Rediscovering my adventurous side by being active with a lung condition

Doreen, from the Isle of Wight, shares how by taking small steps and having the right support, she was able to get back to being active after developing a lung condition.

At three years old I caught measles. Since then I have always had some breathing problems. But I have always been active! I had a boat and grew up outdoors, I‘ve been a canoe instructor and my husband and I have always enjoyed being out and exploring. We even had motorbikes!

15 years ago I got a severe chest infection. This turned into pseudomonas and I was confined to a wheelchair, being supported by an oxygen tank. The doctor at the time told me I would most likely be in the chair for life. I might never be able to be active and adventurous again.

Being stubborn, I wasn’t having any of it. I refused to believe that that was my lot. How could I go from being that active and healthy, to get a chest infection and then just doing nothing?

I guess in those days there wasn’t the same treatment and anti-biotics there is now. But just like me, my GP wasn’t willing to accept that this was it for me. He sent me to a colleague on the mainland. This doctor told me that if I was slow and did things in stages, I could get some mobility back.

At this point, I was getting out of breath and struggling to walk. Even just going from the bedroom to the bathroom was an effort. I lost my confidence. It felt like I needed to rely on my chair and oxygen. I was determined to get back to some sort of normal but nervous to try.

I got in touch with my local respiratory unit and learnt about Be Active, Breathe Easy. Andy, who runs the sessions, was so helpful. He was with me every step of the way. We started small, just standing up out of the wheelchair to start. Then I did a few steps with him by my side. I was still wearing my oxygen but making progress.

Eventually, I got more confident and we tried standing up without my oxygen on. I didn’t really need it. I was doing fine without it if I did so in small stages. I never tried anything without Andy and then my husband by my side.

Andy’s help and encouragement helped me get back to being active. I found my adventurous side again.

Mind over matter

For me it was a matter of thinking ‘Yes I can do it and I will do it’. I stuck to the advice from doctors, doing things a little bit at a time. But I didn’t let myself give up hope. It took a long time but I was determined.

Now I exercise regularly but only to my ability. I am careful not to push my limits and make myself ill.

I have an electric bike and often go for rides with my husband. It helps me up hills, so I don’t get too worn out. I do gardening regularly and lots of walking. Recently, I’ve also started a bit of Tai Chi, having been taught by Andy.

Being confined to a chair, it doesn’t take long for your muscles to waste away. Being active again has helped me to build these muscles back up, as well as ensuring they stay strong. I know my body is in a much better condition and I am healthier all round. This gives me the best chance.

Leaving my chair and oxygen behind has given me so much more freedom! I can go out to meet up with my friends now and I have joined an art group. I would never have been able to do that before.

I know if I stopped being active, I would regress. My health would become worse and I could become more ill.

Bad days

I still have bad days. Sometimes I need my oxygen again, especially when I am ill or have a chest infection. But everyone has down days. I just know that I will get back to it as soon as I am better.

You have to be kind to yourself. Don’t push yourself too hard or over your limits.

The Be Active, Breathe Easy group has been a great support network. It’s social and friendly and keeps my mind and body going. Andy helped me to understand that state of mind is important. That I could change my lifestyle to give my body the best chance, but I needed to be determined and stay positive.