Over the past 8 weeks I’ve been hanging out with fellow broken people. That’s to say, we all have broken lungs, and we’ve been going through Pulmonary Rehabilitation (exercise, lectures and presentations on medications, self-care, twice a week for eight weeks, NHS service). There’s a mix of lung diseases and causes, but the symptoms are very similar – breathlessness, reduced energy, increased susceptibility to infection and sickness. (My particular disease/cause of COPD is Alpha1 AntiTrypsin Deficiency). We’re not actually broken as people, we’re all pretty upbeat and positive all things considered, with full lives, but our impairments are significant and our lungs are, frankly, knackered.
It’s been interesting for me, because I’ve always resisted involvement in groups on the grounds that I didn’t want my life to revolve round my physical impairments. But it must be the right time because I’ve really enjoyed meeting the others.
Last week, a new guy joined the group. He said “I’m OK you know, I can walk as far as I like on the flat, but the slightest incline and I’m done for.” “Yeah” we all said. Because we all know. No explanation necessary. Hills are our nemesis. But there’s lots of other things we’ve had to give up too.
Talking of hills, one member, I’m gonna call him Terry for now, is a keen skier. Or at least he was. He was recently diagnosed with Idiopathic Pulmonary Fibrosis. That is, the unexplained hardening and dying off of your lungs. The prognosis isn’t good – 5 or 6 years if he’s lucky. He’s not old, in his sixties, was expecting a lot more years of active life. Now he can’t go skiing. Actually, he struggles to mow the lawn, but skiing is what he’s hated giving up the most. He’s bloody furious about it. It’s like a bereavement to him. But if his oxygen sats stay good he’s going on holiday next month and looking forward to some sunshine and sightseeing.
Jean (not her real name) gets fed up of relying on her daughter and grandchildren to do the vacuuming and change the bed. She’s not so bothered about giving up the big things, because she always expected to do that as she got older, it’s the giving up the little things that make her independent that irk. Though a new lightweight cordless vacuum cleaner has given her a bit of oomf.
Bill (another alias) doesn’t go hill walking any more, and he gets a man in to mow the lawn. For some activities he utilises his oxygen tank to give him a fighting chance. Mind you, he still makes it to the pub a few times a week, so not everything has had to stop. Where there’s a will, there’s a way.
Alison (you guessed it) gets fed up with feeling so frail, but she had already slowed down a lot as she has aged, so hasn’t noticed it as much, and she still lives for watching sport on TV. But her husband isn’t well either so they have to play it by ear day by day. They’ve given up planning ahead.
And me? I’ve given up so much that I’ve forgotten what I’ve given up. Sometimes it comes and smacks me in the head. I’ve given up going camping. It’s just too much like hard work. I can’t bear to get rid of all my camping gear because I keep thinking one day I’ll maybe give it a go. But I know I won’t. And to be honest, it’s a relief to have made the decision not to put myself through that. Getting up and dressed at home is hard enough work when my inhalers and the loo and a cup of tea are in easy reach. In a cold damp field, I’m knackered before the day has begun.
I’ve given up drinking. I mean, not altogether, but I’m not the drinker I used to be. Maybe a glass of lager now and again. A bit of a blow-out might mean 2 pints. It’s just not the me I used to be. I miss the evenings with friends and a few bottles of red, but mostly I am very much happier with a cup of tea.
I’ve given up open fires. That’s a sad one to give up. I have to decline invitations campfires and barbeques and parties with fire pits. I have to avoid holiday homes with coal fires. I miss that, I really do. I’ve given up dancing. I mean, I’m not really a great one for dancing anyway, and mostly I welcome the excuse, but just occasionally I wish I could.
I’ve given up climbing mountains. I miss the views from the top, though Bill did point out last week that Snowdonia has a train! I miss walking with friends. Friends don’t get how slowly I have to walk, or how tired I get, or how many breaks I have to take. Even just walking through town. Maybe I just don’t explain it properly. I hate walking with other people through town because I try to keep up, then it feels like I’ve run a marathon, and my lungs definitely think I have. Like Jean, it’s the little day to day things I get most frustrated about.
And now I’ve given up pretending. Pretending that I can walk up a mountain, or keep up with friends, or dance (had a little episode at a ceilidh a few years ago), or turn over the compost heap, or carry heavy shopping, or move furniture….
Being with fellow lung-disease sufferers has made it easier to stop pretending. Being with other people who hate that slope up to the Merrion Centre in town as much as I do has given me a new outlook to be honest. I’ll continue to try to be active. As our Pulmonary Rehab physiotherapists are constantly telling us, it’s ok to get out of breath, but manage your lifestyle to suit your energy. I reserve the right to push myself, to take risks, to occasionally over-do it in the garden, or carry too much shopping home, or walk up a hill, but I’m done with pretending I’m all fine. From now on, if I walk up a hill with you, it’s a big deal, OK?
Lung disease is the third biggest killer in the UK. The British Lung Foundation believes that not enough progress has been made to tackle lung conditions. There are still wide variations in care across the UK and is a major part of health inequalities. Yet there are no strategic plans in place to improve services or care in England and Scotland. You can support the British Lung Foundation’s campaign for change here: https://www.blf.org.uk/take-action/campaign/battle-for-breath