Cystic Fibrosis and hospital stays
Every 18 months or so, I need to go into hospital for a ‘tune up’. Having Cystic Fibrosis mean that my lungs are not as resilient as the average person’s lungs and they are unable to withstand general bugs and bacteria. I have also recently cultured something called Apergillus, a type of fungi (I know, doen’t that sound great!?). This is found everywhere in the environment, epecially in compost, soil, decaying leave etc The pores get breathed in and my lungs are unable to get rid of them.
I have been in hospital on intravenous medication for two weeks now and haven’t improved as much as I’d like. My lung function readings are still struggling to get back to where they were 18 months ago. Each hospital visit is filled with anxiety. This is because Cystic Fibrosis is a progressive disease and it is expected that as you age, you will get sicker. As the statistics indicate, I am already living on borrowed time. My doctor has said that it’s possible that I am still pretty well for my age due to genetic modifiers. I like the idea of this but I also think that I am well partly to my mental strength. I have (mostly) never allowed this illness to defeat me mentally. I think half the fight is staying strong mentally and keeping hope. I am sure that if I began to tell myself I was really il and that I couldn’t do much, then I would probably deteriorate physically. I do my best, within physical limitations, to lead as full a life as possible. I enjoy travelling and I am also planning to try exercise more in the new year. Exercise has been proven to increase lung function but I have found it tough to incorporate in into my schedule.
Having Cystic Fibrosis is time consuming. There are numerous tablets to take daily. Then there’s the nebulisers. A little machine that turns mediction into mist that I inhale into my lungs to try maintain them. I also have to do physio every day to loosen sticky secretions in my lungs that can cause lung damage. There is also the possibility of getting diabetes sometime in the future. My mother, who also had CF became diabetic and became pretty ill and skinny after that. Thankfully the care I get at my CF clinic is superb and if I do get diabetes it will be well managed.
In fact on this stay, due to taking steroids, my blood sugars have been all over the place and I had to give myself my first insulin injection the other day – it was nothing at all. Hopefully this will only continue until I stop the steroids.
Time in hospital helps me to re-assess and perhaps slow down in some areas. Life is busy for all of us and sometimes we get stuck in a self destructive rut. I think we should all take time out to check that we are on the right track in life. It’s so easy to go off the rails and live a life that isn’t optimal.
Look after yourself, treat yourself with care and compassion – there’s no one like you and only one of you on this planet!