by children I point to the cannula and explain it is my mustache. Both always raise a smile.

I would be excused for assuming that as far as a professional life that had passed due to being ‘on oxygen’. And this is where I was even more pleased and amazed. I have been invited to meet celebrities, interviewed on television and radio. Am on a health board, been accepted to join research, help run a breathe easy group along with other activities. All while wearing a cannula. The fact that I use oxygen for mobility. And sometimes even ride into a boardroom on red, does not in any way affect what I do. Isn’t that wonderful. I lead a full life. With oxygen for mobility. And it does not effect me professionally or otherwise. It could be said I consider myself to be an ambassador for those of us that use 02. Showing that to wear a cannula is acceptable and people in all walks of life will treat you with respect using oxygen or not.

But back to the purpose of today’s blog. Without the NHS not a bit of what I do would be possible. I simply would be dead, or too ill to do anything but sit in my home. And possibly lie in my bed. This Tory government here in the UK is trying to kill the NHS by the backdoor. You only have to ask concerned staff on the front-line who have seen what is happening. Do not let this happen. You must make sure everyone that is concerned is aware of what the future may hold should we lose this essential service to life and death in our country. I am not normally this political. But in the case of the NHS feel I have to make a stand. Support your NHS. Protest against cuts. And show any government, of any persuasion, the door should they want to damage our NHS service.

Some have noticed I have not blogged so much this last year. Please be assured it is not because of illness but because my days have been so very filled with the work I do, while in between I have been out during the summer months enjoying my other passion. Photography. I have also put a page together to show some of my photography. This is still in the making although if you would like to view it please visit my site by clicking this link.

Till my next blog remember there is always someone worse off than you and that a smile is contagious. Give a stranger a smile today and watch how many you get back in return. And most of all. Breathe Easy :)

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Newly diagnosed copd, the stages, and do’s and don’t.

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My one regret is that even in this day and age not enough information is given to newly diagnosed COPD patients. That despite constant campaigning to doctors in particular to guide patents to somewhere they can get full informed information on their illness this is not happening. Made all the more obvious by the average two emails a week I receive via this blog from those recently diagnosed. Left frightened for their life. In some case believing that now is the time to make those last arrangements.

If you are recently diagnosed welcome to my blog. It is here you will learn about copd as it is. From me, a patient that has suffered from copd since 1987. As it is now 2014 I have done a lot of living since. And there is nothing different from my emphysema than anyone else’s. First recognise there are four stages of copd. In some countries it is called gold standard. But I will make it simple.

Most times a person learns they have copd when visiting their doctor because of shortness of breath on walking, bending perhaps. Maybe dressing. Or maybe because you had repeated infections of chronic bronchitis or some other symptom. Maybe as a smoker you coughed a bit. Passing it off as smokers cough. The doctor or nurse diagnosed you with copd. But were given no information on copd. Not even that copd is slowly progressive. You returned home, fearful about what this diagnosis was and learned a little, perhaps ill-informed information from others. Maybe you trawled the internet where thankfully you found my blog, but not before coming across one of the less informed internet sites that confirmed your worse fears. That you have a fatal killer illness. There is nothing like wrong information to get the imagination going. How long have I got. Weeks, months, years. Many ask. So far I have managed 27 years post diognosis. Pretty impressive huh. What’s more the reaper is not getting his grubby little fingers me yet. Ok back to the stages.

I am not going into the technical details of the all important FEV1 and other lung function details in today’s blog. However your diagnosis will mean you have either mild, moderate, severe, or very severe copd. In most, but not all, you will first be diagnosed with the mild or moderate stage. I am not going to lie to you. You will get very slowly worse. But here is the most important part. How fast you go downhill is up to you. And if you are a woman. It is even more important to do the right thing. Because woman’s lungs are smaller than a man. Sorry it is a biological fact. Being smaller means changes could affect the ladies among us far faster than a man. Let me give you two cases. One takes the correct action. The other does not. These are fictional cases and non of the characters are real.

Jenny is a 52-year-old home-maker. Smokes. Gets little exercise. And has just learned she has copd. Jenny has been diagnosed at the moderate stage after finding she is getting out of breath easier than usual. But decides she cannot stop smoking, despite the cough that is causing more scarring on already damaged lungs. She exercises less, as Jenny reasons it is not good getting out of breath. So chooses the easy option. Watch plenty of good films or soaps on the TV, chilling out with friends watching daytime television or sitting at the kitchen table. Sadly for Jenny. Within five years Jenny reaches the very severe stage. Is given oxygen to keep her vital organs healthy. But continues to smoke and within a few more years. Is dead.

Pamela is a 54-year-old one packet a day smoker, a home-maker having retired from work due to health problems that ended in her being diagnosed with copd. Like Jenny she was told little about copd but chose to research the subject and found that by ceasing to smoke and taking up a healthy lifestyle with some exercise she could slow the illness down. Pam stopped smoking immediately. And took up walking, with some swimming to keep fit. Pam knowing she had to be active also took up several hobbies to keep her occupied while making new friends She enrolled in the local pulmonary rehabilitation class to learn what she could about her illness, and how to keep the worse from coming for many years. Pam finds it hard sometimes to exercise and gets out of breath more easily now she is in the severe stage, ten years later. But realises getting out of breath is not dangerous in itself. And that by doing something, she will extend her life by many years. As yet Pam is not needing oxygen.

After I was diagnosed I led a very active life. This became harder until 6 years ago I was forced to retire as my copd reached the very severe stage and doing my work became impossible. Now even though I use oxygen when mobile. And a scooter to get around. I am active and have many hobbies and interests. Yes I like to pick up the remote and watch a good film. I enjoy a can of lager. In the evening. By day I have other interests.

