Is my body changing? Getting fed up and what the changes might mean for me

Well I'm not well (I know I know same old story aye) 

It's getting very annoying. I've coughed up blood had chest pains (which is rare for me) been sick in general, aching all over and generally feeling very tired and fed up with everything health wise and life in general.

I am starting to wonder if my body is starting to change??? I mean it's put up with a lot in the last 28 years with the bad leg cystic fibrosis and diabetes.

I feel like I'm getting Sick more often maybe it's just a spell. It doesn't feel like it though.

I'm fed up with feeling like this

So much to do in so little time but I feel like my body isn't wanting to do anything and by trying to push it I may be pissing it off more

I'm still trying to work and get on with things but it's hard when you feel run down and feel like sometimes people don't understand maybe people don't appreciate how I feel inside but that's no ones fault.

I've only been out of hospital 4 weeks and already I have a bad irritable cough. I just don't get it I don't get this sick this quick normally.

It is really pissing me off.

So much so ill or not I decided to go running again and through being sick and pure determination I managed to run a mile in 13 minutes. That might not sound a lot but to me its a step in the right direction and I felt better for it.

I'm going to keep running and pushing but I need to figure out what's wrong with me. I hope by pushing I'm not making things worse but I feel so down and ill and angry that I refuse to sit and take what's coming to me.

I just feel like venting my anger. Do you ever feel like no one gets you? Not because they don't want to but because it's so hard to explain for someone to understand???

I feel like I need time off just a shame cf will never afford me that time.

 

I know there's always someone worse off but even me being so positive I don't always feel like that.

I'm sorry to moan and whin but I like to use this blog to do so.

I want to get better because recently I felt like I'm not doing enough like I'm lazy but first I need to get better.

What's that famous saying, first you must help yourself before others can help you.

Well actually I want to help myself so I can help others.

In 2014 I want to do three things for charity

Climb mount snowdonia

Jump out of an airplane 

Run a half marathon climb run walk or crawl over that finish line.

So I have set myself challenges 

Now I just need to get better.

I have always had it in my mind that I won't live much past 30 years of age so time is of the essence.

My body either needs to let me get better or I do my challenges poorly. I'm not stopping

Right now though I need to go away study myself and figure out what's wrong

Then let the challenges begin

I've had enough this is my hardest blog

This May sound awful as I know there's people more worse off than me but I've had enough.

Right now I've had enough of everything 

I want to lock myself away and be done with this all.

I have to say this because people around me really have no bloody clue how bad I've become mentally so here it is.

The last couple months I've just thought fuck it

Why bother anymore? 

And everything is beginning to annoy me

I have seriously thought I just want out.

For nearly 28 years I've put up with all the s**t CF has thrown at me and dealt with it as best I can 

Well it's worn me out, wiped me out, worn me down. CF can kill in more ways than one

Three months ago my health was better than it's been in years then within a month of that great feeling cf has chucked everything at me 

And it's proved its point.

3 months on I'm back to bad health and a hospital bed

Like the doctor once told me 

"My job is not to make you better but to delay the obvious!"

I cannot see past THE OBVIOUS anymore

Don't get me wrong I'm not saying I'm suicidal far from it but I'm just lost

Lost to fight

Lost to reason why I do all this

Lost to see why I keep repeating my life day in day out

Lost to see why it's the same old routine 

Lost to see past average

How can someone say this is the average this is what we expect?

My lung function has somehow in 3 months dropped from 2.9 fev1 to just touching 2, I've never experienced something like that drop so quick before.

I'm doing as I'm told, 5 IV treatments everyday 3 nebulisers and 2 sessions of physio but I'm struggling to see what for but I won't stop

I'm at a mental crossroads

Yes I know I'm being selfish but it's my right to be but I also understand this May anger people

Everything in my life is good I have good people around me, money has no meaning and I'm loved I think that's how life should be I couldn't ask for more in that respect

BUT

That still don't make all these things in my body stop attacking me

Maybe I should let it and dull my tones?

I'm going to see a councillor soon it's something I think I really need. Someone outside the box to look at me tell me I'm complete crackers then try sticking me back together.

I will admit I don't not wish to hurt anyone especially those close to me as I cannot live without them 

I want my family and the people close to me to know I'm sorry

Sorry for being a bit of a let down right now in writing this

But sorry most of all for these feelings.

But I cannot see why I should have to live with CF that's how made mentally I feel.

I never used to question cf just got on with it, lately it's all I've done

Question question question

This blog is not a cry for help 

Not at all 

I'm sorting out what I need to do I've contacted who I need to for help

It is my first admission that finally I need serious correction.

My first admission that I'm at breaking point or more to the point my health has pushed me to breaking point

I'm sorry that I have written this but people who don't see it need to understand because I have not mentioned any of this to anyone I've felt like I had to hide it. Act normal enought thought in reality I realise I have been rude to some people and maybe it's been noticeable that something isn't right

I'm doing things my way 

That doesn't mean I'm going to stop being me. Or change towards people or anything like that 

I'm not happy in my cf life side of thing I'm just not happy with me for being how I feel right now

I've seriously thought about giving up work going bankrupt and acting like I've started life all again.

Because I feel like starting with nothing means I have nothing to lose (I don't mean throwing everything away it's metaphorically speaking)

Then and only then do I have everything to gain to try a new lease of life

This is proberly the hardest thing I've written

But I'm glad it will now be out in the open

I'm sorry for this blog

CF & How it can affect your growth in younger years

I thought id write about something that I have not known many people to talk about but that I know can affect alot of people with CF

Why dont you hear many people talk about it?

Well Maybe im a one off?
Maybe it doesnt affect that many people
OR
MAYBE some people are to shy or embarrassed to talk about it?

But why when there will be others out there affected by the same thing who will be looking for guidance or other peoples stories but too afraid to ask as they are worried someone may laugh at the them or be bullied
Or simply that they just havent spoke to someone whos been through it themselves

Im talking about

CF and how it can affect growth in a person with cf.

