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, 29 October 2013

Brand revolution

With the threat of benefit cuts I felt compelled to write from the view of 'a benefit scrounger' because after all, aren't all people on benefits now labelled as that without a care for their situation?

In a political world where profit is key, why would anybody feel they should support the vulnerable when they cost taxpayers millions of pounds every year.

I receive benefits. I have done since I was 3 years old. Disability living allowance (DLA) in my main source of income. Under currant guidelines i am entitled to the highest rate of care and mobility components of this particular benefit. I receive a cash payment each month, I also have a weekly allowance to pay for a car.
Is this wrong? In today's standards, quite simply, yes. Or at least it is in the eyes of the government.

DLA is soon to be switched over to a benefit called personnel independence payment (PIP) every single person receiving DLA is going to be reassed.

When I was diagnosed with Cystic Fibrosis at just 6 weeks of age, the governing party of 1987 decided this was enough to warrant my mum with these payments to take care of me, as it was then to be her full time job.  An extremely low income for a job that never ended. 
True, motherhood is a full time job, a reason many mothers get money today for doing this job but add to the equation a terminally ill child. A child that was never expected to live past their 5th birthday, the job becomes so much harder.

Cystic Fibrosis is a lifelong, life threatening illness. It's degenerative meaning each year it is more likely to decline that get better. Aside from getting hit by a bus or some other freak accident it will be the thing that kills sufferes. And kills them far to young. 
Life expectancy when I was born was 5, but thankfully with advanced technologies in science this is a figure that has now lept to 38. A child born today with CF can expect to live an almost 'normal life' with 'normal life expectancy' 
But the generation of the 80s and even some in to the 90s still live with the fact that they are unlikely to see their 40th birthday. They are of course entitled to the medications that newborns are but years of poor treatments and poor knowledge, means that once the scar tissue in the lungs has occurred due to reoccurring chest infections month after month, the damage has been done. It's irreversible. 
So many young people have been forced to consider the fact that a double lung transplant is the only way to enjoy an extra few years with their loved once. 
A procedure that is in no means a walk in the park, and even post transplant, to still be somewhat ill. Dying on the table is a possibility, rejection is a possibility, just 2 of the numerous problems a post transplant person will face. It is no means a cure.
Cystic Fibrosis is Incurable, but transplantation may be the only thing to stop the initial onset of death at a tremendously young age. 
I have seen friends die at the age of 12, age 15, age 22. People having transplants as children, teens and young adults. Some to go on and have a reasonable, even good quality of life. But some to face the prospect of rejection and death.
But to get to transplant stage you need to be in critical health, a life expectancy of just one year without transplantation. At the very end. At deaths door. And even then to get listed is a trial in itself thanks to donor shortage.

However the government are now deciding that by one simple test of walking distance, weather you will be entitled to financial help. An income.
50 metres!
If you can walk more than 20 metres but no more than 50 you can get benefits.
Anymore than this, you are in politicians eyes, fit for work!
It shocks me that a bunch of suits can determine this and pigeon hole all disabilities in to this category.
When I'm well I can walk 50 metres, hell if I'm lucky I can really jump out of this disability bracket and walk 60 metres....don't tell the government though or I will be stripped of everything I have and  be thrust back in to the world of work, because my legs can carry me a few metres over their guidelines!

Never in my life have I heard something so ridiculous.

Now I use the term 'well' loosely but, Well days, my lungs function at 35% of an average human based on my sex, age, height, weight and ethanticity.
 These days I will wake up after possibly a good 3-4 hours solid sleep, I may even be able to sit up the first time I try, I may not wretch and gag on the sputum drowning my lungs. I may not even have a crippling headache, I may even be dry from not sweating from high temperatures in the night. 
I will only need to do 2 inhalers, 2 nebulisers 1 hour of chest physiotherapy and clearance, only need to take 2 feeding supplements, with 8 tablets and 1 shot of insulin and luckily enough I may only need to swallow 50 tablets that morning. 
I'd be pushing my luck if I could shower myself, dress myself and possibly tidy up after myself. Then after all of this I may be able to keep my eyes open for an hour or 2, or venture outside the house because the fatigue and exhaustion may spare me for a while. 
I just prey these days coincide with a day of 'duties' an hours drive to London to have a needle placed through the skin of my Breast to flush a line parralel to my heart, clean of any blood clots that will administer essential and aggressive antibiotic regimes when I am infact 'ill' 
The days i will need to meet with my consultant to discuss treatment options, the dietician to check my weight and calorie intake, a physiotherapist to ensure the devices I am using to clear me of bug ridden sputum is working effectively and efficiently, a psychologist to help with the burden of my daily regime to live, to breath.
I prey that these well days are the days I need to go to the GP for a medication review, a blood test to make sure the treatments im on are not poisening my liver and kidneys, a repeat prescription, blood pressure monitoring.
A trip to the local hospital for retinal screening to ensure my insulin is stopping high sugars and turning me blind, hearing tests to ensure toxic drugs are not about to make me lose my hearing. 
I could walk instead of travelling in a wheelchair and use a mere 2 litres of oxygen while walking at less than a snails pace.
But walk neverless, and if I exceed more than 50 metres I will then need to fit in a full time job to support myself. 

