hospital treatment is finished but for how long

on monday i finished my latest iv treatment course of antibiotics.

its been a good success

and infact its the best ive felt in quite a while

im still not hundred percent but i have got close to it these last two weeks
my diabetes is better controlled, my chest feels okay and alot clearer. theres still more to clear as today showed im now clearing what i hope is the last of the pluggy thick bloody old mucus that has been affecting me the most.

all i got to do now is keep up the gym and monitoring everything and of course keep up the consistence that has made me feel so much better lately

i havent been to the gym for 5 days but its been christmas so ive enjoyed scoffing and putting on weight and enjoying feeling so much better

the problem i have now is sleep problems im struggling to get a normal sleep pattern back but its not a major it will come back in time and plus i feel more energetic now and can deal btter with the lack of sleep and exhaustion

i still need to work on my fev1 lung function but two weeks is a short period of time and i feel very happy to be motivated and i actually miss not going to the gym the last few days and im looking forward to going back

my main goals for the net few months are

build up my strength and stamina
build up my body at the gym
get in to a better mental state as im still down slightly but starting to change after seeing how ive improved in hospital is helping me change my state of mind
keep up the consistence with my drugs diabetes and fitness

and of course my final and most important aim is

to stay healthy and get fitter and stay out of hospital as long as possible

no one know the future but im positive enough that i can now start to write my own future

the last two weeks have showed i may not be as fit and as healthy as i used to be but i can certainly get close to it.

happy new year to you all and make 2013 your own thats what i intend to do

after all ive got tough mudder to do and im not backing down in something i feel so strongly about

How I used to express my feelings and time I showed a bit more even if it is strange

When I was younger I used to sort of write a blog but on paper and I used to write it more to myself as a third person. For years I did it but no one ever saw it until recently and I have actually now lost the papers
But I know exactly what I wrote

Those feelings and thoughts don't go away

I'm sat here in hospital looking out the window at that there London Town listening to my music and to my own thoughts

So I thought I'd write a little down about how I feel when I'm like this and let you read it

Sorry if any is upsetting but no point being blunt its boring

I'm going to talk about how I strangely accept things in no uncertain terms

So it's currently 12:30am most people by now are either asleep working or drunk (pick which one you was at that time)

Me well I'm sat here in hospital going through my usual cant sleep lets think

I love looking at London it's beautiful, it's a place I love to come to and could more than likely live here. Not work though oh it's to busy but live here would be great moving at your own pace watching others rush to work at the necessary pace to get somewhere at the right time

It's thought provoking to watch

"Why the rush? What are you late for?"

It makes me think "life waits for no man"

Never a moment to stop in that moment of "I must get there"

Powerful to think but even more amazing (well I think so anyway) to be the person who gets to watch it happen. I love it because it makes me think so much about life

Why is there times when we are in such rush but yet times when rushing feels stressful and unnecessary because actually we don't HAVE to do anything

We can actually come and go as we please, we are never forced. We just choose to sometimes think it forced. It's not (although my boss would disagree as would yours no doubt)

Except

For people who have illnesses or know the end is approaching it feels necessary to sometimes rush. Well it does for me sometimes. Others may differ

I mean who would want to miss that opportunity, that moment, that view, that place, that feeling?

I don't, and now you see why sometimes it's necessary to be somewhere at a certain time.

What's that saying curiosity killed the cat? It always gets the better of people. I'm no different.

I will always want that thing, feeling, moment, view, opportunity, to be in the perfect place to breath slowly pause and see what's before me. It's properly why I've made great choices, mad choices, bad choices, unwise and regrettable choices, and may be one or two drunk choices, I'm only human to have made a mistake or two surely? Even if I missed what I went out for its nice to know I tried I at least went I just didn't get it right.


I'm sat here in hospital looking around my room.

How do I feel?

I'm okay here, I feel safe, I feel like I'm expected to become better, feel better, do better

I feel I should come out faster than went I came in. It's quite a powerful feeling to feel your expected to do better, if a little nerve racking (cue lung function machines and I'm sweating)

But I'm sat here with truths to face,

People don't get the chance I do to come out
People I know get better here
They also get worse here.
Most leave, some don't
I've known people who never left
Opportunities stolen,
Choices forced

It's a fine balance in my mind of 50/50 of the list I have in my head

If I do well and fend off cf for many years to come I will be in and out of here as and when necessary but I still know I'm able to walk out

If things go well I will most likely die here in many years down the line
If things go badly I will most likely die here sooner than I know
T
Time is uncertain, but opportunities when taken and pushed are not

That's why when I'm here I tire myself out because I push, I want the right things, the good things and to work hard knowing its to get out feeling better and motivated to go on. To be able to walk out that door

Would I do all that if I knew it wouldn't work and I wouldn't be walking out
NO, but like I said time is uncertain

It's just right then that I'm cocky in the fact I'm 100% certain I'm walking out better everytime

All that feeling comes from stopping and looking at things, the passerby, the optimism

It's funny because I sit here knowing I will likely die here and you know what? I'm happy with that feeling its easy to control that feeling, how or why I'm happy may be odd but

When I'm here I know I get better, I'm in good hands they care they watch they study and learn you

Now I'm that passer by with a place to be and the hospital is the one watching thinking "why the rush"

So to know this could be my place to die is cool because for many years it helped me get back up, rub me down patch me up and say oh on your way, but when it can't do that no more it can be there to say, "it's okay sit back and let us do the rest"

So you see me get better,me get out, or help me I know it's simple but in my mind death and hospital and my health make me feel amazing and they motivate me not scare me

To me it's comfort I'm okay here and many years I will feel the same

Come and go


See I'm a cocky lad but if I wasn't I'd hate to even bother

Either way

I will be OKAY

And

Either way

I will still go out them exit doors

Is that odd?

Because to me it's a safety thing

But

It's okay I know I'm going nowhere other than where I want to

I'm fine right here but prepared and that makes me happy that I'm doing okay, i need nothing more

And that's what my love for London makes me feel

Strange ? Maybe!

But after all


Why the rush?

I'm happy to take my time on this planet

Rush? Nah I'm having to much fun and I haven't run out of wanting everything

Never will

But im ready for force

If I wasn't I could smile be sarcastic and say "hello death, oh yes you've gone the wrong way"

"Keep walking lol"

Hospital, progress and a sense of regained feeling of something I thought was long lost

Well it's day four of being in hospital and I must say I'm buzzing with how I feel today.

When I came in Monday I was nervous and thought oh god here we go same old shit I don't think this is going to work

But

After talking to the doctors getting my line and starting the drugs, physio and gym I feel ok and that yeah the plan may just be working. I feel the doctors are bang on and they are really listening and working hard with me to get things right.

It started nicely you know meet new doctors discuss the usual and a plan ahead

In simple terms my plan is

Get line in
Start drugs
Physio
Gym
Rest but never rest long enough to keep working hard

I'm on timentin and tobramyzin

I started off easily but the drugs are four times a day around the clock

Heres my day roughly but times can change but not what has to happen each day

6:30am

Check diabetes level
Do timentin

7:15am

finish timentin
Take one a day tablets approx 10 tablets
Carry out observations
Get more sleep

8:30am

Breathing exercises
Nebuliser
Get breakfast

10am

Gym
Do nebuliser
Breathing exercises
Check diabetes


12 midday

Ivs timentin followed by tobramyzin
Lunch
Check diabetes

2pm

Finish drugs

3pm

Physio/breathing exercises
Doctors visit

5pm

Check diabetes
Dinner

6pm

Do timentin

6:45pm

Finish drugs
Check diabetes

7-11pm.

Rest up if I can

11-12pm

Check diabetes
Do timentin

12:30pm

Finish drugs

3am

Check diabetes

And that is basically a day for a cfer on a cystic fibrosis hospital ward

Busy and exhausting but if all goes well it wells very much perfect and the hard work has paid off

I will have to do this for approx two weeks depending on how my health is and how I improve

If all goes well I may only have to do a week at hospital then be allowed to go home and do treatment from home for a further week but the routine must remain the same at home

No let up can be had

This admission is an important one though and most likely the most important of my life if I intend to live a longer future and to get my health back to where it should be.

After the last 12 months I noticed its been my worst as a cfer and its been hard but I haven't stopped I've tried and failed but never just stopped

Now I'm trying again in this hospital visit

And failure is not on my mind this time

Why?

Because this time I think the combination of drugs physio and hard work on my part aswell as the doctors and physios is nearly perfect provided it keeps working till the end of the planned two week treatment

Why do I think it's the right combination and working as best as it could?

