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.