Gotta take the good with the bad!

The past few weeks havent been the best for me. I started getting a chest infection a few days after i finished oral antibiotics. And i noticed i was struggling to stay awake just this constant tired feeling. So on a Monday i decided i would go to hospital like i normally would and ask for IV antibiotics the one that i can into my blood stream through a small needle under my skin. So they gave me 2 weeks supply and i began them at home. Over the next few days i got worse before the drugs had time to work. I became very ill with chest pain everytime i coughed. Which was pretty much constantly. I could only manage to walk to the bathroom as i was so short of breath. Each day either my mum or dad was visiting me to tidy up and make me meals. It came to the Thursday and i had to have help with going in the shower as i couldnt breath well at all. My mum helped me and i just sat in the shower seat struggling to breathe whilst she washed my hair. These are the times when i have a little cry because it am under so much strain. I manged to wash myself and my mum lifted my mood by having a little laugh with me but trying to use so much effort to wash myself and breath so fast and heavy i couldnt manage to laugh. I realised i was breathing oddly like there was no rhythm it was fast then slow then in and out but i felt like i was gasping. I was also getting really bad headaches when i slept. So i would have to wake up to try to get rid of them,also if it wasnt them it was the coughing or pain i couldnt win. So the saturday came and i decided i wasnt getting better quick enough i had to go back to hospital. I got admitted and the done a blood gas which is blood taking from the artery in your wrist ( pretty painful ) and it showed i wasnt getting rid of the CO2 in my body and it was high.This high level was causing me to feel drowsy, confused, tired and have headaches. You breathe in oxygen and breathe out co2. Im lead to believe my body was needing oxygen so it starts to breathe quickly taking in alot of oxygen but not having enough time or strength to breathe it all out, causing the high CO2. So i also had to have more nebulisers and physio sessions to try clear all the thick sticky mucus in my chest that was making me feel like i was drowning on the inside. On the Monday my physio showed me a machine called Bipap. It is a machine that is a non invasive ventilator. Which means as you breathe in it senses your breath and it pushes air in along with you and you breath out normally. It feels kind of forceful and it manages to double the volume of the air in i breathe. The first night i had it on for a total of 4.5hrs which is good going for it being first time using it. Once that amount of time went past i had to ask nurse to take it off as it isnt the most comfortable thing. Whilst using it for the first night a nurse had to come in every 15mins for the first hour to measure my oxygen level,heart rate and blood pressure then every hour after that which isnt great neither when you are trying to sleep. However the next night i only managed 2 hours which wasnt good. So i was told the next day by the physio that if i want to have the CO2 levels brought down i needed to wear it longer :( .The 3rd night i wore it for 3.5hrs but woke up and had like a panic attack and ripped it off, i felt so claustrophobic.I then went to sleep till 7am and buzzed the nurse and asked if she could re-fit the mask and that i was ready to wear it some more. So i fell back asleep with it on until 10.30am . The physio was more happy with that amount of hours ;). So a doctor came and done another blood gas test and the results showed that the bipap had helped and brought my CO2 level down!! But then i had to not wear it the next night and have blood test in the morning again so they could see if it was the machine that helped bring it down or because the antibiotics were getting rid of the infection. The next blood results showed that it had went up ever so slightly so the machine did help. Fortunately i got home after being in hospital for 6days. Since then i have mainly been at home resting continuing with another week of IV antibiotics. I usually on have 2weeks of antibiotics but because it was a bad infection i had 3weeks. I also got started on insulin at night before my overnight feed that i get through a tube into my stomach. I had to have insulin roughly 6 years ago for a few weeks. Im hoping im not on insulin this time for much longer.
These type of bad infections cause extra damage to my lungs which cant be fully fixed. Each infection deteriorates my lungs that one big further. I have to say i have never had an infection quite as bad as that before it was actually very scary and got me down a lot, especially when i felt i wasnt getting any better. As i know that it is common for people with Cystic Fibrosis to have a bad chest infection that can kill them and they cant recover from. So infection isnt taken lightly. Nor do i want people who are ill to come near me!

But i am pretty much back on my feet again making each day busy ones :)

The month of August - incredible 4 weeks

Just a blog post on 4 incredible weeks iv had that id like to share with you.
The reason I am sharing is to let you know how much I am living life to the fullest, grabbing those fun filled opportunities, even if I am in a wheelchair and need oxygen I wouldn't say I am having any less fun than the next person.
The first thing i done was go out after midnight with 2 friends and watch Shooting stars up the hills as there was a meteorite shower. Something i have always wanted to do and it was incredible! So pretty and exciting to see them!

