my first vlog

So here it is ladies and gentlemen

My first CF vlog 

https://youtu.be/1xnAaNlqJ8s

Enjoy and please share 

Disappointed and Down but not out

So despite cycling many miles training for the London Surrey bike ride it would seem that yet again cf has tried to knock me back

The last few months I've been feeling great and I've fallen in love with biking. I'm slowly increasing my training I've bought all the kit to make me comfy Ive had a sports massage to sort out my aching muscles and gammy leg which helped out massively and most importantly I've put in the time, pushed the pedals and racked up the miles yet it seems I still couldn't get my lungs to improve.

On Tuesday I had a visit from the cf nurse, although I admit I been feeling a bit rough for the past week I was feeling positive and when I did the first blow I felt a false sense of security and short lived happiness when the community nurse said "your never going to believe the result" 

So I go to smile and she says

Your fev1 is 1.7

And then I feel and hear the tonne of bricks falling on me

We'll eventually I got to 2 fev1 but it meant that after all my hard work and pushing pushing I've dropped some lung function okay it may sound silly as its only gone from 2.2 to 2 fev1 

Now I know everyone says don't go by numbers it's about how you feel and you can have bad days but I been sweating my f##king knackers off pedalling and pushing myself to find another digit of lung function yet the numbers have gone the wrong way.

I'm gutted, I had a cry and sobbed to my fiancée max who is always amazing when I let my tears and anger out and just says the right thing when I need it but I couldn't help but feel angry and disappointed it's gutting crushing in fact and it's taken me days of thinking about it to even try to write this as I felt so let down by myself that I couldn't do anything. 

Well after seeing the result I tried to scramble for answers in my head, I admitted that I sort of knew something was wrong but the numbers don't Lie.

So I ordered some antibiotics, I had a day off from pushing myself with Physio and drugs/nebs etc and started all over again.

It didn't stop me doing the bike though

Like I said on Twitter 

Turn yesterday's disappointment into today's motivation.

And I pedalled like lance Armstrong just with the illegal hormones injected into me although I do regularly ply my system with legally prescribed drugs. An hour and a half later I was spewing phlegm sick and tears but I'd smiled as I covered 16 miles and instantly felt amazing. 

Now I know my lungs are down but I've got antibiotics flowing into my system a smile (even if it is slightly covering the confusion and sadness) on my face and just like my max said

" we start again, try again and we've done it before you can try again"

She's right, when it comes to my health she just gets it and kicks me up the arseright when I need it

So now I'm trying again searching for that "thing" again. 

If there's one line that's describes cf

It's if at first you don't succeed try try and try again.

 CF is a never ending game of try again.

I mean what should I do walk away and give up?

That isn't who I am 

So here's me 

Getting off my sorry arse and trying again

And if I don't max will make sure she kicks me up the arse and gets me going again

Thanks max this get up and go is for you Because without it we can't do everything we've talked about 

Thank you for reading

I will do my best to do it all over again

Results don't lie

So on friday I went to the hospital for a check and for the first time in twelve months my results have actually gone up instead of down.

About 14 months ago I had a lung function fev1 of 2.6 or approx 70% and was relatively healthy and feeling good about the future.

Well from that point onwards my health dropped and its stayed down ever since. 

After my last result of 2.6 I became ill and lung function fell to 1.7 fev1 or 45% lung function and I for the first time ever last year I was put on oxygen because I couldn't breathe and my circulation and stats just dropped and wouldn't come back up. Despite 3 trips into hospital, plenty of Ivs Physio, drugs, and some exercise I have never got my lung function to go above 2.1fev1 and changing drugs routines or whatever made no difference whatsoever.

Well last December I was in hospital and on Ivs over Christmas and yet my results still didn't improve above 2.1fev1 and doctors told me I'd been growing something new but I never did find the name out but that only Ivs and promising could control it. I now know it's called achromabacter at least I think that's how you spell it

So when I finished Ivs on first week of January and the results still didn't go above 2.1 fev1 I decided I'd become too pissed off within myself and decided to turn my anger and upset into change

And I also had a goal in mind which I'd applied for in August last year and it's something I felt hugely strong about and wanted to try and achieve 

I applied to do the London Surrey 100 bike ride. 

