Ok, I’m not 100% sure that this post is going to go down too well, but bear with me.
I’ve always said that CF won’t beat me or it won’t define the person I am, but it is still a huge part of my daily life, regardless of whether I choose to let it define me or not.
Now, I’m not saying that CF is my biggest accomplishment because I love having it and that I enjoy taking medication 20 times a day and or that I adore coughing green or brown phlegm up from my lungs, far from it, but my doctors told my parents I wouldn’t live past my eighteenth birthday. I’ve lived a quarter of a century. I’m still here, almost 25 years old, still popping the pills and breathing with my original lungs. That’s what I mean by CF being my biggest accomplishment, I’m sure other CFer’s parents were told the same or similar news when their children were born. It shows how momentous our fighting spirit. Also the medications, tablets and general treatments have made huge advancements since I was born.
But there’s a flip side to this. Yes, CF is my biggest fear. I know I’m doing pretty good right now, but I don’t know what my health status will be this time next year. I could go downhill or something big could happen, who knows. Cystic Fibrosis is a progressive illness, I’m not going to get better, I’ve learnt to accept that, but the thought of my health draining away and me becoming a shadow of myself is pretty damn scary. I know I will need a lung transplant eventually. Now, this is where shit gets real for me, I can’t handle that thought just yet. It’s hard to say it without getting emotional and feel just pure fear. People with CF who have already had a lung transplant are absolute inspirations to me, they’re true heroes to everyone. But I know that time will come eventually, the big question is when, not if.
Now, I know there will be plenty of CFer's screaming at their phone or laptop screens saying, "How the hell can you even say that CF is your biggest triumph?!" I can see where you're coming from. But hear me out, CF is an illness which gets worse over time, each day I get through is a small achievement to me, the fact I've made another day without CF beating me sees my inner self do cartwheels in celebration. I and many others with CF have managed another 86400 seconds, 1440 minutes and, more importantly, another 24 hours in our lives.
But still, having CF bloody stinks. The endless tablet taking, breathing in nebulisers and tedious physiotherapy can wear me down. Knowing I'll never know what it's like to be just 'normal' is quite sad. But this is all I know, so I may as well keep my head down, swallow the pills and get on with things!
Lucy
♥️
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