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

Monday, 2 July 2012

vanity vs health

Day 16, in the NHS House *said in big brother voice*

So as most people will know, following my previous post i was admitted in to hospital..no shock there.
Its been rough going, this blog may sound like a lot of waffle but i will try to update you as best i can:

Thankfully i made it to my friends wedding, which was the reason i was putting of coming in to hospital, im so glad i got to go it was a beautiful ceremony and the bride looked stunning, as expected i struggled, but did not want to miss it, i survived the day on painkillers and hot cups of tea. Lots of people were looking at me strangely must have been wondering why a young girl was cradling pots of tea when there was an open bar, but i was just glad i was there :)
When i got home that friday night i felt like my lungs had been torn in half i hobbled up to bed and went to sleep in an instant.

When i woke Saturday morning the pain in my lungs was excruciating, i could only lay with a pillow under my left side, i was arched over the pillow with my legs drawn in tight, i couldn't move my breathing was very shallow. I got martin to ring my mum as i always want mum or dad when im ill, such a kid lol,when she got there she put her foot down and demanded i rung the hospital but i was adamant i wouldn't be admitted at the weekend as there is limited staff. She called anyway and spoke to the on call doctor he wasn't to sure what to do so phoned my consultant who said bring her up straight away. With limited movement getting up and packing a bag was difficult. My dad drove me to the hospital and wheeled me up to the ward where the doctor was already waiting. He immediately done my observations. My heart rate was 142 my oxygen levels 88, temperature was 38.4
I got straight in bed to rest and was started on 4 liters of oxygen which quite quickly took my o2 levels up to 92.
2 Intravenous Antibiotics were started and 1 Antibiotic nebuliser was given. Lots of blood was taken for cultures to figure out infection levels and to see why i was spiking such high temps.
I cant really tell you of much that happened until the Tuesday as i slept day and night, waking briefly to see the family.
From the start of this infection i hadn't eaten so my weight dropped from a reasonably acceptable 7 stone 9 to a very unacceptable 6 stone 2. All of the team were very worried that they hadn't seen one piece of food or drink pass my lips in days, even the catering staff seemed concerned as i would usually order quite a lot of food but the thought of having to eat turned my stomach i just felt to poorly.

When i met with my team on the Monday my Dr, Dr Kuitert assured me she would get me feeling better so i put my trust in her and her knowledge and slept for a further five days why the nursing staff administered all i needed

Jumping forward a week to the following Thursday i again met with Dr kuitert. with just over a week and no improvement, still just blowing 30% lung function and o2 sitting stubborn at 92 but now on 2 liters of oxygen she decided to add in a 4th antibiotic started to try to bring the temperature down and with my infection levels in my blood sky high they knew lots of help was needed.
 I was also started on a drug called Megace. Megace is traditionally used to treat women with breast or cervical cancer but a side effect of it is increased appetite and weight gain so it is used in CF when all else doesn't seem to be working. My tube feeding regime was also increased by 1500 a day. I had a meeting with the psychologist and dietician who both agreed was as much mental as it is physical. They explained to me that i had gone so long not eating my stomach had shrunk to the size of a walnut. Also the brain somehow switches of its receptors to hunger as it forget what it feels like, so i never actually felt the need for food. If i did eat i felt sick and full so quickly so in turn ate even less, bit of a circle really.
In todays ward round the option of a PEG was offered to me. This is a small tube that goes directly into the stomach with a kind of cap that you can open and close to connect the feed to. The tube is surgically inserted by making a hole in the skin through to the muscle and stomach lining where it then sits in the stomach. It eliminates the need for an NG tube which is a temporary tube that is placed up the nose, down the throat and in to the stomach. The difference being that it is a more permanent measure and much less uncomfortable than having to pass a tube down every night. The Peg does come with its own problems, the main one being that the cap is visible on the belly, its like a plastic lid so can be seen if wearing tight clothing or going swimming etc which i love to do. Its something i need to think about, its a case of vanity over health which unfortunately is the case for many CF patients, especially women. 