Here I thought id write about it and say YES CF AFFECTED MY GROWTH

So for people reading this blog thinking "is that me" or "Am I the only one out there who has noticed this" "Is there someone out there who can help?"


Your not alone

I will be the first to admit that as I reached my early to mid teens I noticed something wasnt right and althought I never told me friends about it at first I decided that I would seek help.

And before you ask

I was only about 13-14 when I started to think stuff it im going to ask.

At 13-15 I was still a what some people might call a puny teenager.
I was about no more than 4ft tall at least a foot or more shorter than anyone else, my voice was showing no signs of breaking and I was sure I wasnt developing like my friends especially in the Genetals area.

It started to affect me quite bad as I was at an age where girls were starting to become a real interest to me and I was starting to convince myself i was not going to catch up with everyone else physically and would have to ignore girls and hide from my friends until things started to happen.

Some People used to jokingly think I might be gay as I wasnt showing the usual interests in girls (Infact some people still think I am now but thats another joke entirely)

Mentally i was feeling left behind like I should stick to a quiet corner so I didnt get noticed and physically I knew I had no chance.

Well after about a year of worrying about it I think near my 15th birthday I decided to tell my parents about my worries and after my dad joking about saying I was destined to be short like my mother (He was correctly slapped by my moher im sure although he was right now im taller than my mum I can say my mum is just short but no doubt my mum would reply "The best things come in small packages" You keep thinking that mum) My mum and dad spoke with my paediatric CF team who booked me in to see a growth specialist.

The CF Team were brilliant and his all happened within a matter of weeks of me voicing my worries to my parents and to my cf doctors.

Well sure enough after a few tests with the growth specialist who was a very nice person and helped me feel better about my situation and even more confident, that yes I would catch up with my growth

PHEW

Well it wasnt all plain sailing from there I wont lie

I started on growth hormone tablets but after six weeks not a sign of growth or any movement for that matter

So back to the growth specialist who decided that tablets were not going to work so I went on to Growth hormone injections.

This was done 1 injection every 6 weeks for about 6 months.

Well what I can tell you is that I didnt grow to the height of peter crouch but I did notice growth changes within a week or two of my first injection.

I think when I started I was 4ft or even shorter and size 4 in shoes and after the six months of treatment everything moved on

Physically I had grown to over 5 feet (Im not 5 foot 6)
And my shoe size had shot up to nearly an 8 in six months. Im now 8 and half to 9 in shoe size

Oh and when I say growth hormone injections they were no more than what you receive when you have a flu jab. Over and done in seconds.

So by the age of 15 and a half I was back on track with all my friends and I never had to receive anymore treatment and mentally I was so positive and open I was able to start to enjoy the things I had become interested in without thinking I was behind everyone else

At the time when I first was worried about my growth i really thought it was going to be really hard to overcome.

But I found by being open and honest it was sorted out quickly and help arrived and the results were just what I thought id never see.


So what im trying to tell people who may be having the same troubles or have noticed their children may be going through the same thing

TALK TO SOMEONE

When I voiced my worries my CF Doctors couldnt be more helpful

The growth doctor was brilliant and swift in helping me

And all in all my whole worries of the previous year were starting to go away by doing one simply thing

Asking for Help.

Dont be shy

You will be amazed how many cfers are affected by this and I hope the help others receive now is just as good as it was if not better then when I first asked for help over 12 years ago


Thanks for Reading


I hope this helps others.

And if you have any questions please ask i will be more than happy to help

Learning something new everyday with cf

Well where do I start with this subject

Recently and rather unfortunately I've learnt alot about how ruthless cf can be

Over the last couple months and even more recently the last week I have seen how quickly cf can turn very painful and unfortunately deadly without warning

When I recently went to hospital I had been fighting a bad chest for a few months but within a few days it turned the screw on me and from one Friday to the following Monday I went from ok to even struggling with walking up stairs being out of breath and feeling really rough and by the Tuesday I was arranging to go in hospital for IV treatment. It hit me so hard and so quick I couldn't even really take note of how bad I had got in a very short space of time

I had learnt a valuable lesson and it was something I had never experienced before 

Then my friend told me she had got ill in a similar space of time but worse even worse 

In short 

On one Thursday she had a cold which turned into a bad chest and sore throat within the same day and then on Friday she was rushed to hospital and then an ambulance drove her to kings for immediate treatment when it was discovered she had flu and pneumonia. all this happened within less than 48 hours

I never knew or realised things could turn so quickly but I'm learning quickly as it will serve me well in the future

Then even worse I have discovered that cf can take a life just as quickly

A lady I was following on twitter called Emma Kingston and had had a few chats with via the social network seemed like a lady who interested so many people who followed her, why? Not because she had cf but because of the person she was and how she went about living her life and that showed right up until the very last minute that cf was not going to stop her enjoying life 

Her life turned for the worse unfortunately within a short space of time and it seemed from what she was saying that it was never expected so quickly

 

I am sorry that you didn't get what you needed in time Emma and to the others that ran out of time but still believed and seemed to live to the full right to the end. It was a pleasure to follow u and hear your stories your tweets and stories were hilarious and showed so many valuable lessons in life

RIP and breathe easy.

I have learnt a very valuable lesson from what has happened and I will do my best to keep fighting, will try my best to pay attention to early signs when my health is going wrong despite my mental state not being great at the moment 

One thing I have learnt is that leaving things to the last minute with cf can only make it worse like I used to do when I was younger and I cannot afford to do that anymore if I want to live into my forties 

Last time I went to hospital for ivs a few weeks ago I went in quickly to try and get a good grip on the chest infection and try and clear my chest before the chest infection had a chance to settle in and it seemed to work as my lung function was the best it had been in nearly ten years.

But I'm not taking anything for granted

Im going to start back at the gym this week and try and eat healthier. I want to give this body the best chance it has in life

Like I said on Facebook the other day

Sometimes I feel like the luckiest man in the world, other days I feel like the luckiest man stuck in the most unlucky body and with how I've been feeling that's exactly how I feel

Right now though its not my physical health that needs to change drastically its my mental health and that is one thing that I'm struggling with the most. But that is what my next blog will be about

More to follow shortly

Becoming unwell and deciding the time was right for IV treatment

So since my last blog a few interesting things have happened

I have been fighting a bad chest for about 2 months and despite managing being able to keep my lung function up it was really starting to take its toll on me.

