Accepting That I'm Not 'Normal'

Bit of a random post I know, but the thing is lately I've been trying really hard to accept the fact that I'm not normal. Not in the 'I'm so quirky and different' way but the way that my life is now is not the same as the average 22 year old's.

A fraction of my medication

I mean CF has always meant that I've had to live my life a little differently - since I was diagnosed aged 2 I've had to do a pretty intense routine of chest physio, nebulisers and tablets that takes hours every day. I take at least 40 tablets a day and according to my phone calculator that means that last year alone I took at least 14600 pills - a crazy amount, but taking pills is actually the second easiest part of having CF for me (the number one easiest is obviously the high fat diet!)

So when I see someone making a fuss over swallowing a paracetamol I'm like 'Really?' because I forget that even though it's normal for me the majority of people aren't popping pills every day. As all of this is something I've grown up with I don't see my life as anything out of the norm, even now with my health as bad as it is.

Which is the big problem. It took me a long time to accept that I needed a lung transplant, because I kept thinking (and still do sometimes) that I'm not ill enough. It's either because I am:

A) In denial ('No not me, everything's fiiiiiine!')

B) Incredibly stupid ('Ohhhh, so the fact I'm on oxygen means my lungs are rubbish?')

C) A stubborn ass ('I'll just go on the list when I'm more unwell, I'm fine for the moment thank you.')


I shall go for a mix of all three! But the big thing for me that got me accepting that I needed to be listed was a conversation I had at Harefield with one of the lovely transplant nurses. She pointed out that while my 'normal' has always been a bit different to other peoples my life is now not even 'normal' for me. Here are some of her very valid points - It is not normal:

                                            - To be attached to a machine or oxygen cylinder 24/7 in order to breathe

- To use a wheelchair for walking long distances

- To be out of breath after climbing a couple of steps

- To be out of breath bathing/dressing/eating

- To be out of breath talking


And when I say getting out of breath I mean oxygen sats dropping to low 70's even on oxygen. I thought of all the other things I get breathless doing that I never used to before and thought 'Hmmm, ok maybe this is not how life should be normally.' I know, I know, you'd think the oxygen thing would be a dead giveaway to me but like I say even that has become normal to me - like if I'm out shopping and someone does a double take or looks a little too long I think 'Oh no, do I have lipstick on my chin?' By the way, while I'm on that subject I don't care if people look because no one is being horrible - when you see something different or unexpected it's just a natural reaction so it's not something I feel upset about as no one is being rude.

Not your average fashion blogger accessory...



As I said, a bit of a random post but one thing I would really like to do is document my 'transplant journey' if you will on here because in real life if people ask me things I just say 'I'm fine!' so maybe it'll be good to get it all written down somewhere where people can kind of understand without me having to say things out loud (I'm too British and reserved and awkward to talk about feelings.)


So yes, these are the obvious reasons I'm not normal - I'll be keeping my other weird quirks to myself ;-) 

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