Im going to leave this blog there, im having a bit of writers blog and am finding it hard to piece things together especially as i keep being disturbed
Hope i wasn't to boring :)

Sunday, 10 June 2012

What cant be cured, must be endured

If pain is invisible, how do people around you know you are in pain?
Is it mearly the words spoken of the pain?
Or if there are visible signs, I.E a bruise, a broken limb or blood does it become automatically assumed that the person is in pain?
What happens when the pain is not visible in such a way to the human eye?
The pain is inside, while outside you look painfree?
Do people understand and see the invisible pain as real as they would blood....or do they infact feel more sympathy for this invisible pain as they have only their imagination to guide them?

For 2 days i have been in pain,
For 2 days i have been in bed,
For 2 days i have cried.
My lungs simply feel like they are not functioning. My diaphragm feels bruised and swollen, parts of my lungs are sticking together restricting air flow, it hurts to breathe in, to breath out, to talk, to cough, to sneeze, to laugh!

'One pain is lessened by another's anguish' - William Shakespeare


If Anguish is a sense of pain how do we feel it?
I felt it yesterday when my mum and sister refused to let me sit in bed any longer, they understood my pain but knew i needed fresh air so helped me downstairs to sit in the garden to get some sun on my face.
Through the tears of my physical pain i could see my sisters tears of mental pain.
She could see pain through my tears as i sat and spoke through gasping breaths, just as i could see pain through her tears as she helped me to get comfortable on my chair.

Can pain be any more bearable if mental as apposed to physical?
She knew there was nothing she could do to help me and the frustration at that made her cry, just as i was crying out of frustration of not being able to stop her cry.
Can any pain be lessened by anothers anguish?

'The great art of life is sensation, to feel that we exist, even in pain' - Lord Byron

If pain is a feeling, is it a feeling we would rather do without? or is pain indeed what makes us know we are living.
Is it as essential in life as the air we breathe?
Do we need the sensation of pain to feel the sensation of living, is living pain?

Pain comes in all ways, none of which i feel outway another, each are as hard as the other, physical or mental, but i do wonder how much pain one body can go through physically before they are mentally pained.

Am i justified in my mental anguish when the physicality of pain is so exaggerated?
Does the invisibility of my illness make it less real to the human eye?

What cant be cured must be endured, will time and patience will make them easier?


Friday, 1 June 2012

Eating Eating Eating

I thought i would write a blog about my weight issues as i have been moaning about it for a while

I often get asked ''why do you want to gain weight''
I think in an ever growing society of people who want to be a size zero and with anorexic websites becoming normal surfing for this generations teens, to find someone who actually wants to be bigger than they are is actually bit of a shock to the system for most.
But in truth you will find that most people with CF will be fighting just as hard as most with their diets, only not to cut out the calories but to add them in their food in as many ways as possible.
'CF Tummies' do work work as 'the norm' do. We suffer with malnutrition and extreme weight loss. We are unable to absorb the fat from food due to our pancreas not being able to release the enzyme in which to do so. Every meal and snack has to be supplemented with up to 40 pills which is an artificial version of the pancreas enzymes. The enzyme in the tablet is actually extracted from a pigs pancreas as it is the closest version of our own..sounds lovely...right?!