I was becoming very exhausted and most of my daily effort was purely going into keeping my chest as good as I could.

Well two weeks ago I spoke with my doctors and it was decided that it would be best to get some help and go in for ivs before things got worse.

So I was admitted into hospital for IV treatment.

I had my midline put in which went nice and simply and it was agreed to start me on timentin and tobramyzin and it was planned to do a week in and then continue my ivs from home

Well all went well in hospital for the first few days until something went wrong with my line and it started to bleed massively (and I still can't figure out why)

"Okay so no problem lets just clean it up and put on a new bandage and carry on" I thought

But no how dare I think things could go so simple.

When it was being cleaned up the nurse seemed to panic and pulled my line out a little despite me saying to her numerous times "watch out for this your pulling the bandage too quick and the lines moving" and instead of just trying to place it back in she seemed to refuse and said she would have to remove it and I would need a new line and then tried to lie about why it came out.

Don't get me wrong i know mistakes happen and they do an amazing job and a simple apology would of been fine but I don't like being lied to and I was rather upset and angry that the line had been removed and couldn't understand why they couldn't just be honest and say sorry my mistake I pulled the line too far out

And it didn't help this all happen at 1am and I was rather tired and then was told I needed to stay up to have a cannula put in gggggrrrrrrrrrrr

Well that happened eventually at 3am and don't get me started on the cannula but after 3 attempts I successfully had a cannula in.

Line removed after mistake and cannula put in which you can see in background

So after a tense weekend of having a cannula in I had a new line inserted into my right arm on the Monday but it wasn't a great fit and it was discussed to leave it in and see how we get on and if it failed to put another line back in where the first one was. No problems always good to have a back up plan.

Anyway I should explain what my lung function was when I went in

On the Wednesday when I was admitted my lung function was 2.4 fev1 so it hadn't dropped too much from march when it was 2.6 fev1 but that doesn't explain the full extent of how ill I was 

It was mentioned that I had clearly been working very hard to fend off whatever I had but it was time to give me that final push to clear it 

And physically and most certainly mentally I have been feeling beat up I have been struggling mentally with cf

I just feel lately mentally I've been down, depressed maybe but I just haven't been right in the head and just felt like things were getting on top of me

I have been needing a boost lately to help me carry on and maybe change my approach to things and give me a game changer if you will

Well the week in hospital went well and other than the midline issue no major shocks just lots of drugs even more sleep and when I wasn't sleeping lots of autogenic drainage breathing exercises 

I never really knew how exhausted I had become but the amount of tiredness I had been feeling and sleeping certainly showed me I need to rest more and start sleeping better as I was simply just dozing off at all hours of the day when I'm not being pestered for obs or drugs or blood tests.

Well they let me home after a week in and all seemed okay but after a few days home my second line failed and was leaking heavily so it was an emergency journey to the hospital to have my third line put in so plus the cannula had had a total of 4 drugs lines installed

Well again the first week at home has gone well and no major issues my plan at home was simple

Sleep plenty 

Plenty of drugs

Plenty of nebulisers 

Plenty of tablets 

And plenty of exercise when I wasn't doing anything else

Well my main exercise was dog walking as my new puppy mollie certainly can help me to keep fit and we have walked quite a few miles which has really helped me expand my chest and help my AD exercise to clear my chest of phlegm 

 

Well yesterday was a very important day

My cf nurse visited to see how I have been getting on and I was expecting the results to be the same as when I left hospital

When I left my results had showed no improvement on my lung function so I was feeling a little down

But yesterday's results shocked me massively 

I was in that much shock I actually text my cf team to check what I had read was right

Let me put it this way

Admitted in hospital two weeks ago fev1 2.46

Visit yesterday

Fev1 2.95

I couldn't believe it and I still can't that is the second highest fev1 I've ever had in the last ten years maybe even my entire life and I haven't had a fev1 over 2.8 for nearly 7 YEARS 

So you can imagine my shock at the results

And I'm still in shock now I don't really know what to say

All I know for sure is I had given up on improving my lung function and thought I was just working to keep it where I was and felt like I was working harder than ever just to stay healthy

What I do want to say is I stupidly thought I should give up on ever improving my health again and just work to stay as i was but the results show you should never give up until your very last effort has run dry.

I have upped everything lately thinking that was what I had to do just to keep where I was but upping everything and working harder

I work harder now on my health Than I ever have and it just shows I should never have given up thinking otherwise

I has given me a huge boost and I actually feel like I could now improve further

Isn't it funny even just this time last week I was thinking lets just work on keeping well and still feeling bad but now I have something to feel good about and will now work harder to see if there's anymore room for improvement

I still feel bad mentally but these results give me something to believe in and something to work with

This is the game changer I mentioned that I needed and it has come at just the right time 

Importantly it has shown me to never give up never stop believing and never stop thinking you can improve

Never ignore the signs that things can change if you work hard enough and I've certainly upped my game despite being in a bad place mentally and I'm glad that although mentally I was down physically I think I never stopped trying and it's really paid off judging by my results

A lot of people have asked me how did I do it and what have I changed to be able to improve my health???

well here's my answer

All I simply did was get in early for treatment before my chest infection got too bad and its the first time I've ever done that and I really believe that is a major factor for me being able to improve

I used to wait till I was really ill before admitting I needed help and went in for ivs but this time I felt like it was time to change my plan of attack and I'm told attack is the best form of defence 

So anyone who is thinking of leaving treatment to the last minute, DON'T

Get in before it gets too bad and attack it early and then work to improve it

I have certainly learnt a big lesson in doing that and I hope my results show that sometimes changing what you do can make a huge difference

I'm hoping it helps others to realise things can get better if you just change the way you go about things

