Idiopathic Pulmonary Fibrosis: The Good Bits
I’ve heard myself say some fairly strange stuff over the years, but I was rather taken by a line I uttered shortly after diagnosis, sat in the pub with my brothers: “Whatever is coming, I’m determined to find a way of enjoying it.” The chances are I wasn’t on my first pint.
I was holding things together quite well that day and noted that the line struck an impressive chord. The fact that I hadn’t the faintest idea how I might enjoy anything in the future made those words sound sadly hollow to me, rather good acting, playing to the crowds who were under the utterly false impression I was on top of things.
What I learned over the next few years were life lessons that took me from floundering around feeling sorry for myself, to coming to terms with my situation and being able to develop a mind-set that allows me to recognise what’s truly important. And yes, for the record, I’m happy, but that doesn’t mean I’m immune to bad days, far from it.
Most of us have been around the block enough times to know that writing or reading one article isn’t going to change our world. We also know that there are times when we need something to help nudge us out of a certain frame of mind that we’ve become a little too attached to. I was faced with having a seriously reduced lifespan and then having to spend what ever time I had left feeling depressed. I had no say in the IPF but I was damned if I’d give in to the depression. My head was full of miserable stuff, so I started by slowly replacing it with something more uplifting.
So; the good bits for me about living with my prognosis, are that it brings certain things into focus that otherwise would remain entangled in that vast array of ‘stuff’ we concern ourselves with. It’s helped me to simplify my thinking and readjust my priorities accordingly, perhaps above all I have become massively self-aware and it’s one of the most rewarding things I have ever done.
I found these lines very powerful in making a start:
1 – “Be kind, for everyone you meet is fighting a battle you know nothing about.”
I now look for proactive opportunities to say or do kind things, because it completely changes my mind-set from being naturally critical, looking for what’s wrong, to being appreciative of what’s right and what’s good. I’m far from able to do it all the time but I’m improving as I go, and when I get it right it makes me feel great and often has a positive influence on the general atmosphere.
Something else I do now, before I set off in the car is remind myself to be safe, smooth and considerate in my driving. If someone cuts me up I just back off, I let it go, who knows what their reasons were? Why should I spoil a nice drive by getting wound up?
2 – “If you want to be happy, be grateful.”
As an IPF sufferer, finding things to be grateful for, initially struck me as something of a ‘long shot’. Making a start proved a challenge but once I’d got a few things down I warmed to the idea.
I’m chairman of our local IPF support group in Leeds and I recently ran a short experiment where everyone was asked to spend a few minutes writing down things they were truly grateful for. There were around 45 present, split over maybe 10 tables. I started at one side of the room and asked each table to read out a few examples of what had been said. It was evident that some people were finding the process a little uncomfortable, but the majority played along. I was on a stage at the front of the room and from that elevated position it was clear that the mood of the group lifted noticeably the more they heard each other’s comments. My point being that it simply isn’t possible to feel grateful and sad at the same time. The more we make room for the good, the less room there is for the thoughts that make us feel bad.
Please don’t think that I’m one of those seemingly bullet-proof people who are able to stay happy and smiley in the face of all adversity; you’d be well wide of the mark. I’ve spent countless hours simply looking out on the garden, at the walls, or just into space trying to come to terms with what’s going on; thinking why am I in this situation? I’ve piled up every possible reason to feel utterly depressed about my diagnosis, and I know all too well that during such times I would have instantly rejected the most logical, well intentioned advice in the world. If you’re in a bad place at the moment you won’t get this just now, there’s no way you can, there’s a time and a place, and don’t let anyone tell you otherwise.
When it became obvious I was becoming hooked on negative thinking I realised I should act, so I began finding reasons to dislike it; I started noticing how often I was being down about things and how often others were too. I noticed how the naturally pessimistic seemed to lack a certain warmth in their eyes as well as in their voice. I began to check how much time I was wasting feeling bad about something that I could do nothing about and I realised I was thinking my way towards depression. “But you’re in a lousy place, your entitled to feel depressed!” someone once said, and that helped me; it’s an entitlement I reject, I haven’t got time.
Most of the things cluttering our brains do nothing other than restrict our enjoyment of the simple pleasures of being alive. The privilege of a breath of fresh air, a walk in nature, the warmth of a loved one’s smile, dinner with friends, the joy of children’s laughter and the inner peace that comes from realising that after all these years, you’re finally filling your head with things that actually matter.
I began to realise the truth in something I’d read years ago:
3 – “Happiness is a choice.”
I knew it was a choice I had to make soon and what I’m illustrating here is how I made a start. It was gentle and gradual and it helped me build the motivation to keep at it. So far so good and it began by me remembering to add a little extra gratitude and kindness into each day. It’s free and everyone wins.
So, as I sit here, approaching ‘end-stage’ IPF, there’s an immediacy about certain things that shouldn’t be difficult for you to imagine. If you’re currently fit and healthy you could be forgiven for thinking that these words don’t apply to you yet, however:
If you were told that you had only six months to live, would you prioritise things differently?
How do you know you haven’t?
More from Tony
Read Tony’s first blog post “I’d rather have cancer”.
Read Tony’s second blog post “My Journey with IPF, so far”.