65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Wednesday, 25 December 2013

Christmas :)

So today is christmas and things are fantastic

I'm currently sat at my dads house having a sit down after opening all our presents, and there were so many, we have all been spoilt rotton!!
I writing this blog on my new keyboard for ipad that sara and ben brought for me, much easier to write with :)

Our festive celebrations started yesterday at sara and bens house for our traditional hot pork and apple  sandwiches, hot buffet and drinks. This year i baked 24 mini Victoria sponges which went down quite well, everyone said how light and spongy they were so i was happy :)

Today me and tom woke up, had a cup of tea and prepped the turkey then opened our presents.
Dinner is always at my dads so i cook the turkey at home, ben does the beef at his house then we all meet at dads to open the presents to each other and cook the potatoes and veg.

Im finding recently that adrenalin seems to keep me going through things, I seem to switch on autopilot then crash after the event, which is what happened with the fundraiser. It took me a good week to recover then the christmas prep started.
Me and tom are at his parents in kent for Boxing Day and im sure that once the 27th has arrived ill be ready for a rest.
As time goes on i am finding that im learning to listen to my body slightly better.
Yesterday after i was on my feet for a while baking i was tired out so instead of pushng on, i lay down for a while for my body to recoup before the evening.
Same as today, usually im head chef, well at least i like to think i am, much to ben and my dads annoyance, we all like to think we know best ;) I cooked the turkey this morning and now i am resting and actually allowing someone else in the kitchen for once, yes i can admit im a kitchen bully!!! However im sure the meal will still be lovely without my interference haha.

To say a few long days on a trot isnt hard would be a lie, but i want to do exactly what everyone else is doing today, be happy, feast on food, watch films, be with my family and take lots of photos for my memory books.
I am a real sentimental old fool and the gifts that mean the most to me are usually the ones that cost the least, yet have the most value to heart. 
Photo albums already full of pictures, notes, ticket stubs etc. Sara and ben obiously knowing that and knowing me so well have bought me a large "family" photo frame and have filled it with pictures of the family, i think i can say thats actually my favourite gift :) thats not saying of course that/i dont love the clothes, bag, shoes, perfume, smellies or anything else for that matter, i have been truly spoilt.

Days like today really make you value what you have and who you have, and i have the best family anyone could ask for.

“Gratitude means to recognize the good in your life, be thankful for whatever you have, some people may not even have one of those things you consider precious to you (love, family, friends etc). Each day give thanks for the gift of life.You are blessed” 
― Pablo

Merry Christmas Everybody

Sunday, 15 December 2013


I feel I'm very much stuck in limbo at the moment.

Medically I'm 'too well to be listed for my transplant' 
Thanks to a huge shortage in donors the window of opportunity has to be just right, not to well but equally not to ill.
On average people are sent for assessment between 35-30% lung function. My average I guess is 32.5 at best 35 at worst 28
However there are times I can go without oxygen, although very rare and i do stillI have some quality of life. But I'm increasingly feeling my quality of life is not as great as I would wish.
I'm finding I'm feeling exhausted more and more. Now I don't mean tired out, I mean exhausted.
I went to the town yesterday with Tom to do the last of out Christmas shopping. 
I opted not to use my wheelchair as that is sometimes more stressful, as trying to get in and out of aisles that are far to small, in a swarm of manic shoppers is no mean feat. Anyone that knows our town centre will know the distance I'm speaking of when I say I walked down from eastgate car park, to Starbucks to sit for a while and have a coffee, then on to boots, the works and primark. 
As I was walking back through eastgate to the car I was feeling increasingly tired, it felt like my legs physically couldn't carry me any further, my feet were like lead weights and my knees were buckling just trying to keep me going, it felt like someone had struck a match underneath my coat because the burning from my back was so intense where my muscles were screaming to rest, it felt as though I had run a marathon or done a hardcore gym workout every bit of me was worn out.

