When you're diagnosed with a form of chronic lung disease one of the first things that you learn pretty quickly is that a lot of the management of the condition is down to you.
In some ways that's quite empowering. Once I got to grips with some of things that I needed to do to help myself like regular exercise, drinking plenty of fluids, getting the flu jab and the 'huff-huff' breathing technique to help shift the troublesome mucus, I felt like a regained a sense of control that I felt I'd lost when I was first diagnosed.
However in other ways it's been really scary and unsettling. Me and me alone has to make the call on when a slight cold might actually require a move to a two week course of antibiotics. After my recent pneumothorax it's been deciding when to go back to the gym and how hard to push myself. More importantly, it's been weighing up whether slight discomfort, burning and breathlessness are a sign of another small, underlying pneumothorax or whether, in fact, they are simply just unwanted general side-effects of my lung condition.
It's a genuine dilemma that plagues me every time I get ill or feel a bit of chest pain and there doesn't appear to be an obvious litmus test and follow up course of action as there is, say, with something like diabetes.
As a result I found myself stuck in a general state of limbo wondering whether I should wait a while longer for the cold and/or burning/inflammation in the chest to subside or take a more proactive course of action like starting antibiotics or speaking to the clinical nurse specialist about possibly coming in for an X-ray which may end up being nothing.
Following the old adage 'it's better safe than sorry' is the most obvious course of action. However, it's not as easy as that. I can't just start antibiotics every time I have a cold as in time that will lower their effectiveness when I really need them. Similarly, I can't have an X-ray every time I have a bit of chest pain as that's really bad for my body, too, which has already received more than it's fair share of exposure to radiation.
This brings me to the point of this post which is at what point do you make the call to take action? I imagine this is a dilemma that many others face on a regular basis and I'd really appreciate any advice that anyone might have.
One avenue that I know is open and I haven't tried yet is the BLF Helpline. I know that they have trained nurses who might be able to help and will certainly be able to give me some kind of guidance.
Ultimately, it's a judgement call as with so many things in life not just lung disease but it would be nice to have a few more answers if only for my own peace of mind!