Doing the bike ride and a roller coaster of emotions

So as you may or may not know I took on my biggest challenge ever

I took on the prudential ride London 100 

In simple terms it's a bike ride on closed streets from central London out to Surrey and finishes back in central London on the mall and covers a total of 100 miles and you have to complete it in around 8 and a half  hours or so they say, well that's what I thought anyway 

Training

Well if you follow me on Twitter or Facebook I firstly decided to try and take on this challenge in January this year after coming out of hospital still with a poor lung function and feeling no better mentally or physically and after nearly three years of losing my 2.8 fev1 lung function and having dropped as low as 1.7 approx 40% lung function at one point and not getting above 2.3 fev1 in over two years I felt honestly like I was starting to fail within myself I felt like the beginning of the end had become true and I was about to start slipping into worse times. And still not having decided if I ever want a transplant or not I felt like it was all failing including the hospital and the doctors because it seemed that no matter what Ivs I was on when I went to hospital nothing was ever working so I thought fuck it. I'm not relying on others I'm going to try and do this myself. I decided that I was going to get on my bike and ride some miles and as it turned out a lot of miles. And that's when i decided I needed something to ride for something to aim for and having loved watching cycling events and cycling challenges I decided it had to be something big so stupidly I signed up for the ride London 100 for the cystic fibrosis trust and they kindly gave me a place to give it a go. No backing nag out now aye

So over the next 7 months I came up with a training plan got myself a Physio and changed my diet and nutrition to try and get the most out of my that was mentally and more importantly physical to true and ride this challenge out.

I testa rated light 10 miles 3 times a week and then slowly increased my mileage week by week and slowly but sureLynI increased my mileage 12 miles 14 16 18 20miles 3 times every week whether it be outdoors or on the turbo trainer if I felt like it or felt ill and not up for it I got myself on my bike and trained. I was chuffed when I broke 25 miles in one ride but noticed it was so hard I really struggled. Time for expert advice and there's where nutrition and eating advice became I felt extremely important.so I changed my eating habits and drinking and fuel on bike rides and luckily I won a competition and high 5 very kindly supplied me with isotonic drinks caffeine drinks and isotonic/carb gels and along with small tweaks I got over that 25 mile barrier and soon hit 30 miles and increased my endurance and speed not by much but just like team sky I was getting marginal gains and each gain was giving me better performance. Then all of a sudden I felt like I was slowing and was getting ill but feeling like I could feel it so early I went to hospital and got some oral antibiotics and two weeks later and still training things became good again and I soon hit 40 miles a ride and able to train three times a week again two rides of two hours per week and one ride a week as a biggy I.e three to four hour rides by now it was about may time and training was going well and by early June I was doing 50 mile rides. And stupidly I was starting to feel confident about the challenge ahead. One last course of oral antibiotics just to cover and a cough I had and soon enough it was the week before the ride

I had raised a couple grand in sponsorship I had all my stuff ready like clothing and food etc sorted and I was having my last sports massage before the bike day. Where he proceeded to scare me, I had know for a while that I was having some problems with my right knee but when he checked it over he explained it was feeling and looking a tad nasty. Nothing permanent but no more riding until the ride and plenty of hot baths and ice to try and help loosen the muscles tendons and ligaments in my right leg and more importantly around my knee. So for 8 days I did that ice as much as possible and all I did on the bike was 2 30 minute rides just as a warm up but I got through the week and actually the knee felt like it was loosening up and no pain when bending or walking so I felt good for the ride.

24 hours before the ride

So I had officially registered slept well for the few days before and been carb loading pasta and porridge in prep for the ride I hoped I was ready to go and my bike looked amazing wi it's yellow bars and numbers on 

I have to be honest my confidence had disappeared and I was now scared stiff that I was trying to do too much

Ride day

It arrived so quick but time went so quick I nearly missed the start due to getting stuck in traffic and then having to walk the last mile to the start line in total panic but we soon arrived at the start.

One last check of my phone and a quick picture and I was soon in line to get on my way

My fiancée said I just looked blank in my face like I had my serious face on no nerves just looking ahead I didn't look in fear apparently just that I knew what was about to happen

The ride start

I was soon on the start line gopro on one quick flapjack eaten and go. Feet clipped in and I set off still not knowing what was to come.

