Been a while!
So summary from my last month or so, didn’t finish NaNoWriMo (hit 11,000 words and then university work kind of took over and I had deadlines on top of deadlines) and had an amazing holiday with my family. Hope yours was amazing as well and if not, it’s 2020 now! When else is better for a fresh start than a new year and a new decade.
2020 has the potential to be an amazing decade for me, but that does come with a lot of pressures. I want to get my degree, maybe a post-graduate Doctorate, start my professional career (whatever that is) and start a family of my own. Notice my health is not mentioned in there at all. That’s because I don’t know what the plan is.
Since I was a child, I had the mentality in my head that I would get to 40 years of age. That ripe old age where you’re just settling in to your mundane life (if you’re a normal person that is) and that’s where I thought I would get. That’s all over the place now. My doctors tell me that with the creation of CFTR modulators like Orkambi and Trikafta, no one has any idea what life expectancy for CF is these days. So that’s a positive. But also, my health is declining slowly and two years ago I was tested for suitability for a lung transplant with the potential for needing one last year. I was rejected but fortunately, Orkambi saved my lungs, stabilised me and helped me live to see the decade in. But all of this has had a weird effect on that mentality of mine. I always wanted to be a DR, not a medical doctor but a PhD doctor. That was a big goal of mine and something that I still want to do. Same with establishing a career for myself and having a family. Although lately, that’s all shifted. Don’t get me wrong, I still have big career ambitions, but they’re not the most important thing for me anymore. My goal is to have a family. As cheesy and corny and old-fashioned as that sounds, I want a white walled cottage in the countryside with a white picket fence and that’s what I want for my life. If I have to give up everything else to get that, I will.
Family has always been important to me, especially with my CF and it continues to be, now more than ever. I realised a couple months ago that the way that I am living my life isn’t sustainable. Sure I’m alive and surviving and doing my treatments but the way I’m living isn’t improving, it’s just stable. While that’s incredible and I’m very fortunate to not be quickly declining, I want to improve. As anyone who starts New Years Resolutions will know, you can’t just change yourself. I am someone who has done physiotherapy maybe once a month if they remember and exercise is walking to the shops and back (5 minutes on the flat). That has to change if I want to improve. I’ve bought an exercise bike and – with the help of my amazing boyfriend – plan to cycle for 15 minutes every evening building up my stamina and lung capacity. On top of this, do physio as much as possible (current aim is once a day).
So that’s where I’m at. My new exercise plan and my new-found desire to increase my life for longer than what it’s got left at the minute because that’s not enough. The saddest thing about CF and my goals with the disease is that I can’t just do them. It’s not like I can book a holiday and go away for a week to all the places I want to see in the world and then be happy. I want a family and if I get told tomorrow that I have a year left, I can’t get married or have a child because what happens to the other people involved when I die? It’s just as big of a commitment for them and it’s not fair to do that to someone, especially someone I love. So what can I do? I can live longer – and that’s my motivation to try. It’s no longer about myself and just wanting to achieve things for myself, it’s about wanting to experience the world and everything in it. It’s about wanting to one day look my child in the eye and know I wasn’t leaving any time soon. It’s about family, trust and love.