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
Saturday, 29 December 2012
Sunday, 16 December 2012
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"
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"
Thursday, 13 December 2012
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
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
Monday, 3 December 2012
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 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
Wednesday, 21 November 2012
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
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
Friday, 9 November 2012
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?
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?
Thursday, 1 November 2012
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
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
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