COPD – Is your cup half full or half empty?

Is your cup half empty or half full? Probably the reason why my nickname in my younger years was smiler was because I was always the optimist. Looking on the brighter side of life with a cup that was at all times half full. To some a demented loony at times. That optimism has carried me well through life to what is now my twilight years. But I still have a cup that is half full, never empty. Nor half empty.

Being at stage 4 of emphysema many have remarked on how I seem to carry on regardless. Always chirpy. Very rarely sad. How do I manage to pack so much into my life. Belong to so many organizations. Sit on many committees, and advise on many patient groups. Some have questioned if I am really as ill as I should be at my stage of emphysema. Sadly I am. But will not let my illness dictate my life.

A month ago the worse exacerbation I have had for at least four years knocked me for six. In a matter of hours I went from feeling fine to hardly able to breathe. Realizing I had probably contracted a pneumonia I quickly put myself onto my emergency medication. Then using my oximeter checked my blood oxygen levels which I found to be very low and put myself on 24/7 oxygen. If I had not have had oxygen I would have had no choice but go to hospital. I had everything that would be used in hospital and treated myself at home. The only proviso was if I was to find breathing even harder that I may then need to go to hospital. After three days I was able to cut oxygen intake as I recovered.

Just a few days from recovering I had a two-day appointment in London with an overnight stay, and, being one that I had to make if possible decided to still make the journey. This was not an easy task even though my planning was good. During the journey I at one time got very breathless and asked myself if I had pushed myself too far and questioned my madness. There were to be two more occasions of extreme breathlessness lasting a few minutes when I wondered if I had done the right thing by making the trip. The thought occurred to me during one period of breathlessness in the hotel lobby that today could easily by my last as I was with little doubt putting a strain on my body. Even so to me that was a better option than the alternative, to give in to my illness and sit in a chair. The worse part of my central London visit was the pollution. Raw and nasty. I could taste it and my lungs screamed. There was no doubt to me this was making me more breathless than usual.

On my return home as I left London my lungs seemed to breathe a huge sigh of relief as fresh air entered my train carriage. The fresher pollution free air seemed to encourage a renewed strength. The experience, the struggle, had seemed to make me stronger. My cup was not now only half full. It was filling up. I did though take a week of doing little to have a complete rest on my return to Wales to get back to full fitness. As far as we of course can be fit.

Many ask. Do I get depressed. The answer is not often but sometimes. Not as to ‘why me’. After all many carry a burden, an illness we have to overcome. For some it might be fibromyalgia, others a cancer, still others a crippling bone disease, or Parkinson. I even admit to wondering during the blackest moments ‘is it worth carrying on’. Then think of my family, The wonderful smiling faces of my grandchildren, my wife, and realize it is. Life is wonderful. Full of surprises. Whatever your struggles there is much to enjoy.

If you are unable to go outside your home much a computer is great to keep in touch with the world, and of course family. With today s technology it is quite easy to overcome problems. Not that long ago there was no portable oxygen. No mobility scooters. Or Internet. Mobile phones did not exist. It was mentioned to me by a guy I was talking to, on him noticing my cannula, that his grandfather died of emphysema. After he had been tied to his bed for 8 long years. Unable to even go out due to a large oxygen cylinder next to his bed. Think how much he missed out on not having portable oxygen. Now like me he would have been able to get out with portable oxygen and visit anywhere he chose. Think how it might have extended his life.

Like many of you I cannot go far in winter. Making the internet a wonderful tool. At one time the encyclopedia Britannica cost a king’s ransom to buy. Now for free we can find out anything we want within a minute using Google. Have you even watched a film and typed into Google the name of the film and asked where it was made – what the locations were? How wonderful is that. I like many have problems with mobility due to breathlessness. So I use a mobility scooter. With a hoist to get it in and out the car. Not that long ago it would have been Lynne pushing me in a hard to push wheelchair, or not going out at all. We can also use the internet to keep in touch with family. Or to use for hobbies. Mine I use for all my photography including developing my pictures. And like now, for my writing. Another advantage of today’s technology as mentioned is the mobile phone. I always make sure I carry mine with me. Then if I break down in my car or on my scooter can telephone for help in an instance. A lot different from when I was young and breaking down could and once did mean a long walk to a public telephone box to call for help.

We might be ill. But do have very much to be thankful. And grateful for. Today I am dedicating my ramble to ‘Gratitude’.

Till I write again. Remember a smile is worth a million words. To keep that cup half full. But most of all. Breathe Easy.

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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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