Easy to explain

We are monitored in many different ways but importantly we are measured by our physical abilities or lack of it to start with and how we then progress over the two weeks
This can be seen in our gym work but more obviously by our lung function tests

On Monday when I arrived I was tired and my lung function was 2.1 fev1 and 3.3 overall capacity
Or in percentage terms about 60%

So with a theoretical plan in place me and the staff set to work

Gym started slow on Tuesday I could only 20 minutes total 10 on cross trainer 10 on bike both at low pace
And physio was producing bucket fills of phlegm

Well in short it's now Thursday

And today the phlegm production is starting to be easier to get off my chest and more importantly the quantity is becoming less

And the pseudo is no longer growing so far as the test results show

I've had my vitamin tests done and tomorrow will know the results a will also being doing lung function to see if I'm improving

Now I may be optimistic but I'm sure everything's improved

Firstly I've been shoving in vitamin supplements life my life depends on it (which in actual fact it sort of does)

Secondly I've put some damn hard work in

Physio I've been doing all the time just trying to move phlegm, get out every drop that I possibly can always trying to feel where it is a cough it up, I've relentlessly done nebulisers trying to aid more phlegm movement
I've just not stopped
But thirdly and most importantly

In the gym I've pushed like no one else is doing here like nothing else matters but to push and get the miles in

Today feels like my finest achievement

I did one solid hour of cardio work non stop and totally pushed

To the point I thought I couldn't even get off the bike not that I let my physio see that

I covered 12 miles in total something I've not managed in a year but in four days of real hurt for me and a new motivation I've pushed to get better

In total I did 30 minutes 3 miles on the cross trainer and 30 minutes 9 miles on the bike

I cannot describe to you all how good it has made me feel how relieved I was to see how hard work and not giving up can make me feel

And I want more

Tomorrow I will push more I want more distance more air in my lungs.

I feel great and even if my lungs have only improved a tiny bit in my tests tomorrow I feel I've pushed a barrier over I've leapt a wall and now I'm going to leap higher

My motivation is high my legs and lungs feel amazing and I'm going to push

Bring on the miles bring on the running shoes bring on the pain

And most importantly I feel I can now push for something I want to accomplish in 2013

BRING ON TOUGH MUDDER

I CAN DO THIS


My so called disability is only just making me want more I feel spurred on like I never have before

Who would have thought a disability could feel like a new ability

I've got another ten days of treatment and I'm going to push whatever I can

GET OUT MY WAY

Thanks for reading

Blog Update, winter plans and generousity

Well as I havent wrote on here for a while I thought id have a write and a rant and my plans for the winter.


I had a hospital check up last week and surprise surprise im still ill and not my best (I knew that would be the case). I think I have found the rot cause for not being able to get better or fend any bugs or illness off.

The doctors explained that the PSuedo and staph is still growing and although the drugs were helping it was not doing as well as thought. I did sort of expect this.

The worrying bit though is about my Vitamins and the fact my levels are only at about 30% of what they should be.

This goes to explaining alot in particular the vital vitamins that control my immune system are dangerously low and I basically have no immune system at the moment hence why the drugs cant perform to their best and why im getting ill so much.

It was decided it was best for me to come into hospital and do a course of iv antibiotics and get some vitamin boosters going to help get my levels back up and then work on a plan to keep them up.
Im also going to trial some nasal sprays as it has become apparent im suffering with severe sinus problems and could be another major contributor to why im som ill so much of the time.

I am hoping that this will actually work this time and I will be spending every moment in the hospital working to improve my health and start pushing my fitness again.

The only problem is I still dont know when i can go into hospital and start ivs as they are totally rammed at the moment. This happens every winter but this year talking to my team they reckon this is the busiest theyve ever been. Good luck to them as I know my team works so hard to help so many out in such a short space of time.

So what are my winter plans?

Quite simple really

Keep doing anti-biotics
Wait for call from hospital
Go into hospital (Hopefully not over xmas)
Work hard on getting better whilst in hospital
Come out feeling healthy and work towards improving myself
Stay healthy over the winter
Keep going to the gym
And finally find a new job (if I get made redundant which looks likely)

Thats really my plans for this winter in simple terms.


I have to say i am struggling extremely especially over the past few days ive noticed that my body just seems to want to do nothing and feels like im shutting down a bit to try and save my health.

I cant seem to sleep despite being totally exhausted
suffering constant headaches
suffering with my chest and cough which is rather painful
being sick physically everyday
struggling with my weight
no energy despite trying to stay fit at the gym
and finally
Feeling low as I still need answer to work out the best way forward for my future to keep my health at a good level.


I have no idea when I can go to hospital for IV treatment but im hoping its soon and not over christmas.

I should also say I have had some amazing news from a friend of mine today

She is doing the boxing day dip this year in deal and has decided to raise money for Cystic Fibrosis

I wont name that person just yet as I havent asked if she would mind me naming her but I want to say a massive thank you to this person, their generosity knows no bounds and im truely grateful for what she is doing as I for one would certainly not even dip a toe in the sea on boxing day let alone go for a swim

I will write a seperate post when I have more information and I ask you all very kindly to donate money if you can.

I know that many of you who read this blog wouldnt even think of going near the sea this time of year so why not support the person doing it and donate even just £1 for someone else to enjoy a lovely boxing day dip

 Thanks for reading

I havent blogged in a while

I just seen my blog and noticed I havent blogged in ages so thought while ive got nothing going on id write a catch up blog.

Not much going on really other than im still struggling to fit 5 nebulisers in a day due to work and the time constraints. (I will not do my nebs at work). I have to do 2 pulmozymes a day 1 hypertonic saline a day and 2 colmycin a day. Seems easy until you realise they need to be spread over time and work lands right in the middle.

A general rule is you need at least 1 hour between nebs. In the evening its not too bad its the morning treatment. To be able to do this I need to get up early but if I do that I dont feel well as i dont get the sleep i need to feel ok. And if I go to bed earlier in the evening to help the morning treatment I cant fit in my nebs needed in the night. What a nightmare.

That said im still doing 4 out of my 5 nebs in the week and of course on days off im doing all of them so im not failing too much.

I have still been going to the gym to keep fit and ive managed to put weight on. Im just a smidge under 9 stone now and I havent been that weight for nearly a year which is great. Although it has taken me a year to put on half a stone despite eatting like a pig. I had two dinners last night to give you an idea of how much im trying to eat.

That said im happy with my weight gain. I just hope it can stay that way over the winter.

+My chest is and i say this very honestly OKAY but it could be so much better although it could be alot worse.

My last visit i was 2.5 FEV1 which is okay but my best in the last year was an average of 2.8 and highest was 3 so ive got so much more to improve.

The pseudo seems to still be on my chest but its slowly going.

I have good days and bad days. I thought last week I had a good clear chest then come the weekend until now I feel so clogged up. Im still giving it plenty to shift it though but im starting to get very impatient.

Im sure if I did some iv drugs in hospital for two weeks it would just shift it very quickly but its only if the doctors and me can see eye to eye and get the right treatment plan in place.

But the ward is soo busy at the moment as everyone seems to be ill (its always the winter that causes the ward a nightmare) there is no room for me at the moment so im just sticking to nebs, tablets and exercise. And that does seem to be doing the best job that it can.

I could say im feeling very low right now because im trying trying but I hate slow progress. Im fighting hard with myself to self motivate but its hard when I cant see the results as best as i should.

Im still puking on a regular basis when doing salt which is starting to get annoying but i just have to keep thinking its good its clearing things, although ive found a way to sometimes stop it happening but it doesnt always work. Just got to keep going.

Im still utterly exhausted and am struggling with exhaustion so much. I thought i was starting to get over it but feel actually ive slipped into worse exhaustion.

I just want to get better but patience is wearing thin.

I will be better one day im sure I just cant see when.

Oh well enough of me moaning.

Ive got the hospital tomorrow to see how im doing. I might surprise myself and the results might be better than im feeling. Im hoping if its good it will give me some motiviation to keep pushing.

If I can see the results coming I'll keep wanting more. I just hope its not got worse as i dont know how id feel for that right now.

This has to go well this week.

If not ive got my little girl over the weekend which always makes me feel great and Love her to pieces and if my health isnt good at the hospital appointment im sure she will make me keep fit by running around all weekend so thats always amazing to know I can keep up with a energy full 5 year old he he :-). Its looking like swimming and kids planet which keeps any parent fit plus we need to start our christmas shopping. Maybe I should cancel hospital tomorrow and rebook monday after my fitness weekend ha ha. Life isnt always bad :-)

Thanks for reading

Back to the Gym Finally and odd thoughts and a change of things

After nearly two weeks of being a complete lazy arse I went to the gym last night. Nothing too bad just 15 mins fast bike ride and weights

I have to say im struggling to lift my arms today as I did try extra weights and im glad i did even though it hurts.

Ive actually missed going to the gym but I had time away from it due to having a nasty cold and to give my new meds time to start working.

My cough has improved alot and my production of phelgm from my chest has slowly decreased which im hoping means the pseudo is getting better, although im taking nothing for granted.

Im finding it a struggle to fit so much into my day now with extra meds and nebs.

Im doing 4 - 5 nebs a day which is a pain when you have work to fit in during the week. Easy at the weekend but time is hard to find when you work every week day.

