The unfortunate Harsh reality of being a CF sufferer and knowing other cf sufferers

Unfortunately CF can cause some people to be on this earth and have life for a very short period of time.

I have learnt today that from people I know two people recently died due to the sad reality of Being a suffer.
One was on in teenage years (15 years old I believe) and the other im not sure but around the mid to early twenties.

Its such a shame to learn of these sad losses and may these two people suffer no longer and be able to rest in piece and no longer in pain.

I thought id write this post just to talk about my advancing years with CF and having become friends with more and more sufferers and why I become friends with other sufferers (which other people try not to do for very much understandable reasons)

Im now 26 years old and due to turn 27 years old in a months time. I still find it weird to think I will be 27 soon not because im a sufferer but just because I sometimes forget how old I am (yes roll on the closer to 30 jokes)

Ive had a odd rough year and been a fool on occasions with my health (and learnt hard lessons in doing so I might add) but generally ive had a fairly good run with Cf and trying to be as healthy as I can be to nearly reach 27 years old I feel farily proud of that acheivement and the help ive had over the years to be in as good a shape as I am

I am noticing that this past year has without doubt been my most challenging and difficult health wise and I have lost an edge on keeping healthy and fighting off the many bugs that come with having cf and staying as healthy as possible but its not something im giving up on and am and will be trying my best to get my health better and my fitness up to a better level (I have even said I want to do tough mudder with a few friends in 2013, I must be mad I know) But I wont complain I think its mainly my fault my healths slipped so its my responsibility to get better and healthier.

Keeping fit if possible is very important with Cf but i will keep that for another post and im sure ive mentioned it in previous blogs anyway.

So why am I writing about being friends and knowing other sufferers and getting older.

Well In the last year Ive become friends with some amazing people who suffer from cf and their friends and family around them and I have actually learnt alot about cf and myself from knowing other sufferers (Does that sound Strange?).

I hope this does not sound selfish but the most important thing I have learnt knowing others sufferers is how lucky I am with my health and that I do not suffer as bad as others seem to. I take this as a good thing that im lucky not to suffer more.

The second thing Ive learnt is how different cf can be from person to person, I mean dont get me wrong i knew that no two sufferers can be the same but wow cf is such a wide expanse of the unknown to me and how widely different it can be between different people.

To give you an example Im 26 and I have a friend with cf who is in his thirties and we both have good lifes and have full time jobs which we have had for quite some time (I have worked full time since leaving school and I believe so has he) and for many years he was one of only very few people i knew with cf so I was learning from others but not as much as. Late last year I met someone who was only 17 but never even thought of working because his health just would not cope with it and he thought everyone with cf was the same. Imagine mine and his shock when we sat down and spoke about our two entirely different worlds we live with the same illness or not so as the case seemed to be.

I have another friend who gave up her job as a hairdresser due to all the sprays and additives in the air making her too ill and was adviced by her doctor to stop immediatley and find an alternative job.

I hope your now starting to get even just a little incline in to how different it can be.

Over the past year I have loved getting to know more and more people with cf and learning from them not just how different we all are and how their lives run but I have met some incredibly positive people and their mentality is amazing. The one thing many of us have in common is our positivety and determination to fight for our health and beat cf as best and as long as we can and how that positivety and getting to know others is helping other people who are not so positive.

CF is a very big community when its looked at through simple eyes so many know so many others it great to see people talking and swapping experiences of cf be it negative or positive

The only negative of getting to know people is ive seen more and more of worst bit of cf and others that have not been as lucky as me with their health

This negative can be put in no other way. Im learning more and more of the worst cases of CF

DEATH

or as alot of people saying politely people losing their battle to this cruel illness.

Ive made quite a few friends in the past year and its been nice to know others and chat. Its very comforting when your in hospital and you have people to relate to but I sometimes feel a sense of guilt when im able to walk out and go home and others have not been so lucky and you hear of the horrible news

In the past 6 months 5 people I knew with cf have past away. And im not saying thats because its happening more often than any other previous years I just havent known that many people with cf to have known about others passing away.

Before the last year because I had so few friends with cf I had only known of one person dying of cf since I have been born and that happened 5 years ago. I knew it happened alot but i didnt know enough people to hear of it or have know others who have not been so fortunate

Now I do and its unfortunate that this is the area of cf i seem to have learnt the most about recently.

Does it scare me? Im asked alot.

No not really because if I know its coming i will make sure I dont suffer and get it over with quickly. Not so I have to go through pain but so friends and family dont have to see me go through pain and cause them to suffer because of my ill fortune

Does that sounds awful? Im really only thinking like that with good intentions.

The worst bit for me was I used to think it didnt happen that often but One person inparticular opened my eyes and in no way intentionally to how harsh and quick cf can deal with you.

I met an incredible new friend who i got to know so well and feel such a connection too and especially having a similiar funny (if not to everyones taste) sense of humour. To have spoke to him so often and joked and made stories up with of escape plans and book writing

Not long before he died we were having a chat and our usual jokes (in our unique sense of humour) saying dont worry its raining today your bound to get that transplant today its a known fact pizza delivery boys get killed more in the rain as they are rubbish scooter riders. To which he replied if the rain dont get them Ive just ordered a sniper rifle (Im sorry if our jokes upset anyone)

The next thing I knew he was moved to intensive care and sedated and I was unable to speak to him again. And just like that on the day I had a hospital appointment (at the same hospital he was in) he unfortunately passed away. I had learnt a horrible truth to something I never really paid attention to not because i didnt want to I just never opened my eyes to other sufferers and made friends before.

It wont ever stop me either from being friends with other cfers but it made me think remember how lucky I am but also dont forget others are not so lucky.

It upsets me to know others and hear of peoples passing but I count my lucky stars I am who I am and i wouldnt change me for anything.

When I recently discussed these horrible events with my cf friend who I have known for over ten years he summed it up nicely for me although others may not like what im about to say

He simply said

"Growing up with cf is like growing into old age in a big family or a big group of friends, you may be lucky to live many years but the older you get the more loved ones you know will die and that will only occur more often with time and the more people you know. Then again you could also be one of the first to go either way someone will see another person suffer"

Life has two guarentees.

Your born
You Die

CF just speeds that process up

If I live past the average expected age I will be having a massive party not just to celebrate the age ive reached but the journey ive been on to get there and beat the statistics.

The only real advice I have ever noted down from my doctor is keep up with your health and 40 years old is well within reach. Simple but very much headline grabbing advice

 If its not it will only be my fault.