I never realised just how much better things have been over the last few years. Admittedly my health has taken a huge nosedive physically but emotionally, its great because for the first time in a long time, I don't have that angry voice in the back of my head telling me that no one can be trusted or that what I went through was right. There are things that I wish I hadn't done and choices I made but I can't go back and say to myself "no, don't get involved with them." or "that is a BAD idea". Hindsight being a wonderful thing and all that. I can't waste my life on regrets.
The most daunting things I faced over the last year were the cold hard facts of what my condition is and what it means. I looked at "Timehop" this morning and almost cried when I realised that it was a year ago today that I was told that I had pulmonary fibrosis as a complication to what was already very severe asthma. I didn't really take it in at the time, probably because I didn't want to see what this really meant. My disease progressed to this stage a lot quicker than most people's and it isn't a common thing for someone my age to develop. We didn't know then, the extent to the damage was only discovered in April this year when I finally got a repeat LFT done, but this was going to be, and has been, life changing.
In April, I was told that even though I was very poorly, this was going to be my best. My best is on oxygen, unable to walk very far or do very much, exhausted and in pain. I think that once I had finished being angry about it all, and trust me, I was very angry because it could have all been avoided had a certain consultant done a better job, I remember crying so hard that I wanted to scream and Natt had to restrain my limbs because I just wanted to break things and scream and shout until what little energy I had was gone. I cried myself to sleep that night and didn't really leave my bedroom for nearly a week. The truth was, this whole thing broke me in a way that I didn't think I could be broken. I started asking myself serious questions and wondering what "quality of life" really meant to me and started to look up options for the easy way out. I remember that moment I broke the news to my mum, I couldn't bring myself to say it at first, how could I? But knowing she was there and ready to help me fight my corner along with my friends, family and Jace. I was overwhelmed by the fact that so many people had come together to support me through this.
So many people forget that just I'm young that an illness can't do what it can do. I have had people look down their noses at me because I am in my 20's and am in a wheelchair while at 70+ they were still on their feet. People giving me dirty looks and rude comments because I was seen before them in A&E. People shouldn't judge what they don't understand. I didn't want to be reliant on medications and oxygen tanks before my 30's. I didn't want to need 6 pages of medication or to need care daily. I've been denied things that would improve my life (like having a shower installed in my bathroom) due to my age and I find that so frustrating. I'm only a 20 something after all and that seems to be the only thing that people see. If I was a little old lady, I would have everything thrown at my feet regardless of need but I'm not so I have to just do what I can with what I have.
Maybe I should celebrate, every year is another year I survived. I'm trying to think that surviving and living on when so many wouldn't have been able to, is better than thinking that its another day closer. I go in to hospital knowing that one day, I will go in and won't come out and that does scare me because who wants to face that? I know my family, my mum and my aunt particularly, are scared that something will happen but they know I love them and I won't stop trying as long as they're in my corner.
A year ago, I was told that things were bad and that we didn't know exactly what or how things would happen. It could have been the end of me, but you know what? Uncertainty has been the making of me.
2 years ago