That said im glad that I seem to feel like the cough is going and production is less even if I am still having to throw up regularly due to the salt nebs which is horrific and makes you gag with every breath but it helps me so im not giving up on it even if i hate sick feeling it gives me.

I have also given up coffee, i was finding that coffee when i drank it was making me very ill. At first i thought maybe its the dairy product but I gave up coffee for two weeks now and find that im not getting the feeling i was so I will be sticking to that in the near future. Although being stupid yesterday I had a costa coffee just to try it out and my theory is right my body seems to hate coffee as i got the sick feeling back and eventually threw it up.

Not sure if its an allergy to coffee or not as I still drink caffeine drinks but certainly coffee is a no go for me. Signs that my body has changed as i used to love coffee so much.


Odd Thoughts

I have been a bit lost in my own head lately thinking about cf and how i have lived my life with it.
Im very glad to have lived how i have and be lucky enough to be as healthy as i am

But

I want more. I want the old healthy me back that I was in my early twenties and late teens. I always feel like im not doing enough to push myself and im very critical of myself im my own worst enemy.
I have plans for next year to be fitter and do some tough challenges and im not giving up on that.

I will acheive what i set out to do.

But i frustrate myself that I do not push enough, do not do more, do not help myself enough. Not going to the gym has really annoyed me, i knew i couldnt at first as i was quite ill but im always ill so i should go no matter what. Thats what I always tell myself

DO MORE

Even if at times i cant I always feel like i need to.

Its odd to think so positive like I do yet still feel like im negative. But I like that feeling its how I live and tell myself to push.

NEVER GIVE UP, DO NOT GIVE IN, MAKE IT FUN, ENJOY THE PAIN AND PUSH ON.


Its strange to have odd feelings but never feel odd inside myself even though im very odd inside, I mean after all I have a life threatening illness but never feel close to death, just smile and step away from it.

I always confront my demons but never need to fight them as I feel im a step ahead of the end.


Would you find it funny to know death is obvious? Yet think nah not yet it seems like a boring end.

Thats how I always feel and thats why im very positive in life. Because giving in seems dull to me and too easy.

Life is a challenge no matter what doing nothing is boring and too easy. If thats how you prefer to live surely theres no point, that is not how to enjoy life.

I enjoy life more because I know of death understand it and maybe infact have learnt to love it.

Why

Because you cant change it and moaning about it only seems stupid.

Why do you think in death we celebrate life? Because its positive and everyone loves good memories right?

My thoughts on transplant

I watched a lovely and emotional programme last night called Love on the transplant list, I watched it on BBC IPlayer but it aired on Tuesday BBC 3 9pm.

It was a nice programme about a couple who were planning to get married but the Lady called Kirstie if my memory serves me right suffered from cystic fibrosis and was on transplant list as her lungs were so badly infected they were beginning to fail and she needed a donr asap.

It was great to watch how CF affected her and her husband and family and she was great in it.

A couple of notes on it though.

The programme seemed to generalise CF too much, gave very little information about what cf is and how it works and not once was it mentioned why her lungs were failing or what infections she was suffering from or the drugs that she was on.

I loved watching it and was great to see she made it in the end and seemed very appreciative and lucky to have got through the worst period of her and her families life.

BUT

This programme will not really help to raise awareness as much as it could of.

It only mentioned few facts about CF
Nothing was mentioned about routines with CF
Or how individual cf can be between each sufferer
Nothing was said why her lungs were failing in detail and
What information was too vague

I dare say that anyone watching that who knows someone with CF proberly sat there watching thinking "why, how, when, who and what" and will no doubt be wanting to ask a sufferer many questions.

I think the BBC should now do a series of Programmes highlighting individuals and follow maybe a dozen different sufferers with varying degrees of symptoms.

This could better highlight in detail how different cf can be from one person to another and how it all affects us mentally and physically and give more information on cf and the different treatments available.

I will be writing to the BBC to see if this is of interest but I dare say that others will have already done so or be doing so.

So what are my thoughts on CF (Someone may be saying im sure)

I have for a long time said I will keep myself healthy as best I can and for as long as I can of course I will.

But im 27 years old now and considering when I was first diagnosed life expectancy wasnt much past teen years, Ive done well to get to where I am and still have fairly good health (despite this year being my worst)

Im glad to say ive never had to use oxygen (my lungs have been well enough to work on their own even when ill) and ive never had to consider life saving treatments.

My stance is that when I do become too ill to function on my own that will be it for me I will not accept a transplant and let someone else have a chance.

I have known this for years and am happy to stick with that because ive led a good life and fulfilled many goals I had. Some others have not even had a chance to start life yet so Id be glad to see someone else get a chance with new lungs.

Im not saying that I will never change my mind but im pretty hard fast on how I feel going into the future when it comes to my health as I see myself living for many years yet hoepfully before transplant is ever mentioned by my doctor.

I have fought with cf my whole life but going on the transplant list and going through the rehabilitation process and not to mention possibly getting really ill before the transplant and not even making it. I dont think I could fight through that and the rehab process.

I find it easier to accept the end and not put others at pain. Once I know the path be prepared and thats it not live with false hope, maybe never get it and let others down plus the months of pain before and after. I dont think I could cope. I find my mental strength is good to life with CF but im unsure i could deal with a transplant.

I asked my partner last night "Does it feel different to watch that programme knowing with with someone with CF" without even thinking she said "yes of course it does"

Not many people are aware of how bad CF can get and I think people who watched that programme now have a different mindset of it and are asking themselves lots of questions.

A CF sufferer is used to pain and suffering and day to day life of CF. People outside see it, learn it, understand it as best they can.

BUT

What most people without CF who have a friend, relative or partner with CF do not realise is how bad it can get and how that can affect them watching someone go through life with CF especially if that cf sufferer is on the transplant list. (That programme last night was brilliant at showing that)

That programme last night showed how it affects people who love someone with CF so well. I have the most admiration for them because it must have been so hard to watch and feel helpless.

And thats what people learn the hardest at the worst times.

When it gets bad all they can do is sit back and watch, wanting to help but in no way being able to

That makes me feel guilty to know that I can make people suffer like that even though its not my fault and thats why I have my stance on transplants and not wanting one. I can deal with pain but can others??

I recently spoke to a friend who dated a cf sufferer but they split because she was unable to handle the daily pressures of it. Her words really make that decision easy to explain.

"I couldnt be with him anymore, I couldnt watch someone I Loved go through that, it was best for me and him to split, I still care but now I dont see the real CF I do not suffer the pain I did watching him go through pain. I couldnt take it knowing that in the end the worst could happen and I could do nothing but watch it happen infront of my own eyes. I needed out"

Now some people will scoff at that and say thats not fair and its painful to leave someone for that reason.

But it is not unfair at all.

Its harder for someone to watch it than it is to suffer with it and I totally respect my friend for wanting to walk away. Why love someone so much when you know it can so cruely be taken away from you?

I respect her more for walking away than I do lying to herself and him thinking that all is going to be well.

I have even said to my partner a few times "If this gets too much and you want to walk away I would absolutely accept that because I understand the suffering it causes"

Being a CF sufferer it doesnt only make you suffer it makes the people you love suffer too

The confidence or lack of it that your CF team gives you

Well,

As you may have read im now in the process of starting to kill of Pseudomonus, well at least trying.
Theres no room at the inn (as was famously spoken) so it seems like the waiting now begins.

Im on yet more anti-biotics and back on nebulised anti-biotics which I have not been on for over 6 years. I have had a good run of not growing psuedo infact I havent grown it for approx 11 years.

The plan is to start these which I did last week and see how I get on and the cf team are meeting this week to discuss the situation and I have a hospital appointment to plan on when would be best to get me in for treatment. I say Plan loosely because they are packed out at the moment and actually I find it better to stay out than go in as I can avoid more bugs etc.

I also still have a feeling of a lack of confidence in some of the medical team I see.

Firstly let me say the physio team are on the ball and I have no lack or bad feeling in their swift response or judgement.

What does concern me is the doctors who are supposed to look after us.

To me they feel lost. They either will not listen, choose not to listen, or are too scared and are following the rules.

My old doctor once told me the only real medical rule in cf is there is no rule with cf, all are different, not one is the same and all require seperate thinking when it comes to treatment.

The new team of doctors do not seem to think this way and to me seem too scared to listen and go by what the patient is saying by what they feel they should try and to do a bit of research on each patient and throw the guide book away.

When I go to discuss the next move at my appointment I will be voicing my concerns.

Its our health and if we dont feel confidence in a team, or feel safe why should we let our guard down for something that isnt right or doesnt work?


The last time I went in the doctors seemed lost and just stuck me on drugs that didnt work and when they failed they tried something else which I felt was making me worse.

Something has to change to make me feel safe in someone elses hands

and people wonder why I am so closed when it comes to my health

Theres a good reason

If I dont feel protected I dont feel its worth the risk of putting basically chemicals toxins into my body

Every time we have IV treatement we are potentially risking our lives by trusting others to get the right stuff pumped into our veins.

