NICHS | John’s Story
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John’s Story

26 Feb

I would like to take you back to the 1990’s when I was living and working in England.

I was diagnosed with Asthma & COPD in the mid 1990’s and still managed to continue working quite well with the occasional flare up about once a year, which was treated with antibiotics.

That was until May 2006 when my breathing and life in general became rather laboured. I had no energy, shortage of breath and was tired all the time. X–rays, scans followed and various treatments from the medical services, but nothing seemed to be making my condition very much better.

Shortly afterwards in July 2006 I ended up in hospital with severe breathing difficulties and was eventually diagnosed with EMPHYSEMA, for which I was quite grateful having previously had cancer mentioned as a possible cause of my problems.

After 10 days in hospital and with my breathing somewhat better I was discharged and sent home with the N.H.S installing an oxygen concentrator in my living room and giving me an oxygen cylinder in case of electric failure. There was no real talk of anything other than to use the oxygen as and when I needed it. So I did, I sat at home connected to this thing in the corner.

Unable to work I retired in the December and in the January came to live here in Northern Ireland with my dear wife who was born here but had lived in England for the previous 33 years.

It wasn’t long before I was hospitalised here in Daisy Hill, Newry and there under the guidance of Dr Moan my treatment was changed and I was taken off oxygen being told that I didn’t need it. My health still wasn’t brilliant at that time and I had several doses of antibiotics and was looked after by the Community Respiratory Team. I was also feeling very depressed in myself and thought that I had no future to look forward to, that I was going to be a virtual invalid from here on in.

The Respiratory team (who I have a great deal of respect for and many reasons to be very grateful to) gave me details of the local Northern Ireland Chest Heart & Stroke co–ordinator Julie and I joined the Respiratory support group in Kilkeel. They were a very pleasant group of people who had a really positive outlook on life despite their condition, some of them were even carrying oxygen bottles around with them and using walking frames to get around.

After I had been attending their sessions for a while I had the opportunity to attend a self–management programme being held in Bessbrook. Some of my support group friends told me that they had gone previously and that I would enjoy it.

Let’s give it a go, I thought, so I went along and joined other people with long term conditions. We discussed and learnt about how we could improve our lives by managing our conditions more positively. I particularly learnt about healthier eating, exercise, better communication skills. One of the things we did each week was to set ourselves an Action Plan and you may think it trivial to think of someone setting themselves a plan to clean out a cupboard, to do a small walk around their house or to pull a few weeds from their garden. But to these people this was quite a big step for them to take and something they hadn’t managed for a while. Then to see their pleasure perhaps even pride when they returned the next week to tell us how they had succeeded in their task was just brilliant. Of course nothing breeds success like success, so there were new challenges to be met by them in the following weeks or just a furtherance of the previous one.

I went swimming again, actually just walking in the shallow end of the pool to start with but gradually worked up to swimming a width and then managing a length. Perhaps the people at the pool didn’t understand my smile at the other end of the pool when I got there. I would mention here that I hadn’t swum in more than 15 years and had developed a fear of the water after a bad experience in a Spanish pool when I had a panic attack. I felt my confidence growing as we went along I then started to change my diet, eating more regularly and better food, swimming more regularly. The course trainers were excellent and gave us the opportunity to explore issues for ourselves ways that we could help ourselves. Also they were able to give us guidance on any issues that concerned us.

I got so much from the course and with increased confidence in myself that I went on to start doing voluntary work for NI Chest Heart & Stroke and Headway Newry. With NICHS I am helping out with a Stroke Scheme in Kilkeel, making tea, doing the exercises with them and generally helping the group members in any way I can.

I have also trained to be a befriender with NICHS to support other people with long term respiratory conditions.

It seemed only natural that when the opportunity came along for me to learn to be a trainer of the Self–Management Programme I jumped at it in the hope that I could help other people with long term conditions enjoy the improvements in their lives that I had. So far I have only been able to assist in delivering training on one course but again I saw people moving forward and doing things that they had no longer considered themselves able to do. One lady wanted to walk again in the fresh air but was afraid. The group themselves assisted in coming to solutions as to how she could overcome. She did it. Another member started to exercise for the first time in years. Again starting slowly and gradually building up week by week. The satisfaction these people gained from their attendance at the course was once more evident to me.

This leads me to believe even more in the benefits if this course for people with long term conditions.

Recently I have been invited to tell my story at the RQIA Summit. They are the Regulation and Quality Improvement Authority who are Northern Ireland’s independent health and social care regulator. I’m looking forward to telling them about what has worked for me.

Thank you for listening to me, even more so, thank you to NICHS for what they have given me – self–worth again, purpose to life and belief that I CAN.

Find out more about the respiratory services that Northern Ireland Chest Heart and Stroke offer.


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