Six years ago I found out about a group called Breathe Easy Darlington, when my Community Respiratory Nurse told me about it.
The group has since proved to be a huge support to me. The members suffer a range or respiratory disease which is chronic and often life threatening. We have different experiences and yet we have so much in common; and we can swap those experiences, the little things that we find helpful. The cooperative friendly nature of the group is a great way to incentivise people who are often scared, and housebound. There is no cure for respiratory disease. Drugs can help but can't cure, and as we talk we discover the various side effects many have, some pretty horrible. Lung transplant is not an option for the majority and is in any case a last ditch effort, a very fine balance, for those who it CAN help.
Breathlessness for many is an indicator of pleasure or joy. For those of us with chronic respiratory disease however, that's not always the case. For us its often just part of our daily lives, a frustration. For many it is a source of fear or anxiety. It is often isolating and sometimes embarrassing. When getting dressed, or answering the door renders you breathless the thought of going out is tough. Knowing that when you arrive somewhere you are likely to cough or wheeze or puff is just too much. Through the group I have learnt all sorts of tips, pace yourself, limit and be realistic expectations etc.
I was diagnosed as having asthma when I was about 3, which tends to progress to COPD (Chronic Obstructive Pulmonary Disease) through the years. All lung conditions are progressive, getting more limiting as time passes. They are very rarely curable. My parents must have been terrified because there was very little treatment available then. I was lucky though, because my parents wanted me to try to lead as normal life as possible. Unusually, I think, I was brought up not to be afraid of breathlessness. I learned how to recognise when things were going downhill, to treat an attack early and keep calm.
I also had to run the gauntlet of constant belief that my problem was psychological, in my head and of my making. I grew up believing it was my fault that I had asthma. That has had a bad effect on me to this day. I wasn't ever bullied but I have learnt, through Breathe Easy fellow messages that many wheezy children were and are. Having been encouraged to use my lungs (a bit of a daft expression) I sang, danced, played clarinet, swam - all sorts. I was often left behind but always tried, and probably paid the price later that day.
Today, I wonder if all of that effort when I was younger has helped me now. I could do well at Lung Function tests - often above average as I started off in a good place. Now things aren't so good.
Like fellow group members, I'm on lots of drugs - about 18 a day when things are good, plus the inhaled stuff. They are not nice drugs to take., I have side effects too many of them - for example I'm diabetic because of steroid intake - add in 6 injections. I have learnt that others get osteoporosis, thin raw skin, weak muscles or many other choice ailments from treatments. I can swap information on the unpleasant side effects, and in many cases accept that they are worth living with so as to be able to lead some sort of life.
Like many others with respiratory disease, I push myself. I take risks by not going into hospital when I know I should. People with respiratory disease don't have much of a voice despite it being a major killer. In part, that may be because we don't have much breath but largely it seems to be that its not got the same kind of press or government support as heart disease, alzheimer's or cancer. The cure and survival rates for cardiac and cancer have shot up over recent years, whilst respiratory disease worsens at an alarming rate.
Breathe Easy Darlington would like to change that - for the individual who needs support from people who understand and generally to raise awareness.
I'd ask every person to try breathing through a straw for an hour or two. That's what respiratory disease feels like.