Remember. If you are recently diagnosed. Keep active. Don’t smoke. Everything else in moderation. And you will live very many more years. If you wish to email me please do so through the contact me tag above. Meanwhile I wish you all a really good breathe easy day. And remember. Although we have our good days, and bad. There is always someone worse than you. Keep a smile. And a laugh. It’s good for the soul…

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A successful day despite very severe copd.

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As someone who suffers very severe copd I am confined to using a mobility scooter (cart) when out and about. And to using 4lpm of oxygen when doing anything but sitting watching television, or such as now, typing on my computer. My hobby, photography is managed despite many difficulties. Even if the act of setting up equipment in the studio is more than challenging. It is little wonder I am always thankful I use a scooter that carries two camera’s, various lenses and other items, and I. Else outdoor shoots would be all but impossible.

Having seen some of my photographic work my brother volunteered me when asked by a friend to stand in as a photographer at the brides wedding. I gave the future bride and groom every reason I could think of not to have me as their wedding photographer. I am not a professional wedding photographer I said. A keen amateur that enjoys portrait and landscape work, I insisted. However undaunted and with blind faith in me I was still wanted for the shoot. A professional wedding photographer would cost a large sum of money. Money the bride and groom could not afford. Equally they did not want a family member to take on the job, else he would not enjoy the wedding. I agreed providing my expenses were covered after which Lynne and I was put on the guest list. While thinking to myself. What have I done.

A concern I had was I wear a nose cannula as I use oxygen at all times when on my feet. I was probably the first person to be asked to do a wedding shoot that wears a nose hose. Could I cope was my main question. I cannot walk more than a couple of yards without feeling out of breath. After much thought I decided I was not going to let the couple down. That planning was the key. That I had to succeed.

Lynne, my wife and carer, met up with the bride and groom at the reception venue a month before the big day. We had a brilliant evening with good food, and found that despite the nose hose, they were as keen as ever for me to do the shoot. The wedding day arrived almost in a flash. Pardon the pun.

Our first port of call was the reception venue where many guests, and most importantly, the bride and groom were staying. Thankfully we could park our car at the entrance and were soon enjoying a cool mineral drink while introducing ourselves to the many guests. This we found to be a perfect venue to break the ice with the many people we had not met before, while taking images of those around. Having made several new friends we left to arrive at the wedding venue in good time.

We had already visited the wedding venue and noted I could park by the entrance in a disabled bay. Once inside I could be seated while taking images of the guests arriving and mingling in reception. Lynne, my wife, carer and photographers assistant, meanwhile was outside ready to take images of the bride arriving. Lynne and I make a good team, she is a woman of all trades.

I spoke with the registrar and was assured I could use flash, and to my delight was allowed to have the run of the wedding room for the shoot. After which the registrar escorted me in the lift to the where the ceremony was taking place. At this point Lynne became indispensable as without her the shoot would have been almost impossible. Most shots were taken at a good vantage point while seated. However, I needed to shift position in the room at times. Lynne carried the chair and oxygen, placing the chair so I could sit. Even so I was becoming a little breathless. We did though make very many excellent shots.

After the couple were pronounced man and wife it was soon time to return to the wedding reception venue. At this point I was cramping bad, in pain, and was struggling. It had become obvious that despite using oxygen my blood oxygen saturation level had dropped too low. My saviour at this point was a half hour drive to reception, followed by a short break. I sat in the car after turning up my flow to 6lpm for a few minutes to allow levels to rise before driving off to the next venue. I was feeling maybe I had bitten off more than I could safely chew. But was committed. Lynne did not know camera settings, and I could not let the bride and groom down. It was carry on soldier.

The weather outside was not good, and group shots had to be taken. Thankfully we spotted a beautiful spot large enough for group shots. At this point I was feeling thankful for bad weather as this was a scene that would make my life easier. A quick chat with the owner of the venue and staff quickly arranged the area for a photo call. I then asked the bride and groom to arrange their guests for the individual shots. Inviting guests down as wanted after arranging chairs for the bride and groom to sit in front of the various groups there would be. Lynne was handed the camera with the correct lens and settings. While I sat and directed just out of shot. I am pleased to say we achieved very good quality images, making us both proud of our days work. We then moved to the dining area for the meal. Not before as requested we had our photo taken with one of the guests taking the shot with our camera, of us with the bride and groom.

Us at the wedding

Speeches were made, the cake cut with more images taken to end the day. We were booked into a lovely hotel only a mile away and it was with relief we drove the short distance to our hotel having achieved the almost impossible, even if the day had ended with every single part of my body aching as though I had run a marathon and a half. After we arrived at our hotel it was to the bar where quickly a couple of beers were drunk to help relax the aching.

I was told afterwards we had made many friends and praised for being fun, witty, and unobtrusive. This added to our sense of achievement. I say our because make no mistake. Without Lynne this would have been impossible.

The printed photographs were excellent quality with everyone delighted.. Lynne and I could congratulate ourselves on a successful day. Would I do it again? No, but I learned a lot and it was an experience I will never forget, and an achievement. I proved even with the most severe stage of copd, with planning and an assistant, it could be done. With very little movement. Most shots from a chair. Parking next to venues. Lifts, and a good assistant made this possible.

It is good to move. Maybe not as much as I did at this wedding. But am sure it did me a lot more good than sitting with a remote control in front of the television. Remember, whatever our problems, we must live a life. We must take a challenge and sometimes push ourselves.

Till my next blog remember life is for living whatever our condition. Keep that smile, and most of all, breathe easy.

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