getting smart with COPD.

I know the best thing I can do to help myself is to keep my body moving. But that comes with problems as all you at stage 4 know. Up on our feet and our blood saturation levels fall, although oxygen should protect us. But even with oxygen we can and do become breathless. We never know how far or how much we have moved with only our own instinct to guide us. But are aware that to move that bit outside our comfort zone, there could be rewards that make our efforts more than worthwhile.

Like many my problem is I know I have to keep my body moving even though I get breathless. I know to do nothing and sit in my comfort zone that my lungs will deteriorate much more quickly, which in turn will leave me much more open to more serious exacerbation and illness. But am never sure how far or how much I have moved, even to did I do better today than yesterday. But move we must as that maintains a certain level of fitness even if at times we do not appreciate it. Our legs, chest, breathing muscles, and heart all benefit making moving a must. So am delighted I have now found a way to measure how much I have moved with the benefits shown. The results, to me, are amazing.

I was browsing the internet and looked at a smart watch. A fitbit HR although I am certain almost any smart watch, as long as it also records heart rate 24/7, will do fine. What attracted me to this product was I am aware my heart has suffered through my copd and inability to exercise as much as I would like to. And I wanted to see what my heart was doing. The resting heart rate. The highs. The lows. Sure knowing how many steps I have made and how far I stepped in total that day was interesting. As was calories used, and consumed if I could be bothered to enter what I had eaten. This watch also told me how long I had slept, woken during the night, or just been plain restless. I now know I only sleep about six hours a night. How many floors I have climbed will be recorded but I don’t climb stairs. The graph I am most interested in though is my heart rate. I can read from this an amazing amount of information including how long I was in the cardio zone or fat burning zone, the rest being a sort of resting normal zone. Technology is simply amazing.

The advice is to walk 10,000 steps a day. Ignore as after all if you have severe copd you are not likely to do that. Some days I would do less than a 1,000 steps, and most days it would be little more than a thousand. But at least I have an idea how much I am moving. I started to set little targets to move a little more by increasing my daily steps. Little and often but all to the good. If you get on your feet and do as little as 30 steps ten times you have 300. There are trips to the toilet. A short trot through the house. A walk to the car. Making a drink in the kitchen. Into a shop or the restaurant. You will be amazed by doing normal daily activities how many steps we make. But how do I know this has done me good?

It’s all in the heart rate. As the heart gets stronger. And it will if you step a little more. Breathless or not. When I first wore my smart watch at the beginning of July my top heart rate was 129 beats a minute. Now it is 108 tops. I have also noticed my sleeping heart rate has dropped from the 70’s to the mid 60’s. And that my resting heart rate has fallen to 80bpm. Yes that might sound a bit high but with copd, on oxygen, breathlessness and all we endure. Not that bad. I have a problems with calories. Am still too heavy and would love to lose some weight but have to admit my options are limited. I will exercise as I can. Do my best. Keep what is left of my lungs as strong as I am able, and attempt to keep heart fit. But am now a full fan of the smart watch.

I now always keep my mobile oxygen concentrator on a trolley when out and about. It is far easier and less tiring than to carry 8 pounds or so on my shoulder or in my hand. I have slowed down a bit more to pace better. Meaning I get a little less breathless. Again it is all in the pacing. But am equally sure that now I am doing a little more that too is helping me to also be a little less breathless.

Hope you have enjoyed the read. And if you have or get a smart watch. Let me know and we can compare notes. Till my next blog keep smiling. But most of all. Breathe Easy..

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COPD – Say goodbye to those that are mean..

I suffer very severe COPD. It has taken many years to reach stage 4. Sadly many of my friends have family, or friends, hostile to their illness. Often to the point of rudeness telling the sufferer they are making it up. They may say you are not really ill. You are just plain lazy. Or imply you are putting it on to claim disability. I am no exception. My youngest brother also is in this category.

I sometimes think there are those in the world that would like nothing more than for us to moan, be rude, sour, negative, show our displeasure in life. That this would make them happy as it would be our proof to them we are in fact ill, even to wondering if this would give them some kind of perverse pleasure to know we are suffering, that this would make them feel good. I always look on the positive side. I smile despite the pain I maybe in. Am pleasant. Rarely complain. I get on with living. But this seems to fool many people. After all how can I be pleasant if I am ill, how can I smile if in pain. I look good when sitting and not breathless in pictures because as you with copd know, our lungs cannot be seen from the outside. We have an invisible illness.

To help those that do not know or understand what copd is I am writing this today to try to show what a day in my life is like.

I woke this morning and wondered what the day would bring. Will it be a good, or bad breathing day. As I lay in bed I feel fine. I can breathe. But know the first half hour of rising is the worse. Soon as I rise from bed. Before I get my medication, my puffers, I will find it very hard, even though I am using 4 liters a minute of oxygen. Oxygen I have to use at all times I am mobile, or first thing in the morning. But that is life. I have no choice. The hardest part. The first few steps to my stair lift to take me downstairs, and my day, has begun.

