Well here we are a quarter of the new year already gone And once again I am questioning what my purpose in life is any more, for those that know my site and have read my previous efforts at writing some form of sensible journal will also know that I am a disabled person with Emphysema, I have not posted a blog since August of last year, the reason being I have either been in hospital or to ill to bother. But last week on one of my better days I was in the local supermarket when someone that I hadn’t seen for some considerable time came over and “Bloody hell Keith I thought you were dead” So I thought I would knock up this blog to let anyone that might be remotely interested know that I’m still around and as volatile as I ever was.
Whilst this condition severely reduces my breathing and therefore my mobility, It seems to me that my only real contribution to this life, which (if I say so myself) I think I do quite well, is an attempt to offer comfort and advice to those people who have very recently been diagnosed with some form of lung disease. Who, for what ever reason are finding it hard to come to a acceptance of a condition that has no cure, to adjust and cope with the mind games that asks “Why Me” and “I will find a cure” which is a great attitude to adopt but only to be dashed once they realise that no such cure is forthcoming.
It is usually at this point with the realisation that they are unable to do physically, what for years they had taken for granted, that the inevitable depression sets in, and many then resort to becoming a virtual recluse. Mainly due to embarrassment i.e. “I don’t want to be seen out struggling for breath”, “if I have to stop and start every few minutes is it worth it”. And therefore it’s easier to stay at home and adopt the “ I can’t do that” attitude and in doing so self impose a prison sentence within ones own home.
So where do I come in, back in 2001 I was asked along with numerous other patients if we would be interested in setting up a self help / support group for patients with serious chest diseases, of which there are very many to choose from ( not that anybody in their right mind would do so). It took a while to pull the idea together but in February 2002 an initial meeting was arranged to discuss the aims of just such a group and just what would be involved in the running of a self help / support group. Excluding medical personal there were seventeen patients present. A follow up meeting was arranged for the following month, and to cut a long story short, “3” yes THREE ONLY turned up. Of those three there only remains yours truly, but foolish as it may seem we pressed on with the club. For my sins I was asked to chair the meetings and seven years later I’m still chairman of the group (I sometimes wonder why I took that original phone call) have we progressed in that time? Well we now have a core membership of 87.
And in that time I have been involved in various committees such as our local Primary Care Trust (PCT) I have been on the local radio and in the local press. I give talks to new patients about living with a lung disease and about the group in general. I have built up a wide and friendly network of Doctors and Nurses in the field of Thoracic Medicine all of which I consider to be friends, not just my clinicians.
You may have picked up on the fact that I use the word “I” quite a lot, don’t get me wrong we have a committee who once a outing or social event as been arranged I can generally just let them get on with it, but when it comes to running a meeting, producing a monthly newsletter well that’s down to me. The newsletter I must admit I enjoy writing, but collating 4 sheets in landscape, folding and stapling and stuffing in envelopes, 87 copies is no fun at all, in fact it tends to work out at about 25 copies then rest for 20 minutes before I start on the next 25 and so on.
So you will not be surprised to know that just before Christmas on no less then four occasions various people took the time to tell me (in Hospital) what a marvellous job I do on behalf of the group. Followed by and it was nearly word for word on each occasion “If anything happened to you I think the group would finish”. Now if that is so, you may now understand why I asked at the beginning what is the purpose to my life? What the hell am I doing, what am I knocking myself out for, if all of my efforts will have been for nought.
In the SEVEN years that the group as been running, I have met many wonderful people, sadly many are no longer with us. The sad facts are that people with chronic lung disease die. And whilst we miss them the next patient to see his / her doctor might be the next one to be diagnosed with a lung disease, and therefore the support will be needed just as much in the future as it is today. Prior to Bolton being able to offer Pulmonary Rehabilitation, our membership hovered at about the 60/65 mark since Re-hab classes were launch in 2008 those numbers have increased by about 20. Bolton Respiratory Support Group offers a way of keeping in touch after the course as concluded and to meet other people with similar conditions, who can exchange views and useful ideas that work for a particular member or members, and newer members may find that it works for them also.
So the question as to be asked. Do I carry on sending out the message that having a lung disease is not all doom and gloom, as long as you work at it, follow your doctors advice, and don’t become a recluse, take moderate exercise, a little breathlessness is not necessarily a bad thing but don’t over do it.
So will I carry on? Well how am I doing so far? YES I‘ll keep banging the drum, I just hope that someone is listening.