Even with our 'piggy pills' its still impossible to absorb all the fat, so to counteract this we simply have to eat!...and eat and eat and eat. 3000-4000 calories per day is needed to maintain a healthy weight, it can be even more when you are trying to gain.
So why the constant emphasis on food, well put in laymens terms, everything you do requires calories, walking talking, even breathing.
Our lungs have to work a hell of a lot harder than the average to function and our hearts have to pump faster just to 'breath' so with our lungs using more than the average calories a day, you can see why more calories are needed...to supplement our lungs needs

When infections are rife they love the calories too! If a healthy weight can be maintained whilst well it will mean when an infection rears its ugly head you will have more reserve to fight it with, instead of it taking every ounce of energy you have putting your weight lower and lower...its a constant cycle!
The iller you get the more your weight can suffer so 'feeding' is often used.
This is a small tube that goes up the nose, down the throat and in to the stomach. Although slightly uncomfortable to place the tube its not painful, and is much easier if you are able to do it yourself which thankfully i am, it takes less than a minute to do now, where as it took 10-15 minutes when i first started doing them as i would gag and be sick all the time...not very pleasent, but im a pro now lol :)
A bag of what looks like milkshake is hung up and fed through a pump which releases the feed in to your stomach over an 8 hour period whilst you sleep. The feed i have is 2500 calories. It takes the pressure off of having to constantly eat when you are ill especially if you sleep a lot.

I can go 3-4 days eating nothing, just survivng on  cups of tea with sugar, ill only then start to get hunger pains and ill have a food binge and eat everything in sight, it wouldn't surprise me if i ate all those days missed calories in one sitting of junk food.
I have an unhealthy attitude towards food i know that, I see food as essential treatment, not a pleasure or something i enjoy, maybe as there is always so much emphasis on how much you eat and it is spoken about as much as any other part of my treatment the pleasure of it has been taken away, it can get stressful when im being told im to thin, i must eat more. I do know that and im not happy with the way i look i hate my hip bones sticking out and my spine being prominent but to fit so much fat in to your diet is hard work on top of all the daily treatment i do. As my health has declined my weight has to, it kind of goes hand in hand. When i was weller i loved food i ate all the time, loved cooking and trying out new recipes, eating out with friends, 3 course meals most days but now i actually find it hard to eat as being to full crushes my lungs and makes it even harder to breath, again another cycle!

My current weight is 45kg Im 5'2 so that makes my BMI 18.1
Ideally my BMI should be 23 so i have a way to go yet....


Tuesday, 29 May 2012

Through a mothers eyes...

So as the title suggests this post is through my mums eyes..what follows is a poem she wrote a few days after i was diagnosed so almost 25 years ago, she has kept this aging piece of paper in a folder locked away...untill now

My Prayer!

Oh god in heaven, what am i to do?
Please! dont take my baby, im begging of you
Save her the suffering and pain ahead
Leave her alone, take me instead

Kerry my darlin' whats happening to you
God name your price I'll bargain with you
If you really are out there, prove it to me
stop all this pain and misery

How can you allow her to suffer this way
Only to take her away some day
From me her mother, her next of kin
What did i do? did i sin?
If you feel i should suffer in some way
Then fair enough i will pay
But not like this, thats not right
To make me face the unbeatable fight

The daily treatment, the drugs the tests
The constant worry the lack of rest
Its all to hard for us to bear
prove to me you really care
Find  a treatment, make it alright
Tell me a cure is in sight

Im sorry if asking for help is wrong
but if your going to help, don't leave it to long 
time isn't something we cam spare
Please god in heaven hear my prayer!

Spoken from the heart of a young women diagnosed with a terminally sick child, a women who was younger than i am now when she was told this news, from a women who is my hero, my strength, my mentor, my friend...my mother! <3


Friday, 11 May 2012


I have picked up a cold which rapidly headed to my chest causing havoc! i decided to start IVS pronto as i knew if it was left for just a few days it would have got so much worse, ending with me in hospital Well 7 days in to my course my port decided to stop working, another spanner in the works! So off i trek to london to have it looked at. When i arrived i was feeling absolutely terrible i couldnt walk i felt very dizzy like i was going to pass out its was like my legs forgot how to function and i had such deep pain in my chest.
Dad drove me up there as i felt to groggy so he got a wheelchair and wheeled me to the ward where i met my nurse who's face told me how terrible i looked she very quickly checked my oxygen levels and my heart rate...my heart rate was 138, and my oxygen was 83% Awful!! my oxygen are usually ok sitting around the 94% mark but over the last few months they have been getting slightly lower but have never been that low! and as for my heart rate that was beating at a pace of someone who has just ran for miles, when i only walked up 7 steps to the hospital entrance....those 7 steps seem to be my Everest now!