I'm still in shock but I'm hoping it sets in soon

Anyway I feel like I should now run a marathon with this positive outcome

I still think there's room for improvement and time will tell

Whatever happens I will let you know

Keep fighting

Help others to fight

Never give up

I will admit I had and I was stupid for doing that and I've learnt from my mistakes and will take that to help me change mentally and hopefully feel a better person for it

Oh and by the way it's CF WEEK

So if you see anything to do with cf on twitter or Facebook please repost or retweet and help raise awareness

Heres an image that shows just how much cf actually affects in the body which most people don't know about

Please become CF Aware

Here's something I wrote recently that I hope helps others

Thanks for reading 

A late post but I wanted to let you all know IM A GODFATHER

Just a quick post to say I've recently become a godfather

I feel very lucky and proud to be asked to take on this responsibility and I will do my best not to let Amy and Thomas down and most importantly my Godson Cohen

Heres a few snaps from the day of me and Cohen :-) 

Mentally challenging

It's been a while since I've written a blog and whilst I'm sat here watching 24 hours in A&E it made me think how's the perfect time to write something

Why has 24 hours in A&E made me want to write a blog?

Well simple really it's filmed at the hospital I go to for cf team appointments and receive IV treatment.

I love watching it as I am sort of in love with kings college.

Why would I love a hospital? I hear you think, well I'm in love with kings because when I'm ill it makes me better, it's a comfort thing to know I'm in the place that will make me better when I'm at my worst, my lowest.

To me you should always love something that makes you better gives you comfort when u need it, makes you feel wanted when your lonely. im not just talking about kings itself but the whole ward the staff and the friends ive made in the years ive spent there, loved and lost in some cases too.

it's just like a relationship,don't get me wrong you hate the place and do your best to stay away from it but your always drawn to it sometimes forced to it but you always come out better and its always there in the hard times to put an arm round you and say 

"It's going to be okay"

I know for some its not like that and some people they haven't come out of there ever again but that's not happened to me yet so I can still love the place

And I will still love the place to my final breath!

I'm honest about that because for all the negatives I've had there and bad times and the odd swear word I've thrown at people I cannot say that it hasn't helped me

I've been attending kings for over 10 years now and in all that time and days and weeks I've stayed there ive possibly only had 10 bad days out of the hundreds of days I've been there

Without that place and its people even though they are struggling to build a ward upto other hospitals standards (which is not their fault) I would be dead or seriously sick without them

Some people on my CF team are like family to me because they make you feel that way and most of them dare I say it know more about me than my family or friends will ever know 

But that's most likely a good thing because they don't want to know some of the things the doctors know or have to do to me haha and I don't want them knowing either 

  The last few weeks have been tough for me mentally

The last few weeks I've been in a bad place mentally, I recently became very ill and didn't really know why or how and it has hit me quite hard. I mean I'm feeling better now and may just may have conquered whatever was doing me harm but its hurt me.

Physically I feel an absolute wreck, I've had bad stomachs, check infection and been throwing up far too much for my liking and despite that I've still been doing nebulisers 6 times a day and 40 tablets a day everyday without fail and then doing AD physio to help my lungs even more and recently walking my new Beagle puppy to get exercise and help my lungs even more than physio

All that while still trying to smile and hide that I'm ill, I don't like to show it even to those most close to me but somedays I just feel like curling up and I have been really bad as the question I so rarely think has attacked me

What question?

Why me??? Aaaaaaahhhhhhhhh

I hate asking myself this as its something me or anyone out there will ever answer but it plays on my mind. 

Recently I've had days where I've just shouted when no ones around gritted my teeth and I have even shouted at people when I didn't mean to.

I can't help it.

My head is a unsolvable rubix cube

I have had the odd thought of fuck it I'm having a day off from everything. But I can't then I get angry and upset because I know I can't but I just want to rest stop relax 

CF is hard mentally and physically because its something you can never stop fighting and not always fight to get better but sometimes fight just so you don't get worse.

And that's how I feel

I'm fighting to just stay around not get worse, what's the point I'm working harder now on health that's worse than I was 10 years ago when I was getting fitter

I know I know I shouldn't be like this but it's hard

And that is where my mental state is being hit hardest. 

At the moment I just keep thinking why

Why me

Why do that

Why do this

Why not

Why isn't it working

Why am I worse today

Why was I better yesterday.

It's always questions.

I know how bad its got because I finally admitted to my mum and girlfriend that I'm not right I'm not well I need help. And in more ways than just medicine will help

I should say that work have also been amazing for me lately, they have given me all the time in the world to get better and work from home as much as I need and I think without that I would have just chucked the towel in by now got really ill and ended up with a midline in my arm attached to drugs for multiple hours and with my head being how it is lately I just think it would have made me worse.

I may still end up in hospital for IV but I feel at least I've given myself a chance to have a go at it without help.

I have started debating going to a psychiatrist for help just to talk outside the box and see what it does.

Maybe I need someone like that to teach me some new mental exercises

I don't want to say I'm weak, I'm not but there's only so many times you can read the same book before you know every word and it just doesn't give you that feeling anymore

One thing is for sure without my family, girlfriend, daughter and friends around me I already would have been worse.

I sometimes get angry as its hard to explain how I feel but even though they may not understand it they all come out with the odd word or two that just makes me listen and think good about myself 

Here's some amazing things that have happened recently

Like texting my girlfriend for help i was basically in tears at breaking point and without a hint as soon as she walks through the doors she there.

To my little girl saying "I think you should eat more biscuits and sweets daddy it will make you better (I love her so much for being so good with me) 

And my little girl doing practically all the shopping for me with the only thing I did was pay she just gets it and its hard to explain but she is so switched on I don't have to explain many things with my health it's like she just knows it and she's never afraid to ask me 

To my best friend who I text saying I just feel down and I'm a burden

He practically replied to me saying "fuck off you idiot we are all here for you"

That just made me smile in the moments when crying and feeling shit was all I thought I could do

I will snap out of it 

Just right now I'm not ready i just need time and I have to thank everything and one around me from people, family and to work for understanding and letting me be, even if they can't help its just what I need

I finally want to say sorry

Sorry for feeling the way I do, sorry to everyone close to me for saying and shouting the things I have and sorry I shouldn't hide away but I need to and sorry I can't do more i just want to relax, when I'm better mentally I will work harder. 

