How I’ve learned to see the positive side

Andy has a rare interstitial lung disease and has had to come to terms with being less active.

Andy after completing a challenge for the BLF

In 2011, I ran from John O’Groats to Lands’ End to raise money for a leukaemia charity close to my heart. I was plagued by a cough but didn’t give it much thought. After all, I had run more than 1,000 miles in a little over 2 months.

Afterwards, I noticed a dip in my running times. Exercise got a bit harder and I felt tired sooner. I still had my cough and I had some chest infections. A year went by before I told my consultant, at the hospital where I’d had a bone marrow transplant to treat my childhood leukaemia.

I’d had a CT scan before the John O’Groats to Lands End run to check I was fit for enough the challenge, and now I had another.

The difference in a year was immense

The later CT showed a lot of scarring in my right lung and also some in the left one. Lung function tests showed I’d lost about 30 - 40% of my lung capacity. I was told I had a very rare interstitial lung disease called idiopathic pleuroparenchymal fibroelastosis (IPPFE), and that my lungs would continue to scar and my lung capacity would fall. Since then, I’ve taken steroids but I face a very uncertain future. I may become suitable for lung transplant at some point.

The impact on my life is huge

Physically, things I took for granted slowly became more difficult. And I’ve given up competitive football, as I don’t have the breath to sprint. I’ve always loved sport and shared this with friends, so it was hard to accept.

The mental impact on me is the hardest. I lost confidence when I wasn’t able to do things my friends could. And at times I’ve felt angry and isolated. 

Facing an uncertain future is unsettling. My condition is currently stable – a steady rate of scarring – but it could get worse again at any time. A transplant could be 10 years away, it could be in 18 months. That’s a lot to contend with mentally and I’ve always considered myself mentally resilient.

As my condition is so rare, I have to take chest infections and flare-ups as they come, and get urgent advice on what to do each time. Like I said, a scary, frustrating place to be which at times can be very lonely.

Over time I’ve learnt to adapt. It’s not been an easy process, but it started by accepting that what will be will be. It’s a hard shift to make and I still have down days.

I try to focus on what I can do rather than what I can’t

By replacing the fear of the future with enjoying what I can do in the here and now, my life has improved immeasurably. 

I’ve started to do positive things to that will help me self-manage my condition, like exercising within my new limits. I try to run 4 or 5k on the treadmill 2 or 3 times a week at about 80% of my capacity. Finding your ‘limit’ while challenging yourself at the same time isn’t easy! I also find out about other things I can do to improve and talk to other people living with lung conditions on the BLF’s web community.

My top tip is to exercise – however you can

I’d also recommend talking to someone about how you’re feeling. I spoke to people with lung conditions on the online forum, but you could also go along to a BLF support group. You could talk to a friend or a member of your family too – they don’t need to know all about your lung condition. The important thing is that you talk to someone, especially when you’re down. 

I wish I’d known when I was first diagnosed that I could call my respiratory specialist nurse if I was worried. I find mine a great bridge between my GP and consultant, and it’s great to know she’s there if I need her.

The other thing that’s helped me is taking the time to develop an understanding with my GP about my condition. It means I get repeat prescriptions easily and an emergency supply of antibiotics if things flare up without delay.

I also take comfort from knowing I’m not alone. Organisations like the British Lung Foundation are here to help, and I draw great strength from their work. Research gives me hope for the future. And I always remember what my late mum told me: ‘illnesses can take over your body, but they can never ever take over your soul’.

Read our online information on dealing with your mental health, anxiety and depression.


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10 May 2019