The Dr's want me to go in hospital next weekfor oxygen monitoring to see if i need to use oxygen at home, but im hoping that wont be necessary and the low was just this infection.
I think i know deep down i should not be stopping IVS today, or going to bath at the weekend, and should be going in to hospital but i feel i spend so much time there and CF rules so many aspects of my life that i dont want it to ruin the one thing i have been looking forward to for months. I will feel just as ill in hospital as i would in bath, if not worse as ill be couped up feeling depressed, so in the grand scheme of things i dont think with-holding treatment for a few days will be to bad. I could be wrong but whats the worse that can happen??....How many things can i let CF ruin? How long should i stay stubborn and determined for?
The answer to that is simple...I will continue doing that until my body physically will not let me push.

I know my health is extremely poor at the moment and i am beginning to accept the fact its not going to get much better. My lung function is sitting stubborn in the 30's  and has done for almost a year now, The length of time between hospital admissions is less, i now use a wheelchair on long journeys and day to day jobs are nigh on an impossibility. I cant bend down to put the washing on, or stand up for to long without feeling weak so dont cook much anymore, even bathing myself is something that is getting increasingly difficult, leaving me feeling breathless and in pain. Housework takes twice as long as i have to constantly sit down to catch my breath. But im still trying to make the best of my life as it is and i feel i need this break away, its been a really crap 18 months and i have been in hospital more than i have been at home.
My CF Team are fantastic and understand that all of there patients still need to have some kind of life through ill health, so they did not push me to go in to hospital any sooner than next week, i think they know that mentally its draining so they encourage you to have fun when you can.
Another blip i have to overcome, another 7 steps to walk up, another mountain to climb, my very own Everest......

Monday, 7 May 2012

My Sisters Keeper

I read a book about 4 years ago called my sisters keeper, im sure many of you know about it as it was later turned in to a film, for those who haven't heres a brief summery....

A young child was diagnosed with with leukemia, the best chance of survival was to find an absolute perfect match to provide her with cord blood, bone marrow and eventually kidneys. The perfect match would have been for the parents to have a 'designed baby' a test tube baby who would provide their existing child with life.
The film mainly based on Anna, the girl who was designed for her sister. She explained that although her sister was primarily the sick one, she too suffered by having blood drawn, bone marrow and kidney transplants for the sake of her sister, she too lived a life of hospital visits because of her sister.

This really got me thinking about my sister and her life having to deal with CF. Although she does not 'suffer' with Cystic Fibrosis and true i do not rely on her in anyway physically to keep me alive, i did and still do require an awful lot of strength and understanding from her mentally, and  from a very young age too, before she even knew what was happening to her little sister.

Hospital rooms, corridors, nurses and doctors, for her too was 'normal' Ambulance men in the night, my mum and dads worried and stressed faces as they tried to nurse me. Her life was often as disrupted as mine. If my hospital bag was packed at 3am so was hers, accept hers was being being packed for another overnight stay at my nans house.
Long line, cannula, x-ray, lung function and psuedomonous was as clear in her vocabulary at the age of 5 as was the words toys, playschool and sweets.
She was there at times when my veins needed to accessed, she would try to hold me down with my mum and even come away with fat lips and bleeding noses as i kicked out in vain to avoid the doctors needles, she was a little adult at 7, old before her time having witnessed things to young. But as i say this was 'normal' for us, just another day in the Robinson household..