Just not yet give me a moment please.

Thank you for reading

I'm sorry to blab on

About time I updated

Well what do I write??

Im still me nothing has changed 

Still working on improving my lung function and enjoying the CF gene therapy trials

Im still semmingly improving my physio techniques and noticed that I should really start doing gym work again to help with improving myself.

I have recently started doing core work to help try and build up my chest and sotmach muscles to try and give my lungs another push adn hope I can improve my lung function further.

I have sort of come to the conclusion that my chest and stomach muscles are a bit weak so by improving these I can improve my lung clearance by having stronger muscles to help clear the usual sticky mucus :-) One can hope at least anyway.

Im still determined to put together my fundraising plans for the summer. Once ive had more time to write it down and prepare a good plan i am going to send it on to CF trust to see if they wish to take part and hope to get more people involved.

But im not giving anything away yet as im convince its such a good idea im worried if I tell people my idea may get stolen.

That said once ive made some enquiries, put a plan together and got some essential people to like the idea I will reveal all. I just need people of certain specialist areas to help me

Anyway all that in good time.

I have been trying to spread the word of CF of Course as you may have seen I did the CF trust cystic fibrosis IS poster idea along with many others and so many had such great replies

And on a visit to Bluewater I noticed Nikon doing a free photo opportunity

There head line was
Nikon

I AM

So guess what I wrote for my Photo

I AM

A CF SUFFERER

he he

Sneaky I know but any publicity is good publicity and Of course spread the photo all over twitter and facebook

By the way if you wish to follow me on twitter I am @fox1985

I love to spread the word and im certainly not one to shy away from who I am and what ive got im very proud to be a cf sufferer


On a serious note

I do wish to say a short few words a few people that have recently passed away due to CF and to those in mourning for the lost.

We wont let cf win, it may have unfortunately made some pass away but when we lose some, others appear and notice and we gain more fighters and supporters and the fight against CF is only getting stronger.

Time and Money are the essentials to pointing a CF Life  to a better life and it will happen, its only getting better, results show that and people are noticing it

Death and how its scares some, and why im scared of it but for a rather odd reason

Death does scare some and no doubt about it I do get scared sometimes, not because I dont want to die but that I will run out of time to do the things ive always wanted to do.


That said I still have plenty to do and keep making excuses as to why I havent done certain things yet. That is changing though.

 

CF and a unique sense of humour

I saw the young lads audition on X factor the other night who had very bad cerebal pausey (Sorry my spelling awful) and he couldnt stand without his frame and sat down when he performed and I have to stay I loved it. Not just because he was funny but by the principles he clearly lives by and its something I think alot of CFers can relate too

I for one have a very good sense of humour and im not scared to use my situation as a cf sufferer to make a joke or two (And yes no doubt some are terrible) and my friends are all too aware of that as they regularly join in with a joke or two.

My bowel action being a very well used joke indeed by a few (You know who you are)


Im not the only one who has a sense of humour like this with CF and how I look at it and laugh sometimes even at my own expense

Someone I recently started talking to who also suffers from CF and has had a transplant summed up CF and a cfers typical sense of humour in a great one liner

Cystic Fibrosis is

BREATHTAKING

Absolutely brilliant.

The young comedian on Britains got talent and how cfers can relate

That young lad on X Factor was just amazing

His line off stage was amazing

When Ant and Dec said "you got a standing ovation well done"

His reply

"Yes I think they were trying to rub it in a bit"

We all need to learn a thing or two from him as so many people take life and comments too seriously

I love how i am and CF has made me this way and I wouldnt change it for anything.


A final Note

Some people say why do you do the things you do? Dont you worry?

I dont worry

Why would I?

Im not one to lie down and accept my fate.

I may know my ending but I also know I can keep the pen away for as long as possible that will eventually write it

You could say my story is still at its begining and Ive got plenty of chapters to come up with yet.

What is your cystic fibrosis is? And dose 2

Well what's been going on lately I hear you ask?

Well your not but I'm asking myself

Not much just been doing the usual, tablets, physio, sleep eat, tablets

Like I said just the usual

I recently done a cf poster for a cf trust competition,

I will attach a photo to show it but I had loads of ideas

The question is what does cystic fibrosis mean to you

The headline

Cystic fibrosis is?

Mine was

To live, to inspire others, not by
Disability
But by
Ability

But I had so many ideas

I will not be down with what I have been given but will excel with what I have got
THIS IS MY CYSTIC FIBROSIS

Cf is

About letting your heart lead you and your head store the memories of where you've been

The list could have gone on

I didn't win :-( but was amazing to see so many people's different thoughts and the usual cf sense of humour

I liked

Cystic fibrosis is
BREATHTAKING

Sums up cf and the unique sense of humour cf gives us and our outlook on life quite nicely in one sentence

Anyway well done to the winner I loved his cheeky idea very cool.

I'm still smiling so much about my lung function results from a few weeks ago and I'm hoping today will show it's stayed the same or got better :-) well I'm allowed to be optimistic

And I found out I'm still clear of pseudo which is great but I'm continuing with the drugs for a few more months just keep it away and make sure I don't grow it back again.

So what am I doing now?

I'm on HS1 on my way to London for dose 2 on my cf gene therapy trial

I'm very excited if not a little tired I've had a dreadful cold this week which has exhausted me but I think it's all gone apart from the odd sniffle lol so not too bad and I think I've kept my lung function up okay so not too worried

I love being apart of this trial it's so unique and fun and very educating in terms of how people are trying to progress medicine and research and in their hunt for the cure

Will a cure happen one day?
Well I wish they could and I hope they do but with medical advances now and this research, they are hoping to minimise lung disease in cf with gene therapy and kalydeco and that's the biggest killer 90% of all cf deaths in fact so if these medicines help then that's a huge boost to cf and will extend the average age of CFers so much so it's a big step in the right direction. :-)


But it all takes time and for some people that time is running out before treatment can help them

CF is cruel it's what it's sole purpose is to destroy life and to hurt the people around that destroyed life.

