Just breathe

It's supposed to be easy, supposed to be something we do each minute of each day without giving it a second thought, it's supposed to be natural. Breathing is supposed to be easy for all of us now having CF I am well aware that breathing can be hard sometimes but this week breathing has become like a war zone, a constant battle and I am exhausted, the front of my chest and my sides are aching as my muscles work over time while I struggle to breathe. I knew this journey to transplant was going to be hard but I wish I had known just how hard it was going to be.

The last time I wrote I was at home I was struggling a bit with a few days of temps and just not feeling 100% so after 4 days at home I'm back at gartnavel again ! What can I say I guess I just love the place. Again I'm gutted but know it's the best place for me right now. A week has nearly went by and I have really struggled through needing oramorph and lorazepam every hour just to breathe, this has made me so sleepy. Also the IVs are making me feel sick but there's plenty of good anti sickness for that. So here we are back here again but after nearly a week things are not any better even though my CRP is up and down it's not horrendous which is a good thing,

Today had been hard I guess it was all a bit to much and I lost it emotionally crying in front of my doctor nice one clo ! He has decided to start a new IV tomorrow so hopefully in the next few days I start to feel better its an infusion though so will be here for another two weeks but I need to feel better I can't go on like this. Like I said I got upset so did mum it was like let's see who can cry the most ! I know my doc felt bad but it's not his fault it's not anyone's it's life and it's just how it goes I don't blame anyone that's not fair.

I guess people just don't get it I mean what it feels like what it really feels like to fight every breath you take I'm not being dramatic here it really is hard and this week has took alot out of me but I proud to say I'm strong and one small fighter (all 4ft 11 inc) of me. I have only been waiting 5 months for transplant but I need it so badly I want it so badly it's one of those amazing gifts you think I will never get that it's to expensive or I'm not cool enough for that but if all I had to do was pay for new lungs I'm sure I would find the money somehow.

I was roaming twitter last night I noticed I had a new follower so I decided to check them out turns out she's a CF and is also on the list, so I was looking at some of her tweets as you do and this one tweet took my breath away. She had tweeted that she had been waiting for 40 months on new lungs now and would never give up hope. To me that's inspiring and so strong I hope she gets that call soon. And here I am having a meltdown after 5 months, it makes you stop and really think for just a minute there's always someone out there having an even worse time than me. I know people are only asking and trying to be nice but it really annoys me when people ask 'so have you heard anything about lung yet' I mean really ? I know they don't understand how it works and I try to remind myself they just don't get it but it does get annoying.

The settings on my NIV have been changed today allowing me to gain a bigger breath this has really helped and made for the first time in nearly a week breathing a little more easy and I have not had to have any oramorph or lorazepam all day I am totally exhausted as I have probably worked a bit harder than usual but that just means I will hopefully sleep soon.

I am missing home so much these days it's the.simple things you miss like my own bed, my tv, my room, the couch just my home in general. I miss my old life so much I feel so restricted now I hate not being able to just get up and have a shower without help or making food for myself. The past few days I have just wanted to take this mask off my face and be able to breath without it and the oxygen. I also just want to escape go somewhere nice the beach again to feel the sand between my toes and hear the sound of the waves also the wind in my hair it's my idea of heaven. Hopefully I will get on holiday after transplant one day soon until then I have a good imagination luckily.

Well my eyes are rolling now and I think I have you all up to date sorry it's quite a depressing one but writing it really helps me cope I am a really positive person I promise my next blog will be happier.