day 5: not mine
the radox bubble bath i used in my bath this evening is not mine. i borrowed some to soothe my aches. i love a hot bubble bath when it's dark outside and your music on :)
absolutely wonderful <3
April Day 2
today has been a real struggle. i have barely been off my oxygen all day and when i did it was so hard. as if someone was covering my nose & mouth whilst I was trying to breathe. i had extra inhalers and salbutamol nebs to see if they opened me up but they only have a 5 minute relief and then it came straight back. my chest is okay, there's no infection and i am hardly bringing anything up which is normal for me but I was slightly wheezy which isn't normal. i went to my aunties for tea but came back earlier than i anticipated due to needing oxygen and just not feeling comfortable because of that so i drove home, fell into the kitchen gasping and dropped my coat and mittens on the table desperate to get to my oxygen and that's how i have stayed all night. it's definitely gotten worse since going outside. i'm not quite sure what's going on so gonna give myself another day or so before possibly calling my cf team just to double check with them. for the time being lazy days on oxygen in pyjamas sound like the best course of action. a few people have mentioned about this air pollution so maybe that's contributing? I guess time will tell :)
Day 2: in my hand
i completely forgot to do this today and i just remembered last minute so grabbed my phone and all i had at hand was nothing at all. then I remembered something i think is quite random and unusual. i actually have a freckle in the palm of my hand near my little finger and ring finger. it's only small and quite pale but i have had it for aslong as i remember so must be a freckle.
i think it's quite unusual to have a freckle there isn't it?
i'll be better prepared tomorrow :)
April photo challenge.
i have been out of hospital for just under a week now. i've kept up with my feeds except missed one and have been going on the bike each day on level 1 for 15 minutes. my legs are killing so it must be doing something good if it's feeling bad :)
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i just hope the hard work pays off and i have something to show for it when i go back in hospital in a couple of week. for now though, i have lots of plans to keep me busy & occupied. i try to cram as much into my weeks at home as i can before i head back into hospital for the usual 3 weeks stints. so much to do and so little time, haha.
Ages ago, i did a photo a day challenge and i really enjoyed doing them, they have me something to do in the days and got me taking photos which i always say i never do enough. So i thought i would give this a go again!
April photo-a-day challenge.
day 1: something purple
this is my gorgeous CF bracelet made by Katie Gammon.
Katie makes these bracelets and some other ones herself. i think they're so pretty and katie is such a lovely girl. she also has cystic fibrosis and received her amazing new shiny lungs after having a transplant last year. she's currently back in school and revising to sit her GCSE's after missing a huge chunk out of school due to ill health, transplant & recovery. all in all, she's doing amazingly well with a few bumps along the way but still as determined as ever.
i shall post a link to her Facebook page where you can browse through her bracelets and maybe buy yourself or a loved one a gorgeous purple CF bracelet :)
Thanks Katie.
Katie Gammon's blog:- http://misskmgammon.blogspot.co.uk/
Katie Gammon's bracelet Facebook page:- https://www.facebook.com/pages/Katies-Bracelet-Boutique/1392554767654475?ref=ts&fref=ts
National Lung Allocation System Campaign
Last weekend, i wrote a status on my facebook saying, "more awareness is needed teaching the basics of transplantation and organ donation. the lack of knowledge in the general public is improving but it is still not where it needs to be"
I said this because i had just been commenting on a status where someone shared there opinion and others where throwing in their two pennies worth but there was so many wrong "facts" being thrown about and i couldn't sit back and watch these people mould their opinion and views around things that simply are not true or the way things are.
So i stepped in and corrected them on things, i wasn't aiming to change anybody's opinion but just wanted them to know how things actually are.
I don't know everything there is to know about transplant and organ donation myself but i knew enough to point these people in the right direction.
The biggest misconception that i somehow couldn't get them to understand was that CURRENTLY there is no "priority" when allocating lungs to people on the NHS active transplant list.
I don't know every single thing it goes off but i do know that depending on where you are at the time the call comes in determines whether you are to have the donor lungs or not. The closer you live to your transplant centre, the higher your chances of a call are. This Might mean that some poorlier patients are missing out on an opportunity they're in desperate need for just because they live further away than someone of the same blood group and size etc.
This is why the Cystic Fibrosis Trust is asking the public to take part in a campaign calling for a fair national allocation system for lung transplants. Hopefully it will allow people on the waiting list for new lungs to be treated purely according to their need, no matter where they live in the UK or how far the hospital is.