This full time job however will need to be one of extreme understanding, compassion, lenience and support. For when those 'ill days' occur I will not be in work.

I will either be lucky enough to take on extra treatments, at home, in my own bed, fatigue and general health allowing so. With the support of my family who will come and help me administer even more medication during the day and night.
An extra 20 tablets on top of the usual 50, 4 extra nebulisers and another 2 -3 hours of physiotherapy. I will not be able to shower myself or change my sweat soaked bedding. I will be regularly sick from from the addition of 3 intravenous antibiotics that will rid me of this current chest infection. I will need help to have a sterile environment to draw up and administer this potent mix of essential support for my body 3 times a day. Nasal gastric tube feeding will commence to deliver me of an extra 2000 calories to help me fight the infection. 
Or I will be in a hospital bed completely unable to do anything for myself, relying heavily on specialists to get me back on track. Sleeping all day only waking to be fed and see family. Walking would become an impossibility, my lungs will then function on 28-30 % average. I will go everywhere in my wheelchair and be increased to 4 litres of oxygen. Far from walking 20-50 metres, 1 metre will become a challenge I have to overcome once again.
These bouts last 3-4 weeks at a time and happen every 8 if I'm extremely lucky, but 6 is the most amount of time I can go not needing the extra support.

Does this make me disabled? Unfit for work? Does it make me a burden the tax payer could do without? Am I infact a scrounger? 

20 years ago the support network of welfare was put in to place to support the needy, the unable bodied, the weak, the vulnerable, the terminally ill.

 Cystic Fibrosis fell under this category.

The make up of Cystic Fibrosis hasn't changed, only the support network has.
What, in the governments eyes has changed so drastically that it sees Cystic Fibrosis sufferers as able bodied and a group that no longer needs support from our country?

The simple fact is that it's the money that has changed.

Cameron is in the process of taking the EU to court to defend British bankers salary, bonuses, the amount of tax they should pay, but is it not infact these very people that should be supporting British disabilities.

Tax evasion and tax havens are where our governments priorities lie, their own greed and need for the finer things in life put ahead of people's own right to live in less than squalor, in a world where they can feel poverty is not around the corner, a world where the disabled are thrust out of a support network. 
Is it not enough that they are cutting the very thing we need most, the NHS? 
The ability to access treatments that can save their life, they are also cutting the basic needs of food, utilities, heating and housing just to save a buck. A buck that will be put back in to bankers & politicians pockets.

I can't help but wonder how different the story may be should they feel the burden of terminal illness, their own fate and mortality constantly thrust upon them. Should they step out side of their world with the weekend country house & pool, the acres for their children's horses and corrupt and corporate world of profit and live in the real world.

Would they walk a week in mine or anyone elses shoes, would they then reassess the support network they are so keen to abolish?

Would I, as well as many others still be made to feel a burden on the country, something the tax payer could do without, a tarnish on a society they want to be perfect.  

Or are we infact in our right to request support from the county we live in?

Recently in an interview with Jeremy Paxman, Russell brand spoke of a revolution for the very people like myself.
After announcing he had never voted and being attacked by Paxman for it, I can't help but think he is quite possibly the only person who actually understands the real world. 
The world where generations have not been supported, the generations of drug addicts, theives, homeless and disabled.
He has been there. At the depths of despair and left to his own devices to rot instead of getting help from our government.
A government that when wanting votes claim to support these very people.
A trick to getting votes maybe? a false promise of understanding merely to get in power, then magically forget the people they claimed they cared most about.
I have voted for these very parties, but as Brand has pointed out, why waste your time voting when nothing seems to change for the better.

I have and will at least try to stay open minded to people's views and opinions, but I find myself shutting off to it as our country goes to pieces. In a world of politics so huge. who am I to question or try to change how Britain is run.
Run for prime minister I never will, but I will definitely back what I believe in and Brand and his 'revolution' is something I feel quite excited about. 
Could he possibly be the very person who opens people eyes to the very corrupt nature of our politicians?
An ex drug addict, a former person of the low life, surely not?! 
Well, why the hell not, he is at least real! 
Based on the backing he has on twitter and Facebook I'm guessing, many people agree with him. Me included.

We can only hope for change  

Saturday, 26 October 2013

Fundraiser Information

I wanted to update everybody on what's been keeping me busy for the 2 last weeks.

As I said in a previous blog I have been planning a lot of fundraising for 2 charities that are very close to my heart. The Cystic Fibrosis Trust and Life Life then Give Life

I have decided that the first fundrainer I will hold will be for the Cystic Fibrosis Trust.

I have been interviewed by my local paper to raise awareness towards Cystic Fibrosis and the Fundraiser, the link will be at the end of this blog if you want to take a look.