Feelings during the ride and a false sense of security

I quickly covered 28 miles approximately in under 2 hours and feeling good and positive with my time I fuelled up with more carb drinks and food agreed to meet my fiancé dad and daughter at forking at 65 miles and set off. From 28 miles to 51 miles it felt like hell very up and down and I slowed dramatically the next 23 miles took me over 2 hours and I was losing time massively and to top it off I had experienced my first proper hill at 47 miles new lands corner and I couldn't ride it I walked. At the food/drink stop I was ruined and very emotional they were already giving us the hurry up or the sweeper team would have no choice but to pick me up and I would fail. Scared stiff and losing time I truched on riding through what felt like treacle. I admit I had to miss leith hill a because I arrived so late I had to miss it and  b unfortunately a gentlemen had a heart attack and leith hill had to be closed to attend to him. I was soon in dorking at 61 miles still thinking I was going to have to stop and I would fail and we had been stopped for five minutes in dorking due to ambulances coming through to attend to the poor gentleman. And I was now crying and to top it off I thought I had missed my Fiancee and family and was now feeling at my lowest like that was the end of my challenge then luckily a lady on the side of the road explained to me where I was having overheard my conversation and calmed me by explaining my fiancée and family were just around the corner. Another cyclist helped me and gave me a boost with some kind words and having stopped crying but still emotional we got moving again and I soon saw the boost I needed my fiancée dad and daughter. With a few hugs kisses and some more food onboard I was off again. Still emotional but no longer crying it was just the boost I needed, honestly if I hadn't of seen them at dorking I was getting ready to stop, I thought I couldn't do. 

64 miles and box hill 

I got to box hill and had no choice but go up and over it. I tried riding it, I couldn't so bit by bit I walked pushing my bike up the hill. I even had to remove my shoes to give my feet a rest but I then had a horrible feeling of failure again and rode the last third with another lady who encouraged me up the hill. And I managed it top of box hill 67 miles a quick drink food and wee stop and I was now in fear that failure was imminent. Not if when. At the top of box hill we were told we had only two and a half hours to cover 33 miles to the finish. I thought the game was up. I was in pain huge amounts of it I could hardly hold the bars or sit in the saddle but I thought sod it if I'm going to fail lets at least see how close we get to home before failure catches me. I was told that from box hill it was mainly downhill. So I thought lets go as fast as we can see if we can make up time. With hardly any energy or grip I hit the first downhill from box hill as fast as I could just over 40 mph which may not sound a lot but on a pushbike it f**king fast and scary but I thought keep going finish or fall off was all I had. And I thought at least if I fell off downhill it meant I didn't fail because I stopped which in my head sounded better and I was already in the worst pain I'd ever felt. THEN a hill up bloody hill again I tried I couldn't so walking it was. 75 miles in top of the hill and a huge downhill again. Tucked in pedalling over 40mph again with the same mentally do it or fall don't stop. It hurt let me tell you a lot. I can't describe how bad I was numb but in extreme pain I could feel every bump and had t o hold on with anything I had now Constantine feeding/fuelling myself whenever I could as I felt empty.

Then 

Hang on I was at 75 miles, 25 miles to go, might I make it? 75 became 80 miles and I still felt like I might collapse at any moment and to top it off we were caught up by Marshall bikers or lanterns I think they are called who warned us if we didn't average at least 15mph from 80 miles to the finish we would be stopped and removed from the road and no finish meant no medal. That medal had been my dream for nearly 8 months not just because of it being a material item but because what it would mean for me mentally I absolutely needed this. 

Failure was fast approaching from behind but success ahead was getting closer

I thought to myself if you fail you have to try again, and with the pain I was in and how I felt I had a little cry and nearly stopped as I couldn't breath then I thought no I can't do this again get flipping going Jamie you didn't come here for nothing your letting everyone down

85 miles

I stopped to fill up with water. Nothing left at the drinks stop. Gutted then two members in the crowd rushed to the local shop and bought a ton me of water and started handing to us. I refilled scoffed a caffeine gel and the last of my jelly babies I just thought get your head down and pedal. 15 miles to do in about 50 minutes we got to try at least.

One last hill was this to be my end? 