Well with the ballot results in mind and with my built up anger and upset building up I decided giving up was not an option so I decided to clean my act up and push and see if I could find that lost lung function and discover a new fitness within me 

So my road bike is set up and ready to go and I have set it up on my turbo trainer and I pedalled and pedalled a lot 

Well actually to begin with I just did half hour here half hour there.

And then I spurred on so after the last three weeks I've been pushing on

With hospital in mind last Friday I have been training on my bike like mad, 

pedal, nebs, eat, sleep repeat

In the days leading up to the hospital appointment  I done 40 miles on my bike  and every neb I could do I did and every cycle of AD possible I moved more phlegm 

And this attitude to push on is only growing bigger after Friday's results

You see my fev1 went up to 2.2, now the haters and doubter may say well that's not a big increase and that's true but it's an increase none the less and its 2.2 I haven't seen in over year and knowing that I managed to improve it has only made me feel that I can push it up even more and my overall capacity has increased by over half a litre

So I showed myself that it can be done, despite losing lung function over the last 2 years and not seeing an increase in over 12 months I have turned the odds around and pushed my lung function up and I feel better than ever

Knowing that I could push my results up I came straight home and got on my bike again and did another ten miles

Feeling on top of the world I then got a phone call to say I got the place I so desperately wanted in the londonsurrey100 bike ride

For those of you who don't know the londonsurrey100 is a bike ride on closed roads in and around London and covers over 100 miles. It also has to be completed within nine hours

That's an average on 11 miles per hour. Some task I know but I've been training hard and last week I did 52 miles in 5 sessions and. This week alone  I've been doing sessions of 12 miles every ride in just over an hour, so far most of my mileage has been on my bike and turbo trainer but I have 171 days or approximately 24 weeks away to train until the big day and as time goes on I will take on more and more road rides but for now to keep warm and safe I'm training indoors on the turbo trainer it's basically the same as being on the road as I can change my resistance to however I need to ride like I'm on flat or in hills no problems the only difference is I don't have wind or rain hitting me in the face which could make me I'll so early into my training and ruin my entire plans so I'm pushing my body and my lungs hard but I'm keeping my body safe and warm at the same time

I'm learning a lot and I admit I am scared of what I'm about to do but I love risk and reward and no one ever achieved anything sat on their arse watching others

I will start blogging about my biking adventures soon

Thank you for reading

New year, new me!!?? Yeah I wish

So it's 2015

I have only just realised I haven't blogged since August last year. So my only New Years resolution is to blog more because I can't really make anymore and I don't want to I'm happy with how things are despite the health problems over the last twelve months.

So what's been happening?

Well since i was in hospital in August I had been just trying to do my best to stay healthy but it wasn't a very big success, I ended up really ill AGAIN and despite trying everything possible within my control to shift whatever was causing my chest infection and by early December I was like a waterfall of phlegm producing about 100ml - 200ml of phlegm per day whilst doing AD and normally throwing up just as much phlegm even when I wasn't doing anything. So I decided it was time to come in and start getting on top of this blooming chest infection and start working towards a better lung function.

As I went in so close to Christmas I spent 4 days in hospital and then completed ten days of Ivs at home. I feel better but my lung function still hasn't got up to where I want it to be and to be honest I haven't got near my usual lung function in over twelve months

My lung function seems to have disappeared!!!!

Twelve months ago my lung function was 2.6fev1 or approximately 65-70% and that has been my average lung function for quite a few years but twelve months ago I got very ill and my lung function dropped to approx 1.8 fev1 I had Ivs but my lung function didn't rise above 2.1 even after a few more weeks treatment it only got to 2.3fev1 and I just thought "oh well just keeping doing my treatments and exercises and my 2.6fev1 lung function will come back" how naive and optimistic I was. 

Within a few weeks it was dropping again and late last year it had dropped down to 1.7fev1 so late December I went back into hospital to try and get some Ivs and start getting my lungs back again. 

Well this was my third admission in twelve months where I haven't seen my lung function improve past 2.3fev1 and currently I'm only about 2.1fev1 

So do I accept that I've lost a little bit more of my lung function and just move on or do I try again??

