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

Tuesday, 17 January 2012

Getting Fit!!

Since my last post i have been focusing all of my attention of improving my fitness. Firstly to improve my lung function and to feel better generally and secondly if a transplant is needed in the next few years or sooner my body will be in better shape to accept it and hopefully cut down recovery time and complications.

One good thing that has already come out of it is my appetite has improved, i suppose where i never usually burn much energy my body doesn't crave food as much, i could easily survive on one snack or small meal in a 24 hour period. Yesterday i ate 3 good solid meals, cereal and fruit for breakfast, dippy egg and soldiers (as my nan calls it) for lunch then a jacket potato stuffed with mushrooms onions and cheese with pork chops for dinner. I love to cook and its the thing i miss most when in unwell as im to tired to stand for long periods of time.
The day before i made chicken breasts stuffed with mozarella and red pepper pesto, new potatoes in a butter, garlic salt and chili flake dressing with fresh veg all prepared from scratch.

Friday night i went swimming with my sister, i have always loved swimming since a young age and was always called a water baby as i just took the water so have swam most of my life.
Unfortunately i had to take a year off of swimming as i had surgery on my cervix and the water would have posed to much of an infection risk in the healing process.
I had a smear test when i was 22 and although this was before the recommended age of 25, i was experiencing painfull and prolonged periods so went to my gp. My mum suffered cervical cancer age 22 so as there was a family history he recommended an early screening as i was symptomatic already. The smear test was abnormal so they sent me to basildon hospital for a colposcopy a test which can look at the cervix with a camera to see any abnormal cell growth. Unfortunately this test was positive showing a result of CIN3 so was booked in for surgery. Cell growth at CIN1 is monitored, CIN2 is lasered and CIN3 needs surgery to remove the cells from the cervix to prevent cancer from developing. 2 Weeks later i was wheeled in to theater but had to be awake for the procedure as my lung function was low so a general anisetic would have caused problems to my chest, although the area was numbed and i was sedated it was quite an uncomfortable procedure. It wasn't however successful as at my 3 month check the cells had grown again but this time at CIN2 so had a laser treatment. This was successful for 5 months but again at my check up cells had regrown again but only at CIN1 this time so am being monitored closely for any further changes, which although is a pain i do get to swim again.
So here we are back to now, as i said i went swimming with my sister. It was something i was very worried about as the last time i swam my lung function was 63% it is half that now so i knew my stamina would not be half as good as it was so was quite anxious to go alone in case i struggled to breath. I was shocked and pleased at how well i actually done i managed 14 lengths, far from my best but still a good starting point. I went swimming again on my own this time Monday morning and managed 20 lengths, very happy. Already almost half way to my usual best :)
I think i have mentioned in my blog somewhere before my passion for yoga but again i had let this slip over the past 3 months, so i got my mat and blocks out to see how flexible i still was, the verdict = not very lol. I really struggled with some of the poses i previously done effortlessly, i struggled to touch my toes and was quite a way off putting my leg behind my head, my balance was off to as i was wobbling a lot in head and shoulder stands. I wasn't discouraged though infact it made me all the more determined to push on and get my fitness and flexibility back. I forgot how much i loved yoga not just the postures but the way your mind is during and after the exercise i felt revitalized and happy, i felt like my mind had been focused and centered and i lay on the floor for a while after smiling lol.
For Christmas my dad bought me zumba for my wii, another form of fitness that kept me well previously was dancing so i thought having zumba at home would also be a great way of keeping fit, i have used it twice and it was brill, i was sweating so much after and my heart was pumping like it hasn't in a long time. Its true what they say exercise really does release happy endorphins. So im going to continue with my fitness regime and will hopefully get an improved lung function on the 3rd of Feb when i meet with my team, im hoping i would have gained a few pounds to as i have been eating like a Trojan !!
The only thing i have to complain about at the minite lol is that i had my flu jab and as it does every year its made me poorly, i feel all fluey, bunged up and achy so am doing extra physio to keep my chest clear
So for now im very happy, so think i will treat myself to a large caramel macciatto in Starbucks today for all my hard work :)

Thursday, 12 January 2012

'Keep Calm & Carry On??'

