Cross infection Its not something new and its going to hurt people who it stops

Ive just read another CFers blog and some other articles and if im honest im quite annoyed by it. Not by the person who has written it as his words are very true but more about why people think this knowledge is new and like a law

Firstly Cross infection in cf is about not mixing with other sufferers. Why you ask because it is very to give one another the bug I or they may have causing one another to get ill. Thats basically the short of it.

Why Am I annoyed you ask?

Its simple for some reason people have this idea that this is a new discovery. ITS NOT and secondly some people with cf are only just becoming aware of this. WHY? And Last but not least

Without being introduced to another cfer by the cf trust my life could have been very different and I may not have been here. And people need this contact I can very well vouch for that


To answer my first annoyance

Im annoyed because its not new.

Yes when I and many others were younger (im talking from being babies up until like early teens) we were all bundled into the same waiting rooms and talking and playing with toys and no doubt wrestling with eachother for fun whilst our parents chatted about how we were all getting on qand how who and when of course along with the usual "stop that" "will you two calm down and keep it quiet" etc. It was all fun and we all know eachother well and still to this day I talk to many and see many people I knew from my early days.

But as time went by and especially when I moved to adult CF wards it was very much known and taught that cross infection was a big no no. Im hoping that im not offending people with this blog and I may have read some things wrong but I knew or was told about cross infection nearly 10 years ago and have been reminded of it every year since by my cf team. May be people are only learning more now because more is known about it and the consequences but why now

We didnt need to learn as a sufferer what the consequences could be surely well for me anyway I was aware enough by just being told cross infection is dangerous. That was warning enough for me what else did I need to know I didnt need to know the ins and outs and the hows and whys I just knew danger

Which I accepted and yeah have ignored to some extent but im not going to wrap myself in bubble wrap and a face mask smoothered in cleansing wipes to be extra safe.

To answer my second annoyance

It seems to me that some cfers are only just beginning to be seperated from other cfers and becoming aware of cross infection. Why? The hospital I attend have made me very aware of it for nearly 10 years since day one of attending adult clinic and each year have reminded me and told me more about it has they have learnt more (Although we still have to share facilities on the cf ward but thats in another blog i wrote previous and its not their fault they do their best) Sharing their knowledge to make us wiser, but they still leave it to us to decide what we do outside of the hospital.

 Its like any sports man in a dangerous sport they know the risk, they learn them and try to avoid the risks but they accept that and understand you cant stop everything 100% and they then choose if they should participate or not.

 Us cf sufferers are and should be given this choice. We should not have it taken away from us.
I understand whilst under hospitals care they keep us all apart to avoid cross infection its part of a cf teams responsibility

BUT

Like my doctor once told me. In here its like prison but we are not law we simply ask you to abide by the rules and we try to police it and most of you when your on our side of the wall help us and stick to those rules, but when you walk out those doors its your life and what we dont know wont hurt us. Life is your own choice not an instruction manual of step by step, 1,2,3.

I can even admit that when I go into hospital we all avoid eachother on ward but people meet in the cafe or like I did with a couple other cfers in hospital last time I was getting treatment we went to Nandos together sat had a meal and a chat but we did air some caution we all asked who was suffering what and if someone had something different they didnt come as they didnt want to risk too much. Risk management. And we could only discuss what we knew we had so we did try to be safe but we also knew it was good for no one to just ignore eachother.

I know some cfers will read the above and be disgusted or disagree but I personally need to talk to other cfers not by facebook or twitter or email but face to face its nice and its lovely to do so and swap stories discuss eachothers wellbeing or not so wellbeing as it may be.


 My last annoyance is a HUGE one for me and whilst I understand cross infection is very bad there must be some way that something can be done so we can talk to other cfers face to face and meet and greet and heres why :-


In my early teens I remember being introduced to another cf sufferer so I had someone older to talk to and relate to and start to understand later years with cf and have someone other than friends and family to discuss things with because we had a great understanding of what we were suffering (And to this day im still great friends with this person)

Infact I needed this introduction my life was in a state and no one could help it or me

What your about to read very few know and I havent told it because I didnt feel I needed to until now

Do you know who set this introduction up?

A member of a CF Charity. YES its true

Shocking to think this would happen nowadays because cross infection is so well known about but 12-15 years ago they helped alot of cf people meet up because it helped people to meet and greet and talk it was like counselling and I for one am very grateful for what they did for me like so many others, it helped me turn my life around at a time in my life when I told my mum and dad I didnt care about it anymore and why should I bother. So they asked for help and the CF trust helped me

The day that man turned up on his motorbike and said "hi im paul" I will never forget because he basically saved me like I cannot explain and I will always feel I owe alot to him.

 If that person from the CF Charity had not offered to help and Paul had not of turned up, made me laugh and talk about things like no one else could understand with complete honesty I would just not bothered and let it kill me, I was at a point in my life where cf got me to my lowest. I really wanted my life over because I had so many questions and no one to give me answers I just thought well no one understands or cares I might aswell not bother.

It makes me cry to say that and im sat here with tears filling my eyes but motorike Paul turned out to be Saint Paul (he infact has his own angel but thats not for me to say).

He talked to me like no one could by answering and telling me so much about cf and what life was like for him suffering with cf and what life looked like in the years I had not yet reached.

He made me understand that it wasnt that people didnt Care, it was that they just couldnt answer my questions.

The cf charity understood me they put me in touch with someone else and he became the person who answered pretty much everything made me turn round and change what I thought and how I cared

That first meet saved alot of me and helped me to which no end of thanks can ever be written by me or expressed in words.

It sounds dramatic (im not looking for drama or tears its just how I can type it) but I wasnt the first and Im not the last

People who struggle with cf and look a hand to lift them off the ground need things like meeting others.

There is no doubt in my mind the cf charities helped many people in this way and I feel like the severity of cross infection and how trying to seperate people and stopping people being able to help in ways they helped me will stop others from getting help and will make people hide, make them dissappear and want to dissolve from view.

There must be a safe way for people to meet, no counselling, no friend or family member could help me at my worst but someone who knew who suffered the same could and others will need that help, it would be disasterious to stop people talking being able to meet.

I want to say that the only reason my friends or family couldnt help was not because they didnt want to they really did but they were just not in my shoes to be able to feel it, to see it, someone else with cf could and others will in the future.

I also need to say that im not saying cross infection is a load of bull or lies it not I know that and i know others who have suffered because of it but what im saying is from reading certain things and talking to people it feels like something is being completely taken away like we only have one option.

Its not we have a choice and if we fall foul of that choice its not like we didnt know the consequences.

Its just sometimes

Risk outweighs rules

complexicity is sometimes needed to help the plain.

Reward outweighs risks

Life is more important than anything else no matter what

Its why people give their lives to save others.

Rules are made to be broken.

Thats why so many have ignored the rules its how the world has developed its just understood the risks along the way the came out successful.

Im sorry if this offends anyone I just dont want people to think we should hide from one another but at the same time more people should know the risks to help both sides work together and find a solution.

In an era where we are always advancing and the world learns so much day by day, why should hiding be the safest way? We should not have to retreat just to be safe we should be able to shake hands say hi and learn a way to do so.


I know the risk but I also know I wont hide to be safe. Im not boring and no one should be forced to be.

Cross infection is serious I want to say that again I know all about that as do many
but we cant step back in a place where for cf the first step forward took nearly ten years.

I will do anything to stop cross infection but i will do anything to talk face to face with a sufferer even if I had to where a space suit to do so or wear a glove just to be able to shake hands.

We know about cross infection so now we should learn how to work with it and not have to hide

Im sorry