Along with great help from my friend Leanne, we have managed to hire a church hall in December
The event will be Christmas themed so there will be lots of activities for children.
We have a santa with his elves in his grotto, card making and cupcake decorationg all available for a small cost.
 We will have a very large cake, mince pie, and savoury stall complete with teas coffees and juice, as well as many stalls from Avon, gifts and fresh Christmas reefs so it will be a perfect family fun day out to do a bit of Christmas shopping, have some tea and cake as well as keep the kids entertained.
Not to mention an amazing raffle with fantastic prices ranging from show tickets, photo shoots, haircuts, make up, facials, champers, chocolates and many many more 
The event will take place on the 7th December, at The United Reform Church Hall, Honeypot Lane (off of whitmore way) Basildon. Between 11 & 3.
Santa will be there for 2 half hour slots, 11.30 - 12.00 and 2.00 - 2.30 so if your children are wishing to see him please be there between these times to avoid disappointment.

Raffle will be drawn at 2.45

We do ask people to bring as much change as possible as changing notes will be slightly difficult, items such as cakes, drinks and childrens activities will range between 50p - £2 
Unless shopping at the stalls, the prices will be set by the stall holder.

Unfortunately due to cross infection rules, people with CF will not be able to attend as I will be there and culture psuedomonous ( please note this is ONLY a problem to children/adults with cf, it poses no risk what so ever to healthy people, as their genes are completely different to cf sufferers and it is in no way contagious) 

If anybody feels they are in a position to donate a gift to the raffle, cakes to the stall or small inexpensive gifts for the children visiting Santa we will be extremely grateful for your generosity towards such a Worthy cause. I do also have a bank account that will hold funds for people wishing to donate but are unable to attend the event.
 You can contact me on my Facebook, twitter or E-mail which is kerry.r1987@yahoo.co.uk should you wish to donate or need any further information.
Please feel free to share this information on your own facebook or twitter accounts, the more the merrier :)

We hope to see you there and see you all having a fantastic time on the day
Thanks for reading xxx


Friday, 18 October 2013

My newspaper article


Me in the paper yesterday..Thursday 17th October :) 

The waiting game

As expected after a bad few nights I had to start IVs

I went to my hospital appointment for my allergy testing Wednesday, but arrived an hour earlier for the dr to see me, have an x-ray, lung function and blood tests.
After the review the dr decided the conditions were not optimal to perform allergy resting.
My lung function was down, as was my oxygen levels and my heart rate and temperature were high.
To be allergy tested against an antibiotic you are thought to have previously had an adverse reaction too, you need to be in the best health possible for you as your immune response can act different with an infection in situ
With all my results indicating an infection it was decided to abort allergy resting and start IV antibiotics straight away. Luckily they felt I was just well enough to do Ivs at home, an option I always prefer. 
I was started on 2 antibiotics, Aztreonam and Tobramycin

***GROSS DISCRIPTION OF SPUTUM *** skip to next paragraph to avoid lol
My sputum has been extremely difficult to shift over the past few days, so I knew it wasn't going to be a nice looking sample (like any sample can actually be classed as nice but anyway)
It was a very thick, dense, dark brown colour, resembling mooshy mud, it also tasted a lot like copper 
My team are expecting it to come back growing a different bug to my usual, so they have said to expect a chance of antibiotics next week, once they know what was cultured.

Since Wednesday I have continued to have temperatures which really is the thing that's making me feel so groggy. One minute I am so so cold, the kind of cold that goes to your bones and no amount of layers can warm you up, the real depth of winter cold that you think will never pass, and the next I'm stripping of because I'm drenched in sweat, having to change clothing because I'm wet through. It's leaving me feeling dehydrated, sleepy, weak and a bit miserable.
Oxygen is something I only tend to need on movement, but my chest has been feeling quite awful when I'm trying to sleep. I'd wake up coughing and gasping for breath so neither myself or Tom have had a good night sleep all week. 
Last night we made the decision to fill up a tank and i would sleep wearing O2, a decision that's not always easily made as having to much oxygen can actually cause damage also. It's different effects of being to low but something not to be taken lightly.
I'm pleased to say it was the right decision as I slept solid for 5 hours without feeling breathless, and didn't cough once, much relief to mine and toms exhaustion levels. Today is the first day i haven't woke. Up with a crippling headache, so for the next few nights ill continue with O2 Untill the infection starts to ease up.

