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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How weather effects copd and more.

How time seems to pass. My spring holiday is over, and soon to be three months since we moved into our new home. The hard work behind us with smaller jobs to be done at a more leisurely pace.

Health wise I have to admit is hard at times but I am learning to pace myself better. That to me is a continual lesson. Even though my copd continues to progress at a very slow rate. It is progression, so naturally what I do now is not as easy as a few years ago. New problems have occurred to further irritate. Under my toes feel like I am walking in sand. I still have swelling of my feet, and legs feel as though I am wearing tight socks while wearing non. I can now add  peripheral neuropathy  to my list of woes. Some of this could be caused by medication.

On the plus side I have managed to use less oxygen, much to my delight, in the house. I have practiced breathing techniques and seem to have some success in getting oxygen levels up quicker. This means I tend to rely on breathing more than oxygen when about the house, unless I am doing jobs in the house. I also have to use oxygen in the shower. I have learned to pace indoors too. How our lives change with copd. As little as 16 foot from my chair can send saturation levels diving from 92 to 84, but now I can get them up quicker under my steam. Small things they say as this makes me feel happy to be able to do this even though it is such a minor thing to do to some.

I do have to keep an eye on my resting sats however. Any sign of an infection kicking in and they will start to fall, while my heart rate will rise. I also need to be aware what the weather might have in store for us. Did you know your oxygen sats could be effected by the weather? Or if they are why they are effected?

We inhale oxygen into our lungs. This fresh o2 is pushed from our lungs into the red blood cells. Air pressure is used to do this. When air pressure is high even for many of us with severe copd breathing is easier. But when air pressure becomes very low that can, and does lead to a very challenging time for many of us as oxygen saturation levels fall, and breathing becomes at times laboured, and hard. My resting blood saturation levels during usual meteorological conditions will often be a nice 92%. I do not need oxygen at that time. However, when air pressure falls as a storm passes, it is time to be wary. I have known my resting sats to fall to 87/8 during times of storms. That is when I will put my oxygen on a low setting and use it. Usually I am not breathless. But the oxygen is protecting my heart, liver, and kidneys.

Tomorrow we have a storm passing with a predicted low pressure of about 975mb. I know I might need oxygen resting while that beast passes. If you find yourself shorter of breath than usual when resting, or notice your blood oxygen levels are showing low on your oximeter and pressure is low. You now know why.

When an aircraft is at a hot airport it needs to go faster and need a longer runway to take off. This is because heat has the same effect as altitude, air becomes thinner and for many of us, we become more breathless. I hire a tramper to ride up a mountain near to where I live. At base I need no oxygen as I only use oxygen when on my feet. However, at the summit I will notice the effects, usually because I am starting to get pains in my body, and have to start using oxygen while seated on the tramper driving. Heat has the same effect. The hotter it is. The less dense oxygen is in room air. When it does get hot here in Wales, which is not often, I will sit it out in the coolest part the house, and if still too warm, will often put oxygen on to help me. This stops me becoming ill.

Till my next blog keep smiling. Remember there is always someone worse off than you. But most of all, Breathe Easy.

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Stress can make copd worse as can trying to rush.

After a three month absence from blogging it is good to sit here at my desk typing another. I was going to write about the weather and copd. But will instead keep you all up to speed about what has happened this last few months.

The past winter was quite uneventful with at least hospital admissions being avoided. I have learned well how to deal with upcoming problems quickly to stop a potential serious situation becoming critical. Constant flare ups every six to eight weeks from early Autumn proved a trial that had to be solved. These being proved to be an inflammation problem. Not surprising given that ours is an inflammatory illness. The NAC capsule I take each morning has really done well in stopping the muck getting on my chest without any side effects. I am sure Hemp seed oil is helping too, and of course the vitamin D3 capsule keeps my bones in good shape, essential if taking any steroids, as well as firing up the immune system to maximum values. I do now take 10mg of prednisolone a day to keep the inflammation down. But am one of the lucky ones as preds do not seem to affect me while definitely stopping this inflammatory cycle I have had. It really does seem to be the devil and the deep blue sea sometimes but in the end have to choose what we feel is best for us.

As you and I know our condition is often one of not knowing if tomorrow will be a good, or bad day. Bad days often arriving without warning, or apparent reason. How I hate them, while also out the blue we can get good days when breathing is better and we can do so much more. Sadly them kind of days are rare.

I have been very busy since my last blog. And have had to keep pushing, keep moving to make things happen. We must always keep moving. Even if at times we don’t feel like doing anything.

During January and February we had an extensive house renovation to the house we have now moved into. Our new home had to be made disabled friendly for me, a complete bathroom refit, stair lift, and other essential work. Work to be done before the move and not after to cut a dust problem. My job was to employ and oversee builders. Fair play to them all, they stopped work if doing anything dusty to allow me to walk around when on site looking at what was being done, knowing how fragile our condition can be, and with me walking around with oxygen.

Mid March we moved into our now refurbished home. After our last move four years ago. And knowing I could now do nothing useful unless sitting at a desk, and having now learned to delegate I decided to become the tea boy for the lads doing the move. Which in my case made this the least stressful moving house experience I have ever had in my life.

We must remember – stress will almost certainly make us with copd more breathless than usual, and trying to push yourself too fast will probably have you gasping for breath. We really do have to learn our limits. And keep to them for a better life. Believe me. I learned these lessons the hard way.

I am hoping for a new venture in the coming months, and have an interview, where I have to give a five minute presentation, for a research organisation in the hope of becoming a Research Champion next week. The strange thing is that since I started to do work for different organisations wearing a canulla and using oxygen, even more doors have opened. Opportunities seem to bounce at me. The message here for you guys that are given oxygen for mobility but refuse to go out the door for fear of what others may think is, get out there. You will be admired for doing so. And like me you will enjoy life more while finding a reason to, as I say, get your body moving. And if like me you have a skill you can use in a volunteer capacity. You will find doors opened for you very willingly. Even though like me you move slow, and use oxygen. For those of you not at the severe stage and needing oxygen. I cannot stress enough. If you do not work make sure you keep active. Because by keeping active you will help to slow the progress down and add many more years to your life.

Next month I am looking forward to a holiday (vacation) where I will be hiring a few trampers and roaming around some very pretty coastal and country locations. As usual my camera’s will be with me so hopefully will be able to share some photo’s with you when I return.

Many thanks to you guys that have written to me this last couple of months, and to those asking after me. Keep a smile. Keep moving. And best of all. Till my next blog, Breathe Easy.

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