Now me being me, won't give up and I know I push myself far to hard but I refuse to give in, so I insisted Tom drove us to the garden centre, I managed to drag myself round a few aisles before I knew I couldn't take anymore. I needed more fuel so I upped my oxygen and we stopped for something to eat before stopping at pipps hill so I could buy a new blanket. (An essential in this weather) 

Last night sleep couldn't come quick enough, I was in bed and asleep by 10, which is where I stayed, soundo until 11.30 this morning.
I knew pushing myself yesterday would mean a tough day today, but when I woke up I had an intense pain in my lower back. My airways so irritated and tight, not to mention full of sputum from lack of physio yesterday evening that I coughed non stop for an hour, a real stomach retching, painful cough that was just going on and on. When I cough like this it feels like its never going to end, gasping for breath between coughs that are making me gag. After what seemed an age, i managing my inhalers and taking some strong pain relief I drifted off again untill 2.30

It's my friends babies 1st birthday today, and I was supposed to be there at 2.00. But with how I was feeling, aside from being late I was sure I wasn't going to make it at all. But somewhere determination struck to get out of bed and go and see Ava. I didn't want to miss her first birthday, and hate being a let down, so with toms help I showered, dressed and got out the door. 
When we arrived natalie (Avas mum) told me Ava was ill herself with bronchitis, which meant that A. She was too poorly herself to enjoy her party and was put to bed, and B. even if she was ok to stay up I couldn't have gone near her as if I had caught her infection I would have been in hospital for weeks right in top of Christmas.
 It's funny that I could see the best place for Ava being poorly was in bed, yet I don't apply this practise to myself, I do wonder if I should pay more attention to my body and give it what it needs, instead of pushing and pushing. Maybe one day ill learn.

But another thing today that reiterated to me that I'm not the norm, was when i arrived at my dads.
My dad, bless his heart is a useless shopper, so each Christmas me and Sara set up an online basket of things we want, clothes, shoes etc. 
Sara was there before me as I stopped in Natalie's for a while so she had already started her basket. She had some amazing 6 inch heels, and some gorgeous, designer going out clothes. I sat for a while watching her get excited and felt a little pang of loss for how I used to be. To say I loved going out would be an understatement, I used to love clubs, getting dressed up, dancing the night away, seeing my friends, seeing the sun come up as we left the club and dare I say it, loved the feeling alcohol brung, a side of me I know I won't have again.
When it come to my list, I crave comfort, soft pyjamas, flat practical shoes, oversized jumpers that won't show I'm not wearing a bra on the days they restrict my breathing to much. I felt I wanted to order some killer heels and an outrageous dress but what good would they be to me. Maybe just more of a torment of what I can't do anymore. 
I'm so thankful I have Tom as he has got to the stage in his life where he doesn't enjoy drinking or clubbing, so thankfully we have found things we enjoy together. We are restricted on how much we can go out so we make the most of the things we can do when I'm having a good day.

I worry that a lot of the posts in my blog are about the bad side of CF and although its not what I Intended it to be, I do find my blog a great sense of comfort when I'm feeling frustrated. I'm not very good at talking about how I feel and if asked I will always say 'I'm fine' but my blog is a place I can release what is tormenting me, without actually having to speak the words or come up with answers to questions. 
Its a release and my mind feels clearer once I have emptied the thoughts.
I find when times are good I bask in them and live as much as I can, I almost don't have time to write as I'm busy...to an extent, living! 

Limbo is a tough place to be when you know things are not going to Improve.
And yet getting iller, in the long run, is essentially what will make me weller, as I will qualify for a transplant and hopefully have a much better quality of life post transplant.
Some days I wish I was listed for a transplant now as I could see light at the end of the tunnel, but by doing so am I wishing worse health on myself? 
Some days are easier managed than others but on the tough days it is very hard not to wish for better health. On better days I am thankful for the health I do have, and thank my lucky stars I am in fact, well enough not to need a transplant, it's a very fine line sometimes between the good and the bad.
But I guess we all have to take the rough with the smooth.

