Day 13

Have you ever had your heart broken? Have you ever broken a heart?

My heart has been broken when friends have died. I have been upset when I have split up from previous relationships but I don't think they have ever left me heartbroken.

To my knowledge I have never broken anyone elses heart.

Day 12

If you could wish for anything that would come true, what would you wish for?

I would wish that D got to have full custody of A, so that they were both happy all of the time. D is an amazing father and deserves to spend more time with his son than he is currently allowed.

Day 11

Who can’t you live without?

 I can't live without my mum. She is my constant, my rock. She is always there to support me no matter what. Even if its something stupid I have done she will always be there to help in anyway she can. I don't how I will cope when my mum is no longer around to talk to and turn to. We speak almost every day in some format whether it be by call, text, fb or in person.

Day 10

A dream for the future

A dream for the future, hmmmm I dream of having my own children with my fiance and owning our own house. The achievable part of this dream is having our own house that we can do what ever we like to it without having to worry about what the letting agency will say about it!

I dream that my life will be full of happiness and laughter and filled with people I love around me every day.

Day 9

Hopes, dreams and plans for the next 365 days

Wow, hopes, dreams and plans for the next 365 days!

Well some of the plans in place for the next 365 days already are:
Family holiday with the soon to be inlaws
My wedding to my wonderful fiance
A honeymoon
Celebrate birthdays and christmas :)
Complete a birth sampler for my goddaughter and my soon to be born nephew

My hopes for the next 365 days:
To get off night feeds within the next 2 months
To remain as healthy as possible to enjoy life
To get the house decorated in the little ways to make it more homely

I dont really have any dreams for the next 365 days at the minute, still living in the here and now after the huge reality check of last month.

Day 8

What’s in my handbag/purse

In my handbag there is:
My purse
A creon pot
An inhaler
Packet of sweets
A whole heap of insulin needles
A load of receipts
A pen

I think thats it, its bascially full of some rubbish half the time and when I go out it has more stuff in it as well but that is what is currently in my handbag!

Day 7

My worst habit

This is probably biting my nails.

It's a habit I have never really been able to break, I've even tried using that nail stuff that is meant to taste horrible to put you off biting them- didn't work.

I can't think of anything else, I am sure I have many habits that other people could see as my "worst" but this to me is mine.

Day 6

A song that makes you cry (or nearly)



It was played at my 11year old friends memorial service. 11 is too young to die, she had CF too. I was 17 and ever since I can't listen to this song without crying

Day 5

Your dream house

My dream house, hmmm the only thing I know about my dream house is that it will contain a room that is floor to ceiling covered in bookshelves filled with books. With just a comfy chair in the middle of the room, with a small table next to it with a lamp on it. So I can walk in pick up a book and curl up in the chair and be in my own world without any other interruptions.

The other thing my dream house will contain is a bay window with a seat, so I can sit in the window and watch the world go by and read a book in the window too!

I guess the final thing that would make my dream house complete for me is the permanent additions of D & A.

Day 4

Something you are OCD about

This is quite weird but if there is more than 1 light switch that operates a light they must be in the correct position. So if the light has been turned on by one of the switches, and off by the other. They aren't in the correct position relating to whether the light is on or off, so I have to go correct them.

Yes ok its weird but its something that really gets to me, especially if they have been wired up wrong and they cant be corrected so one of them is always out of the correct position argh!

Day 3

A photo taken over 10 years ago of you

So this was me when I was obviously alot younger, I got glasses when I was 10, so this photo predates that. I would imagine I was about 5 or 6 in this photo based on the trampoline that I am on.

Day 2

20 of my favorite things

Ok, so 20 of my favourite things, this is going to be a little bit trickier than one would imagine (i'm not sure if I can come up with 20!)

1. My fiance. Time with him is always one of my favourite things.
2. The mini-me. Time with the mini-me is also one of my favourite ways to pass my time
3. My crock-pot. I got it for christmas and I love it! Definitely makes cooking easier, plus you get to smell the deliciousness of your food cooking all day long. Can't believe I've lived so long without one.
4. My kindle. Loads of books with me wherever I go without needing a suitcase to carry them all, of course this is going to make my top 20!
5. Jigsaw puzzles. Another favourite way to pass the time
6. My family. Enough said.
7. My god-daughter
8. The big bang theory. Ok I know this is a tv show but this is one of my favourite TV programmes to watch and always makes me smile when I see it and even sometimes laugh out loud
9. Goodnight Mister Tom by Michelle Magorian one of my favourite books
10. Jodi Picoult. One of my favourite authors. I own all of her books either in physical copy or on my kindle (and in the case of quite a few of them physical copy and on my kindle)
11. Pic'n'mix. My current favourite sweets! This year alone I have already had 4 pic'n'mixes, normally I have about that many in the entire year.
12. Cuddles
13. Taking photos.
14. The internet. It allows me to talk to family and friends who don't live close enough to just pop round for a cup of tea.
15. Beavers
16. Ducks. Rubber ducks in particular
17. Borrowing my fiances hoodies. They are so comfy and warm!
18.  Julie Walters. Fast becoming one of my favourite actresses to watch.
19. Sarah Millican. Easily my favourite comedienne.
20. The Sound of Music. A childhood favourite that I can still watch at anytime now and sing along to all the songs!

