Im feeling very odd today.
With my health being down and reading various articles on cf and blogs etc etc I am feeling slightly sad in my current situation.
Sad because really its my fault I ended like I am and as ill as I am
But
Feeling strange because is it actually my fault??
I been sat for a few hours thinking about future plans and of course that has mainly involved planning getting fit and being a better me.
I have also thought about why my health went down hill so quick and why I have suffered quite a lot of ill fortune (excuse the phrase) with my health over the past 10-12 months and why despite putting in no less effort than normal im just not recovering aswell and as quick as I used to??!!
I am no doctor and so cannot medically figure it out but it hasnt stopped me trying to explain it.
Im looking for reason to justify why or why not really. I blame myself but feeling down im looking for logic for reasons why it cant be my fault!!
Strange how you feel when you want to be a success but first you need to figure out why failure is happening and what to do to find out why learn from the bad and use that to progress to good.
Im racking my brains and most likely will do for a while to see why? How? But? Time to?
Failure is a hard word for me to swallow its also easy to occur.
Success is easy to spell but harder to complete.
Im not going to say no to getting better obviously
But success will not occur until failure is understood
Why must occur for before how and plan can be introduced.
I have a strong group of people around me involved in me but no amount of smiles or okays stops one feeling down, one questioning life and their own actions.
Many successful people say "Ive had succeeded more in failure than in success. But failure was my path to greater successes"
I certainly have failed more than ive succeeded and will no doubt continue this path.
What im doing now is disecting my failures to find the reasons, the hows to success.
If one cannot accept their own failures how will they cope in success.
I certainly dont want to be ignorant. Im open but only because ive had to be to understand my wrongs my undoings and my lack of understanding.
When I climb to the top and raise my arms my first thought will be remembering how I fell to the bottom previously but the bruises, the scars, will tell me not to make the same mistake twice
Pain is a great showing of failure of my misunderstandings. When that pains gone I wont forget how it started. Past is a great reminder of why we use the past for the present and why we do not wish to revisit that past but move towards the future.
Strange isnt when you try to work yourself out
Friday 28 September 2012
The latest News from me
Well,
With fitness top of my priority Ive decided to no matter what, to hit it hard and give my body a wake up and poke cf and say politely excuse me while i beat you with a stick
It all starts tomorrow
Im having some custom made running shoes fitted to make sure im as comfortable as possible. This is important why?
A) If I feel comfy in my running shoes (Like I did in my previous nike running shoes) It always make me feel like I can go that bit further as although my lungs are getting a beating my feet want to carry on.
B) When I was younger I had serious problems with my left leg and had two operations to correct it. My left leg is about 10-15mm shorter than my right let. I walk flat footed due to the operations and my hip knee and ankle are all mis-aligned and i tend to walk and run funny which puts extra pressure on my body. Infact im still having problems now more than ever due to my mis-aligned joints and currently have a trapped nerve in my leg so tomorrow will be interesting trying to get fitted but shows how important it is that I get the right fitting.
So having these fitted will make me want to do more because I will be comfy and i do not like to waste money.
I have also decided that in 2013 I want to join a load of nutters and compete in tough Mudder 2013. I am doing this because I want to do something amazing and prove Im still able to be fit and plus the people im doing it with are some of the best friends I could ask for and I know they wont let me fail and I will crawl around or be dragged around by them. Failure will not be an option especially with these people and I do not want to let my friends down who have been kind enough to say yes come join us we promise not to kill you in the process.
Tough mudder means fitness fitness and the need to man up and muscle up (excuse the poor choice of words).
Hence why im getting the shoes fitted and determined to get fit. I will not let CF beat me. Yes its got the better of me lately but not forever and im hoping to start turning that around asap before the winter gets here.
I decidely cracked out the weights I have at home last night and started working on my chest and arms (small steps but its all towards being healthier and stronger). My arms feel like they may depart my body at some point today
The other part of getting better is my plans to acquire a vest but not just any vest
This vest has done wonders for people with cf and I intend to join others in acquiring one and getting my chest clear.
I finally made contact with the company that produces and sells them. £6,995.00 to purchase. I must be determined to get better thinking of spending that on fabric, velcro, tubes and a pump which is essentially all it is but like I said previously you cant put a price on this sort of thing even if it is expensive.
Im discussing it with the physio when I see her in a couple weeks to see what they say and get measured up for fitting etc. Then putting a financial plan in place to get things moving quickly.
Can I just also take a quick moment to thank many family members and friends for their offer to help me with this and especially to a certain family member who I cannot thank enough in words for the most amazing offer of helping. I cant thank you and everyone enough for your kind words.