Wednesday, 11 December 2013

After the fundraiser :)

,Well it's over, the fundraiser is done and dusted, but what a turn out we had.
Our aim was to raise £500 which would go directly to the cystic fibrosis trust, how this money would be spent would be at their discretion. But I have asked if it could be put towards gene therapy.
The trust at the moment are funding gene therapy trials, the aim is to replace the faulty gene in a cf body with a corrected, albeit artificial copy of the gene.
In another blog I will go on to be more specific about the facts and timeline so far of gene therapy but for now I want to fill you in on how our £500 target was smashed through as we went on to raise a staggering £1200!!

I say 'we' and 'our' because I want to draw attention to Leanne. A friend that helped me to organise the event. I feel as I am the sufferer I'm getting all the credit, when infact Leanne done as much, if not more than me to get the event to the large scale that it did. 
I obviously wanted to raise awareness and money to the trust, who they are and what they do, as its something I suffer with and is close to my heart, but Leanne choose to go on this journey of her own accord with little to benefit from doing so. I, if around for long enough, could benefit from life saving treatments but if I don't I would like to feel I made a difference to the cf community by fundraising as much as I can. Leanne would not benefit in a direct way, just safe in the knowledge that with her determination she too made a difference. 

We spent 3 months in total planning and arranging things, we have had many laughs and many tears together, but thanks to our vigorous planning and advertising we had a fantastic turnout.
We had the privelage of having Basildon coral society choir come and sing for us, as well as a fantastic singer on the behalf of effective entertainments.
We had Santa, mrs Claus and an elf donating there time to the grotto, giving out presents which were donated to us by hobbycraft. 
A large cake stall, selling cakes that were donated to us, as well as teas coffees and different flavoured juices.
We had a children's corner where they could colour, play with toys, decorate their own cupcakes and make their own Christmas cards, again all of which was donated. We even had a face painter give up an afternoon for us.
Not to mention independent Buisnesses who came along to sell there goods, which added great variety to our shopping corner, everything from homemade cards, jewellery, Christmas gifts and sweets.
The most amazing stall was our raffle prizes, all of which were selflessly donated to us from friends, family and local Buisnesses such as, Ava grace gifts, The Circus Tavern, Sport and Star autographed memrobelia, Canvas city prints photoshoot and meal options from fish and chicken and nandos.

When I embarked on this first fundraising challenge I had no idea how much people would care about the cause, the support has been phenomenal and It will be the first of many fundraising events myself and Leanne will be doing. We already have plans for a charity football match, which a few top London clubs have offered to help with...but I won't give to much away just yet..lets just say the yids and hammers may be very happy ;) 

After that, which we are hoping will take place around may, we will have a summer fete, bouncy castles, BBQ, ice cream man, outdoor games such as 3 legged races, welly throwing, shopping stalls and some fantastic entertainment throughout the day. So I hope people's support will stretch even further.

I wanted to take the time to thank everybody who was there on the day as well as the ones that supported from afar, weather it be a prize or cash donation or even advertising and spreading the word.

Unfortunately The Cystic Fibrosis Trust is not widely recognised as they do not have the funds for tv ads etc, so rely heaving on fundraising events to help make the lifes of sufferes much easier.
With the life expectancy for sufferers creeping up from just age 5 to mid the 30s (average) since the 1960's we are doing something right, advances have been made but unfortunately it is still an Incurable disease. Sufferers still face a lifelong challenge to stay alive and as healthy as possible in to their adult life. Yet some still lose their battle far too soon, leaving behind grieving families that are angry and frustrated at a disease that destroys the body year by year, and as of yet Incurable, CF is like living with a ticking time bomb, so please....

Together, lets make CF stand for  'Cure Found' 
It can be beaten!!! .... we just need your help

With many heartfelt thanks I will leave you there with some photos of the day to look through