Looking After Your Health

Nichole McMillan NO PERMISSIONThose of us with cystic fibrosis are accustomed to a lifetime of caring for our health, from numerous daily treatments and physiotherapy to regular medical appointments and hospital stays. On becoming a parent, we often feel an increased motivation to look after our health, as we face the reality of our child’s reliance on us, as well as the physical demands that parenthood itself involves. Yet at exactly the point that we may want to make more effort than ever to maintain (or even improve) our health, we find ourselves with less time than ever in which to do it.

The daily treatment schedule of most CF patients requires significant time and dedication: daily physio and nebuliser treatments;  multiple different drugs to be taken throughout the day; blood sugars to monitor; high calorie snacks and meals to remember;  prescriptions to collect; routine hospital appointments to attend; exercise and rest periods to to schedule in. With a dip in health, the burden of treatment increases still further with in-patient hospital stays or intensive home IV schedules for 2-3 weeks at a time.

How do you fit all this in, whilst simultaneously providing  round-the-clock care and attention to a child? How do you do physio and nebuliser treatments with a crying newborn baby? Or IV treatments with a toddler who needs constant supervision and attention? And how do you cope with the exhaustion and lack of sleep without it impacting your health?

As a parent, our instinct is to prioritise the needs of our children before all else, including those of our own.  Whether it’s getting up to feed a crying baby when we are too exhausted to think straight or preparing a meal for a hungry child when we haven’t had a chance to make a snack for ourselves all day, being a parent is often about sacrificing our own needs for those of our offspring.  And even without our instinct to put our child before all else, there are only 24 hours in a day. Where is there the time to fit in demanding treatment schedules around the non-stop physical work of keeping one small person (never mind several small people) safe, fed, occupied and cared for?!

That’s what this section of the website is all about…how to fit it all in and how to ensure that our own health doesn’t get neglected whilst we provide all that our child or children need in life.  There will be ideas as to how you can make it work and tips and advice from our members based on their own experiences. We also recommend that you check out the ‘Resources’ section of the website, where you can find information on sources of financial and social support that may provide a way to access childcare to enable you to be able to fit in the treatments, exercise and rest you need.