And finally
Ive also just applied to take part in a drug trial for gene therapy. Ive not been accepted yet but have been very keen in my approach and am hopeful of a place. If I get a place I will let you know but its a time consuming process and will take a year to trial the drug. IF not im looking at other trials.
Im desperate to get some new drugs and also most importantly do my bit for CF and try and help in trials and developing future drugs.
All is for the future and to keep myself going and build a more fitter longer term future for me and my body.
I heard an amazing line last night.
In life we will always get knocked down, but no matter, because it is us who choose how we get back up.
Consider these plans my choice, my way of getting back up.
It best work
With fitness top of my priority Ive decided to no matter what, to hit it hard and give my body a wake up and poke cf and say politely excuse me while i beat you with a stick
It all starts tomorrow
Im having some custom made running shoes fitted to make sure im as comfortable as possible. This is important why?
A) If I feel comfy in my running shoes (Like I did in my previous nike running shoes) It always make me feel like I can go that bit further as although my lungs are getting a beating my feet want to carry on.
B) When I was younger I had serious problems with my left leg and had two operations to correct it. My left leg is about 10-15mm shorter than my right let. I walk flat footed due to the operations and my hip knee and ankle are all mis-aligned and i tend to walk and run funny which puts extra pressure on my body. Infact im still having problems now more than ever due to my mis-aligned joints and currently have a trapped nerve in my leg so tomorrow will be interesting trying to get fitted but shows how important it is that I get the right fitting.
So having these fitted will make me want to do more because I will be comfy and i do not like to waste money.
I have also decided that in 2013 I want to join a load of nutters and compete in tough Mudder 2013. I am doing this because I want to do something amazing and prove Im still able to be fit and plus the people im doing it with are some of the best friends I could ask for and I know they wont let me fail and I will crawl around or be dragged around by them. Failure will not be an option especially with these people and I do not want to let my friends down who have been kind enough to say yes come join us we promise not to kill you in the process.
Tough mudder means fitness fitness and the need to man up and muscle up (excuse the poor choice of words).
Hence why im getting the shoes fitted and determined to get fit. I will not let CF beat me. Yes its got the better of me lately but not forever and im hoping to start turning that around asap before the winter gets here.
I decidely cracked out the weights I have at home last night and started working on my chest and arms (small steps but its all towards being healthier and stronger). My arms feel like they may depart my body at some point today
The other part of getting better is my plans to acquire a vest but not just any vest
This vest has done wonders for people with cf and I intend to join others in acquiring one and getting my chest clear.
I finally made contact with the company that produces and sells them. £6,995.00 to purchase. I must be determined to get better thinking of spending that on fabric, velcro, tubes and a pump which is essentially all it is but like I said previously you cant put a price on this sort of thing even if it is expensive.
Im discussing it with the physio when I see her in a couple weeks to see what they say and get measured up for fitting etc. Then putting a financial plan in place to get things moving quickly.
Can I just also take a quick moment to thank many family members and friends for their offer to help me with this and especially to a certain family member who I cannot thank enough in words for the most amazing offer of helping. I cant thank you and everyone enough for your kind words.
And finally
Ive also just applied to take part in a drug trial for gene therapy. Ive not been accepted yet but have been very keen in my approach and am hopeful of a place. If I get a place I will let you know but its a time consuming process and will take a year to trial the drug. IF not im looking at other trials.
Im desperate to get some new drugs and also most importantly do my bit for CF and try and help in trials and developing future drugs.
All is for the future and to keep myself going and build a more fitter longer term future for me and my body.
I heard an amazing line last night.
In life we will always get knocked down, but no matter, because it is us who choose how we get back up.
Consider these plans my choice, my way of getting back up.
It best work
Thursday 27 September 2012
My annual Review hospital appointments
I have to attend hospital in a couple weeks for my annual review check up and i thought i would write about it and what it consists of as its not your average doctors appointment.
Once every year or every six months I have to go for a major check over for the doctors to get a fully detailed report on what im doing and more importantly what my bodies doing. You could say its an MOT to check im working correctly and theres no faults that need addressing.
Heres a short list of what the day consists of
Arrive 9am
X ray 9:30am
Ultrasound 10am
Dextra bone scan 10:30am
Lung function 11:15am one hour approx
Body scan (if required or heart check which I had last time) 12:30pm
Lunch 1pm (the cf team like you to have a break and get some food)
1:30pm Physio
2:00pm Dietician
2:30pm Diabetes Doctor/nurse
3pm CF Doctor
3:30pm home time if all goes well.