The second thing I done was met Charlotte from Geordie shore again. I am a bit obsessed I think haha. She came to my local night club Fubar. I think I like her so much because I see myself in her. I chatted to her and she could remember meeting me back in January at City nightclub which was nice. Was a quick minute convo about being on transplant list and she wished me luck. Just that short minute was amazing to me! Sad but true!
The next thing I done this month was go to my big cousins wedding. She looked stunning in her dress. The wedding ceremony was so beautiful to watch and I cried a few times. To witness love so pure was very touching and it was an honour to be there. The meal afterwards was lovely and I really enjoyed it. And the entertainment at night a live band then at 10pm a live pipe band out in the garden with a highland dancer was a brilliant surprise. A very traditional Scottish wedding that couldn't have went better.
The next day I went to Bellahouston Park in Glasgow to see GBX, my fave DJ Steve Aoki, Tinie Tempah and then Avicci. The weather was pretty good just one little shower. My Steve Aoki came on and I screamed with excitement I just love his tunes. Inmy opinion he is the best because every other DJ just stands at decs and plays tracks, he pours champagne over people, has a blow up boat that he jumps in and crowd surfs or gets audience members to jump in. And also my favourite thing is he "Cakes people" it is his signature thing. He is from Miami and sometimes does upto 3 gigs a day over different places around the world. He has his private jet which makes getting around easier. Many people world wide want caked by him. There was once a guy who got caked in his wheelchair as he was being crowd surfed in it, pretty crazy so I joked that I would crowd surf in mine and get caked at this gig. However I never :P. Tinie Tempah put on a great performance and I forgot how many hit songs he has had. My best friend Louise loved it and was great to see her having a great time. And lastly was Avicci DJ and he put on a pretty good show too.
The next gig a few days later was Eminem. I had been wanting to see him in concert since i was in primary school. I have heard bad stories about him miming and not turning up to performances. But he was sensational and i enjoyed rapping along to all his songs! Luckily we got the wheelchair viewing platform again so got to see a great view.

A few days later after that and it was my weekend away to Cheshire to the creamfields festival with my big cousin Aimee and my best friend Jamie. We had been looking forward to this for months. It is a dance festival with DJs pretty much like TITP but just dance music. I got my case packed, picked up Aimee then Jamie and we were off. A long 4 hour journey that involved constant singing, banter and educating Jamie on Woman haha! We arrived at our travel-lodge and the room was perfect for our 3 night stay. Double bed and a wee camp bed for Jamie haha! Jamie fell asleep first and i tried to draw on him but my LOUD laughing didnt help and he woke up. Before heading out next day we filled out caprisun pouches with our alcohol and stashed them in the wheelchair ;) We went to a Morissons for brunch first. When we got there it was such a sunny day however Jamie realised he had left his hoodie at Morissons but luckily we would pick it up during brunch the next day. The place was amazing tents and stages were playing the most amazing music. We knew this weekend was going to be great!  What i did notice was everyone kept coming up to me to shake my hand or high five me in my wheelchair...you would have thought i was a celeb. They were just thinking it was cool i was at a dance festival in a wheelchair. I even got a nice kiss from a cute guy, being in a wheelchair aint that bad nor does it me back from anything!The only downside from being a wheelchair was my best friend and cousins having to push me for 2 days around a field. Which they done so well and if it wasnt for them i wouldnt have been able to go! The vodka also went down great that day i was ever so tipsy. The next day i didnt drink but Jamie did so i had the job of driving to and from the gig. Fairs fair! On the sunday i had decided i was going to get front row for my Fave DJ Steve Aoki that i had previously chatted about up there ^^^. I managed to edge my way in to the front row with my wheelchair pressed right against the barrier. Not long after he had been on stage he noticed me and threw me water making sure i was ok! I raved away in my wheelchair stretching my hand over the barrier.

You can see in these pictures. Like is said previously Steve the DJ likes to through cakes on peoples faces so each time he borught a cake people were pointing at me and i wanted to be caked so bad. On the last cake he walked straight over to me and stood above my wheelchair and said "Are you sure?" and i said yeaaahh cake me! So he threw the most heaviest cake right onto my face. The crowd went crazy and everyone washing pushing forward. The cake was EVERYWHERE!! in my hair, my eyelashes, my ears, in my top, all over my seat in the handle grooves. It smelt and tastes awesome! Steve then stood over the barrier and asked if i was ok! I stood up and hugged him and said "I LOVE YOU" and he said "I LOVE YOU TOO" in his american accent. He made a young girl very happy. Such a great guy!So i left the tent and i was buzzing and fans of his were coming over and high fiving me saying "YOU GOT CAKED BY STEVE AOKI!!!" and im like "YEEAAAAHHHH" haha. Jamie just kept saying "I KNEW IT, i knew he was going to cake you i knew it i knew it!. So i feel very lucky to be some of the few to be caked by him as world wide people want that to happen to them. Such harmless fun that is so entertaining. Then we sat and watched AfroJack, LikeMike and Dimitri Vegas then David Guetta. The stage lightening and flames are some i have never seen before they were so impressive. And the fireworks at the end of the night were phenomenal. There were fireworks at our stage and the south stage going off. I must say i have been to TITP in Scotland a couple times but never have i seen a place so friendly and have better effects and standards here. The rides, the foods, the amount of stages.

 

Well they are some pictures that show you the extent of the cake mess. Also there is a picture with the celebrity Chelsee Healey who we met. She is known for Waterloo Road and being on Strictly Come Dancing.
All in all Creamfields was amazing and i cant wait to go back. I just cant wait for the time i go with no wheelchair and i can rave for a full 12hours! The DJS wont know whats hit them!