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.

Posted in copd | Tagged , , , , , , , , , , , , , , , , | 1 Comment

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.

Posted in copd | Tagged , , , , , , , , , , , , , , , , | 1 Comment

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.

Posted in copd | Tagged , , , , , , , , , , , , , , , , | 6 Comments