I will never know at what age she really knew what Cf was and why what was happening to me was actually happening. I do however remember her telling me off for breathing to loudly or coughing if she was listening to her Michael Jackson tapes :D

Im not sure if i will ever be forgiven for telling you what i am about to as it brings my mum to tears everytime it is spoken about, but she once told me and sara of a time i was extremely poorly laying on the living room floor with a temprature of 41 screaming in pain, coughing myself in to a frenzy of heaving and vomiting. She sat on the floor with me and preyed to god to help her, to help me. I was only young, just a few months old, sara still in nappies come up to my mums side in tears, she was told to be quiet and go and sit down, which she did.
 After my mum had settled me, how long it took i dont know, she turned to see sara had taken off her own wet nappy left it on the floor and curled up on the sofa and went to sleep. To this day my mum will say she has never got over what had happened and sobbed at the thought of sara being sent away, wet cold and tired. Did sara know at that age my mums attention was split? did she know i was ill? did she feel it was best to stay away?How did she feel being shipped off to my nans house? If i was in hospital my mum stayed with me, my dad worked full time so sara was always to stay with my nan. Did she feel abadonned? neglected? unloved? or did she truly in her soul know what was going on in her surroundings?

Sara is a beautiful soul, we call her a witch as she is very in tune with what is going on, she knows me, how i feel... what i feel! There have been times in recent years when she has been at work and been overwelmed with a panicing feeling to later find out at that exact time on that exact day i was having an attack and was rushed to hospital, There is such a thing as twin intuition, well can there be sister intuition? I truly believe with me and sara there is.

A few years ago i was wheeled out of theatre after having a metal plate inserted in to my chest..(a portacafe) still groggy from anesthetic, hadn't yet opened my eyes and high on pain killers, i managed to open my mouth and mutter the "tell sara to stop crying" I was later told that there is no way i could have seen her as she was behind me as my bed was being wheeled back to my room, i just knew she was crying without opening my eyes, or even being fully alert!

My mum is a strong believer in destiny, path lines, past lives and karma, she has often told her she is on this earth, in this life to care for me, it was her destiny..so if that being true was CF destined for me, was sara destined to be a well person who is caught up in illness...Her life is this way because of my destiny, have i kept her from living a normal life. Have i made her question our parents love and attention for her or does she know its just our destiny's

Was i destined to be my sisters keeper? 

 Anna was designed and destined to save her sister from cancer... was sara made to save me in a way no doctor can? by providing humor love and understanding. By being my rock and my inspiration, my sister and my best friend...

Is she to 'her sisters keeper'??? ...........


Sunday, 6 May 2012

CF Week

First off blogger has a new layout so if this doesn't come out right i apolagise.....

So as the title suggests i am about to talk about 'CF week'
It is a week, every year that the CF trust and patients try to spread awareness of CF
Admittedly this week, this year i have done very little to spread awareness due to my own health problems so instead i thought i would write a short blog (and hopefully add some links if i can work this new layout) for you to have a read of yourselves.

First of all i would like to paste a status here that a fellow 'cf-er' wrote, i have nothing to add to her words, it speaks for itself...
So, today is the last day of the UK CF Week, and everyone has been posting quite a bit about it. I'm going to make this my last post for the week, people may ignore this, people may read it. It's a stark and shocking way of putting it, but that's life. Also if it isn't a trendy or media friendly disease like cancer people generally don't give a shit. Truth.

Cystic Fibrosis: I could give you the ......medical ...definition of what it is, but that surely doesn't do justice to the realities of it all. Cystic Fibrosis is a disease that slowly destroys your body one day at a time. It causes constant pain and fatigue. Hours worth of treatments and over 30 pills... not every week, but every single day. Your lungs ache and struggle to do, what seems to others, the "simple" process of breathing.
Toxic antibiotics that improve, but yet also destroy your body. Doctors, nurses, and respiratory therapists are considered family.
We reach 18 years old. We're not celebrating because we are now considered a legal adult, we are celebrating because we are alive. Our bodies are starved from proper nutrients and oxygen. Kidneys fail. Livers fail. Hearts fail. Lungs fail. Bodies fail. People die.
Kids who never got the chance to see high school, teenagers who were holding on to hopefully make it until graduation, and adults who waited endless hours, but never received that call.
Think this is too harsh? Welcome to the life of thousands of people, who despite all of this, keep an immense amount of laughter and positivity in their lives. Welcome to life of thousands of people who deserve a cure!
Secondly i would like to show you a video the CF trust has made. Kerry Thorpe is in the video, 'a friend' i have never met, only spoke online to for about a year, somebody who truly does have the signature strength that many CF patients have, and wonderful person who i hope and prey gets listed for her double lung transplant soon.....