Sometimes I close my mind to breathlessness at this time of the morning. I know I have to get through that first half hour, which often starts with extreme breathlessness, after which I will start to breathe easier. I simply have no choice. As long as this is not a day when I am going to end up with yet another pneumonia or infection. Called an exacerbation to us it will be a result. What helps is a mug of tea to make me feel more human.

All us with severe and above copd are in danger of becoming very sick and being rushed off to hospital at a moment notice. We have to take many precautions to limit our risk, and take steps to make things easier and safer. Our illness is progressive. That means our copd will NEVER get better. Lungs do not heal. There is no cure. And as this is progressive. Slowly we will find it harder as our medication is increased and oxygen use with it.

COPD is life changing. We cannot climb stairs and only do so if there really is no other choice. Many of us get breathless doing small things. Like dressing or showering. I am not looking for sympathy, But understanding that for some of us, it is a way of life thrust upon us. Most of us have a lift at home or take one when out. We cannot walk around like most people. And don’t get me started on slopes and hills.

Many like me use a scooter to get around as the effort is too hard to do otherwise. I have to take equipment with me everywhere I go to supply oxygen. And make sure there is a back up supply in case the main one quits working. We have to plan everywhere we go. For me that means Google earth walking an area I might be visiting. And telephone calls to make sure where we are going is disabled friendly. If you want to know what copd might be like. Take a straw, put it between your lips. Pinch your nose so you cannot breathe in or out your nose. And just breathe in through your straw while doing light exercise. Easy is it?

We have a progressive illness. Many like me try to take a positive attitude to it. Sadly there are those in society that not only do not understand what COPD does to us. But refuse to want to know. Or make allowances for the family member or friend. Like my youngest brother, now no longer a part of my life.

My appeal is if you are a family member or friend to someone with COPD please understand we do not choose to live our life with this illness. We need your support, your understanding, not your sympathy. We can still do a lot. But we do need more time to do it.

If you have copd, and a family member or friend refuses to acknowledge your illness, and that person brings you to tears. It maybe time to let that person go their own way. Because you deserve better. Never accept meanness from anyone. Not family, not friends.

As a last note to all you good friends out there. And I have many. That support and understands our difficulties. I salute you as you make our lives that much better. You make our lives that much easier.

Maybe it is time for me to forget those that like to be joyless. To chill out with dark side the moon.

Till I next write. Be positive. Keep that smile. And most of all, Breathe easy.

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Banging my drum. Education and copd.

For us with copd it is easy to get into the habit of doing little. Easy to become depressed and withdraw from life in general. For some it can be hard to know what to do when in the severe stages of copd. When we cannot walk much, and have to carry an 8 pound pack or more of equipment to supply our oxygen needs with us. Many of us don’t do steps if possible. Hills are a no go. In the later stages a lot of planning goes into any foray outdoors. It takes me a couple of days when planning a holiday. I even ‘google earth’ walk the area I am going to visit. But with planning we can still have a great life, make a difference, and have fun.

Like many I retired from work due to copd. But doing nothing was not an option. I joined copd groups to meet others. And started to write this blog to exercise my mind, to keep my sanity while talking about my journey with copd. Little did I realise how much this blog would help others, or how large it would become. Talking about life with copd and my hopes for moving forward in the treatment for our illness followed as I became involved in publicity with the British Lung Foundation. Appearances on television, while radio and newspaper interviews followed including meeting some celebs to talk about copd. I became involved in copd social networking. But still wanted to do more. Keeping my mind and body moving is important.

I joined research groups and committees involved in copd, advising as a patient representative. My often complaint has been that when I was diagnosed with copd many years ago I was told nothing about it. I did not know copd was progressive. No advice was offered. When first diagnosed with very mild copd there was no internet. I could not Google copd. Google today and you may read articles informing you your life is going to end soon. Don’t worry it is not. After all if that was true I would not be here 28 years later to write this. We do have to adapt. Although that is another story. No, today I want to tell you about a major achievement I have been part of for which I am both excited and proud.

Our small country, Wales, UK is a devolved nation from the main UK government. Our Welsh government approved a respiratory plan a year ago. And as I was in it from the start was invited as a patient representative to sit in, and offer advice, on the formation of our local health board respiratory plan. And what amazing achievements there are going forward. The main one is knowing that shortly my one aim is about to come into place. Education. Every new patient will be given full knowledge of self-help groups, be informed all about copd. How to slow the illness. How to treat exacerbation. During which in turn copd patients will learn they are not about to die. One to one point of contact support will be offered. I am so very excited with this new initiative. I have banged my drum for at least four years that it is not good enough to diagnose then leave the patient in the dark. I feel as though all my work this past few years has shown fruit. This plan is to be rolled out through the whole of Wales in the next few months.

Although this initiative is only for Wales it is hoped this plan will be used in other parts of the UK at a later time. Moving forward. That is the way to go. You can be sure of one thing. At least as long as I am able to move this body I will continue to use my knowledge of copd to move things forward. To progress and make things easier for future patients.

Ok this blog I have talked myself up a bit. I wanted to show what is possible if we move forward and embrace any opportunities out there. Life can be interesting and fun. For now. Keep that body moving, keep that smile, but most of all. Breathe easy.

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