For a start its a long day and quite boring but as ive been going for so many years its made a little better as you normally already know the people doing x rays and scans so its always friendly and have a chat etc. Ive particularly always enjoyed the ultra sounds as Ive been scanned by the same lady for about 10 years now and she the kindest person ever and is very informative during the scans as I like to ask alot of questions.
So why do we have to do these days of MOT Checks?
Its quite easy it gives my doctor a full in-depth look at what my body is doing and how its coping and helps to plan a forward looking agenda on tablets physio and keeping fit etc and the worst bit is, it shows if I need to come in for treatment (I always hate that discussion).
X-rays are done to show if the chest has any damage to it like scarring of the lungs etc (for the past few years this has increased slowly and my lungs I think are around 30% scarred and therefore not able to repair themselves anymore)
Ultrasounds are done of the liver and kidneys and sometimes the heart to see whats going on and if they are damaged or enlarged or not working proberly. My liver is forever bruised and damaged but nothing to worry about as this is normal with cf sufferers and if its only bruised it can get better but some part is always bruised. The heart is checked for valves and make sure all is okay. I find it weird looking at the screen and seeing things working particularly the heart as you can see the valves working and the blood being pumped through etc but it fascinates me aswell.
Dextra bone scan.
This is done to see how think my bones are to see if they are okay or if they are getting weaker. Im actually classed as osteopenia which isnt quite osteoporosis but its in that sort of bracket, as my bones are weaker than normal levels allow but this has improved over the years (Not that the doctors tell me that I always ask the people doing the scans to tell me even if there not meant to discuss it with me. Last year i had a bone improvement of 17% the biggest improvement they had seen in a while) Although im guessing this year its got worse.
Lung function.
IT is what its says in the title. Its a series of tests to gather how good the lungs are coping if they are getting better or worse and what capacity they are at. This is in my eyes the most important tests as I can tell if I have managed to keep fit and imnprove my lungs or if something is wrong im always the most nervous about these tests and sometimes that makes me do badly during the tests.
Lastly
I visit the cf team, physio dieticians and cf diabetes doctor and finally my cf doctor. This is where they normally tell me off for doing something wrong and say oh we think you need treatment in hospital (which is very likely this time as I just cant seem to get better or improve much at the moment or when i have improved and put weighton and clear my chest I then catch something and that puts me back to square one). I do like these things as I can see whats happening to myself but I also will hate it this year as its going to be the worst annual review ive done so far.
Anyway I just thought id give you an idea of what its like to attend annual reviews and what they are for.
Boring I know but hey thats cf live for you
Once every year or every six months I have to go for a major check over for the doctors to get a fully detailed report on what im doing and more importantly what my bodies doing. You could say its an MOT to check im working correctly and theres no faults that need addressing.
Heres a short list of what the day consists of
Arrive 9am
X ray 9:30am
Ultrasound 10am
Dextra bone scan 10:30am
Lung function 11:15am one hour approx
Body scan (if required or heart check which I had last time) 12:30pm
Lunch 1pm (the cf team like you to have a break and get some food)
1:30pm Physio
2:00pm Dietician
2:30pm Diabetes Doctor/nurse
3pm CF Doctor
3:30pm home time if all goes well.
For a start its a long day and quite boring but as ive been going for so many years its made a little better as you normally already know the people doing x rays and scans so its always friendly and have a chat etc. Ive particularly always enjoyed the ultra sounds as Ive been scanned by the same lady for about 10 years now and she the kindest person ever and is very informative during the scans as I like to ask alot of questions.
So why do we have to do these days of MOT Checks?
Its quite easy it gives my doctor a full in-depth look at what my body is doing and how its coping and helps to plan a forward looking agenda on tablets physio and keeping fit etc and the worst bit is, it shows if I need to come in for treatment (I always hate that discussion).
X-rays are done to show if the chest has any damage to it like scarring of the lungs etc (for the past few years this has increased slowly and my lungs I think are around 30% scarred and therefore not able to repair themselves anymore)
Ultrasounds are done of the liver and kidneys and sometimes the heart to see whats going on and if they are damaged or enlarged or not working proberly. My liver is forever bruised and damaged but nothing to worry about as this is normal with cf sufferers and if its only bruised it can get better but some part is always bruised. The heart is checked for valves and make sure all is okay. I find it weird looking at the screen and seeing things working particularly the heart as you can see the valves working and the blood being pumped through etc but it fascinates me aswell.