What happens when they get it wrong and all around are able to see it?

How will the doctors guidelines protect them then?

Some do not listen, but how will you learn if you do not wish to learn from others?

The nightmare becomes reality

Well just one more sleep away from enjoying my 27th birthday and the hospital goes and ruin it

And here's why

Enjoying a relaxing day I get a phone call from my physio at kings

Eventually getting in touch with her she's gives me a hammer blow

I have grown pseudomonas for the first time since being a child and its not looking good

So guess what happens now ? Yes I have to return to hospital ASAP for IV treatment and there's no other option.

I can't tell you how angry and disappointed in this discovery

In short though pseudomonas can be deadly and when I used to get it I usually suffered terribly and needed intense treatment to kill it off.

The reason why I'm angry though is at the lack of response at the hospital
It's taken them two weeks to tell me this and in that time the pseudo could have spread massively and that most likely explains why I'm producing so much from my chest and getting ill again

They usually get results back in 5 days to a week yet I've heard nothing for two weeks

Questions will be asked why its taken so long and that this has really made me angry and upset and I just want to forget my birthday as I feel I have nothing to celebrate

When I get to the hospital they better be prepared for questions and a complaint about this slow response because my health will now have taken a massive blow and will have to start all over again

My big attempt to get better has now seemingly been pointless and I just don't know why I bother when the hospital seem to forget how important a fast response is to pseudo treatment

The gym and seemingly all my neb treatment has been for nothing as none of my drugs can treat what I have

It's bloody pointless

Figuring things out for yourself or myself as the case is

Over the last few weeks Ive been quite busy with my health and things related to it.

I had my annual review which went okay but of course there is always room for improvement especially in my case but it showed if I push on I can improve and I will better myself in time if I stick to what ive been doing.

I havent given up on the gym and have been enjoying trying to get fit again and trying not to embarrass myself on my weights programme trying to increase my muscle mass (or currently lack of it) and ive noticed its working slowly but it is working.

Ive upped all my physio and nebulisers which is also making a difference when combining it with gym and fitness work.

Im hoping that all these things when combined are going to make the difference and my hospital results certainly showed that if I keep it up and keep working on my health it can certainly improve to where I would like it to be

BUT

And here comes the most important bit.

Mentally I think I have figured whats wrong with me and am now managing to change how I feel mentally about my health and thats really helping me to improve and feel good about myself again slowly but it is changing but I know change is happening

For a long time now I have been sort of thinking that life is what it is and over the last ten months Ive done some pretty serious damage to myself and I was beginning not to be negative but to think that my health had decreased and I was now working just to keep it at the level it is and giving in to thinking that was that and that I could not get any better

I also have had a lot of thoughts about Death and how quick CF can make that occur especially after the events over the last couple months where ive known of quite a few people unfortunately being taken by CF.


Now though after a few weeks of upping physio and nebs and doing the gym Im starting to feel that actually I can improve things and I do not have to accept that I am as best as I can be.

Mentally it feels huge to feel this again as I really have been harsh on myself blaming myself for being ill and decreasing and feeling so ill and for the ivs not working the last time I was in hospital but I figured out that actually it was just a bad IV treatment that wasnt successful for me and I didnt push hard enough when I was in hospital I just slopped and did nothing other than pump drugs in.

Im starting top feel like I used to when I got ill and I used to think oh its just a cough i can kill it off and get fit again and then prove it by putting the hard work in. Im starting to get my interest back in the things I used to love like running, gym and the sports I used to play

I cant lie I think I easily slippind into an acceptable mental state and have found it hard to get back to my mental state of I can do this, to a mental state of loving things again.

I lost my way for the first time and because of that I didnt know I was lost its not made me feel this way before.

Now though Im starting to know I CAN get better I WILL and most important I AM getting better

That above all else has made me come to terms not that I should accept where I am but to Accept I can be where I want to be.

Like I said in a previous blog :-

Some of us live to excel, to inspire others, not by disability but by ability, to live and to smile, to do something amazing look back and say "I did That".
Do it for yourself first and others will notice. Life is about jumping over obstacles and turning failure into Success.


I feel I let my own words down by not doing what I said but now I am.

By seeing the bad side recently It made me understand my good side and ive got to make that better. Never join the others but to accept im an individual and I do it best when I stand out from others

Alcohol: The giving up of

Over the last year I have virtually given up drinking with the exception of the odd night out. I think ive been out on the drink 3 times this year. Thats a shock to people I know go out all time but its taught me alot this year.

Ive discovered that alcohol has really affected my chest and wellbeing in the past so over the last year ive cut down to virtually not going out and drinking at all. I will still go out but just not drink

I found ive saved alot of money

I went out in march this year for a few too many with some very good friends in the village and then I didnt go out again until recently, as I just havent found a reason to want to drink or feel like I enjoy it anymore because although im lucky I do not suffer from hangovers but I get seriously dehydrated and that really affects my chest and health and the day after I feel like I cant shift anything off my chest as its all stuck and my stomach is a nightmare. It can then take an entire day of drinking fluids and nebulisers to start gettting things moving again off my chest. Its a nightmare as it makes me feel tight chested and that I cant cough anything out.

That seven month period of not drinking showed just how much it can help your health and especially my chest and stomach.

I had a few this weekend with some good friends and my girlfriend but come sunday I found my chest all blocked up again and I spent sunday drinking tonnes of water to re-hydrate and help my chest loosen up and get the mucus moved it makes you feel tired as I just couldnt get enough air in my lungs.

I dont like this feeling and especially as im not 100% at the moment in fact my more like 60 % so ive decided that drinking is just not for me right now so im not drinking again until I feel my health has improved to as best as possible and even then I just may not bother anyway.

I may have one or two to celebrate my birthday or xmas but i Just dont want the hassle of trying to clear my chest after its painful and annoying so id rather drink water than suffer with my chest

Health comes first and Ive had my fun drinking when I was in my early 20s so now I will have fun improving my health and watching others suffer with their drinking antics ha ha

Calories calories calories

After going to the hospital last week it appears that im sort of on the mend.

But not completely.

I got told to keep doing what im doing but eat more.

Im officially 5ft 6 inches and I weigh 57.4 kilos or in old money about 8 stone 7 pounds in clothes.
 That gives me a BMI of approx 20.4
 Within normal range but not for me I need to be up more like a 23 so I need to put about a stone on in weight.

I will give it a good go of course but its not as easy as people think.

Thats fine in principle but its harder when you already eat loads and there is only so much you can eat in a day without wanting to through it back up.

People always say to me oh wish I could eat like that and not worry about the weight side of things. Its a nice thing to hear I suppose but I eat and eat and then someone says eat more. Honestly I wish I could but Its easier said than done.

I basically been told to double my intake so eat around 4000 calories a day.

Yes a food lovers dream but its not as easy as it looks. At the moment I eat two meals a day and thena few snacks inbetween.
This gets me to about 2000 calories a days. A normal persons intake easily acheived.

My question is now how on earth will I fit in another 2000 calories?

Thats means trying in some way to basically eat another two meals and two scandi shakes and that will get me to that magic number of 4000 calories.

Now dont get me wrong I like a challenge but this is a challenge I find hard to win. Theres only so much air you can blow into a blown before it pops and thats how I feel.

Anyway i will be trying to up my intake this week and see how I get on. Firstly its two scandi shakes a day which will give me at least an extra 1000 calories a day then it will be just working out the best way to fit in that last but no small intake of another 1000 calories.


I will find a way but I also have to consider im also diabetic so this adds to the challange of trying to balance my sugar levels.

It may seem exciting to be told you can eat more but it is a big issue for someone like me. Its like starting all over again learning your intake and what you need to cover it tablets and insulin wise.

That said it is nice to know I can eat what I like and not worry about my backside getting bigger

Cross infection Its not something new and its going to hurt people who it stops

Ive just read another CFers blog and some other articles and if im honest im quite annoyed by it. Not by the person who has written it as his words are very true but more about why people think this knowledge is new and like a law

Firstly Cross infection in cf is about not mixing with other sufferers. Why you ask because it is very to give one another the bug I or they may have causing one another to get ill. Thats basically the short of it.

Why Am I annoyed you ask?

Its simple for some reason people have this idea that this is a new discovery. ITS NOT and secondly some people with cf are only just becoming aware of this. WHY? And Last but not least

Without being introduced to another cfer by the cf trust my life could have been very different and I may not have been here. And people need this contact I can very well vouch for that


To answer my first annoyance

Im annoyed because its not new.

Yes when I and many others were younger (im talking from being babies up until like early teens) we were all bundled into the same waiting rooms and talking and playing with toys and no doubt wrestling with eachother for fun whilst our parents chatted about how we were all getting on qand how who and when of course along with the usual "stop that" "will you two calm down and keep it quiet" etc. It was all fun and we all know eachother well and still to this day I talk to many and see many people I knew from my early days.