This is the part of my life which is a huge waiting game, and a time I find most frustrating. I have had to cancel meeting two friends and a coffee meeting I had planned with my co-host about our fundraiser.
All plans are on hold until I can actually get out of bed.
I HATE not being able to do what I had plans and its a real test of patience to get me through these times. 
When I'm ill I also tend to develop a real clumsiness, I misjudge distances of cups etc so end up knocking them over instead of picking them up, then when I do pick them up they usually end up on the floor. Just an hour ago I managed to spill a cup of hot tea down myself and the sofa, kick Maggie then elbow her, poor pooch :( 
She's learnt to take the rough with the smooth and she always gets extra cuddles when I somehow injure her :) 

I think I have explained before, or at least tried to, being a let down is something I will never come to terms with. I know friends would never use the term 'let down' but more often than not, ill text to cancel plans we had made simply because my illness is so spontaneous I can go downhill overnight therefore affecting any plans made. I know they probably accept this way more than I can but its a learning curve ive not yet learnt. 
Seeing my friends is now usually a text from me saying "are you free right this second, I'm well for a bit" unfortunately most, if not all, have full time jobs and/or children and of course busy life's so it's catching them at the right moment for a last second dinner date. Our last minute dates are often ones that I enjoy most because its unexpected and a treat, and we always have lots to catch up on. 
Me and Frankie are by far the worst, we'll go for lunch, I push my luck and suggest shopping as well or we'll end up on a random drive on one mission or another. We always have a giggle and we do get up to mischief. I can't divulge our mischief or our own 'friend language' haha 

But for now I know I need to rest up and recoupaerate then I can enjoy the things I have had to put on hold for now.

One final thing...I was in yesterday's Basildon Yellow Advertiser, Thursday 17th October, it has details of The Cystic Fibrosis fundraiser I am holding. So if you could pick up a copy, have a read and come along to the event, every little bit of support and donations will be gratefully received and of course go to helping the Trusts vital research to improve and create new treatments to help people like myself.

Thanks for all the support to the people already on board, by donating, liking, sharing and supporting my blog and event details, and an even bigger thanks to my co host Leanne who is actually doing a hell of a lot more towards it than me at the moment :)

More details of the event will follow on future blogs 

Tuesday, 15 October 2013

A bad day

Feeling slightly frustrated today. 
My health has took a turn in the night and today iv been left dealing with the effects of it.

I had my flu and pneumonia jabs just over 3 weeks ago, and every year I suffer the side affects. But this year was quite a lot worse due to having the pneumonia one as well as the flu, pneumonia is evey ten years. As expected I felt groggy for a few days, no surprises as they actually introduce to flu to your system in a controlled way so the jab actually knows what it should be fighting against.

After a few days my chest seemed to start feeling quite grumbly, so I done the usual routine, of increased nebulisers and bumped physio up by a session a day. As well as an oral antibiotic.
As the days passed I wasn't sure if how I was feeling was due to the jabs or infact an infection brewing, being stubborn I thought lets stick it out see if I improve. some days I felt ok, I'd do things fairly at ease, well at ease for me, and the next I'd be feeling truly awful spiking temperatures.

I woke up yesterday morning feeling very lethargic, almost like I was hungover. I managed to get up and do some ironing, even prepared the dinner. But as the hours past my limbs were becoming increasingly heavy and a really dull headache had developed, not a majorly painful one, just a niggling one that you can feel as you move your eyes or head.
I managed to eat dinner, then a short while after, my head felt like it had been smashed repeatedly with a bat, I felt like I'd been in a fight. So a little after 8 pm I climbed in to bed, fell asleep in an instant and stayed that way until 2am when the pain in my head woke me up. 

Now I don't know how to even describe this headache, my skull felt bruised and the fluid inside was causing painful pressure. I needed to get up to get some painkillers but I couldn't lift my head from the pillow, it was like a lead weight pinned to the pillow. I noticed that I felt extremely cold but was dripping head to toe in sweat, my hair clinging to my forehead, I just couldn't move. It took me around ten minutes to sit on the edge of the bed, the weight of my head feeling like it was going to topple of my shoulders, I managed to walk in a very drunk like haze to the medication room, I grabbed for 2 painkillers, paracetamol and diclofenic.
I went to the bathroom to get some water and sickness rushed over me so I emptied the contents of my stomach in to the toilet, my head feeling worse with evey wretch. I sat on the bathroom floor shivery but sweating, I wiped myself down with a flannel managed to take my tablets, settle my breathing and get back to bed, although extremely breathless I actually managed to dose straight back off, I'd wake briefly every hour or so still with a thumping head but managed to dose of each time.

A disturbed sleep, sickness and pain left me feeling even worse for wear when I woke up with Tom this morning, I told him I wanted to have a bit more sleep and filled him in on the night, he was furious I didn't wake him, but there really is no point in my eyes, he couldn't have done anything and I hate when I disturb him because he works such long hours.
Well luck would have it that he was actually of work this morning as he had a drs appointment himself, so once he'd been to that, he come back got me settled, gave me all the medication I needed, an essential cup of tea :)
He went of to work and I proceeded to fall in to a deep sleep. Waking only at 4pm, again due to a headache and extremely aggravated chest and sweating. 
The time is now 6.20 and I have had a much stronger painkiller called tramadol. hopefully it will ease the pain in my head and chest but it will knock me out again as it makes you very drowsy. so im guessing sleep wont be to far away again. I am waiting for Tom to get home from work, and I know I must eat but when you feel so ill food is always furthest from my mind.
I hate days that are completely spent in bed, it makes me feel extremely depressed and honestly slightly worthless.