Due to there being no national lung allocation system, lungs are immediately first allocated to the closest transplant centre and in some cases this isn't the individual who needs it most at the specific time. So the CF Trust want everyone to follow a link, join the campaign and help to raise this to the government.
I think the link is worth a look and you can make your own mind up on the matter.
http://www.cysticfibrosis.org.uk/news/latest-news/transplant-report.aspx
Once you've read through the page, there's another link you can click on that says, JOIN THE CAMPAIGN.
you can then send an automated email to your local MP. You can add your personal touch or story to the email or you can fill your name & address out in a form and click send to send an automated email written by the CF Trust. Easy Peasy!
dear daughter... journal of a lifetime.
for christmas 2013, one of my dad's gifts was something called "dear daughter.. a journal of a lifetime"
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it is a hardback empty book that contains around 60 questions that are there to provoke a memory, a story, an idea, a thought.. basically an answer.
i fill the book in and give it back to my dad once it's completed and he can keep it forever to look back on or to share :)
i thought it was such a lovely idea and so cute.
i think i thought it was going to be easier to complete than i am finding it.
some questions are so thought provoking and i want it to be absolutely perfect. I also have a tendency to go on and on.. which is a little problem when i only have one small page per question. Baring in mine these aren't your simple questions such as, favourite colour, band, song, date of birth.
for example i'll tell you some of the questions and my reason for contemplating so much on what i'm going to write. i've bought a notepad to write everything out first before writing it into the book. page after page has been ripped out and tossed into the bin as of yet.
here are some of the questions :
- "tell me something about yourself that nobody else knows" - sounds easy right? WRONG! i am a very open person, i'm not private and i don't keep things tucked away safe inside my head to build up on me.. i open up and if not on here to everyone then to people i am the closest too. failing that; things that are supposed to be kept top secret are usually things you shouldn't have done with a friend or sibling so i have deemed this as one of the impossible questions!
- "what's your earliest memories?" - I HAVE THE WORST MEMORY. honestly, so far my earliest memory happens to be in reception and from that point i remember nothing except a few fragments from school and even those are things i can't be 100% sure on whether they're actually my memories or things people have told me or i've seen on old videos and pictures. i'd say the age of around 12-13 is when i remember chunks. that's dreadful for a 20 year old girl! why is my memory so bad?
- "where did you imagine your life to be at this point, have things gone to plan?" - NO. things have not gone to plan. hahaha
ahh it's not as bad as i'm making this out to be. i'm having loads of fun with it.. i just find myself coming to a standstill with some of them. i even find myself thinking so much things. it really has made my head whirl with thoughts, i've been in hospital for 2 and a half weeks and every nurse has commented on how quiet i've been or that i haven't been myself and theres nothing wrong.. i'm just daydreaming and in my own head so much.
i have jumped ahead of the book for a change and i'm in the section "future you"
for a long time, a good few years i have really focused on right now. i put off transplant for years and years because i was certain i could do something right now, i didn't want to look to the future and think "without transplant how long have i got left?"
last year when i decided transplant route was what i was going to go through with i had to, i had to look at the past and admit that there has been a big decline over the years even with improved treatments and compliance and added bits & bobs like niv, feeds etc. i had to look at right now and decide.. this is not what i want to do at 20 years old. i do not want to live my life dependant on fortnightly IV's, oxygen, feeds, costa del pearce, mum & dad.
i want my own life.
which brings me to where i'm actually going with all this..
future me.
my auto-pilot answer for what i want to happen in the next 10 years is: successful transplant & recovery, little rented house, car, sweet shop, happiness, marriage or long term relationship preferably with shaun, who i'm with now.
honest answer: i want to be healthier than i am now, i want to be happy, i want to be earning money, i want to have my own independance in a rented house, i want to still be in my relationship with shaun, i want to be financially stable.. i wouldn't mind if it was a struggle, i wouldn't mind if that sweet shop wasn't mine and i was on the till, i wouldn't mind if my car wasn't my beautiful black mini, i wouldn't mind if the transplant recovery wasn't an easy one and i had to fight and fight and fight.
i would because i have realised, looking at this new prospective and giving myself permission to view a future and not just the dreamworld one i usually gave. an honest hope, an honest want.
i realised, i want this future more than ever. i'm not so "if it happens, it happens" about it all anymore.
i am fully aware that i'm in no position to control what does happen but i just for the first time ever looking at this whole thing in a very real place.