I have to be honest alot of people seem to forget this side of cf including some CFers who think it won't happen to them and I'm the same but the difference is I've also accepted that if it does happen to me never mind I went out trying :-)

I'm fully aware it may kill me and that's fine. Just maybe not yet ay ;-)

Why am I like this?

well I accept I may die and it's my way of confronting it and it helps me live easier because I don't worry about it I just get on with life and if it happens well never mind

I've enjoyed life I've certainly tried not to waste any of my time


And if another cfer loses their fight others must still carry on theirs because theirs no point giving up just yet that just means cf is winning the time trial of life and I'm not prepared to do that.

I'm very lucky with cf that I've had the time I've had and I hope to continue to be lucky but that doesn't mean I won't stop working to fend it off and stay healthy.

I work harder now than I ever have to stay in good health and its a price I'm happy to pay.

Work hard and reap the rewards of what you create

Life isn't to be wasted thinking others will help you.

That's just lazy

Help yourself first, then you can help others at times of difficulty


Anyway I'm waffling on


I have a question for all of you who reads this blog and please please do this

I want you to tell me what you think cf means to you?

What is your cystic fibrosis is?

Come on tell me?

It could be a harsh reality or a fun gesture but I want to hear from my friends family and blog readers?

I want to hear your thoughts?

Here's my picture of me

Enjoy

And on a serious note RIP to the unfortunate who are no longer here and recently lost out to CF

We won't forget you

Sometimes its good to sit back and take stock of life

Sometimes I feel like im forgetting to appreciate things and remember what I have and how lucky I am

So sometimes I like to slow down step outside my own world and look in to see what ive got and remind myself how lucky I am.

Today is one of them days.

As I slept last night I thought about everything that happened to me recently.

Never miss a chance to see the way things are and be thankful for what you have

Right now I feel like life is on the up after recent developments

I recently had a hospital check up and everything just seemed perfect, dont get me wrong not perfect that I can be complacent I must keep pushing myself but the results were extremely good and even more surprising and have given me something that I really needed

A BOOST and a swift kick to remind me stop stop being stupid and never accept THATS IT

I have put on weight
My BMI is good

My sputum results looked good

AND most shocking of all

MY LUNG FUNCTION IMPROVED

It hasnt improved for over two years and infact had dropped quite badly but at the appointment it was the best its been in over TWO YEARS

Imagine my shock.

When I went there I went saying to myself the winters been tough so if my lung function hasnt dropped I would have been very happy

So when I saw my FEV1 had improved by 8% and my overall capacity by 10% I was stunned. I really had given up improving it and had just thought I would not let it slip anymore and maintain what I had.  I was chuffed to see it finally move.

Now I realised complacency will not be part of my health plan. Now im going to keep pushing and try to get back to my magic old grand number of FEV1 that I used to be and remember to forget less and improve more

I thought about it long and hard and realised its actually improved not because of drugs or trials or anything like that but its improved because ive improved myself through better consistency and trying harder to maintain my health for the winter actually made me improve my health.

Ive improved my drugs routine, my physio technique my Ineb routine and my weight has gone up and stayed consistent for over 4 months now.

I am absolutely chuffed with how the winter has gone for my health and has given me a huge boast to keep up everything that Ive changed for the good.

What else has happened in my life?

Ive got a new car. Its arrived and is stunning and has given me another boost and reminded me of how lucky I am to have the job I have and to keep wanting to improve.

My daughter as always is amazing and growing up fast :-) Shes nearly SIX. Where has the time gone?? And she is helping me to keep fit with stair races lol

Ive recently moved to a lovely new house and its officially our first house with my girlfriend who may I say is also amazing to me and has also been a reason ive improved myself by not letting me accept NO

So So many of my friends and Family have been supporting me with my future plans and my decision to want to do CF Trials. I cant thank you all enough and has really helped me to feel good about myself


And my last but by no means least piece of news.

Ive Been asked to be Godfather to one of my oldest bestest friends little Boy :-)
I received a lovely photo of Cohen with a little note saying

Will you be my GodFather??

How could I say no? So I of course said YES.

Im going to be a role model "oh dear" I thought haha but I really am truly thankful and priviledged to be asked so Thank You Amy and Tom. Amazing Amazing.

I have to admit that over the past few months I feel like ive become a bit insecure and have been fighting a few demons in my head. I still have plenty going on in my head and its maybe the reason ive been struggling to sleep

But I have at least now banished some of my demons and insecurities thatnks to so many good things and good people

I still have to improve but I wanted to say to all of you who have read this blog, supported me, wrote to me and sent me messages of support and good news.


THANK YOU

I couldnt do this without all of the good things im told and feel lucky to have what I have

Never rest on your morals

And I for one have realised.

If in another two years time ive improved thats another two years that Ive made things better

Thank You

A date to remember 13th march 2013

Today is Wednesday the 13th march 2013, and I'm heading to London on high speed 1

I'm off to the brompton hospital to their cf research department.

Why?

Today is my first gene therapy trial treatment :-)

Now of course I do not know if I will get the drug or the placebo but I'm excited it could be a new chapter in my life.

I'm sat on the train listening to music enjoying the views and having a good think to myself.

I won't know my results for at least 12 months but will I be able to feel it? Won't I?
How will I feel?

Am I really prepared mentally for success better health?

Am I prepared mentally for nothing?

Am I prepared mentally for disappointment?

Truth is I'm sat here with a tear in my eye because I don't know. I always said I'd do anything to help with cf research in anyway I could including sacrificing my health to help others

Why wouldn't I? I'm a small person who wants to help make a big difference.

I've had months to prepare for this but in reality how could I prepare?

It's the unknown and that excites me but I must also face the outcomes.

I've told myself that this trial is just extra doctors appointments to check on my health but deep down I know what it could really be.

I have stepped up my physio as my technique was crap and better prepared my drug routine and have noticed I'm forgetting less and doing more. But that's because I want to make a difference not just to me but to hopefully be part of a future treatment process for many others.