Hurrah! I made it to 20 favourite things, it was a tad tricky but I made it!

Day 1

A photo that makes you happy

this photo makes me happy, I made it my computer background when I was in hospital and the cheeky grin on A's face kept me going plus it was a reminder of all that I have to fight for and stay well for. So this photo always puts a smile on my face whenever I see it, plus I got D in a christmas jumper which always makes me smile! :D

30 day blog challenge

So I have decided to start a 30 day blog challenge, anyone interested in joining me in it???? I figured seeing as I still have 5 weeks of rest in front of me I might as well find something to do that fills my time in whilst sat browsing the internet instead of pressing the refresh button every 30 seconds on facebook! So below is the challenge and today shall be day 1( will post it in a seperate post).

•  Day 1    A photo that makes you happy
• Day 2    20 of my favorite things
• Day 3    A photo taken over 10 years ago of you
• Day 4    Something you are OCD about
• Day 5    Your dream house
• Day 6    A song that makes you cry (or nearly)
• Day 7    My worst habit
• Day 8    What’s in my handbag/purse
• Day 9    Hopes, dreams and plans for the next 365 days
• Day 10  A dream for the future
• Day 11  Who can’t you live without?
• Day 12  If you could wish for anything that would come true, what would you wish for?
• Day 13  Have you ever had your heart broken? Have you ever broken a heart?
• Day 14  What do you like most about yourself?
• Day 15  What do you dislike most about yourself?
• Day 16  What do people notice about you?
• Day 17  What’s something you wish you could say to someone?
• Day 18  Whom do you admire the most?
• Day 19  What is your goal in life?
• Day 20  What are the 10 most significant events in your life?
• Day 21  If you died tomorrow, what’s one thing you’d regret not doing?
• Day 22  What’s an inside joke you have with someone?
• Day 23  Two months ago, where were you and what were you doing?
• Day 24  Do you have saved text messages?  If so, who are they from and why do you still have them?
• Day 25  Write 5 messages to 5 different people without using names.
• Day 26  What’s something you’re really excited for?
• Day 27  What do you feel guilty for doing?
• Day 28  Tattoos.  If you have one, post it and its story.  If not, what do you want?
• Day 29  Picture of your makeup collection
• Day 30  When were the happiest days of your life?

A day in the life of.....

....someone with CF!

Yep I'm currently on a CF obsession, its taking a while to readjust to what a normal life is going to be now. So I decided to do a little blog outlining my day, with a few photos of illustration as well hopefully.

The routine written down:

So 5days a week I am woken up by the alarm on my night time feed pump going off saying it has finished, so the first job of the morning is to then flush my ng tube with at least 50ml of water, sometimes 100ml depending on what my fluid intake had been the day before (if it was poor then this is a good way to get fluids in without alot of effort!). After the flush I then remove the ng tube, which is about as icky and pleasant as it sounds really, pulling the tape off my cheek and then pulling the tube back up from my stomach, through my throat and back out of my nose!

Then I have been doing my morning nebulisers:

Dnase using the pari turbo boy (takes 20mins), followed by
Hypertonic saline using the pari turbo boy (20mins), followed by

A brief break to do physio using the incentive spirometer. Due to the recent pneumothorax I am not allowed to use any kind of physio technique that puts positive pressure on my lungs for at least 6 weeks, which basically means I can't do any of my normal physio that I would. So I was given this device instead, which basically the aim is to keep the yellow ball in the smiley face area whilst taking a deep breath in (negative pressure in the lungs apparently), allowing air to get behind the mucus to make it a little easier to bring up. Both of the nebs done before hand are designed to do things like thin and make mucus looser to make it easier to bring up during physio (joyful!). This takes about 10mins.

Then it is onto the third and final nebuliser of the morning:
Tobi via eflow (5mins, this is an antibiotic to keep the infection that I permanently have dampened down so it doesnt cause any unnecessary problems).

Then it is time to get up! Yes I could do all of these after I have got up but quite frankly I'm feeling lazy at the minute and it's nice to have an excuse to stay in the warmth of my bed a little bit longer.