Dextra bone scan.
This is done to see how think my bones are to see if they are okay or if they are getting weaker. Im actually classed as osteopenia which isnt quite osteoporosis but its in that sort of bracket, as my bones are weaker than normal levels allow but this has improved over the years (Not that the doctors tell me that I always ask the people doing the scans to tell me even if there not meant to discuss it with me. Last year i had a bone improvement of 17% the biggest improvement they had seen in a while) Although im guessing this year its got worse.
Lung function.
IT is what its says in the title. Its a series of tests to gather how good the lungs are coping if they are getting better or worse and what capacity they are at. This is in my eyes the most important tests as I can tell if I have managed to keep fit and imnprove my lungs or if something is wrong im always the most nervous about these tests and sometimes that makes me do badly during the tests.
Lastly
I visit the cf team, physio dieticians and cf diabetes doctor and finally my cf doctor. This is where they normally tell me off for doing something wrong and say oh we think you need treatment in hospital (which is very likely this time as I just cant seem to get better or improve much at the moment or when i have improved and put weighton and clear my chest I then catch something and that puts me back to square one). I do like these things as I can see whats happening to myself but I also will hate it this year as its going to be the worst annual review ive done so far.
Anyway I just thought id give you an idea of what its like to attend annual reviews and what they are for.
Boring I know but hey thats cf live for you
A Little rant, Why simple things are never simple with CF
Ive had a cold for a few days now and its been a nightmare
I know to most people a cold isnt anything major and comes and goes regularly without any major complications but getting a cold with CF can be a nightmare
Dont get me wrong its not always a nightmare and getting a cold can be pretty simple.
Unfortunately with my run of luck of course getting a cold this week has been a nightmare.
I am no where near good health at the moment but despite set backs and having viral infections over the last few weeks ive been managing okay.
Getting this cold though just doesnt help.
And before any woman says "oh typical man moaning hes got man flu" Im not moaning its just painful annoying and sleeping deprieving
Getting a cold this week hasnt been a total disaster but doesnt help when im trying to get fitter and healthier and keep my health at least at the level it was when I left hospital in August.
It started simple but always ends up complicated.
On Monday someone at work who I was working closely with had a nasty cough and sniffles and obviously I ended up with it. Tuesday I seemed okay if a little bunged up but nothing unusual
Its when I got home tuesday night it really kicked in, my whole face felt full up and my eyes and nose were hurting from my sinuses going mental and I even took my contact lenses out to give my eyes a rest. Again nothing unusual with a cold but where it gets bad is when the cold gets on my chest that then starts my cough off I couldnt lay down to sleep as the cold got to my chest easier and i ended up hardly sleeping, struggling for breath and trying to cough up as much as possible so that it didnt get a chance to hang around on my chest for too long causing more pain
Wednesday morning was a complete no no as I was in so much pain from coughing and head aches I decided not to move and my boss is always good when I phone and Say I need yet another day at home as im unwell I still do as much as I can at home though for work as I always feel like im letting them down
So why is the cold a nightmare with cf?
Well put it this way its started my chest off and thats now given me a nasty cough which has given me head aches and causes me to throw up and inevitably I have started to cough up blood as I been putting so my pressure on my chest/lungs.
I spent most of yesterday doing hypertonic saline, then throwing up because of the hypertonic. Then doing breathing exercises to try and keep my chest clear, then doing pulmozyme/dnase nebuliser to help protect my chest and again try and clear my chest with more physio, constantly drinking fluids as I was dehydrated and keeping wrapped up to help my chest and finally bathing in vix to try and help my sinuses and clear my head. Dont get me wrong its not always like this but as this year hasnt been good for my health so it was always going to happen.
I didnt sleep at all last night as I had a fever and the vix was doing its best to help that along with blowing my nose every two minutes to stop my cough keeping me awake.
Clock watching at 2:45am is not fun knowing the alarm will sound at 6am and again at 6:30am
Well all the hard work yesterday seems to have paid off despite not getting any sleep as the cold doesnt seem too bad today And I managed to go to work okay which is always a plus. I hate missing work.
Anyway rant over
But I hope it shows simple things are never simple for me anyway. But we all try our best so that the simple things like colds and sniffles dont turn into chest infections or worse the Flu.
I just cant imagine how bad it would be if I got the flu. Colds are hard enough to fend off as it is.
Oh and im back on the antibiotics I have to make sure its clear and prevent anything growing from the cold getting to my chest.
I stink of vix but at least the cold is going.