I don't think I need to be ready I just need to be there and do what I'm told.

I'm loving every minute because I know even if it comes to nothing I've at least tried

And I feel very privileged to be part of this

What's the saying

If at first you don't succeed try try and try again.
That's what I will be doing.

No point accepting life for what it is if there's a chance of making it better.

Unfortunately I can't tell anybody how I'm doing I can only say what I've been doing but no words on if I'm better or worse so I will have to keep that side brief on here but will do my best to tell you all what I'm allows to.

Anyway in a few hours time I will start something that will be a big part of my life for the next year or so.

By the time this is over I will be heading towards 30 years of age.

Considering how life was when I was first born that in itself is a milestone for any cfer.

Hers to the future

I really want to throw my activity monitor out the window

I am currently wearing an activity monitor which is required as im part of the cf gene therapy trials.
I have been told to wear it for 8 nights and im only allowed to take it off to have baths and showers.

And now after 6 nights its really really starting to annoy me and I think its affecting my sleep

It may sound silly but things like this really bug me.

I have a nikefuel watch which is like a wristband and its tiny. I wear it because It monitors what I do just like the activity monitor does.

To give you an idea I have had my nikefuel watch since christmas and I absolutely love it and im obsessed with hitting my daily  targets.

Its tiny very comfy and you woudl hardly know you were wearing one. But to give you an idea of how things like that bug me I even have to take that off some nights as I feel that it annoys me and I wont sleep.

I was the same as a child when I was told I had to wear night splints when I was having operations on my leg and im still the same now with hospital wristbands and I regularly have to take off my bandages when I have IV treatement. Dont even get me started on Socks.

Anyway I know it sounds stupid but it really grates me. I cant wait till I can take it off sunday morning and throw it in the postbox to never see it again.

Isnt it stupid I agreed to do multiple tests for gene therapy even have an operation and suffer for a few days due to the anaesthetic yet the worst thing I can moan about

Some stupid ipod sized thing that tells me nothing but sticks to my skin

AAAAHHHHHHHHHHHHH

I must be weird to worry about things the oppsite way round.

Anyway its all for a good cause I just wanted to have a rant


AAAAAAAAAAAAHHHHHHHHHHHHHHHH


Imagine what it is like having to wear this thing which is like having an ipod strapped to your arm 24 hours a day knowing you have no option but to wear it. I think I may just be going stir crazy with it.
Or it may be just because I have no option



36 hours and counting goodbye horrible velcro straped nuisaince (not for the doctors of course
The only thing I can tolerate wearing to bed of a nighttime is underwear and shorts.

I most likely sound stupid but things like that really bug me.

I can look at blood have things shoved down my throat and needles put in me swallow pills easily but one thing that really gets me is little things that touch my skin.

Always have had this annoyance always will.

I feel like i have a ball and chain wrapped round my arm.

The first step to the gene therapy trials

Well what do I say

I should start by saying I am sorry if the details are vague but due to the trials being highly sensitive I will not be allowed to reveal how I get on whilst on treatment and I won't know if I'm on the drug or a placebo as the trial is a double blind trial.i will only be able to reveal what procedures I do but not how I'm feeling. I should also say it means I won't know and the doctors Won't know what drug im on. Only the drugs company running the trial will know what I'm on and will not reveal anything until the very end because it is kept completely top secret. The doctor will only monitor me throughout the trial but they cannot even reveal results of the tests that are done throughout. They simply monitor and report back to the drugs company who survey the results throughout the trial to see what's working what's not and who's responding to what.

So what have I done so far

When I signed up I agreed to be part of the gene therapy trials and I signed up to take part in all three parts of the gene therapy trials. This includes the standard gene therapy trial then the other parts which are optional which are nasal tests and bronchoscopy examinations.

I went up to London Brompton hospital last week for my screening tests and the first nasal tests and first bronchoscopy examination.

On day one I arrived and met all the team involved and discussed what goes on and what's done and what to expect and the duration of the project. I then had a series of tests done (very similar to Annual review tests that all cfers have to do once a year) and I was pleasantly surprised to discover that my lung function hasn't gone down at all over the winter and had infact gone up very slightly.

I'm extremely pleased with my lung function considering how tough the winter has been in terms of the weather and the physical struggles I've had to deal with.

I was even more pleased when they said I passed all the screening tests and was accepted to go on the trial.

That felt like I had won the lottery to be told for certain I'd be allowed to do the trial.

I am extremely grateful and privileged to be part of this and no matter what happens I will never be able to thank certain people enough to be given this chance even though I don't know who exactly to thank just yet.

I was given so much information and I do think I'm like a sponge I love to soak up interesting information especially when it comes to cf and new and advancing treatments.

Anyway after a late finish to day ones test (9pm) I headed off for dinner and a walk around south Kensington. I have to admit I'm now totally in love with London and if I ever am lucky enough to be able to afford it I would love to have a place in that part of London it's just so beautiful. Around there. Anyway that's for another blog entry

I was given a room for the night in the nurses quarters as I was due to have my bronchoscopy the next day.

I have to say I am disgusted with the conditions of the nurses quarters and have even more admiration for them and also sympathy for them as no one should have to deal with them conditions especially when they are expected to carry out a job like they do every day of the week and then try and rest when the rooms are in such a poor state. But I will write another blog about that in the near future

Anyway after a very bad nights sleep where I slept on the floor due to the bed conditions I was up at 5:30am to do physio ineb and get ready for my bronchoscopy operation.

After being greeted by the team I was ushered to the operating room and prepared for the tests.

I was knocked out completely for the bronchoscopy due to the nature of the tests that were to be carried out during the procedure. I have never had one before so was excited to find out what they discovered when I woke up.

My bronchoscopy went as planned along with the various other tests they done and samples and I was very intrigued to hear what they found.
I won't discuss my results but I am embarrassed to say that they noted my lungs were quite heavy with phlegm and I have to admit I'm glad they told me this as I knew I needed to adjust my physio technique and after a few tips I have changed my technique and will certainly be doing more to make sure my lungs are squeaky clean for the next bronchoscopy and save myself of embarrassment of having to see pictures of my dirty lungs

Sometimes you know your doing wrong but it takes a hit of reality to make you change well seeing my bronchoscopy photos and the results have made me realise there's no time like the present to face reality and make a change for the good even if its hard to do.