This takes me to about 9am roughly. The next job of the day- washing out the syringe that is used for doing the flushes with the night feed (you get 2 a week on the nhs at home, so they have to be washed out and reused!, in hospital they just use fresh ones every day morning and night) and cleaning the nebuliser mouthpieces (boiling water on them, preferably once a day but I've slipped out of that habit they should also be sterilised, which is why I have a baby bottle steam steriliser in my kitchen). This is also a good excuse to make the first cup of tea of the day! Then its time to take the breakfast medications and check my morning blood sugar levels:

Azithromycin (1), Ursodeoxycholic Acid (4), Acetylcysteine (1), Vitamin E (4), Multivitamins (4), Domperidone (1), Slow release sodium chloride (2), Strawberry fortisip (1or2 depending on how full I feel after the night feed), Novarapid insulin, Creon (Variable depending on what I have to eat at this point).

So thats all predominantly tablets (amounts in brackets) except for the fortisip which is a special drink packed full of calories to help me gain weight and the insulin obviously which is an injection!

Morning time meds and nebs:

*sigh of relief* its a break time from medications!! That is until about mid morning where I have been instructed I should be having a small snack of some kind, which then means more creon and more insulin depending on what I eat.

Then lunchtime! This involves the following:

Check blood sugars
Fortisip (1)
Creon
Novarapid insulin
Domperidone (1)
Acetylcysteine (1)

Again middle of the afternoon is more medication type stuff. I should ideally be fitting in another form of physio here, maybe another 10min incentive spirometer session or depending on tiredness levels 10mins on the wii doing something active like wii fit or one of the dance games (Excercise is just as important if not more so in a person with cf, it just then means I need to find even more calories to cover those I have burnt doing excercise!), another snack so more creon and more insulin.

Evening meal time, you've guessed it more tablets!

Check blood sugars
Creon
Novarapid insulin
Acetylcysteine (1)
Ursodeoxycholic Acid (4)

Then it gets to evening time, that traditional time where you get to relax and unwind for the day before you melt into sleep, well before I can do that its time to repeat some of that routine again:

Dnase (20mins)
Hypertonic Saline (20mins)
Physio (10mins)
Tobi (5mins)

Then it is decision time, do I want to eat anything else before I go to bed as it is now about 8-8.30pm and now is the time to do it before I pass my ng tube. As alot of foods are damn near impossible to eat with the tube in as they get stuck on the tube pulling it further down your throat than it should be which is not pleasant and makes you feel like you are choking as the food has got stuck. Ok, so no food, now its time to pass the ng tube.

So this means I need to get to my chest of meds and get everything out ready in one go (might as well saves time than making two trips)
Bag of feed
Giving set
Ng tube
micropore tape and hypafix dressing
Ph strips
Tissues
Also need to gather from the kitchen: jug of water, syringe and glass of water with straw

Right were set, so now its time to pass the ng tube. First things first measure the tube by putting the tip in your mouth and hooking the tube over your ear and pulling it taut down your chest, feel just below where the bottom of your rib cage is and hold that part of the tube, let go of it from your mouth and 1 handedly get some micropore tape and wrap it round the tube where you measured (this is the point where your stomach is so you know how much of the tube has to go in your body), now you are readt to pass it. Which is pushing it up your nose, making sure you angle it when you feel something poking at the top (makes you cry if you keep doing it to hard), so it goes over the bridge of the nose and starts to go down the back of your throat. Remember to multi task here as it starts to go down your throat also start swallowing, when you can feel the tip at the back of your throat, now is the time to start drinking the glass of water. It stops your gag reflex kicking in and helps pull the tube down into your stomach, so whilst drinking dont forget to keep pushing the tube up your nose, otherwise you run out of drink before all of the tube is in. Stop when the tape has reached the bottom of your nose, get a second piece of tape and secure it across the marker, then a third larger piece which secures the tube across your cheek. The tube then sits nicely tucked behind your ear so it isn't dangling pulling on the tape you have just stuck on your cheek. Lucky person that I am is actually allergic to the micropore tape they use as standard for this so have to cut up some hypafix dressing to the correct size and use that instead! Its not fun trying to piggle the backing of that dressing on a piece thats 3cm squares wide and 4cm squares long (if that)! So the tube is in now its time for the next step, connecting the empty syringe and pulling back some stomach contents (yum) to test the acidity on a pH strip. Anything 5.5 below tells you that you have successfully placed the tube in your stomach and not in your lungs (which can happen if you don't swallow early enough at the point where you feel the tip of the tube in your throat). You then need to put at least 50ml of water down the tube (assuming you have correctly placed the tube). All of this process takes about 10-15mins.