Going back some time, I had an anaphylactic shock to an IV (intravenous antibiotic) and have been waiting many many months to have controlled testing at the hospital to see if it was a 'true reaction' my appointment is scheduled for tomorrow the 16th at my usual hospital, the London chest.
I am going to attend but I very much doubt it will actually go ahead, as when its done you need to be what they class as 'well' because if your poorly your immune response is different, making the testing unsafe, I guess it will be down to them weather they go ahead. But I will see my team whilst I'm there and am quite sure they will want to intravenous antibiotic treatment now that my chest has declined and I have temperatures so high I feel delirious.

It has been 7 weeks since my last course so im definitely due, but I always like to see how long my body can cope without the stronger treatments, it's almost like a game I play with myself.
Tomorrow will give me an answer, so I will update again then
Till then....x

Sunday, 13 October 2013

A blog from Tom

Cystic fibrosis, tobramycin, lung function, lch. All words that 18 months ago I had never heard, just like millions of people don't know what these words are today. These words were about to become words that I would use often. 

I didn't know where my life was heading 18 months ago, I didn't have a plan for the future. I was just the average 22 year old. Working full time, enjoying being young free and single. I would go out of a weekend with friends, spend my spare time playing football and going to the gym. 

Now 24 I would never have imagined I'd be were I am today. After all I had never heard the words "cystic fibrosis". I had no idea that cf (cystic fibrosis) would become such a major part of my life. That I would spend evenings and weekends in the London chest hospital (lch). That I would be caring for and looking after someone when they were ill. That I would find out the people I called my best friends, the people I thought I could rely on, wouldn't be there when I needed their support the most. But I had my family and I had my Kerry. 

I had only seen Kerry twice before she fell ill and needed hospital treatment. It was the night after our 2nd date. Facebook was how I found out that she had been rushed to hospital, just a few hours after I had left her. At this point I didn't know that she was suffering from cf. Although she was still a stranger to me I just wanted to be by her side. I remember thinking to myself "I have only know this girl for a month or so but I can feel she is unwell and I want to go comfort her." 

It was over the next few days that cf was to enter it's way into my life. I spent hours on the internet researching and learning all about cystic fibrosis. I was eager to learn so that I knew just what Kerry was going through as I visited her in hospital. We grew close over the next few months and fell in love. We would lay together and I would know when a coughing fit was on it's way, I would know if Kerry felt unwell. We shared a magical connection and we still do now. 

Me and Kerry are always on the same wavelength. We often think about the same things at the same time. All part of our connection. When she is happy I'm happy and when she is sad I'm sad. 

"We live together, we cry together, tom and Kerry for life." 

In march of this year we found out Kerry was close to being referred to the transplant team. Her health had been decling quite a lot over the last few years although the last 6-8 months had been pretty stable. Something she always says is down to me. I've given her a new lease of life, a new meaning to life and love. I've given her strength when she has needed it the most, I've given her my love and support, I've given her determination to kick cf right up the arse. I've given her all this just by being... Me. Why have I given her this? It's simple, she gave me her heart and I gave her mine. Kerry can always count on me for my love, support, strength and courage. When kerry told me about just how close to transplant she is and how much time she may have left to live if she doesn't get one, it was a testing time for us. It was a time we cried a lot and most importantly it was a time that brought us closer together. I made a promise to her that I will stand by her no matter what. And I will always stick to that promise!!! 

We made plans, there was loads of stuff we wanted to do together. We often talk about our life plans, wanting to buy the house, go on holidays and start a family. I would love to have kids one day and I know Kerry really wants to be a mum. She would make a fantastic mum! We often say we want a boy and a girl. She has so much love and kindness to give to our children and I will be proud to call her the mother of my kids. Although this is something we really want together at the moment it is not possible. It's not impossible for us to have a child now, but it wouldn't we wise to. Kerry's health isn't the best and there is a high chance that having a child would kill her. Her body simply wouldn't be able to cope. Having a child is a precious gift, but to me Kerry is more precious. I am not willing to risk losing her so we can have a child. This is something we both really want but it can wait. We will wait until the time is right, until Kerry's health is better, until there is no high risk of me losing Kerry.  I can't lose her, it would destroy me. I need Kerry just as much ad she needs me!

For now we will continue to be happy with what we have. We will concentrate on getting Kerry to maintain a healthy life for as long as possible, to always keep her smiling and when the time comes we WILL get that transplant and we WILL tackle cf, together! Together we WILL BEAT cystic fibrosis. 

Friday, 11 October 2013

Learning to listen

The hardest thing, by far, in batteling CF is learning.
Learning to adjust and learning how to listen.

Over the years my knowledge of CF has come on leaps and bounds , I understand the terminology, the facts, the science & how it affects the body,  I can picture what it is doing, I can feel what it is doing.
But the most valuable lesson I have learnt, is to listen to my own body as over the years it has required so much more.

