This was tweeted on the 16th September by Breathing Matters (@BreathingMatter): ”Imagine not being able to breathe and imagine having no cure! Help us find a cure for #IPF #Pulmonaryfibrosis http://t.co/B1AqJTAVkm“
140 characters focusses the mind and that pretty much sums up the fear and frustration experienced by people living with IPF, as well as their loved ones. As a medical writer, I’m no stranger to tight word/character limits and it’s amazing how much science you can communicate when you put your mind to it, but I found the level of accuracy contained within that tweet impressive. Even more so because those 140 ‘tweeted’ characters made me cry. Powerful stuff, social media.
There is a tiredness associated with the day-to-day living with the symptoms of any illness, because everything becomes contingent on ‘Illness’ being held at bay to a suitable degree to let you carry on with living. The frustrating thing being that nothing is mindless any more: You have to travel after or with the appropriate medication and adapt your schedule to accommodate any necessary timescales and dietary requirements as well.
The stark reality, death is something no one wants to face, so when it’s thrust upon you as an almost-certainty then a Countdown-style clock begins ticking for you and those who love you. Everything becomes a rush and urgent and possibly-the-last and it would be great to make sure that everything gets done at speed so nothing gets missed off. It’s really important to do things quickly and (this is important) in the same way as before so no one is worried that things might be getting worse.
If only you weren’t so tired, then you could get all these things done. If only it was a tiredness that could be fixed by a lie down rather than by a rather frustrating inability to fill up your lungs with air. If only you could get your breath enough to walk, do what you used to do, so neither you or your loved ones have all the memories of how ‘it used to be’ thrown at your hearts.
That all came to mind when I read that tweet. That’s why I cried.
Everyone gets used to routines in time, even a schedule of doctor appointments, hospital visits, and lung function tests – humans like habits, and routine is comforting. As a relative, the lack of knowledge is incredibly frustrating and, as each specialist runs out of options, it can feel like another door closing. This may be aggravated by my scientific background, so a more helpful way of looking at it may be that, as you acquire a new specialist, or leave one behind, you are making proactive and empowering decisions to grab a new opportunity to own your illness and its treatment. I’ve experienced the effect that this feeling of control can have on both the patient and their closest family. Strong words and feelings for an ongoing battle: It’s why you ‘fight’ cancer and ‘beat’ a virus.
If knowledge is power, then mindset is the mould to shape it, with and family and friends are the ‘back-room team’ to help put it in place. Andy Murray is a team of one out on court, but the pictures of him in the changing room post-Wimbledon included several others who all felt every twinge and psychological dip with him during that match. Taking back control from IPF is an incredibly brave and difficult thing and may also feel incredibly lonely. As one of those in the back-room team, I know that we’d give anything to help (along with any additional specialists brought into your entourage to replace those you decide you no longer need). You’ll never be a burden; you’d actually be doing us a favour too!