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