i've been more than capable of coming home at the beginning of the week and i agreed to stay no less than another two weeks. i'm shovelling well over 3100 calories a day into this bag of bones body of mine to boost that result on the scales up by 9-10kg. i'm pushing myself on the bike and doing fitness sessions with mucularskeletal physios to boost posture, muscles and strenth by doing stretches, yoga, pillates and breathing exercises and i'm winning the battle with my niv (non invasive ventilator) every night and believe me i hate the damn thing but i'm doing it because i need that future! i really like the sound of it so much that i'm trying and trying and more motivated than i ever have been to work for it. i just hope the odds are in my favour.
what a difference a year makes
NOV 2012 --- NOV 2013
.....
a year ago this week, i was in a really rubbish place with my emotions and my head being so mashed up from so many things. i felt like somebody had grabbed my precious circle of what I perceived to be happy & perfect life and ripped it open letting all that happiness & perfection slip out and run away. i didn't have college or studies or work or friends to just fall back and engulf myself in. everything I had was this circle and that circle wasn't existent any longer.
i felt like i had lost everything.
i felt hurt, i felt betrayed, i felt scared, i felt lost and i felt alone.i have the biggest family that i have known and they all crammed around me & swarmed in to help wrap this little bubbling volcano up, yet it was the loneliest time of my life. i wanted some form of damage control but the damage was done and all that was left was so many emotions. Too many!
I did what i do best and kept them locked in a drawer in my head, then something else came along and I had to open the drawer and stuff more in, then something else came along and I had to stuff more in; then something else came along and I suddenly realised.. it just won't fit!
BOOM...
i literally felt my head & my heart burst.
if i could save all those tears that fell from my face over that long lonely period, i'd have caused a flood in costa del Wythenshawe! i spent a very long time in room 20 of pearce ward.
i have never divulged this information before because it's not something that I ever would have thought i'd have felt and i'm not willing to say exactly.i'll just say i have never been so low and hope i never will be so low again.i thought the feelings would never go and there was literally no light in the day anymore. it was dark, miserable and just sad.
everybody could see that i'd lost me & my sparkle and everyone could see that these feelings and things where really taking their toll and my papa would tell me to "flick the switch" and keep a smiley face going because i'd have visitors coming that at the time I wouldn't want. i had my mum & my dad stay over a couple of times just for a little bit of comfort and support on really bad days :)
i think "flicking the switch" and pretending I was feeling better actually started to make things turn around and eventually, a genuine smile would appear for a tiny part of a morning or afternoon each day. just that glimpse of light was the best feeling because i finally understood & was certain that this big black cloud over me wouldn't be staying. i knew it would take a while but i was starting to get glimpses of sunshine and I can hand on heart swear that i thought the horrid thoughts & feeling would never leave but they where!!
i clung to those little smiley episodes. i wrote down about them, i kept them in my memory when the light had gone and I was back in darkness again, i still remembered that those feelings would go and they would!! they where going much more frequently and eventually, the odds where against them. majority of my day was filled with happiness & light and slowly but surely most of the week was.
it took a couple of months for the dark bits to go completely but they did.during that time, a "to-do" list I had wrote whilst having one of the worst days kept me occupied. they weren't major things to be done. they were just small daily tasks.
a few examples are:
- sort wardrobe out
- get hair coloured & cut
- buy new nail varnishes
- tidy out bedroom
- go to subway for lunch at least once a week!
but my main focus was
BUILD CONFIDENCE IN DRIVING.
i had passed my test and had my own car but was so used to being driven around that i never drove. it suddenly dawned on me that I NEEDED to gain my independence back because I knew by doing that my confidence would just come naturally. so driving was top of my list as was keeping busy by planning things with people.
months zoomed past and I had gained so much confidence driving that it bothered me no longer and I loved driving!
I was feeling so happy and confident in myself that I just loved life again and I felt so happy & lucky knowing I had done it all by myself with a little help from my best friend emily and support from my mama, papa, auntie max, uncle neil & Christian!
I just had to keep swimming through that storm.
So everything was going great and I was sparkly and happy again and out of the blue without even looking for or expecting it an old friend popped back into my life and it took no longer than a few week and we were officially a couple.. as in actually Facebook official and everything! :p
That was just a little cherry on top to perfect it all really.
