Weather, a book, a cold, and Welsh Cakes.

There was so much I planned to do this winter. I had found lots of places to take my scooter red with Lynne and our dog Amy. Long tarmacked cycle paths to enjoy that would not be muddy from the winter rains. Trips to next door England to visit different indoor shopping centers were planned. Plans that seemed doomed as every time one trip was agreed on something happened to cancel it. Sometimes it was the weather just too bad for me to want to drive on the motorway. Yes there were plans a plenty. Sadly most never happened.

This Welsh winter has probably been the warmest I have known. But rain falling almost every day since October, often with high winds, left little scope to get out and about. But exercise remains a must, so has to be done from within the confines of my home. I have at times become a fidget. At times to the annoyance of Lynne. But move I must. And move I did. With only a month to go to Spring I hoped for an early spring, and to get outdoors more. Even Lynne is complaining of not getting out with me along her on red as she enjoys a walk. Alas weather charts now show snow is to arrive.

But I have been busy in my mind. One consideration is the future of this blog. I am aware that when I die this work dies with me. Or at least will when I am not paying for the web space anymore, and with the flick of a finger an unknown person deletes all you now read.. Even if I paid web space five years ahead. The end would come when time ran out. I am if nothing else practical.

But I have to consider if I am unlucky, and get a pneumonia, or something else that finally send me back to that other world, or wherever it is I came. What will happen to my blog. All 146 rants and 7 pages. It was suggested writing this blog in diary form as a kindle book would be good. At first I was not too keen. After all with near to 90,000 words or more to work on that is a challenge. My early blogs start in year 2010 and there is editing to be done. After much thought though it did seem too good an opportunity, or challenge, to miss so work has begun to rewrite, and publish Kindle. My legacy to this world when I have gone. So far about 10% has been completed. I aim to do at least one page a day, and to have this ready for publishing on Kindle by about November. So have to make sure I do not accidentally ‘dematerialize’ , as a friend said, before then. Do you think the book is a good idea? I would love to know.

For the first time for nearly a week I ventured out my door yesterday as I needed to get some products to make Welsh Cakes. Now if you have never tasted a Welsh Cake you are missing out on one of lives joys. Google Welsh Cakes and take a peek. And if you can, bake some and let me know what you think of them. I just know you will enjoy them. If you cannot find the recipe contact me and I will send it. I hold no responsibility for bulging waistline.

Yesterday’s foray was hard for me. Lot’s of breathlessness getting around the supermarket pushing a trolley, and often stopping to catch breath. The result of getting over the cold from hell. Let’s be fair. I am a man, and am entitled to the worse cold ever, aren’t I. Word of advice. A fully blown head cold, the one where you are sneezing all the time, and your nose runs ahead of you, is to us dangerous. The cold itself is not, but the secondary infections from it to the chest are. So how do I survive a bad one like this one that laid me low for a week. While for many it will lead to a few days in hospital.

Staying indoors in the warm is essential. As is plenty of rest and sleep if needed. At the first suspicion of that cold hitting your chest start to take antibiotics, and steroids to ease inflammation. Drink lots of fluids to keep hydrated. If you use oxygen keep an eye on your sats. And if needed use more oxygen. I don’t, but you might want to ask your oxygen nurse first. Then cross your fingers for the best. In most case you will be fine. But if at any time you start to find it hard to breathe then don’t delay going to hospital.

After the cold has gone, you have to move around more to get them lungs working again. You will find you are much more breathless than you were before that cold. Don’t let that worry you. You will improve.

Till I next write. Keep that smile. And most of all. Breathe Easy. But before I go. Why not. Lets have a cheerful tune. :)

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The past year, looking forward and useful links.

I have not updated this blog as much as I would like this last few months. So apologies to those that were asking if I was well. Happily I am good, busying myself and keeping as active as possible.

Last year was a good year. I have a small decline, but we have to remember this is a slow progressive illness. My oxygen flow has been upped a little. But am feeling good, and as long as I continue to look after myself, and do the right things, I should survive to see 2017 too. It was a joy to welcome in 2016 at a small gathering with friends. And to give a silent thanks that I had survived 2015. Even though I am very positive I respect that copd is a serious illness and each year, week, or day must not be taken for granted.

I have lots of plans for 2016. I do much volunteer work to keep busy. Some with the British Lung Foundation and Breathe Easy, some with Cancer Research, and sit on committees advising as a patient representative. I am proud to say I also work with a team helping to shape Welsh government action on Lung problems. As well as having a copd support group on Facebook.

The support group has close on 250 members from around the world. This is useful as if someone in the UK is up in the early hours of the morning and has a problem, or is worried about something, someone will be online and able to offer help, or just chat. The group is self-help where we can each get information, or just have someone to talk to. I post useful links for all to see, and offer helpful information as do other members – we are all able to contribute. Links to my blogs are posted as they are published on the group page.

As a copd sufferer or carer you are invited to join us. It is a closed group so you will need to click the button at the group page to ask to be a member. I will then approve you soon as I see your request. You can find the group, named ‘we strive to breathe easier’, by clicking here. Many readers of this page are members of this group.

