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?
Monday 29 October 2012
Tuesday 23 October 2012
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
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
Friday 19 October 2012
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
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
Tuesday 16 October 2012
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
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
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
Thursday 11 October 2012
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
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
Wednesday 3 October 2012
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.
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.
Monday 1 October 2012
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??
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
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
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