After nearly two hours of heavy anaesthetic I was woken up and taken to recovery.

I have never felt so rough and I'm still getting over it now five days after I had it done not from the anaesthetic more from the pains I'm getting from my chest and the blood I'm still getting off my chest and my throat is awful

I now know why anaesthetic is so horrible and I've certainly suffered from it.

After four hours of observations I was asked to do a few more tests before I could go home.

I have to say that no one should have to suffer nasal brushings oh my days the pain. Ad the nose bleed was not pleasant.

To give you an idea nasal brushings is like sticking a wire brush right up your nose and then giving your nose a good clean. That should give you some idea of what had to be done and the pain was unbearable even for the short period of time it was done.

Anyway

After a good weekends rest I'm feeling good and my lung function has crept back up after suffering from the anaesthetic

I'm so intrigued by what I will be doing and what the gene therapy is all about and how they hope it will work and I recommend anyone who has cf or knows about it should research gene therapy on the Internet it's very exciting.

Anyway

I now am waiting for my first drug treatment which is in two weeks and then I have 14 months of tests and procedures to look forward to and I couldn't be more motivated to potentially be part of something life changing and so historic.


I hope you enjoyed reading this and I will do a few more blog entries on various things over the next couple days.


Oh btw I now have my own lung function machine which is very cool but a little obsessive and I need to stop playing with it.

Right now I couldn't feel more alive with fear excitement nerves and the feeling of the unknown.


I told someone the other day

I feel like an archeologist. I'm digging into the unknown and only time effort and patience will tell me how I've done

I may unearth a new discovery

I may not

But how cool to know that you don't know what u might find

And if I find nothing

I move on and wait to discover the next big thing

If at first you don't succeed try try and try again.

Nothing is perfect at the fast attempt

But lessons will be learnt if mistakes are made

It's how we get up after being knocked down that makes a difference

Success is nothing without failure

Success is never truly felt if you don't respect and appreciate failure

Expect nothing and anything after that is a bonus

Expect failure
admire success
and clap someone who's willing to venture into the unknown

Someone said to me I'm so brave for doing this

I'm not brave

I'm just not willing to sit around and wait for someone to tell me the answer
I want to be the person who writes the answer

I'm very much prepared mentally for anything that doesn't go my way and I'm willing to risk everything to improve my health and more importantly be part of something that is working towards helping every cf sufferer and future sufferer


What I'm not prepared for is success, why? Because until I know what success is I cannot know how to deal with it

I am me and always will be if nothing comes of this trial I will be no different

If something good does happen I will still be me just a healthier me

Unfortunately I won't be able to tell you that until the results are published in nearly two years time :-)


I just want to say a quick thank you to everyone who is supporting me, to everyone who has read my blogs and followed my progress and contacted me with encouraging messages with support and wise words

This isn't just about me it's about many and that's the bigger picture.

I'm not a doctor but I hope to give the doctors the results they are looking for.

If I don't I will be straight onto the next trial


I'm so pleased to be part of this process I never ever thought I'd get the chance and I would never turn it down no matter what pain or suffering or good or bad I must go through physically or mentally.

Goodnight

My BIG ANNOUNCEMENT

Well here goes

I am going to be doing GENE THERAPY TRIALS

Unfortunately ive been told that I will not be allowed to tell anyone about how im doing on these trials and how im feeling but i am allowed to tell you im doing the trials and I couldnt be happier.

In short Gene therapy isnt just a treatment, it is hopeful that Gene therapy could be the potential CURE of cystic fibrosis. That may sound like a massive overstatement but that is the end result that researchers are aiming for and Im hopefully going to be part of that historic process

Now that sort of tells you why I feel so priviledged and honoured to have been asked to do these trials.
To try an explain gene therapy without boring you this is basically how it will/should work. I have taken an insert from a website which explains how it will work in short

Many diseases such as cystic fibrosis, are caused by faulty genes. 

Gene therapy involves the addition of a healthy, working copy of the gene into appropriate cells in the body to replace or override the faulty copy present in the genome.

Unlike most conventional medicines, instead of treating the symptoms of a disease, gene therapy has the potential to correct the underlying cause.

As far as im aware it is aimed at helping the lungs as the first step but that in itself will be life changing for a cf sufferer as it will change so much in terms of life quality, fitness, medication and overall wellbeing.

Of course there are always risks involved with participating in such trials but I have said ever since i first heard about gene therapy that I wanted to try and get on the trials and help out in anyway I could. The risks do not worry or scare me because the rewards will be potentially so HUGE.

I could not turn this opportunity down I had to say yes straightaway and today is my first step into starting the trials and maybe changing my life forever.

The trials work like many normal drugs trials so I have a 50/50 chance of being given the real gene therapy drug or the placebo. But I dont care 50% chance is better than no chance.

I am booked to go and visit the team within the next few weeks and have an operation. Im not sure if I can say what it is the operation is for but I will say that its an important part of the trials.

I am sorry that I cannot blog about how I get on but will update as best I can without breaking the rules.

I can say that this is not a short term Trial. I will be involved for nearly 14-15 months doing various things and the odd operation or two.

But for me the time im asked to give up is of little importance, I have said since day one of knowing about gene therapy Id give my life if it meant I had a chance I could come out the otherside a healthier and am very happy I may have the chance to give CF a proper kicking. If it works more importantly I could have a longer chance to enjoy the important things I have in my life and I cant give up the chance to possibly live longer.

For someone like me its like winning the lottery because it will be life changing if it works.


I once told someone who was fed up of CF and living with it :-

"Why live a hard life of fighting if you dont believe your fighting for something better?

That is why I will doing anything to fight CF because I believe im fighting for something better.


And to the person(s) who put my name down for the trials I Thank you, you just dont know how much you may change my life in the near future.