I am pleased that since I retired through ill health I have managed to do much to not only help myself, but others too. Since starting this blog many years ago everything seemed to grow. It was never my intention to do anything other than write a small blog. That was not to be as I now find myself busier than when I was working. Hobbies like photography, blogs, committees, meetings and other volunteer work sure keep me busy.

It is a big thank you to the British NHS service that I am able to do much of what I do – as without their attention to my health, and my regular oxygen supply for mobility, I would be doing little. I do some work with the NHS as a patient representative. As someone with copd and being active in the copd community it is acknowledged I have more information and knowledge than many general practice doctors do as to what it is like to live with copd, and where difficulties arise. It is very useful to many medical services to have views from a patients perspective on any planned changes.

The past year has not been all good. As an overseer of a large copd group it is inevitable I have over the past few years made many firm friends. Sadly I lost some of my precious friends this past year. Of course even without illness due to the average age, us with copd tend to be middle age upwards, some would have been lost. Many have died of illness other than copd. Remember most will die with copd, not because of it.

I leave you with one astonishing titbit. The average age of those passing because of copd is 81 years. As long as you keep active, take your medication, and look after yourself you have as much a chance as anyone else of living to an old age. This year is my 29th anniversary since being diagnosed with copd. Proof to anyone recently diagnosed that it is possible to live very many years with this illness. I don’t intend to leave this mortal coil anytime soon either. The chances are by the time I die I will have lived more years with copd, than without it.

Till I next write again. Keep well, keep smiling, and most of all Breathe Easy.

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I feel like dancing as I can breathe.

COPD always has ups and downs. We fight, sometimes get kicked back, then return to fight again. This last month has been no different for me.

I was first prescribed oxygen in August 2012, and felt lucky that up to now I had not had to increase my flow from 4 lmp when mobile. Many at my stage use oxygen 24/7, and I was warned eventually I may need O2 24/7 too.

It should have been no surprise that after three years I found myself more out of breath when mobile, with lower blood oxygen saturation levels.

An oxygen assessment request arrived, saving me from requesting one. For this I was pleased as it meant I could discuss my recent problems and see how best to resolve them. There is as you know nothing worse than finding it is hard to breathe and getting out of breath far to easily. I feared I would now need O2 at least 16 hours a day, although if that is what I needed at least I would be able to breathe better. It was obvious my mobile inogen concentrator was not providing me with enough oxygen to keep my saturation levels safe and me breathing better. That maybe pulse oxygen was not now good enough either.

At the assessment I quickly learned that blood gases showed my resting saturation levels were 92%. A pass for when seated resting, or like now typing on my computer. But alarmingly the walk test showed my Saturation levels quickly fell to 85% using my inogen. The test was quickly halted and asked to sit as this was woefully low, and harmful. After a short rest, and with saturation levels back to normal, I restarted the walk test. This time with an oxygen bottle on full flow giving 6 lpm. Saturation levels this time were satisfactory. I felt better. Less breathless too.

I use most oxygen in my home. I don’t want to sit all day and move around often. Sometimes attempting those little jobs such as screwing something into a door, changing a light bulb, the normal type of things that need to be done in a home. Sometimes I wander from room to room, exercise of any kind is good for us with copd. After all my home is the safest environment to exercise in winter with temperature and humidity control for comfort. As I live in a large home I am not cramped or confined – very helpful when I cannot venture out into the great outdoors due to poor weather. But as I need oxygen mobile this means most oxygen use, even though it is not needed sitting or as now typing on this computer, is used at home. To overcome this problem and to make sure my blood oxygen saturation stay safe my flow was raised to 6 lpm full flow with a concentrator providing it. Hose from the concentrator covers every corner of the house. Meaning I have an oxygen supply wherever I am or whatever I am doing. I have to be careful not to trip on my hose, but it is amazingly good not to have to carry anything but only wear the nose hose to get my oxygen fix. I use compressed bottles for when out and about.

Wow what a difference it has made. I really do feel like dancing. ‘I can breathe’, was the first thoughts I had when I started on the raised lpm. Only us with severe or above copd know exactly what that means. To not feel like a fish out of water. At last I can breathe again. And not get to breathless when on my feet either.

The main problem was the concentrator is noisy. Luckily as our home is large there was a place to put it where it would not be heard in most other parts the house. My man cave. Although sitting typing I must admit to wondering if a pair of ear plugs might come in handy. But to breathe is worth the noise as I type.

Because I was having issues I have lost some of my fitness. So am starting on the road to getting back up there again. Which will not be easy as it is easy to lose, but hard to gain. Progress I feel is being made though. So next time I write hopefully I will be back to where I were.

For now whatever you are doing. Remember to have that flu jab if you have not done so already. And to smile. Keep fighting. Keep moving. But most of all – Breath Easy.

Maybe it is appropriate that I have chosen the tune oxygen to end this blog. ( I’m a bit of raver really ) Or would be if I had enough oxygen :)

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