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