6 months later, i am as happy as can be, most confident I've ever been with how i am & how i look, making the most out of my time away from hospital and on the transplant list awaiting some brand shiny new lungs to help me really live the life I wanna live.
nothing too extravagant, just a cute little rented house, a job in a sweet shop ( preferably my own but i'm not picky :p ), happy with my little mr shaun & my dog Roxie as a little old lady and that would be splendid :)
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was looking at my photos on my laptop and found this which made me really want to write. so i'm writing. this text was the turning point to me finding my sparkle again. papa knows best!!
.....
a year ago this week, i was in a really rubbish place with my emotions and my head being so mashed up from so many things. i felt like somebody had grabbed my precious circle of what I perceived to be happy & perfect life and ripped it open letting all that happiness & perfection slip out and run away. i didn't have college or studies or work or friends to just fall back and engulf myself in. everything I had was this circle and that circle wasn't existent any longer.
i felt like i had lost everything.
i felt hurt, i felt betrayed, i felt scared, i felt lost and i felt alone.i have the biggest family that i have known and they all crammed around me & swarmed in to help wrap this little bubbling volcano up, yet it was the loneliest time of my life. i wanted some form of damage control but the damage was done and all that was left was so many emotions. Too many!
I did what i do best and kept them locked in a drawer in my head, then something else came along and I had to open the drawer and stuff more in, then something else came along and I had to stuff more in; then something else came along and I suddenly realised.. it just won't fit!
BOOM...
i literally felt my head & my heart burst.
if i could save all those tears that fell from my face over that long lonely period, i'd have caused a flood in costa del Wythenshawe! i spent a very long time in room 20 of pearce ward.
i have never divulged this information before because it's not something that I ever would have thought i'd have felt and i'm not willing to say exactly.i'll just say i have never been so low and hope i never will be so low again.i thought the feelings would never go and there was literally no light in the day anymore. it was dark, miserable and just sad.
everybody could see that i'd lost me & my sparkle and everyone could see that these feelings and things where really taking their toll and my papa would tell me to "flick the switch" and keep a smiley face going because i'd have visitors coming that at the time I wouldn't want. i had my mum & my dad stay over a couple of times just for a little bit of comfort and support on really bad days :)
i think "flicking the switch" and pretending I was feeling better actually started to make things turn around and eventually, a genuine smile would appear for a tiny part of a morning or afternoon each day. just that glimpse of light was the best feeling because i finally understood & was certain that this big black cloud over me wouldn't be staying. i knew it would take a while but i was starting to get glimpses of sunshine and I can hand on heart swear that i thought the horrid thoughts & feeling would never leave but they where!!
i clung to those little smiley episodes. i wrote down about them, i kept them in my memory when the light had gone and I was back in darkness again, i still remembered that those feelings would go and they would!! they where going much more frequently and eventually, the odds where against them. majority of my day was filled with happiness & light and slowly but surely most of the week was.
it took a couple of months for the dark bits to go completely but they did.during that time, a "to-do" list I had wrote whilst having one of the worst days kept me occupied. they weren't major things to be done. they were just small daily tasks.
a few examples are:
- sort wardrobe out
- get hair coloured & cut
- buy new nail varnishes
- tidy out bedroom
- go to subway for lunch at least once a week!
but my main focus was
BUILD CONFIDENCE IN DRIVING.
i had passed my test and had my own car but was so used to being driven around that i never drove. it suddenly dawned on me that I NEEDED to gain my independence back because I knew by doing that my confidence would just come naturally. so driving was top of my list as was keeping busy by planning things with people.
months zoomed past and I had gained so much confidence driving that it bothered me no longer and I loved driving!
I was feeling so happy and confident in myself that I just loved life again and I felt so happy & lucky knowing I had done it all by myself with a little help from my best friend emily and support from my mama, papa, auntie max, uncle neil & Christian!
I just had to keep swimming through that storm.
So everything was going great and I was sparkly and happy again and out of the blue without even looking for or expecting it an old friend popped back into my life and it took no longer than a few week and we were officially a couple.. as in actually Facebook official and everything! :p
That was just a little cherry on top to perfect it all really.
6 months later, i am as happy as can be, most confident I've ever been with how i am & how i look, making the most out of my time away from hospital and on the transplant list awaiting some brand shiny new lungs to help me really live the life I wanna live.
nothing too extravagant, just a cute little rented house, a job in a sweet shop ( preferably my own but i'm not picky :p ), happy with my little mr shaun & my dog Roxie as a little old lady and that would be splendid :)