But as time went by and especially when I moved to adult CF wards it was very much known and taught that cross infection was a big no no. Im hoping that im not offending people with this blog and I may have read some things wrong but I knew or was told about cross infection nearly 10 years ago and have been reminded of it every year since by my cf team. May be people are only learning more now because more is known about it and the consequences but why now

We didnt need to learn as a sufferer what the consequences could be surely well for me anyway I was aware enough by just being told cross infection is dangerous. That was warning enough for me what else did I need to know I didnt need to know the ins and outs and the hows and whys I just knew danger

Which I accepted and yeah have ignored to some extent but im not going to wrap myself in bubble wrap and a face mask smoothered in cleansing wipes to be extra safe.

To answer my second annoyance

It seems to me that some cfers are only just beginning to be seperated from other cfers and becoming aware of cross infection. Why? The hospital I attend have made me very aware of it for nearly 10 years since day one of attending adult clinic and each year have reminded me and told me more about it has they have learnt more (Although we still have to share facilities on the cf ward but thats in another blog i wrote previous and its not their fault they do their best) Sharing their knowledge to make us wiser, but they still leave it to us to decide what we do outside of the hospital.

 Its like any sports man in a dangerous sport they know the risk, they learn them and try to avoid the risks but they accept that and understand you cant stop everything 100% and they then choose if they should participate or not.

 Us cf sufferers are and should be given this choice. We should not have it taken away from us.
I understand whilst under hospitals care they keep us all apart to avoid cross infection its part of a cf teams responsibility

BUT

Like my doctor once told me. In here its like prison but we are not law we simply ask you to abide by the rules and we try to police it and most of you when your on our side of the wall help us and stick to those rules, but when you walk out those doors its your life and what we dont know wont hurt us. Life is your own choice not an instruction manual of step by step, 1,2,3.

I can even admit that when I go into hospital we all avoid eachother on ward but people meet in the cafe or like I did with a couple other cfers in hospital last time I was getting treatment we went to Nandos together sat had a meal and a chat but we did air some caution we all asked who was suffering what and if someone had something different they didnt come as they didnt want to risk too much. Risk management. And we could only discuss what we knew we had so we did try to be safe but we also knew it was good for no one to just ignore eachother.

I know some cfers will read the above and be disgusted or disagree but I personally need to talk to other cfers not by facebook or twitter or email but face to face its nice and its lovely to do so and swap stories discuss eachothers wellbeing or not so wellbeing as it may be.


 My last annoyance is a HUGE one for me and whilst I understand cross infection is very bad there must be some way that something can be done so we can talk to other cfers face to face and meet and greet and heres why :-


In my early teens I remember being introduced to another cf sufferer so I had someone older to talk to and relate to and start to understand later years with cf and have someone other than friends and family to discuss things with because we had a great understanding of what we were suffering (And to this day im still great friends with this person)

Infact I needed this introduction my life was in a state and no one could help it or me

What your about to read very few know and I havent told it because I didnt feel I needed to until now

Do you know who set this introduction up?

A member of a CF Charity. YES its true

Shocking to think this would happen nowadays because cross infection is so well known about but 12-15 years ago they helped alot of cf people meet up because it helped people to meet and greet and talk it was like counselling and I for one am very grateful for what they did for me like so many others, it helped me turn my life around at a time in my life when I told my mum and dad I didnt care about it anymore and why should I bother. So they asked for help and the CF trust helped me

The day that man turned up on his motorbike and said "hi im paul" I will never forget because he basically saved me like I cannot explain and I will always feel I owe alot to him.

 If that person from the CF Charity had not offered to help and Paul had not of turned up, made me laugh and talk about things like no one else could understand with complete honesty I would just not bothered and let it kill me, I was at a point in my life where cf got me to my lowest. I really wanted my life over because I had so many questions and no one to give me answers I just thought well no one understands or cares I might aswell not bother.

It makes me cry to say that and im sat here with tears filling my eyes but motorike Paul turned out to be Saint Paul (he infact has his own angel but thats not for me to say).

He talked to me like no one could by answering and telling me so much about cf and what life was like for him suffering with cf and what life looked like in the years I had not yet reached.

He made me understand that it wasnt that people didnt Care, it was that they just couldnt answer my questions.

The cf charity understood me they put me in touch with someone else and he became the person who answered pretty much everything made me turn round and change what I thought and how I cared

That first meet saved alot of me and helped me to which no end of thanks can ever be written by me or expressed in words.

It sounds dramatic (im not looking for drama or tears its just how I can type it) but I wasnt the first and Im not the last

People who struggle with cf and look a hand to lift them off the ground need things like meeting others.

There is no doubt in my mind the cf charities helped many people in this way and I feel like the severity of cross infection and how trying to seperate people and stopping people being able to help in ways they helped me will stop others from getting help and will make people hide, make them dissappear and want to dissolve from view.

There must be a safe way for people to meet, no counselling, no friend or family member could help me at my worst but someone who knew who suffered the same could and others will need that help, it would be disasterious to stop people talking being able to meet.

I want to say that the only reason my friends or family couldnt help was not because they didnt want to they really did but they were just not in my shoes to be able to feel it, to see it, someone else with cf could and others will in the future.

I also need to say that im not saying cross infection is a load of bull or lies it not I know that and i know others who have suffered because of it but what im saying is from reading certain things and talking to people it feels like something is being completely taken away like we only have one option.

Its not we have a choice and if we fall foul of that choice its not like we didnt know the consequences.

Its just sometimes

Risk outweighs rules

complexicity is sometimes needed to help the plain.

Reward outweighs risks

Life is more important than anything else no matter what

Its why people give their lives to save others.

Rules are made to be broken.

Thats why so many have ignored the rules its how the world has developed its just understood the risks along the way the came out successful.

Im sorry if this offends anyone I just dont want people to think we should hide from one another but at the same time more people should know the risks to help both sides work together and find a solution.

In an era where we are always advancing and the world learns so much day by day, why should hiding be the safest way? We should not have to retreat just to be safe we should be able to shake hands say hi and learn a way to do so.


I know the risk but I also know I wont hide to be safe. Im not boring and no one should be forced to be.

Cross infection is serious I want to say that again I know all about that as do many
but we cant step back in a place where for cf the first step forward took nearly ten years.

I will do anything to stop cross infection but i will do anything to talk face to face with a sufferer even if I had to where a space suit to do so or wear a glove just to be able to shake hands.

We know about cross infection so now we should learn how to work with it and not have to hide

Im sorry

Feeling down and it just for no reason I feel that way

Im having a bad day today.

I woke up okay and ready to work and get on with the day

But a few hours on i feel done for.

Im tired, all my joints hurt, my hands are agony, my chest feels like its ripped to shreds.
Life in general is great im just having a bad day in myself. I feel like I sit here at work suffering and im not noticed. I plod on do what I need to take tablets im doing breathing exercise at lunchtime to help my chest and me feel better but Im still not rid of the sniffles and overnight that seems to just attack my chest and by lunch im feeling so sick and bunged up I throw up phelm and have to do exercises to make it feel better

Its no biggy im just having a day of bad feeling lost in my head and my illness.

Its just one of those days. I dont let it stop me but today I find the world of illnesses has choosen me as its victim

Just great or not as i feel like this.

I have no heat in me even though im sat in a heated room with my coat done right up. Im feeling constant affects of wanting to throw up.

Its just THAT day today.

I get this feeling once in a while. Sometimes it lasts hours, other times it last days.
I dont know how to feel now.
Time will tell

I just want to sit somewhere lie down put music on and drift away and see how i feel a few hours later.

I have no worries, no concerns or questions on my mind. My mind is making me feel like this and im letting it. I got some things to look forward to this week but just today is a day of how go away silly thing.

Pain killers are doing nothing but that happens again im used to that. TOnight may have to be sleeping pills despite the fact i slept very well last night.

I have great support and loving people around me but its just a day of me being lost.

Never mind I just thought id have a little nag to my blog

No need to feel sorry for me its just what having cf and diabetes does to you.

My doctor says to me
"its okay no one expects you to smile 24 hours a day"
Your allowed to drop the face and evaluate things even if it upsets you. Its how one learns in life. If we ignored how we felt we would just be plastic.
I have important hospital things coming up and knowing how I feel i may be worrying as im certain I know whats going to be said.

Today is my day when I wont smile I just like to sit blank out and evaluate. Its a great way of me coping without worrying others.

just why we are who we are and why we can always learn something new

In many countries it is a natural assumption that you are just a normal human being so people always say things not knowing.

For me when people say something i find it funny and a sort of compliment as they are never assuming that i have an illness.

I always giggle to myself when Someones says something and I make them feel guilty by dropping the old "its because I have an illness" That usually stops them in their tracks and they turn immediately apologetic, I always laugh and say its okay dont worry im used to it and its nice to know im sort of healthy enough that people dont notice it.

