copd, steroids, and bone health.

It was July 2010 when I wrote my first blog ‘Hello and welcome to all’. Today it is time to look back. Five years is a long time in the world of copd. Many diagnosed each year do not expect to survive five, let alone the 28 years I have. We have to accept we do have a progressive illness although very many of us live on for years with this condition. Most die with copd and not as a result of copd, so if you are new to this blog. Don’t worry. Read on. And please look back on past blogs.

We learn to manage – some through reading blogs written by sufferers such as myself. I have written about many subjects including how I learned to pace so I could breathe better. Learned the simple art of breathing. Many of us simply do not breathe right. Described how my condition deteriorated to having to use oxygen for mobility, while nearly killing myself while in denial.

Yet whatever I have suffered, I have remained an optimist. I have spent ‘bad weather days’ researching copd to see what scientists have done in their quest for anything that may help us. Seeking out small papers as well as large ones. It was a small paper that offered a valuable insight into vitamin D five years ago that led to me deciding to start to take a 5,000 iu capsule of D a day.

It is sometimes hard to quantify what help a product gives. How many exacerbation has taking a D supplement prevented – if any? Would my health have been worse had I not been taking a supplement? These are questions that can never be answered . Even if my inner gut feeling says I would have been much worse if I had not chosen the route I am on now.

I know D3 is produced by the skin when out in bright sunshine, and that the older you are, the harder it is for the body to produce it. I also know that in the UK where I live, the sun is only strong enough for seven months the year to be good for us. Yet often bad weather lasting for days will prevent exposure to strong sunlight. I also know not having enough D serum in the blood is bad for the health. I have often wondered at the high death rates of relatively young people in Scotland, UK, compared to the South of England. There is much less strong sunshine in the far north. Could it be low D levels cause early deaths in our far northern parts? It is known D is good in many ways, that it could be considered dangerous to have very low levels in the blood.

I proved how essential vitamin D is for the bones. Rickets is returning in children in the northern hemisphere. A scourge that was once all but eliminated in the western world. The result of staying in on games machines, or the computer no doubt. Not out playing enough, maybe covered up too much with sun screen. Not enough D and your bones are not strong. And us adults as we grow older? The bones weaken. Become thinner, easier to break. More so if like me you often take steroids for your illness.

When I was in my 20’s I had another lung illness – sarcoidosis. So was prescribed strong steroids for a long period. Later in life after copd had been diagnosed and that progressed I was again prescribed steroids at times. Today I take a maintenance 10mg daily. I simply cannot do without them as without my breathing is so much worse. Quality of life is sometimes more important than worrying too much about later effects We have to breathe – right?

I have taken 5,000 iu of vitamin D daily for five years. Several months ago my doctor asked the hospital to call me in for a bone scan. He wanted to see any damage that may have been wreaked by my prednisolone use. Steroids are known to cause osteoporosis and thinning of the spine. A common side effect which can leave sufferers with fractured hips and damaged spines. During my consultation I informed him I have taken D3 for many years. As I had kept that quiet all them years he was amazed and instantly saw me as a kind of test subject. Far from getting scoffed at or told off he said that decision might have saved me from bone and spinal damage to an extent. And was more than interested to see my results when they returned.

I have to admit to being a little nervous as the results were put onto the computer screen for me to see. There was no need. My bones were on the upper band of normal, as is my spine. No damage has been suffered at all. Indeed not only are they strong, but stronger than normal. Despite a long history of taking steroids. Again my gut instinct was proved right. At the end of my results was the advice to keep taking vitamin D at the dose I take now.

You may like to Google vitamin D to find out more before you decide to embark on taking a supplement yourself. If you are low in the most important of vitamins it take a couple of months to get back to normal. A D supplement is not like taking an aspirin but the effects will become noticeable. You could even ask your doctor to have your blood tested for vitamin D levels.

If you do start to take a supplement, or have because of earlier article I have written on this subject I would love to hear from you to tell me your experience. You can contact me on the contact me tag at the top of this page. For now. Whatever you are doing, wherever you are, keep that smile and the world smiles with you, but most of all, breathe easy.

In the meantime maybe you would like to listen to one of my favorite artists. And songs.

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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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