I used to work in an office for an events complex, 6 hours a day, answering phones, taking bookings, payments, banking, ordering things the Buisness needed, and I enjoyed it, mainly due to the fact that I worked with family.
I also was the bar superviser for the same place, so would run the bar at weekends.
I loved my job, I liked speaking to people and I liked having a purpose to get up in the morning.
I left my job two years ago, as the hospital admissions increased, I was having more and more time off, and when I was there I felt less than useless, I couldn't be on my feet at the bar so would find myself sneaking of just to sit down and catch my breath.
I was deliriously tired during the day and was making mistakes in the office, booking people in for the wrong event, miscalculating the PDQ machine. My treatment was majorly neglected and put on the back burner as I was simply too exhausted to do it all.
So a vicious circle of missing treatment, feeling ill, working, feeling tired, so missing more treatment began.
My health made quite a sudden decline from a fairly acceptable 60 % to 40%
I decided to leave work and focus on my health before much more damage was done.
Learning to adjust to the increased regime was tough, I would wake up in the morning, feeling depressed and like I didn't have a purpose, I'd just roll over and sleep hours away, treatment still being neglected.
After many months of being stuck in a rut and more lung function decline, I decided things needed to change.
My adherence increased, I wasn't missing medications, I learnt to admit myself for Ivs as soon as I was poorly not waiting for weeks on end declining at home, convincing myself I was fine.
A year on from this my health still was not particularly going in the right direction. My lung function now sitting in the 30s, my treatment regime was to increase again
My lungs functioning on such a low level meant I could no longer do the things I would do with ease.
I used to get up do the housework, walk the dog, go to work, socialise, go clubbing and drink far to much. Nothing particularly needed much effort or pre planning.

Learning to adjust to my new life was quite a roller coaster, pre planning trips became the norm.
I could only manage 1-2 tasks per day, maybe a bit of shopping or seeing a friend, maybe light housework the next day. And mostly learning to adjust to a life with oxygen.
My mind is extremely active, too active infact, in the mornings it will plan a full day of things to do, when in reality my body Is struggling to keep up with my mind.
Many a time I would completely ignore my body and push it so hard to do the things my mind so wanted me to do, then at the end of the day when my body was screaming in pain and exhaustion I would beat myself up "why did you push yourself that hard" " your not superwomen" " you can't do this anymore"
I would fall in to bed, not just tired but exhausted, my lungs protesting with any movement, the cough causing tearing pain through my ribcage, my head feeling like it would explode from the pressure of coughing. My bones would hurt, I'd be curled up like an old lady, I'd even shake from pain and fatigue, my mind nothing but fuzz as it tried to contemplate the day and how I went wrong, how I caused myself to get in this state.
Over these months the adjustment period to what I can and can't do was actually harder than adjusting to my state of health, I knew I was poorly but actually having to change my life was something I felt far to much. I could accept I was Ill, that I had cf, that I wasn't inevitable but I couldn't seem to accept the limitations that came with it.
I was causing myself to be iller with my stubbornness.
My body was exhausted but my mind still so willing.
As time has gone on the learning process has been a great one, and one that has empowered me in a different way. As annoying as rest days are, they encourage me to focus my energy elsewhere.

Today is one of those days.

After a few days of what my body classes as strenuous, I have decided to take a day out, I'm in bed with daytime home makeover programmes, tea and plenty of snacks, I'm doing extra nebulisers and lots and lots of gentle physio.
Keeping my chest clear will always be an essential but to rest my body is more essential than that.
This however does not cure that pesky brain that runs a 2000 miles an hour.
Another learning curve was the lesson in focusing the energy my mind has.
I won't go in too to much detail just now as I don't wish to jinx any of my plans, but I have been extremely pro activ towards causes that are close to my heart. Obviously Cystic Fibrosis, but also organ donation, while my body is resting in my extremely comfortable bed my mind is as ever, busy. 
Im eMailing and arranging events to raise awareness to both CF and organ donation.
I have made a few contacts and lets just say that hopefully you will be seeing a little more of me in a an exciting way.
Once things are a little more sorted out I will share my plans with you, but for now its a work in progress :) 

Learning never exhausts the mind - Leonardo Da Vinci

Wednesday, 9 October 2013

Just an update...

My last few blogs have been quite generalised about CF, so I thought this one I would give an update on how my personnel life, health and relationships are.

 I took some time out from blogging last year as I felt my health was overtaking my life and speaking of it, and its tremendous decline was not helping towards my depression or acceptance to my current state of health. 
A lot has changed in the last year. It's like I'm a whole different person writing this today. One thing that has not changed is my love of Starbucks as I'm writing this curled up on a chair with a iced caramel latte, and of course sat with Clare, she'll forever be a constant in my life, I just can't get rid of her ;) 

