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

Wednesday, 30 November 2011


I'm not to sure what to write here today, i dont want every post to be depressing but im finding it hard not to be depressed, so maybe just an update for today while waiting for my spirits to pick up....

First of all i want to say a huge congratulations to kirstie and stu on the success of their documentary on bbc. Thanks to all of my friends that watched and an even bigger thanks to the 7 that signed the register that night :) We have had calls off of our friends and family saying they had no idea what cf entailed and i know kirsties aim was to raise awareness so i know how pleased she must be with the outcome.

After posting my last blog i received a lovely message from my good friend, we'll call her tracey for now as to not embarrass her. I wont go in to too much detail at what she said as it was quite personell but it was lovely to hear that she was starting to understand cf and how lonely it could be for me, knowing that my friends are willing to offer there time and support when they know i need it is so nice, it does take the loneliness away.

I feel since i have decided to put my life out in the open i will be more accepted for me, friends and family will understand if i let them down last minute and know its nothing personnel. I would always worry people would think of me as a let down or not a good friend for missing events, i am (believe it or not) quite a shy insecure person always worry what people think of me, i guess this steamed from being bullied at school, made to feel my cf was something to be ashamed of, something that made me different in a bad way, like i wasn't good enough to be friends with.
I have never in all the years since leaving that school and those people got over the fact that my cf made my life hell, or the fact they made it hell because of my cf. They will never know that their words of negativity have made such an impact on my life, how the cruel words that were spoken in such haste have made me the way i am today, shy embarrest, ashamed, hiding away from the world in the times of most need, making the loneliness and solitude worse for myself through fear of the repercussions of being 'the sick one'

Some people may wonder why im doing this blog for all to see, am i attention seeking? wanting a sympathy vote? Well the answer is no...

My main aim is to raise awareness of cf so that people can understand its evil as they do if it was a cancer, and to help save lives by signing the donor register.

But secondly for myself...
To stick 2 fingers up at the people that wished me dead, said i was a waste of oxygen, said id be doing a lot of people a favor if i just gave up....You nearly killed me, i did give up, but the strength i had eventually pulled me through, and your words of cruelness has made me who i am today...stronger than you will ever be, my life may not be as active as yours but i know im doing what i can, so if i am out in a wheelchair one day i will no longer feel like being invisible, wanting to be faceless, not to be recognised but being proud that i am still alive......

Monday, 28 November 2011

Mind Set......Go?

My mum, for as many years as i can remember has said to me .....
'Kerry, you have to keep your mind strong, if your mind fails your body will follow'...
So these past few scary days, and i do mean scary days i have really been thinking hard about mums old saying!

Ok so does this mean if my mind is strong my body will always be? defeat cf? defeat the inevitable? defeat history and drs predictions? ..or does it mean switch my mind of to cf completely? be oblivious to it? can the mind do that? is my mind making me ill? ..well these are the questions i have been battling the last few days why my body is slowly shutting off. I wondered am i shutting it off with my mind?..The Answer quite simply was yes!!

Ok, obviously im not imagining my symptoms, my illness, the pain, the fear, the medication, the sickness, the tightness....however i was VERY willing to lay down and let it take me without fighting, i felt to weak to fight..its a battle i am never going to win. But again another saying of ol dear mum popped in to my head
'If you fight, you fight to the death, and you don't go down without a damm good fight'....A damm good fight ran loud in my ears? A good fight? This is not a good fight, its beating me and im happy to let it, im happy to lay here and let it beat me, what would my legacy be?...she gave up, she let it happen? SHE WAS WEAK!! She dissapointed us and herself? ..
Or could i muster some strength from somewhere gain some control and put cf back where it belonged, a small part of me or 'ALL' of me?

Well obviously my mind can not heal me but it can help to a certain extent, along with the right mixture of medication to get me through. So here is the part where i tell you im putting my foot down with my team, i will no longer be fobbed off saying im on all the medication that is right for me, im clearly not if this is my daily life, just 4 days of nebulisers i have been taking from Clare has opened my lungs up beautifully so much so i can wake up in the morning and roll over, sit up, breathe! I dont have the paralyzed feeling that my chest is keeping me pinned to the bed under the pressure of the shit that's stored down there that the tight airways wont allow to move past, i feel lighter. Lighter in chest, body and mind!!