After some discussions with doctors and a harsh talking to by myself I decided of course I'm not going to accept it so I'm giving things another go by myself to push things tidy up my bad habits and become more consistent with exercise, treatments and drugs

I will be the first person to admit I'm not perfect with what I'm supposed to do

Although I'm always saying to people look after yourself and get on with your treatments I'm not always very good at looking after myself at doing what I'm supposed to myself. I never put myself before others because I'm just not that person and the same goes for my health I always make sure everyone else is okay but I forget about my own health. 

So after the last admission and seeing my lung function still isn't back to where I want it to be I just won't accept I've lost that lung function, not yet anyway, so I'm pushing myself to become a better person and sort my consistency out.

Now please don't get me wrong I still work bloody hard to stay fit and healthy I'm not trying to say I don't do anything or I'm lazy nothing like that but we can always improve things. At the moment I'm not always doing what I should, nothing major or a huge crime but it simple things like missing the odd nebs or AD breathing exercises, these things only take five to ten minutes each time but any other cf will know exactly what I mean when I say doing everything everyday can feel arduous and time consuming and feel like treatments and tablets is all we ever do.Its silly to feel like that normal people will say but trust me there are days where you just want that ten minutes to yourself and that ten minutes is your treatment time

Anyway you get the idea of what I mean I hope and I best stop bleating on about it and excuses

So I thought sort it out and get it done. 

I'm now making sure I do 

5 nebulisers

1 - 2 AD sessions depending how I feel

And getting on my bike at least 3-4 times a week,

And of course when I'm not on my bike I'm walking my beautiful beagle dog

And that's every single day

And so far I've been doing everything for ten days and slowly I think I'm noticing a difference, my lung function may still not be improving but I feel better within myself and that's the most important thing and I'm sure my lung function improvement will follow because I'm not accepting I've lost it yet.

2 days ago the cf nurse came and visited me and checked my lung function and it was still 2.1fev1 but I'm not giving up yet and although disappointed that it had not increased I was happy to say it hadn't gone down at all. So I will keep pushing on as I'm sure it's going to come in time

Campaign Time

Enough is Enough

I'm currently a patient at Kings college hospital London where I attend the Adult CF ward for appointments and attend for IV treatment

Well in August 2013 all the patients at Kings received a letter from Kings that the long awaited new cf ward we had been hearing and talking about was in the planning and we would be moving in by the end of 2014. Many of us spoke and was like great it's final in writing it must be all good and this is brilliant.

Well after this letter absolute silence not another word was heard about it. 

About a year passed and after months of mulling things over I decided enough was enough, so I wrote a complaint letter to the board of directors at Kings firstly to complain about the lack of communication about the new ward and secondly about the state of the current ward and how it was failing the patients and the staff and most importantly it was putting all the cf patients at risk because of cross infection and the fact we all share facilities was breaking NHS guidelines

Well this seemed to set things off and the cf trust took note of my letter and got involved and wrote a letter of their own as did other patients and so the EnoughisEnough campaign was born and since then a few of us have cmpaigned for the new ward we desperately need and it's been getting great coverage 

Anyway I will write a full blog about the whole thing shortly

But for now I'm cycling like mad to get fit looking into every nutrition product possible to help me improve and go further in April this year I'm doing an abseil for cf trust at the London Olympic park so I'm doing my best to stay fit for that and then hopefully in July/August this year I will get a chance to do the londonsurrey100 bike ride and that's what all this bike riding and fitness push is for. By having a goal a have no excuses no reason not to get fit and push myself and my lungs to get better. I will get fit whilst raising money for charity and that makes me feel very driven and warm inside two good things all from one thing, I find out if I get my place in the bike ride within the next few weeks so until then I will just keep getti on that bike and enjoying getting fit and hoping I get a place to do something amazing

Thanks for reading

I've finally got a psychiatrist

So after nearly twelve months of getting wrapped up in my life AGAIN, not being able to find a suitable psychiatrist and my own GP not really helping I've found a psychiatrist and she's the perfect fit for what I need

Mentally I'm not well because CF is really playing on my mind and I'm struggling to cope with it at the moment and all the new things that's going on with my health I needed someone outside of everything to talk to. A few months back I thought I was coping but today showed me I wasn't and showed me I've been very nasty to some people very close to me who I love very very much. 