 I guess the most major change in my life is happiness and acceptance of the current. My Relationship with Martin came to an end, a long over due end which was more than amicable as we could both see we were wrong for each other and brung the absolute worst out in each other, our relationship was destructive and we were destroying each other mentally. A relationship with lack of communication and support was bound to end, especially when support was something I needed more than ever with my declining health. I'm happy to say that we are both happy, have moved on and their are no hard feelings or hurt on either part. 
 The realisation that my relationship was over gave me a new awakening to life, I knew what I wanted to make me happy. I felt strong and empowered, ready to take on the world again. And with this came socialising and meeting new people, new friendships were formed and a confidence in me began to grow. After many months of living the social single life I felt like I was missing out on one thing that I had always craved. Love, attention and affection.
 Through encouragement of a few friends, who had tried and tested the taboo world of online dating, I decided to sign up, what did I have to loose, I'd been single for a while and my ego needed a slight boost as most people's do at some point in their lives, I felt good about myself but almost craved that recognition from the opposite of sex for validation. 
The messages started coming, "you look gorgeous, wanna meet up for fun" wink wink, "you look like the sort of girl who would look good in my bed"
 Absolute disbelief and shock washed over me as I was discussing these morons with Clare (over a coffee) I said to her I felt like a piece of meat, being window shopped by men who just wanted me for one night, I wasn't sure I wanted a serious relationship, but I wanted more than that, no wonder the world of online dating has just a reputation, this reputation was proving itself to me with every sleazy message that popped up in my inbox. I didn't fancy shopping for a man online, I was going to deactivate my account and online shop for shoes, guaranteed satisfaction everytime ;)

 So I logged in to my account, flicked through the final messages of sleaze in my inbox and located the deactivate button, a quick flick of my eyes over the screen one last time and something stopped me. Now I'm going to sound like a mills and boon novel here, but a guys picture really caught my eye, what can I say I'm a sucker for dimples, so a quick change of heart, I thought ok so im not going to meet my mr right on plenty of fish but if I can't beat them ill join them... so I clicked on mr dimples picture and sent him the most cringe worthy message EVER...
Hi, couldn't pass by and not say hello to someone with such a cute smile...send! Oh my god, I was Laughing with Clare at the sheer pathetic content of that message, defiantly one that would be worthy of the recycling bin if it was in my inbox...but to my surprise an almost instant reply,.. Haha thanks, you look really beautiful.... oh let the cheese begin. 
 We ended up messaging for some time, and I found myself looking forward to the beep of the online app, Tom had messages again I gushed to Clare. After some weeks we swopped numbers and continued to talk over text, we both deactivated our accounts from that point.
 I could continue and tell you how we met, where we went on dates, at what point we felt this was something special, even the point we fell in love, but I won't. I'll just say when we did fall in love & I felt happy.

 Moving forward 14 months and me and Tom are living together and he has given me courage, strength, and a love I never thought could actually happen. A truly amazing strong man has that has not only changed my life for the better he has given me a positivity I never thought existed in me, we are now fighting together and I have to Win this fight now, for what better reason is there than happiness to keep you alive.

 My last blog, as I recall was based on the fact my lung function was stuck in the 30's this is still unfortunately the case. This is quite possibly the sickest I have ever actually been, my lung function is sitting stubborn in the low 30's. There has been the addition of oxygen, I use this on movement, I.E housework, walking, anything really aside from sitting still and sleeping. The absolute horror of having to overcome leaving my house with an oxygen cylinder strapped to my back was more than I can bare. In fact I refused to leave the house for many months while I adjusted to this visible sign that I wasn't the same as my piers, I was in fact sick, something I had always tried to hide, but here it was every evidence of sickness was visible with the nasal specs up my nose as I moved through the swarms of people staring at me as. Even worse when I was in my wheelchair which is now essential for long journeys.
I was everything I never wanted to be, but yet somehow once I got over the embarrassment, and realisation that I would die far to soon without these aids which my lungs so badly craved, I almost embraced this new look. I almost took on a gay mans 'I'm here and queer chant'  accept it was I'm here and I have a tank of air. 
This tank of air was the thing that was allowing my lease of life, it's surprising how you can actually walk a little further with that magical substance called oxygen, something god so kindly forgot to gave me a good enough supply off :) 
The stares that used to render me useless, a crying mess in the middle of town was now, my new accessory, like a handbag, I embraced the stares. I may be a slightly different, and my face furniture may not be stylish gok wans but its my face furniture and I'm strangely proud of it. It's got me to where I am now, so for that I have to love olly and will...(olly the oxygen tank and will the wheelchair)

 I don't feel I want to talk about my health much more than that at the moment, I'm not entirely sure why, but I think it's because I don't want every aspect of my blog to be about mundane Cystic Fibrosis, it does get boring :)

 I think I'll talk more next time, so Untill then....
Thanks for reading :)

Tuesday, 8 October 2013

Tattoo Pictures

 My tattoo, 'They now fly with angels, They now breathe easy...In memory of my 2 friends, Danny Valentine and Jamie Moles, R.I.P Angels

Toms tattoo 'Cystic Fibrosis-I wish time was on our side

Two pieces of art, dedicated to Cystic Fibrosis and just two of the people it took too soon xxxx

Me and Tommy

A photo purely to see if I could figure out how to upload pics....Ta dah :)

Cf - 'Sufferer' ??

Collins English Dictionary defines the word suffer in this way.. 