As a keen girl of yoga and the Buddhist practice of 'mindfulness' i kind of feel empowered this morning, like my mind is ready for this fight, its almost wanting the fight just to prove it can win, that the weakness was a temporary disability and not to be taken advantage of!
Thats sometimes what i see cf as, this thing in my body that tries to eat away at me, like a demon making its way through my lungs, uninvited and taking advantage!
Surely its only me that can stop it in its tracks? (well me and the right medication)

I am meeting with my team Friday.
Me and the fight that has returned in my mind will tackle this demon, i will not leave that hospital until i feel the treatment plan im on will be as strong and as good as it can be...

My mind is set...so lets go

Friday, 25 November 2011


I Thought i would blog today as i am just sat here with lots of things going through my head so thought it would be nice to write them down to hopefully clear my head a bit....

Today and the last few days have been terrible health wise, my chest is so so tight and i feel i am suffocating in sputum.
Today it really did reach a really horrible scary stage, i was woken up by crippling pain shooting through my lungs, it felt as if i was being sliced slowly through the length of each rib, it was causing sharp shooting pains and causing me to make sounds i wasn't even aware i was doing until they were coming out my mouth, a kind of deep groaning sound mixed with high pitched squeals.
I grabbed my inhalers but couldn't get enough air in my lungs to even inhale the medication, i decided to instead have a nebuliser of mucoclear to try and shift the sputum but it was making my airways tighter and the cough was unbearable with the pain.
I was panicking and started hyperventilating through pure panic, it was scary, i started to feel dizzy and sick. I then tried to have some heated saline through my nebuliser to try and sooth the airways but again it made no improvement, more panic was setting in the cough wouldn't stop and i was in so much pain.I text my friend Clare and said i wouldn't be able to meet her in Starbucks, she seemed quite worried about me as 20 minutes later she turned up with more medication for me, she has asthma so knows the signs of restricted airways more than anybody. She gave me atrovent and salbutamol nebs which eased my breathing after about 20 minutes, i started to calm down and feel more settled so i could get air in now, my heart raced at 140 beats per minute but this was mainly a side effect of the inhaled drugs, they also left me very shaky which again is a very common side affect, just slightly uncomfortable.
My limbs have felt really heavy all day, they felt alien to me like i wasn't in control of them like there was a lead weight in them and i couldn't lift them, once i was breathing better and after a hefty dose of steroids, 60mg i dosed off to sleep.
I didn't know but in the 2 hours i was asleep Clare had left to go to the chemist to get me a new blood glucose monitor, i had lost mine a few weeks back and never got round to replacing it, naughty i know!!! ..steroids are known to make blood sugars high so she was determined to keep an eye on my sugars beings as i doubled my usual 30mg dose of steroid.
I normally would never have taken drugs not prescribed to me through fear of side effects but i was desperate, i was so scared, i could feel my lungs shutting off as my airways were tightening, the panic had set in and i would have taken anything to stop the pain, the breathlessness and the fear.So anyway when she got back from town she tested my sugars they were reasonable at 7.3 but slightly high as id not eaten a thing all day, my chest felt more settled by now so i had enough breath to think about food so Clare left me with nebulisers to keep me going over the weekend but i think a call to my team is in order Monday as they refuse to believe i have asthmatic symptoms..well today proves i do especially as i responded so well to the medication from Clare, much more response than to heated saline which is what they have given me.
I dont want other mornings to be like this morning, it is completely life limiting, i can never keep plan with friends, the shortness of breath and the pain is debilitating and after the many hours it takes to get my chest to a reasonable standard im far to exhausted to go and bath let alone go out have fun and feel fulfilled daily.
I feel my life switches between pain, medication, extreme fatigue and tiredness then eventually sleep.
I'm a prisoner in my own bedroom even downstairs is off limits as coming back upstairs is more effort than its worth as it takes me 20 mins to recover from the exertion of the stair climb.Im fully compliant with all my medication yet im in this state more often than not, I'm just declining day by day.
My age scares me as in the CF world i am old, average life expectancy is around 30 most people at 24 have had a transplant already or worse yet passed away, i know i must be doing reasonably well as im not even listed for transplant yet but i feel that is coming.
I'm finding it hard to stay positive but i know i have too, because if i dont whats the alternative...death? Death scares me but somehow i feel it looming somewhere in the background and it scares me to my very core.
I can not give up this fight just yet i need to find the strength from somewhere.....somehow