The Time Is Now



Hello, hello. I'd say something like long time no speak but in the grand scheme of things I guess it's not been too long at all. 

But how are ya? You good? I'm alright, I am now anyway. I wasn't for a little bit but I'm in such a happy mood currently and I'm feeling much more like my old self. I thought it'd be nice (and also a way to save £££ on therapy) to get the *feelings* down, even though God knows if anyone still reads an old fashioned blog these days. However I felt like this was only marginally less embarrassing than having a breakdown on YouTube...

 In short I had and was not feeling or acting myself, so things that wouldn't upset me usually had me really stressing and sad and now I feel like a drama queen. I've spent the past few days alone at the house in Brighton which I thought would be lonely, but it has in fact been glorious. It's been so nice to take life real slow, my problem usually is that these days I'm in a rush a lot of the time (although I'm sure some people would disagree with that.) It's a pet hate of mine when people say 'You're young, you have the rest of your life to do X, Y + Z!' 'Life begins at 30/40/50!' 'I wouldn't go back to my twenties if you paid me, I'm much more secure in myself now.' 

Stop that! Oh, to have the luxury of time. We all think we have it but what if we don't? We don't know what will happen and this is especially true of us post-transplant folk. I was having a chat with a post-transplant friend about this (you know who you are, I'll credit you if you want haha! xox) and she was saying how annoying it is when people say 'Ooh, anyone could get hit by a bus tomorrow!' We could, but we also have the extra (and much higher) chance of getting rejection or infection that regular people don't have - lucky us, eh? To quote Joe De Sena, 'Death is the price we pay for life.' It's something you take on when you get listed for transplant and to be perfectly honest having cystic fibrosis has meant that I've grown up not expecting to live as long as other people. Maybe you're reading this thinking how negative it sounds, but it really isn't - it's just facts. The only control I have over them is how I feel about it all, the rest is up to the universe (and the magic of medical science!)

How I feel is incredibly lucky. Not only am I still alive, I can breathe and truly live rather than just exist, which is what I was doing in the couple of years leading up to transplant. I was still happy, there were still fun memories being made but to me being hooked up to multiple machines in the same single hospital room for weeks on end dreaming of the outside world was no life. Transplant saved my life, but it also allowed it to truly begin. Adding onto the De Sena quote, he also said 'So make it worth it.' I want to experience as much as I can, which is so much fun. It means saying yes to the scary things, like going on live tele or moving away for uni to a new town where I know no one. It means going out for drinks even though I'm a bit knackered and not getting home til 4am. It means when I say I want to go and see this film or that exhibition I make sure I go. It means buying gig tickets even though it'll leave me with barely a fiver in my pocket. It's reading as many books as I can. It also means the little silly secret things, like going to hear Big Ben in case I never hear it ring again (I feel like this is uncool to admit it but I was a bit sad 'bout it ok?) or going on every tube line on the Underground just because I'd not done it (the Northern line is the worst, FYI. I'll stop being geeky now.)

Aaaand it means hardly sleeping because I'm still worrying I'm not fitting enough in. An extreme case of FOMO if ever there was one. I mean I'm writing all of this now at 4:30am (but that's also because the seagulls outside are going absolutely mental!) If I have a day indoors I feel so guilty, as if I've wasted a day because there's a world outside to see and here I am watching Netflix instead.

I think I'm just trying to get everything I can out of life. I know these aren't feelings exclusive to me or even people who have chronic illnesses and I know we shouldn't compare and the majority of us actually don't have things figured out but I'd like to say it all anyway to get it out of my brain, despite the risk of embarrassing myself on the internet by sounding self-pitying. I feel like I'm at a point in my life where a lot of people my age that I know (and younger, good Lord) are doing the getting a house/married/children thing but I don't think all of that's on the cards for me. I don't even think I want that, regardless of anything else. Maybe my life is a little bit more unpredictable, but instead of worrying about it I'm now thinking what an exciting thought that is. The time is now, I have to live in the present and if I think about the future it's going to be about the fun things I'm going to experience as for the time being I still have tomorrow. I'll end this with Bowie, because he is my all-time favourite and obviously I love a good quote:

 'I don't know where I'm going from here, but I promise it won't be boring.'


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