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.