Its made me realise that all of us in life say many things before we think of what we are saying.

Its the way the world has worked for many years and theres no doubt its also got one or two people in trouble in general and in famous circles.

Im of course one of these people that does drop my foot in it regularly.

For example I recently said something to a friend of mine not knowing that her and her husband had recently split up (Head in sand moment and to that person i am very sorry)

But

It is because i am that type of person that im not afraid to say how i feel to stick my neck out and to maybe upset the odd person or two especially when it comes to my health. I am who I am and that wont change.

Im never afraid to ask THAT question
To query that decision

Im a very good observer and if I think somethings not right or heading in the wrong direction with my health Im straight into the doctor saying why and what and how come and if I dont think its working.

Whilst having my last hospital treatment I noticed that something wasnt right I was exhausted, very sick, running fevers and generally very unwell. I had bloods done x rays doctors coming to examine me. After 3 days of this and 4 blood samples taken I finally had enough. I had pretty much worked out what was wrong and explained this to the weekend doctors who seemed to ignore me or think i was being stupid. I refused more blood samples because they still hadnt got the results from the first lot taken so what was the point in taking anymore.

When monday arrived after a weekend of total agony sweating being sick and very ill. The doctors from my cf team came to see me. They firstly apologised for the way I had been treated over the course of the weekend and confirmed as I had been telling them 3 days previously that I had indeed had an allergic reaction to the drugs and they would be stopping them immediately and changing to new drugs.

The doctor explained that the usual signs of a reaction had not happened on this occasion and I had reacted in a way she had not seen from a cfer previously. And finally she thanked me for being strong worded in my response over the previous 3 days as it was of course no1 priority to improve my health not make it worse and I had every right to refuse treatment as I was right in noticing that it was indeed an allergic reaction to the drugs and that a lesson had been learnt from my experience.

I have to say I get on well with the cf team who look after me as there is no BS no lies or sugar coating. I like to be told straight If im doing something wrong or something has gone wrong I dont want lies I just want the straight facts and then hard lines on what to do. I know others who are not so open to the truth and would rather not know and just let the doctors sort them out.

It just shows that sometimes speaking up and not holding back can make a difference.

Its just a shame that some of the people I know with CF put too much trust in their doctors and dont listen to their own bodies and speak up.

My doctors always say to me no one knows how your feeling or how your body is better than yourself


its your life in your hands essentially and if you dont look out for it who else will

People always say no 1 come first.

I also think this is something that the world in general lack. Self respect and a will to look after no1


After all if you dont look out for no1, how else will you be able to look out for others??

Some funny moments that would only happen as a cfer (Well maybe :-) )

I been reading a forum post and someone has asked for any funny cf related stories so I thought Id write a few moments that ive experienced


I was once so ill that on admission that the doctor suspected I had a collapsed lung. Concerned at this the doctor recommended I got for a scan and that during the scan they would pump a hot sticky fluid through my iv line as this shows up on the scan and shows any irregularities.
Well the scan was a disaster and to keep the story short whilst pumping the fluid in my line exploded and I ended covered in this syrup and slightly burnt.

Very angry I returned to the ward to complain about my treatment.

Before I could say anything the nurse saw me coming and said to me "Alrite treacle" I genuinely thought she knew what had happened and went mental. IT turns out none of the staff had been told what had happened it was just a mistimed question.


Having a line put in and taken out is a delicate process and is always done by carefully trained doctors and nurses.

Imagine my disbelief then when once whilst having my iv line removed the community nurse said to me we always take them out slowly so we dont bruise you or worst snap the line and cause major damage. At that moment she ripped the protect plaster off my arm holding the line in place taking everything with it. The look of shock in her face when she looked down and saw it had come flying out was priceless.


The bowel chart always causes a good laugh between people in the know.

On the subject of bowels. People with cf know never to go into the toilet after someone with cf has just come out. Unless your looking to collapse or go all fuzzy eyed id give it time if I were you.


Whilst staying in hospital once my mum had come to visit. After a while mum was due to leave. AS she opened the door to leave my room she quickly slammed it shut and came back to me in shick but bursting with laughter. I realized then that mum had been confronted at my door by a completely naked man just showing off his pride and joy


I was once told by a new cf team member doctor that I had been officially classed as fat due to my bmi. Imagine the shock he would have now if he saw ive lost 4 stone. Whats that officially classed as you idiot.


Whilst on the ward one time me and a couple others decided to sneak out for a nandos. Trying to escape the ward quietly we rushed out. One lad who we hadnt invited as we thought he was asleep came running out shouting where you going wait for me. As he all of a sudden decided to run his head yanked back and he went flying legs up in the air and fell onto the floor. Laughing uncontrolably to one another we noticed he still had his oxygen line attached and had snagged it and got yanked backwards. Word to the wise always check your lines.


And last but not least and my favourite,

I was visited by the local cf phyciatrist whilst in hospital last year she had come to have a chat and find out about me and whats going on in my life.
I had literally only just started talking when she collapsed into the corridor knocking over everything in site. After coming around and being helped to her feet no nurses wanted to talk to me as they thought my life must be in ruins if i had made a phyciatrist collapse. I still get laughed at by my cf team whenever this gets mentioned.

I will post more when i remember them

Strange feelings with CF and misunderstandings. Failures

Im feeling very odd today.

With my health being down and reading various articles on cf and blogs etc etc I am feeling slightly sad in my current situation.

Sad because really its my fault I ended like I am and as ill as I am

But

Feeling strange because is it actually my fault??

I been sat for a few hours thinking about future plans and of course that has mainly involved planning getting fit and being a better me.

I have also thought about why my health went down hill so quick and why I have suffered quite a lot of ill fortune (excuse the phrase) with my health over the past 10-12 months and why despite putting in no less effort than normal im just not recovering aswell and as quick as I used to??!!

I am no doctor and so cannot medically figure it out but it hasnt stopped me trying to explain it.

Im looking for reason to justify why or why not really. I blame myself but feeling down im looking for logic for reasons why it cant be my fault!!

Strange how you feel when you want to be a success but first you need to figure out why failure is happening and what to do to find out why learn from the bad and use that to progress to good.

Im racking my brains and most likely will do for a while to see why? How? But? Time to?

Failure is a hard word for me to swallow its also easy to occur.

Success is easy to spell but harder to complete.

Im not going to say no to getting better obviously

But success will not occur until failure is understood

Why must occur for before how and plan can be introduced.

I have a strong group of people around me involved in me but no amount of smiles or okays stops one feeling down, one questioning life and their own actions.

Many successful people say "Ive had succeeded more in failure than in success. But failure was my path to greater successes"

I certainly have failed more than ive succeeded and will no doubt continue this path.

What im doing now is disecting my failures to find the reasons, the hows to success.

If one cannot accept their own failures how will they cope in success.

I certainly dont want to be ignorant. Im open but only because ive had to be to understand my wrongs my undoings and my lack of understanding.

When I climb to the top and raise my arms my first thought will be remembering how I fell to the bottom previously but the bruises, the scars, will tell me not to make the same mistake twice

Pain is a great showing of failure of my misunderstandings. When that pains gone I wont forget how it started. Past is a great reminder of why we use the past for the present and why we do not wish to revisit that past but move towards the future.


Strange isnt when you try to work yourself out

The latest News from me

Well,

With fitness top of my priority Ive decided to no matter what, to hit it hard and give my body a wake up and poke cf and say politely excuse me while i beat you with a stick

It all starts tomorrow

Im having some custom made running shoes fitted to make sure im as comfortable as possible. This is important why?
A) If I feel comfy in my running shoes (Like I did in my previous nike running shoes) It always make me feel like I can go that bit further as although my lungs are getting a beating my feet want to carry on.
B) When I was younger I had serious problems with my left leg and had two operations to correct it. My left leg is about 10-15mm shorter than my right let. I walk flat footed due to the operations and my hip knee and ankle are all mis-aligned and i tend to walk and run funny which puts extra pressure on my body. Infact im still having problems now more than ever due to my mis-aligned joints and currently have a trapped nerve in my leg so tomorrow will be interesting trying to get fitted but shows how important it is that I get the right fitting.

So having these fitted will make me want to do more because I will be comfy and i do not like to waste money.

I have also decided that in 2013 I want to join a load of nutters and compete in tough Mudder 2013. I am doing this because I want to do something amazing and prove Im still able to be fit and plus the people im doing it with are some of the best friends I could ask for and I know they wont let me fail and I will crawl around or be dragged around by them. Failure will not be an option especially with these people and I do not want to let my friends down who have been kind enough to say yes come join us we promise not to kill you in the process.

Tough mudder means fitness fitness and the need to man up and muscle up (excuse the poor choice of words).

Hence why im getting the shoes fitted and determined to get fit. I will not let CF beat me. Yes its got the better of me lately but not forever and im hoping to start turning that around asap before the winter gets here.