 So I reached Wimbledon village and the bottom of the dreaded hill I had been warned about. I couldn't pedal I thought that was it. Then the lantern marshals appeared, I had started walking up the hill slowly pushing myself and my bike up. I can't describe without swearing a lot how I felt the pain I was in and my chest was agony not to mention my legs, I stopped and one of the lady lantern marshals cycled next to me and literally shouted at me 

"You want that medal don't you?" " of course" I replied "what a bloody stupid question"

And she shouted again "well if you don't ride up here I'm stopping you your be out and you won't ever get that medal, better luck next year"

And I don't now how but I got on and did just that, pedalled with this lady, oh ouch I just about got to the top and just rolled over the brow and she stopped and shouted as I rolled on 

" now go get that medal"

11 miles to go

I just got my head down and flew down the next hill nice and steep through this little town bit over 40 mph again now wanting it more than ever. 10 miles to go all flat I just kept pedalling head down hardest gear I could push and going, then o very a bridge and I realised I could see all the beautiful sights of London still pedalling, I took a second to admire my surroundings and then just pedalling, 

6 miles to go mostly next to the Thames, beautiful views

Public support

One thing I need to say and no amount of words will show it but the public were amazing, from the first mile all the way along the route, kids on hills telling you to get a move on, old couples on the hills with their cups of tea clapping, families and parties along the route all shouting support at you

You can do it

Keep going

Another mile done 

Keep going Mr cystic fibrosis

And the people handing out food and drink, 

Everybody on the route was amazing I can't tell you how much that kept me going mile to mile such great support

Then all of a sudden I hear, go on sir under 2 miles to go, your going to do it don't stop 

And now I'm riding next to Houses of Parliament still trying to go as hard as I could in fear of van noises 

Why? Because every van I heard I thought it would be a sweeper van coming to get me and I would fail. Then I can see Trafalgar Square, not realising where I was I'm told to turn right, then it dawns on me

THE MALL AND THE FINISH LINE 

I see the entrance to the mall and just ahead of that the finish line

I pedalled still head down I didn't want to stop pedalling until I crossed the line, listening tithe supporting the noise I cried again couldn't breath so stopped myself and crossed the line

I'd only bloody done it. I had finished my biggest challenge ever. I was gutted I had to miss leith hill but I had still done 92 miles and I had made it to the end. I rolled to a stop exhausted utterly empty got off my bike and walked the short distance to the medal cue, and started to cry again and the lady put that beautiful medal over my head and around my neck, I walked on now in a day dream of success and disbelief utter exhaustion and feeling totally f**ked I held my medal tight showed it to the camera turned my camera off and then literally collapsed on the side of the road, I momentarily fell asleep/passed out but a kind man I had met on the ride nudged me and asked me if I was okay and well done we exchanged congratulations and he headed on his way. 

I sat thinking but to be honest I'm not sure what just in a daze. And the next thing I know I'm being cuddled by my fiancée and daughter and those were the best cuddles ever it made me realise i made it safe and was safe with my family.

I could barely move but it was so worth it but NEVER AGAIN haha

I was glad of the long drive home my back bum legs and especially arms and hands were ruined.

And I didn't fail

I made it and with a lung function that at best is only 55% what a normal person has, basically imagine having done the bike ride with basically only one full lung, that's what I achieved ,someone like me has no right doing that but against the odds the training, maybe ignorance, support that family stop at 60 odd miles and most definitely fear got me to the end

Thank you all

I just want to say thank you to everyone who has supported me, sponsored me and who sent me good luck messages and kind words without you all I'd never have done it 

And sorry to my family for the stress I caused and especially my fiancée for putting up with my stress, training and generally being a pain in the arse, you all have been amazing.

I'm still recovering but I'm gettin back on the bike very soon and going to keep riding and call it training and go on a few rides while I decide what to do next 

Triathlon and London to Paris keeps getting mentioned, but who knows, I need to decide soon though whatever I do, all I know is it has to be a biggy 

But I don't know if I will ever top this achievement not in physicality but in the huge mental boost its given me, it's answered a lot of questions I had about myself and it's gone along way to stop me doubting myself 

It's taken a few days for it to really sink in and it still hasn't fully now but it will I'm know it

Thank you to you all for supporting me 

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