Where to start, i dont know?....

Less than 3 weeks off of IV'S and im feeling poorly.....again same s*** different day.

I feel the time to talk about transplant with my team is near. The more i speak to my CF Friends the more im convinced i am that the time to discuss my options seriously with the team is upon me.
I used to have IV'S twice maximum 3 times a year and i would feel amazing once the course was finished, but now i am having more and more admissions and the amount of time out of hospital between courses is getting shorter and shorter.

There are so many things i can no longer do, just to be able to stand for long enough to cook a meal or do the ironing or not need 3-4 hour naps if i go out for an hour or 2. My life is very limited at the moment and i have never been more aware of cf. It used to be such a small part of me now it dictates every single thing i can or cant do.

I am supposed to be going to the theatre to see war horse on the 26th and i am trying to prepare my body for such a long day, the traveling and the mere task of sitting upright for hours is something i need to train for...its crazy :/
I dont feel i can plan a future, not in any way at all. I do not know how i will be overnight or in the morning let alone next week or in a few months so booking anything in advance is now a possibility.
And if i do have an event coming up i need to make sure im fully rested before doing it. Everything is a compromise.
If i want to go shopping i need a lay in.
If the housework needs doing and i want to go and see a friend i have to choose which one i want to do.
I need to priorities, plan, think ahead and judge how long i will be out of the house and how long i will need to be awake.
Believe it or not i can only manage 4-5 hours at a time before my body craves rest.I know i shouldn't but i do truly envy girls of my age whose biggest question in their head tonight is what outfit they will be wearing to the pub tomorrow, or what pub they will be going to to get pissed, or how they will cope when they are so 'ill' the next morning with their hangovers. I remember when my 'ill' was a hangover...oh those were the days, oh to be 'normal'
I know i shouldn't envy or be angry but i am and i cant help it. Im angry at life, im angry at the questions i have to ask compared to others.
But then i hate myself for being oh poor me when there are people out there who have been dealt such harder cards than i have. I should shut up and just play my cards and accept them but i sometimes just cant help this anger especially when i see people running around planning their lives with there partners, booking holidays, trips, days out, motherhood, anniversaries when im not even sure i can do any of that again.
I should be happy for those who can and be grateful my loved ones will never a day in their life feel how ill i feel daily.
BITCH...I'm sure that will be some reactions i get to this post, ill accept that as i am a bitch who is jealous, an angry little person sat in her bed frowning at the world.
The green eyed monster is a terrible thing!

Will a transplant make me smile? The affects daily medication is doing certainly does not cut it. Will Transplant give me the certainty in life most people have or will it all go horribly wrong?

Life is such a precious thing, most people will never realise that and its such a shame as they do not realise just how amazing it is to make plans for the years, months, weeks or even days ahead.
Death will be a part of us all, that much is a given but when your fate is constantly thrust in your face it can be very daunting.
Many people who have had near death experiences will say they never knew how amazing life was and they will now embrace it with both hands.
I want to grasp life and embrace it too but unfortunately its not always that easy, dont get me wrong i DO try and live the best i can everyday but i wish there wasn't so many compromises and so much uncertainty....
I dont know what else i really can do to feel better each day....
CF is evil. It takes young lives everyday from people who fought everyday of their lives to breathe. Through no fought of their own they are faced with a daily concoction of medication just to live another year or to stop the decline in lung function.

No one can understand my anger, no one can understand my frustration, my fear, my panic and my plea with my own insides to make me feel OK, just OK...... just for a while
Is that to much to ask? am i justified in my anger? Should i even be angry? Should i just 'keep calm and carry on?......

Tuesday, 10 January 2012

Daydream believer?....