And firstly I want to apologise to the person who's put up with it all. My Fiancée 

Max I'm sorry for all my shouting, all my remarks my rudeness and most importantly I'm sorry you had to deal with it all but also thank you for understanding what's been going on. I love you so much.

I had my first session today and whilst it showed I have been trying to sort my problems out what it really showed was that I can't actually sort them out myself. I never believed I had mental health problems but bottling things up turns them into mental health problems

My psychiatrist used the unfortunate news of Robin Williams today as the perfect example. It can happen to the best of us. Someone who makes you feel happy and makes you smile isn't necessarily feeling that way themselves. That's me according to her. I think she might be right.

I'm happy with what I have in life and what the future holds infact I'm very much excited about the future. I'm just not happy with myself

I finally feel like I might actually be able to solve my own puzzle in my head the lady I will be seeing understand cf and it's mental stresses because she works with many cf patients and that's fills with hope that she's the right person to fix me. I certainly feel comfy talking with her today so it's a good start

Fix me. Isn't that strange to say it like I'm a problem but that's how I've felt like I've been a problem to deal with for some people like I've been a pain in the arse

I'm talking to the psychiatrist again soon and to plan what to do for the future and getting me all the help I need

That feels nice to feel for the first time in a long time that something can be done about how I feel or don't feel as it seems

It's still a big thing for me to say it but I'm not afraid or ashamed to say I have problems and I know that all the people around me will support me in everything I do to get right.

In some ways don't we all have one problem or another?

Thank you for reading

It's been a while. Here's what's happening and how I feel

So it's been 3 months since I blogged

I must blog more often

Anyway

I was recently listening to music and as I do from time to time I realised the lyrics could actually mean something to someone with cf. Not all will agree but I see it like this

The song talks about something being a piece of them which they wished they didn't need

Well to me cf is a part of me which I wish I didn't need but without It how do I know I'd be the person I am today without having gone through everything I have with cf and how much I've fought and the pain I've experienced. Everything I've gone through has helped me learn to become the person I am now. So yes I wished I didn't have it but actually I don't. I wouldn't be the all the things I am now if I didn't have cf I'm sure of it

It then talks about love being a tradegy but how it is their remedy

Well again I see this as something I can relate to cf

See for me I feel like I have to love cf!

Why?

Well because if I didn't love cf and appreciate what it does to me I'd never have the strength to fight it and put up with all the bad things it does to me

What's that saying? "If you can't handle me at my worst you don't deserve me at my best" 

For me this is classic cf talk

You see I see it like this, I deal with cf in my way and I may moan about it and rant on tweets or Facebook about how I feel etc but I've learnt that when the goings bad I get through it no matter what it does be it taking drugs, doing physio, antibiotics or nebulisers I honestly hate doing it all like  for example most people sign up to a gym go once then hate going ever again, except with cf I do all my routine everyday and I can't just give up after a day of doing it, the next day I start all over again. No matter how much I hate swallowing pills or feeling chest pains and aches or doing my nebuliser, when all that is done and if I have had a rough day or I've been ill or in hospital I think to myself

Yes I may be ill, yes my life is all physio, tablets, exercise, days of pain or days of feeling like I'm drowning in my own mucus filled lungs but no matters how many days I have like that, I know there will be one day that will come along (and it may only happen occasionally) that I feel healthy, feel good about myself and get to go out, see the world, enjoy life maybe do something fun or go for a drink or do something new, and appreciate that that day I had a good day, even if the next is a day I'm ill or in pain I will have those good days to help me move on a feel good and experienced good things.

Hence why I relate to the saying I mentioned above

And finally the song mentions insanity and clarity

Well here goes

Do you know someone who I see as an inspiration once said

"Fear, it paralyses the majority but gives clarity to some!!"