Next i want to leave a link to purchase CF wristbands, by ordering a band for £2 you will be helping The CF Trust in vital research as all proceeds go straight to The Trust, If you could spare £2  please please order one :)

I will leave this blog here for now....
I just wanted to say, that once again, my reasoning behind this blog is to raise awareness of all aspects of CF, its problems, the facts, the truths, the laughs or embarrassment it can often bring....so please do share my blog to your own profiles for people to read and share.

Thankyou to all that do already read my blog, and i hope you will continue to do so...
And together lets make CF stand for 'Cure Found'

Sunday, 15 April 2012

My silence is broken.....

So its been a while since i felt compelled to write but tonight i feel i need to speak..

I lost my voice ...(so to speak) after several hospital admissions, fighting to improve my lung function, although months later this is still the case and the fight is more difficult than its ever been i feel the need to vent and writing has always been what i do best in these situations.

I felt lost, like i was drowning in illness, i was losing myself to the point of not recognizing myself in the mirror, it was a different person looking back at me, i looked haunted...Grey, gaunt, scared, a much slimmer bonier version of the person i once knew, i felt my will to fight slipping away from me as the numbers that showed on the lung function machine slipped lower and lower, forcing every inch of breath out of my lungs in to that machine till i was physically rocking and weak with exhaustion....the numbers slipping 60-50-45-40-35-30 within a few months, endless hospital admissions, endless antibiotics being pumped in to me, making my skin dry, rip and bleed daily, nails and hair breaking away weight slipping away as the sheer effort of breathing used up all calories, 4500 calories a day including being tube fed through my nose over night in desperate vein to shift my weight above the 6stone mark, 2 and a half stone dropped from me quicker than my will to fight was dropping!!

''I dont care enough to fight any more'' was a conversation i had one late night at the hospital with my mum as we listened to the wiring of the machines pumping a concoction of drugs to keep me well, tubes up my nose, in my veins, in my chest, wires and bags overloading the drip stand, arms blue and purple from daily blood tests to monitor my liver, kidneys, infection levels, drug levels.....
Why was i silent?? ....because i was filled with anger and negativity towards everything and everyone
Why is my silence now broken??....
Along with the death of friends came the loss of my anger at my own situation....i was alive, i was still fighting, i watched danny make his final journey to corbetts tey crematorium a few months earlier.
Im now watching and hearing more friends lose their fight to this evil disease, watching as friends wait anxiously to be listed for transplant, being told they are not eligible, or going through transplant only to then face rejection.
Young lives being lost...
One choosing to end treatment to stop the suffering, just to be at peace, and breathe easy
One waiting to be listed,
One unable to be listed,
One too scared to want to be listed
One waiting for years having been listed and waiting for a match
My heart goes out to each and every angel passed, the brave who can accept the inevitable and choose to take control of there own ending, those with enough strength in there bodies to fight each and every day...
They say you never know how strong you are until being strong is the only choice you have....never has one sentence rung so true to people with Cystic Fibrosis
The strength of these people has broke my silence and broke my own self anger and pity....im alive and will live for every fallen angel
Breath easy now and forever rest in peace.. my friends i knew for years, for those who i passed in the hospital corridors, for those whose blog i read, you were all 'friends' its just a shame cf was the thing to unite us...
'Till we meet again sleep easy <3

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