I decidely cracked out the weights I have at home last night and started working on my chest and arms (small steps but its all towards being healthier and stronger). My arms feel like they may depart my body at some point today 


The other part of getting better is my plans to acquire a vest but not just any vest

This vest has done wonders for people with cf and I intend to join others in acquiring one and getting my chest clear.


I finally made contact with the company that produces and sells them. £6,995.00 to purchase. I must be determined to get better thinking of spending that on fabric, velcro, tubes and a pump which is essentially all it is but like I said previously you cant put a price on this sort of thing even if it is expensive.

Im discussing it with the physio when I see her in a couple weeks to see what they say and get measured up for fitting etc. Then putting a financial plan in place to get things moving quickly.

Can I just also take a quick moment to thank many family members and friends for their offer to help me with this and especially to a certain family member who I cannot thank enough in words for the most amazing offer of helping. I cant thank you and everyone enough for your kind words.

 And finally

Ive also just applied to take part in a drug trial for gene therapy. Ive not been accepted yet but have been very keen in my approach and am hopeful of a place. If I get a place I will let you know but its a time consuming process and will take a year to trial the drug. IF not im looking at other trials.

Im desperate to get some new drugs and also most importantly do my bit for CF and try and help in trials and developing future drugs.

All is for the future and to keep myself going and build a more fitter longer term future for me and my body.

I heard an amazing line last night.

In life we will always get knocked down, but no matter, because it is us who choose how we get back up.

Consider these plans my choice, my way of getting back up.

It best work

My annual Review hospital appointments

 I have to attend hospital in a couple weeks for my annual review check up and i thought i would write about it and what it consists of as its not your average doctors appointment.


Once every year or every six months I have to go for a major check over for the doctors to get a fully detailed report on what im doing and more importantly what my bodies doing. You could say its an MOT to check im working correctly and theres no faults that need addressing.

Heres a short list of what the day consists of

Arrive 9am
X ray 9:30am
Ultrasound 10am
Dextra bone scan 10:30am
Lung function 11:15am one hour approx
Body scan (if required or heart check which I had last time) 12:30pm
Lunch 1pm (the cf team like you to have a break and get some food)

1:30pm Physio
2:00pm Dietician
2:30pm Diabetes Doctor/nurse
3pm CF Doctor
3:30pm home time if all goes well.

For a start its a long day and quite boring but as ive been going for so many years its made a little better as you normally already know the people doing x rays and scans so its always friendly and have a chat etc. Ive particularly always enjoyed the ultra sounds as Ive been scanned by the same lady for about 10 years now and she the kindest person ever and is very informative during the scans as I like to ask alot of questions.

So why do we have to do these days of MOT Checks?
Its quite easy it gives my doctor a full in-depth look at what my body is doing and how its coping and helps to plan a forward looking agenda on tablets physio and keeping fit etc and the worst bit is, it shows if I need to come in for treatment (I always hate that discussion).

X-rays are done to show if the chest has any damage to it like scarring of the lungs etc (for the past few years this has increased slowly and my lungs I think are around 30% scarred and therefore not able to repair themselves anymore)

Ultrasounds are done of the liver and kidneys and sometimes the heart to see whats going on and if they are damaged or enlarged or not working proberly. My liver is forever bruised and damaged but nothing to worry about as this is normal with cf sufferers and if its only bruised it can get better but some part is always bruised. The heart is checked for valves and make sure all is okay. I find it weird looking at the screen and seeing things working particularly the heart as you can see the valves working and the blood being pumped through etc but it fascinates me aswell.

Dextra bone scan.
This is done to see how think my bones are to see if they are okay or if they are getting weaker. Im actually classed as osteopenia which isnt quite osteoporosis but its in that sort of bracket, as my bones are weaker than normal levels allow but this has improved over the years (Not that the doctors tell me that I always ask the people doing the scans to tell me even if there not meant to discuss it with me. Last year i had a bone improvement of 17% the biggest improvement they had seen in a while) Although im guessing this year its got worse.

Lung function.
IT is what its says in the title. Its a series of tests to gather how good the lungs are coping if they are getting better or worse and what capacity they are at. This is in my eyes the most important tests as I can tell if I have managed to keep fit and imnprove my lungs or if something is wrong im always the most nervous about these tests and sometimes that makes me do badly during the tests.

Lastly
I visit the cf team, physio dieticians and cf diabetes doctor and finally my cf doctor. This is where they normally tell me off for doing something wrong and say oh we think you need treatment in hospital (which is very likely this time as I just cant seem to get better or improve much at the moment or when i have improved and put weighton and clear my chest I then catch something and that puts me back to square one). I do like these things as I can see whats happening to myself but I also will hate it this year as its going to be the worst annual review ive done so far.

Anyway I just thought id give you an idea of what its like to attend annual reviews and what they are for.

Boring I know but hey thats cf live for you

A Little rant, Why simple things are never simple with CF

Ive had a cold for a few days now and its been a nightmare

I know to most people a cold isnt anything major and comes and goes regularly without any major complications but getting a cold with CF can be a nightmare

Dont get me wrong its not always a nightmare and getting a cold can be pretty simple.

Unfortunately with my run of luck of course getting a cold this week has been a nightmare.

I am no where near good health at the moment but despite set backs and having viral infections over the last few weeks ive been managing okay.

Getting this cold though just doesnt help.

And before any woman says "oh typical man moaning hes got man flu" Im not moaning its just painful annoying and sleeping deprieving

Getting a cold this week hasnt been a total disaster but doesnt help when im trying to get fitter and healthier and keep my health at least at the level it was when I left hospital in August.

It started simple but always ends up complicated.

On Monday someone at work who I was working closely with had a nasty cough and sniffles and obviously I ended up with it. Tuesday I seemed okay if a little bunged up but nothing unusual

Its when I got home tuesday night it really kicked in, my whole face felt full up and my eyes and nose were hurting from my sinuses going mental and I even took my contact lenses out to give my eyes a rest. Again nothing unusual with a cold but where it gets bad is when the cold gets on my chest that then starts my cough off I couldnt lay down to sleep as the cold got to my chest easier and i ended up hardly sleeping, struggling for breath and trying to cough up as much as possible so that it didnt get a chance to hang around on my chest for too long causing more pain

Wednesday morning was a complete no no as I was in so much pain from coughing and head aches I decided not to move and my boss is always good when I phone and Say I need yet another day at home as im unwell I still do as much as I can at home though for work as I always feel like im letting them down

So why is the cold a nightmare with cf?

Well put it this way its started my chest off and thats now given me a nasty cough which has given me head aches and causes me to throw up and inevitably I have started to cough up blood as I been putting so my pressure on my chest/lungs.

I spent most of yesterday doing hypertonic saline, then throwing up because of the hypertonic. Then doing breathing exercises to try and keep my chest clear, then doing pulmozyme/dnase nebuliser to help protect my chest and again try and clear my chest with more physio, constantly drinking fluids as I was dehydrated and keeping wrapped up to help my chest and finally bathing in vix to try and help my sinuses and clear my head. Dont get me wrong its not always like this but as this year hasnt been good for my health so it was always going to happen.

I didnt sleep at all last night as I had a fever and the vix was doing its best to help that along with blowing my nose every two minutes to stop my cough keeping me awake.

Clock watching at 2:45am is not fun knowing the alarm will sound at 6am and again at 6:30am

Well all the hard work yesterday seems to have paid off despite not getting any sleep as the cold doesnt seem too bad today And I managed to go to work okay which is always a plus. I hate missing work.

Anyway rant over

But I hope it shows simple things are never simple for me anyway. But we all try our best so that the simple things like colds and sniffles dont turn into chest infections or worse the Flu.

I just cant imagine how bad it would be if I got the flu. Colds are hard enough to fend off as it is.

Oh and im back on the antibiotics I have to make sure its clear and prevent anything growing from the cold getting to my chest.

I stink of vix but at least the cold is going.

Just a little mutter about certain frustrations and why life is never boring

CF is a tricky little bugger to understand, to learn and to explain.

When someone asks me what is it and how does it affect you my easiest answer is
"Its a genetic disorder which affects my entire body but mostly my lungs and my digestive system. It cause me to grow nasty things on my chest which make me ill and I have to eat plenty to put or keep weight on as my body struggles to maintain weight".

Thats about as short as I can keep it to explain it and normally people just say okay oh dear. Others say "oh how bad can it get?" Again thats tricky to explain without going into detail but I do try to reply normally with "Well I have to visit hospital regularly for check ups, I take about 50-70 tablets a day and I have to go into hospital once or twice a year for iv treatment and do my best to stay fit or I will just keep falling ill" Some people usually stop asking questions but others say "oh is that all it does" Again hard to explain But there is no answer than "If it gets really bad I could die and im not expected to live much past my 40s if im lucky anyway"

That usually stops anymore questions and people apologise for asking.

I dont mind people asking at all infact the more people know the better
A) Because they know that I have something and if I fall ill they know the reason why sort of
B) It opens peoples eyes to something they never knew about and some people dont know it exists.

