By no means is Cystic Fibrosis not a degradation of pulmonary function because that’s actually exactly what it is. But that part of the definition, the part that says “degenerative”, doesn’t necessarily have to mean a degraded life or a life “less” lived. I have done some amazing things with the lungs I’ve been given. And that’s mostly due to the diligence of my parents’ care for me and God’s amazing work.
The major presentations that I suffer are of course in my lungs, where I always feel like there is an elephant sitting on my chest and I am constantly fighting lung infections, but lately (in the last year, year and a half) I’ve been seeing more pancreatic presentations and sinus presentations. I of course have pretty bad skin and its really salty to the taste and sticky to the touch and the absorption of nutrients is impacted; in me not as badly as some other folks I know with CF. I can usually supplement just enough with extra vitamins and minerals.
But still at 43, as lucky as I am to still be successfully living with CF, I am starting to see real degradation of the quality of life for me. I am not able to go out as much and my life has been quite solitaire and lonely. I have recently joined a meetup group for my crocheting which is something I recently started up. I am hoping this helps me find new friends here in Arizona.
Naturally depression is a big side effect of dealing with a chronic, typically terminal, illness like Cystic Fibrosis, so I lean a lot on my faith and on trying to balance my life as much as I can with hobbies and interests. I also love the work I am doing lately at CA Technologies. So along with the degradation of your health, CF (or any chronic illness) can cause a degradation of your mind and spirit. Your mental health is just as important as your physical health so you have to be mindful to take care of both.
Nothing helps that more than truly believing in a higher power. As a Roman Catholic for me that’s God and Jesus Christ. I keep that love very close to me and always remember that their teachings are rooted in love before all things. And you get to take that love with you where ever you end up.