Night feed all set up ready to go:

so this now takes me to about 9pm in the evening. The next decision of the day- what time do I want to be woken up in the morning. The night feed takes 10hours to go through, so whenever it is started you will get woken up 10hours later like an alarm clock. I try and start the feed at about 9.45-10pm, so I am waking as near to 8pm as possible. So this gives me about half an hour to just chill and maybe get some cuddles in with the fiance and maybe go and have another cup of tea. About 9.45pm the next very important step is a bathroom stop as the pump stand isnt particularly portable making it difficult (not impossible just more difficult) to visit the bathroom in the night and then time to set the feed up and get it going. So hang bag of feed on top of stand, attach giving set, turn pump on, prime the giving set so the feed is at the end of line and I'm not pumping air into my stomach, draw up another 50mls of water in the syringe and put that down the line, in case there is anything blocking the end, attach giving set to tube and press the start button, bobs your uncle were away. I'm now in bed connected to a 1000ml bag of liquid which will give me 1500calories and various other important nutrients over night. Then I need to remember to take the following or be screwed the following day:
Creon (8)
Domperidone (2)
Levemir insulin
Insulatard insulin

If I don't take these, then my blood sugars will run high all of the next day, giving me even less energy and less of an appetite than normal, it will also mean my body won't have really digested those 1500 calories properly and all that can be said about that is imagine your bathroom visits after getting steaming drunk followed by a kebab and curry (not pleasant and can even be known to evacuate an entire household because of the smell).

Its 10pm and its finally time to try and get some good sleep in, whilst making sure I don't lay on the giving set connected to the tube because then the pump will alarm at you because it can't flow properly and is blocked. Which means stopping and starting the machine (30second job but highly irritating to the person trying to sleep next to you) or trying not to roll over to many times and getting caught up in the tube so you get stuck (yes its possible as I managed it last night and had to wake D for him to untangle me so I could move my arms again).

Connected to the night feed whilst I was in hospital:

So inbetween all of that I get to do everything else a person needs to do in a day and if there is anything in particular I need to do in an evening for example beavers or getting invited out somewhere, well the entire thing needs navigating and organising and on those days when I need to be out the door up, dressed, fed and medicated by 9am? Well that will now involving going to bed really early so that the pump will alarm at 6.30am to give me a chance of being out the door when I am meant to be.

Yet despite all of this, I still remain positive and smiling because I get to share it all with someone amazing, who will hold me close whilst doing treatments and is even helping me out with some of them and most importantly of all is making me laugh and brightening up my day at every turn :)
A weeks supply of tablets all ready to go:

To end, my months supply of medication (minus ones which belong in the fridge!):

Feeling blessed and lucky

These last three weeks have been hard. There is nothing that can deny that these last 3 weeks have been the poorliest I ever remember being and having to face up to, as an adult I was expected to cope with everything they told me without asking them to wait for my mum to be there, especially when I was potentially having a chest drain fitted. Every other major procedure I have had in my life (anything which involves anaesthia and being cut open to me is a major procedure, especially when they can occur life threating complications if anything goes wrong) my mum has been there to go down with me and leave me at the doors of the theater, not this time though. I was doing it alone. Sure my parents visited everyday and my fiance visited every other day but rarely were they there when the doctors were telling me these things. So yes a pretty scary 3 weeks (especially when you are then stupid enough to google all the proper medical terms once you get home!).

So why do I feel so blessed and lucky? because my fiance is still there by my side. If I was finding it pretty scary at times then I have no idea how he must of been feeling. Talk about a baptism of fire into what the true reality of living with someone with cystic fibrosis can be like. Sure he knows I have tablets and nebulisers at home and has seen me coughing my guts up. However he has only ever experienced one set of IVs before and they were done at home and I wasn't anywhere near as bas as I was this time.

I just feel so lucky that I have found someone who can see through all of the medical things that need to be done and still wants to be with me. Who is happy to spent nights curled up on the sofa or in bed watching a DVD because I'm just too damn tired to be doing anything else. Someone who is happy to walk in the door after working 8.5hours and tell me to sit down whilst he does jobs round the house, jobs that I should be capable of doing but currently not. It is so frustrating currently not being able to do much of anything for a number of reasons, a) because I have been told to rest for 6 weeks with no strenuous activity (who knew this included hoovering!) and b) because my body is physically stopping me from doing too much as it starts complaining in pain. I just about managed the drive home from my parents house (40mins) but halfway through my chest started to hurt and all I was capable of doing when I did get in was sit on the sofa for an hour before the pain went away.

I'm pretty certain I don't deserve someone as loving and kind as D in my life and I can only hope he truly knows just how much he means to me and how much I love him and would do anything I could for him.So for as long as he is part of my life and his wonderful, cheeky, smily mini-me (who I have missed so much in the last 3 weeks its been unreal) I will always continue to feel blessed and lucky no matter what ever else life has to throw at me. As with D & A by my side, I know I can get through anything.