What frustrates me actually how hard it is to explain it in detail because its just so hard for someone that doesnt know to understand what im saying to compute what it is (Computer says No)

How do you explain a deadly and painful illness to someone and expect them to understand? Its tricky and hard to explain that to someone who doesnt get involved with it.

Ive worked for people that just dont understand and actually think its an excuse and when people think like that its hard to work for them, hard to build trust and actually harder to maintain a good standard of health because you become afraid to tell work you need time off as your not very well so you push yourself at work to try and gain trust and then you end up pushing yourself so bad you actually become more ill and need more time off and that in turn then makes you look bad to people that dont understand. Thats a very big frustration and im sure many of people experience it.

Do you know one company actually accused me of skiving because i had time off work as I was ill? Its hard to believe isnt it but it does happen. I knew from then I was destined to leave there very soon. Which of course I did.

Another company used to say to me you may need to use holiday time to cover extra sick days past your company agreement.

Can I just say not all companies are like that its a small minority luckily

Ive read many stories of people being treated badly at work because their boss doesnt understand.

I should now mention that the company im with are the best ive ever worked for very understanding and couldnt do more for me and on top of that one of my bosses sons has cf and so its very easy to explain things when you have someone around you that completely understands what your going through it lifts so much weight off your shoulders. I really cant thank them enough for whats theyve done for me.

The other frustrating part is Gp's They are of course helpful but dont always know much about your condition so it sometimes strikes me by surprise when they see some of the dosages of tablets that you require to keep your health up. Its not their fault they just dont know but frustrating when your trying to say but I need these tablets quickly otherwise I will get ill, they have to follow the rules.

Its a comfort when you go to your regular doctor and when they trust you they simply say how you feeling what do you need and how long do you think you need it for

My doctor and cf team always say "We listen to you because only you know what your body is doing and how it feels? If only everyday average people could be that open minded things would be so easy.

But life isnt about ease, its about learning, failure, learning to succeed and jumping any hurdles that come your way. It frustrates me how hard life is but I be honest I would be bored if life is simple and thats why I secretly like the life I live because I enjoy complexicity

Life would be boring if we didnt have puzzles to put back together and find the missing pieces


Cf is a world of frustration, of roundabouts and explanations, of stress and constant whys, hows and this is.

It just another part of the mental side of cf that im sure I like many others have to explain deal with and carry on like its all we know. And that is probably the most frustrating thing about cf the frustration it causes.

The unfortunate Harsh reality of being a CF sufferer and knowing other cf sufferers

Unfortunately CF can cause some people to be on this earth and have life for a very short period of time.

I have learnt today that from people I know two people recently died due to the sad reality of Being a suffer.
One was on in teenage years (15 years old I believe) and the other im not sure but around the mid to early twenties.

Its such a shame to learn of these sad losses and may these two people suffer no longer and be able to rest in piece and no longer in pain.

I thought id write this post just to talk about my advancing years with CF and having become friends with more and more sufferers and why I become friends with other sufferers (which other people try not to do for very much understandable reasons)

Im now 26 years old and due to turn 27 years old in a months time. I still find it weird to think I will be 27 soon not because im a sufferer but just because I sometimes forget how old I am (yes roll on the closer to 30 jokes)

Ive had a odd rough year and been a fool on occasions with my health (and learnt hard lessons in doing so I might add) but generally ive had a fairly good run with Cf and trying to be as healthy as I can be to nearly reach 27 years old I feel farily proud of that acheivement and the help ive had over the years to be in as good a shape as I am

I am noticing that this past year has without doubt been my most challenging and difficult health wise and I have lost an edge on keeping healthy and fighting off the many bugs that come with having cf and staying as healthy as possible but its not something im giving up on and am and will be trying my best to get my health better and my fitness up to a better level (I have even said I want to do tough mudder with a few friends in 2013, I must be mad I know) But I wont complain I think its mainly my fault my healths slipped so its my responsibility to get better and healthier.

Keeping fit if possible is very important with Cf but i will keep that for another post and im sure ive mentioned it in previous blogs anyway.

So why am I writing about being friends and knowing other sufferers and getting older.

Well In the last year Ive become friends with some amazing people who suffer from cf and their friends and family around them and I have actually learnt alot about cf and myself from knowing other sufferers (Does that sound Strange?).

I hope this does not sound selfish but the most important thing I have learnt knowing others sufferers is how lucky I am with my health and that I do not suffer as bad as others seem to. I take this as a good thing that im lucky not to suffer more.

The second thing Ive learnt is how different cf can be from person to person, I mean dont get me wrong i knew that no two sufferers can be the same but wow cf is such a wide expanse of the unknown to me and how widely different it can be between different people.

To give you an example Im 26 and I have a friend with cf who is in his thirties and we both have good lifes and have full time jobs which we have had for quite some time (I have worked full time since leaving school and I believe so has he) and for many years he was one of only very few people i knew with cf so I was learning from others but not as much as. Late last year I met someone who was only 17 but never even thought of working because his health just would not cope with it and he thought everyone with cf was the same. Imagine mine and his shock when we sat down and spoke about our two entirely different worlds we live with the same illness or not so as the case seemed to be.

I have another friend who gave up her job as a hairdresser due to all the sprays and additives in the air making her too ill and was adviced by her doctor to stop immediatley and find an alternative job.

I hope your now starting to get even just a little incline in to how different it can be.

Over the past year I have loved getting to know more and more people with cf and learning from them not just how different we all are and how their lives run but I have met some incredibly positive people and their mentality is amazing. The one thing many of us have in common is our positivety and determination to fight for our health and beat cf as best and as long as we can and how that positivety and getting to know others is helping other people who are not so positive.

CF is a very big community when its looked at through simple eyes so many know so many others it great to see people talking and swapping experiences of cf be it negative or positive

The only negative of getting to know people is ive seen more and more of worst bit of cf and others that have not been as lucky as me with their health

This negative can be put in no other way. Im learning more and more of the worst cases of CF

DEATH

or as alot of people saying politely people losing their battle to this cruel illness.

Ive made quite a few friends in the past year and its been nice to know others and chat. Its very comforting when your in hospital and you have people to relate to but I sometimes feel a sense of guilt when im able to walk out and go home and others have not been so lucky and you hear of the horrible news

In the past 6 months 5 people I knew with cf have past away. And im not saying thats because its happening more often than any other previous years I just havent known that many people with cf to have known about others passing away.

Before the last year because I had so few friends with cf I had only known of one person dying of cf since I have been born and that happened 5 years ago. I knew it happened alot but i didnt know enough people to hear of it or have know others who have not been so fortunate

Now I do and its unfortunate that this is the area of cf i seem to have learnt the most about recently.

Does it scare me? Im asked alot.

No not really because if I know its coming i will make sure I dont suffer and get it over with quickly. Not so I have to go through pain but so friends and family dont have to see me go through pain and cause them to suffer because of my ill fortune

Does that sounds awful? Im really only thinking like that with good intentions.

The worst bit for me was I used to think it didnt happen that often but One person inparticular opened my eyes and in no way intentionally to how harsh and quick cf can deal with you.

I met an incredible new friend who i got to know so well and feel such a connection too and especially having a similiar funny (if not to everyones taste) sense of humour. To have spoke to him so often and joked and made stories up with of escape plans and book writing

Not long before he died we were having a chat and our usual jokes (in our unique sense of humour) saying dont worry its raining today your bound to get that transplant today its a known fact pizza delivery boys get killed more in the rain as they are rubbish scooter riders. To which he replied if the rain dont get them Ive just ordered a sniper rifle (Im sorry if our jokes upset anyone)

The next thing I knew he was moved to intensive care and sedated and I was unable to speak to him again. And just like that on the day I had a hospital appointment (at the same hospital he was in) he unfortunately passed away. I had learnt a horrible truth to something I never really paid attention to not because i didnt want to I just never opened my eyes to other sufferers and made friends before.

It wont ever stop me either from being friends with other cfers but it made me think remember how lucky I am but also dont forget others are not so lucky.

It upsets me to know others and hear of peoples passing but I count my lucky stars I am who I am and i wouldnt change me for anything.

When I recently discussed these horrible events with my cf friend who I have known for over ten years he summed it up nicely for me although others may not like what im about to say

He simply said

"Growing up with cf is like growing into old age in a big family or a big group of friends, you may be lucky to live many years but the older you get the more loved ones you know will die and that will only occur more often with time and the more people you know. Then again you could also be one of the first to go either way someone will see another person suffer"

Life has two guarentees.

Your born
You Die

CF just speeds that process up

If I live past the average expected age I will be having a massive party not just to celebrate the age ive reached but the journey ive been on to get there and beat the statistics.

The only real advice I have ever noted down from my doctor is keep up with your health and 40 years old is well within reach. Simple but very much headline grabbing advice

 If its not it will only be my fault.