To undergo or be subjected to (pain, punishment, etc) 
To undergo or experience (anything) ⇒ to suffer a change of management 
To be set at a disadvantage ⇒ this author suffers in translation
To be prepared to endure (pain, death, etc) 

 As a sufferer of Cystic Fibrosis I find myself looking towards the meaning of the word, and its negativity. 
"Be subjected to pain or death" 
Death in all of us is inevitable, it's the one thing we can guarantee in life. But should death mean making old age in a painless way. 
 Everyone at some point will most likely suffer from something, illness, heartache, depression but most of these are short term, something the mind and body can overcome with help, encouragement and possibly medication. 
So I ask my self if suffering is actually the correct word for a long term illness. True you will suffer in ways most healthy people wouldn't but on balance I feel sick people actually have a healthier outlook on life, a passion, a yearning to better themselves and do things they were told they never could.
 The illness itself seems to be much less dramatic to the sufferer than it is to their piers, as its there life, it's day to day living which seems so normal, no matter how abnormal it actually is. 

 I realised recently that the life i deal with everyday may in fact be viewed as abnormal. I was arranging a weekend away with my partner. Of course we went through the rigmarole of choosing a destination, the hotel, any extras we wanted to include in our booking. For most this would have been the end of it, a weekend in the Cotswolds booked, done and dusted, but then the abnormality part of my break kicked in. 
 I had 2 nights and 3 days away from home, I would have to ensure I filled my medication case precisely so nothing was missed. 
 140 tablets packed in their separate containers, 20 each morning, 10 each night and a further 30 during the course of each day. 
Two inhalers. 
 Two separate nebuliser compressors for 3 different inhaled medications, as well as a cool bag to keep them at the correct temperature. 
Insulin pen, blood glucose monitor, testing strips, needles and a good supply of glucose tablets
 Nasal spray and gel. 
Portable oxygen cylinder, the mains charger, the in car charger, the back up oxygen cylinder should the first one fail, along with different masks/nasal cannula for each cylinder.
 A jab containing adrenalin should i have an allergic reaction. 
My prescription slip and a letter from my healthcare team should I need to be admitted to hospital if I get acutely unwell and need to be admitted to a hospital when I'm there. 
 My wheelchair I'm not even sure if that's all of it as I don't have my usual checklist to hand. 
That was just the packing. Before all of that could actually happen I had to ensure my chest was in optimum condition so I had to arrange a course of antibiotics to last 2 weeks prior to my breakaway to ensure any bugs that may have been brewing in my chest were killed off so there was less chance of a flare up whilst I was away. 
Our English dictionary defines 'suffer' to be set at a disadvantage. In many ways I know, and can accept that I am at a disadvantage, yet it somehow feels so normal.
Another definition is to endure pain, which I feel is the more relevant definition in association with Cystic Fibrosis, I have wrote in detail before how the pain of CF can be so debilitating and unlike any other pain I have known, it's a tormenting mental pain as well as a physical pain

What does suffer mean to the majority, a question I often find myself asking.....

Saturday, 5 October 2013

Great Things

If you cannot do great things, do small things in a great way - Napoleon Hill

 As an author of literature, I feel Napoleons words, in some way, should be recognised as insightful and true.

I know I will never, in my eyes, do great things, so I do strive to do small things well. But do people's opinion of great things differ in many ways?

 Making old age I won't, that great thing is unachievable, but the small things I do along the way I hope are great. 
The love I show for my friends and family are great, as is my gratitude for their care.
 The respect I show for my healthcare team is great. 
But I fear my life achievements are not in there selves great. I know many things I'd like to do are limited, my high flying career as a doctor unfortunately will never happen, I would pose to much of an infection risk to patients, as they would me. 

 Travelling through Europe, isn't what I would call an impossibility, but the sheer spontaneity of my illness would make it extremely difficult, not to mention the cost of insurance as an oxygen user. 

 Having children, again not an impossibility but before transplantation of my lungs would be unbelievably reckless and irresponsible, not to mention selfish, as my longing to be a parent could possibly leave a young baby and and boyfriend without me.

 These are what I call 'great things' achievements....normality.

 I'm very optimistic that I will find a donor when my time comes, and even more optimistic that I will recover well. I am also realistic, so would not go in to this procedure not knowing the risks and difficulty of it, mentally and physically, but without optimism, without hope, where would we be.
 Untill I'm post transplant I know I need to keep my plans on the back burner and concentrate on the now....the smaller things.... Maintaining my current health of 32% lung function, by continuing with hospital admissions, the medications, inhalers, nebulisers, increased calorie intake, oxygen & physio. A small price to pay for health and happiness.
I feel I have a great life, I have my home, my friends, family & partner. I'm very lucky to have the support network that i do, which I know many people don't, I have never gone without things (other than a little oxygen and lung function) ;)
But I am happy, more than happy. I feel lucky and appreciated and most of all loved.

Maybe all these small things, are infact, some of life's greatest things. 

Maybe great is just how you perceive it?.......