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