38 per cent is my average lung function. It can peak to the 40's but only ever after IV'S and quite often plummets to 32%

I have been seeing my psychologist sajel for around 3-4 years now at my cf unit.
My last admission she came in to my room and asked me how i would feel should the conversation of a referral to the transplant center be bought up.
This took me by complete surprise at her asking me and my instant question was why? i wanted to know why she was asking me and if she had been sent in by my Dr to breach the subject sensitively. Her answer was no and that she simply wanted to know how all her patients feel about transplant as early on as possible, she said she would ask children the same if she worked in pediatrics. My reply was why are you asking me now then? if you like to know 'just in general' why was it not spoke about when we first met and over every meeting we have ever had.
I was and still am sure this is the way referral is breached. She explained to me that they sometimes refer people much earlier nowdays to give patients a better chance to come to terms with what is coming and to get all questions, fears and worries answered before they got so poorly they would need a transplant sooner resulting in not much time to have these questions answers.

Im not sure how i feel about transplant as its never been something i have truly thought about in detail or ever really see it has something i would need.
However over the last 6-8 months have found my mind wondering to the possibilities of having a transplant and what the outcomes of it are, the percentage of it being successful, am i ill enough to warrant even being listed.

To get listed is a very long drawn out, mentally draining process. It starts with an initial referrel from your cf team to the local transplant centre, mine would be the harefield. Once the referral has been sent you meet with the assessors who perform multipal tests to see if you are a good candidate for transplant, as to what the tests are im not entirely sure as this is all new to me but im guessing the main tets would be lung function, bloods, gas exchange, weight, quality of life and prognossis of life without transplant.

The whole process is very daunting. I know people who have had both good and bad experiences and outcomes following transplant but quite honestly its something that petrifies me. I cant sleep at night with nightmares of how it could go terribly wrong. Quite honestly i am a mess through the worry, i dont sleep, i dont go out, i cant socialize as i would like to. I feel locked away in my own fear with nobody to talk to. I shut the world out but equally i want to pull friends and family closer for help and support but wouldn't know what to say as my mind is still in a mess with all the fear and questions.
I'm very lost at the moment i keep thinking i will be fine and the whole transplant thing will just never be an issue, i day dream at night of how my life will be, i imagine i will wake up the next day jump out of bed make some coffee, get washed and leave the house as a normal person would do. I imagine me running the hoover round, doing some gardening, putting a load of washing on, walking the dogs, cleaning the car..... living. I believe it will happen and its the only thing i seem to smile about..my dreams..A daydream believer i guess!
But once im asleep my mind takes on a different persona and i picture me hooked up to wires gasping for breath or agony having being cut the length of my sternum to get these rotten lungs out of me, trying to talk through a Traci as im recovering, will i be strong enough, will i cope? do i want to? will the pain of recovery be worth it? will i breathe easily after? or will i die anyway?
I wake up in cold sweats and am then awake for hours panicking. Then in the morning im to tired for pancakes, im to tired to live. The daily regime of treatments and pain is my reality.
No dog walking, no basic day to day living like most people, to tired to get out of bed, to tired to get fresh air. When i do go outside i feel like a tiny person in such a big world its noisy and busy and quite daunting. I dont know where to go, I dont know where i belong... so i go and hide in the safety of my bed again, the same bed that is also my prison. I dont know where i want to be or what i want to do.
The idea of living normally is just a daydream. To get up in the morning, go to work, go food shopping, mix in the outside world is like a foreign world to me i dont feel part of life anymore.
I have nothing to talk about with anyone as not much happens in my bedroom and what goes on in my sub conscious mind is to daunting to speak about so i say nothingWould a transplant solve any of this, would it give me the strength and the health to function, to go outside, to get a job or go shopping without feeling worried and scared. Will it solve my fear of what may happen, will it give me a lease of life to go to college and do the things i want to do?
Or will the transplant not work, will i die on the table, will my body reject the new lungs, will things be no better even after i put myself through such major surgery..
Will i even get listed if i go for a referral? Do i want to be listed?

I have said in my last few posts my mind is scrambled and i think by reading back on the post i have just written it is still very scrambled. I dont know how to start to unscramble it. I dont know who to talk to, or what to say, being opposite someone speaking words seems so much harder and all the more real than thumping at the keyboard as my feelings come spilling out through my finger tips.

I'm just so lost....I dont know what else to say