For me I do fear things but do you know what even when I fear something I still think "let's do this" 

Do you know when I first signed up to gene therapy and the bronchoscopys it involved I was fearful of the outcome and what it might do to me but I still signed that paper I still did it, I even discussed with my mum if the worst was to happen, and I said it all the way through "mum if this goes wrong you know what to do". Infact at the last and final gene therapy visit and bronc that saying nearly became a true fact but that's for another blog entry. That aside I still went through with it and finished what I started. And that experience only helped me to learn more about myself and how my body is coping.

See for me fear is something I sort of enjoy, the relieve you feel after fear is like an adrenaline rush you cannot experience in any other way. And I'm sure all of you at some point have had that feeling of relieve and joy after fear and maybe even thought "I want to do it again" just like the feeling you get after going on a fair ground ride. We've all had that feeling right?

See when I think of that saying fear provides me with clarity. I don't fear death, I fear how that death will come about, the unknown! But when the unknown becomes known I will feel clarity in my dying days knowing it's coming and at the end I won't have to feel pain anymore, no more physio, tablets, IV drugs, and no more agony, and that is my clarity the end will provide me with, no more CF. 

But not yet.

And the final word I took from the song

Insanity

Well this is a short explanation

I think (and you proberly think it aswell) you have to be insane to say or think any of the things I have said above.

But hey no ones perfect right??

Thanks for reading

What it's actually like to live with cystic fibrosis on a daily basis

I was at work the other day and someone asked 

"So what's it actually like to live with cystic fibrosis?

Well here goes

When I wake up I start by taking these :-

That's 

Two Lansoprazole

Two vitamins A & D

Two Adcal D3 tablets (because I'm osteopenia)

Two ursodeoxycholic acid

One tocopherol acetate tablets 

Then I do the following antibiotics throughout the day :- 

Two fucidin tablets three times a day

Two doxycycline tablets once a day

I take the two antibiotics mentioned above because I'm currently culturing MRSA in my lung sputum results

And

One Azithromycin tablet once every three days to help with inflammation

Ito help my lungs I do these :-

That's two pulmozyme per day one in the morning and one in the evening to help breakdown the sputum growing in my lungs

And one hypertonic saline per day again to help me remove the sputum from my lungs

These are nebuliser treatments that I do using an ineb. This device helps to transform the liquid into a vapour which I can then inhale into my lungs to help it start its job

Everytime I eat I have to do these :-

These are Creon 25,000 pancreatic enzymes

I have to take between three and twelve everytime I eat and the quantity depends on how much I eat or if I drink a fatty drink like milk etc

On average I take around 40 tablets per day

Oh on top of the Creon I need this. :- 

That is novorapid short term insulin as I have cf related diabetes (cfrd for short)

I have to inject everytime I eat anywhere between 10 - 30 units per snack or meal.

On average I inject about 100 units per day

Twice a day I try to do something called Autogenic drainage

This is a type of breathing technique that helps to loosen and shift the mucus up and out of my lungs

I will admit I'm not great at doing this but I'm always trying to improve and am getting more consistent with it

Throughout the day if I'm struggling to maintain a good weight I drink this :-

That is a scandishake

It is mixed into full fat milk and helps give my body what it needs to either maintain or gain weight

Each shake with full fat milk contains approximately 600 calories

And finally before I go to bed I do this :- 

I know that looks similar to another item mentioned above but it's not

This is levemir. It is a background or long term insulin that I inject once a day approximately 30 - 34 units. It is designed to stop my sugar levels from increasing once the novorapid has worn off and to give my insulin levels a constant help throughout the day

Well that about does it

In summary I take approximately

60 tablets everyday

Inject insulin approximately 4 times a day and approximately 130 units

I do three lots of nebulised antibiotics

Two lots of autogenic breathing exercises

And finally at least one scandishake per day

And I still lead as normal life as possible and do things that anybody else does I.e. Go to work, visit friends, have days and nights out, go on holidays and play sports

How?

That is because to me this daily routine is a normal life 

I know no different in life when this is how I live my life

People say don't you want a normal life?

Well you know what they say

What you've never had you've never missed.

I would also like to add that I'm not the only person in the world who lives there life like this 

Of course I'm not there are others who may do more and others who have to do less in there daily routine.

I just simply wanted to show you what a day in my life is like

Thank you for reading