I know to most people a cold isnt anything major and comes and goes regularly without any major complications but getting a cold with CF can be a nightmare
Dont get me wrong its not always a nightmare and getting a cold can be pretty simple.
Unfortunately with my run of luck of course getting a cold this week has been a nightmare.
I am no where near good health at the moment but despite set backs and having viral infections over the last few weeks ive been managing okay.
Getting this cold though just doesnt help.
And before any woman says "oh typical man moaning hes got man flu" Im not moaning its just painful annoying and sleeping deprieving
Getting a cold this week hasnt been a total disaster but doesnt help when im trying to get fitter and healthier and keep my health at least at the level it was when I left hospital in August.
It started simple but always ends up complicated.
On Monday someone at work who I was working closely with had a nasty cough and sniffles and obviously I ended up with it. Tuesday I seemed okay if a little bunged up but nothing unusual
Its when I got home tuesday night it really kicked in, my whole face felt full up and my eyes and nose were hurting from my sinuses going mental and I even took my contact lenses out to give my eyes a rest. Again nothing unusual with a cold but where it gets bad is when the cold gets on my chest that then starts my cough off I couldnt lay down to sleep as the cold got to my chest easier and i ended up hardly sleeping, struggling for breath and trying to cough up as much as possible so that it didnt get a chance to hang around on my chest for too long causing more pain
Wednesday morning was a complete no no as I was in so much pain from coughing and head aches I decided not to move and my boss is always good when I phone and Say I need yet another day at home as im unwell I still do as much as I can at home though for work as I always feel like im letting them down
So why is the cold a nightmare with cf?
Well put it this way its started my chest off and thats now given me a nasty cough which has given me head aches and causes me to throw up and inevitably I have started to cough up blood as I been putting so my pressure on my chest/lungs.
I spent most of yesterday doing hypertonic saline, then throwing up because of the hypertonic. Then doing breathing exercises to try and keep my chest clear, then doing pulmozyme/dnase nebuliser to help protect my chest and again try and clear my chest with more physio, constantly drinking fluids as I was dehydrated and keeping wrapped up to help my chest and finally bathing in vix to try and help my sinuses and clear my head. Dont get me wrong its not always like this but as this year hasnt been good for my health so it was always going to happen.
I didnt sleep at all last night as I had a fever and the vix was doing its best to help that along with blowing my nose every two minutes to stop my cough keeping me awake.
Clock watching at 2:45am is not fun knowing the alarm will sound at 6am and again at 6:30am
Well all the hard work yesterday seems to have paid off despite not getting any sleep as the cold doesnt seem too bad today And I managed to go to work okay which is always a plus. I hate missing work.
Anyway rant over
But I hope it shows simple things are never simple for me anyway. But we all try our best so that the simple things like colds and sniffles dont turn into chest infections or worse the Flu.
I just cant imagine how bad it would be if I got the flu. Colds are hard enough to fend off as it is.
Oh and im back on the antibiotics I have to make sure its clear and prevent anything growing from the cold getting to my chest.
I stink of vix but at least the cold is going.
Tuesday 25 September 2012
Just a little mutter about certain frustrations and why life is never boring
CF is a tricky little bugger to understand, to learn and to explain.
When someone asks me what is it and how does it affect you my easiest answer is
"Its a genetic disorder which affects my entire body but mostly my lungs and my digestive system. It cause me to grow nasty things on my chest which make me ill and I have to eat plenty to put or keep weight on as my body struggles to maintain weight".
Thats about as short as I can keep it to explain it and normally people just say okay oh dear. Others say "oh how bad can it get?" Again thats tricky to explain without going into detail but I do try to reply normally with "Well I have to visit hospital regularly for check ups, I take about 50-70 tablets a day and I have to go into hospital once or twice a year for iv treatment and do my best to stay fit or I will just keep falling ill" Some people usually stop asking questions but others say "oh is that all it does" Again hard to explain But there is no answer than "If it gets really bad I could die and im not expected to live much past my 40s if im lucky anyway"
That usually stops anymore questions and people apologise for asking.
I dont mind people asking at all infact the more people know the better
A) Because they know that I have something and if I fall ill they know the reason why sort of
B) It opens peoples eyes to something they never knew about and some people dont know it exists.
What frustrates me actually how hard it is to explain it in detail because its just so hard for someone that doesnt know to understand what im saying to compute what it is (Computer says No)
How do you explain a deadly and painful illness to someone and expect them to understand? Its tricky and hard to explain that to someone who doesnt get involved with it.
Ive worked for people that just dont understand and actually think its an excuse and when people think like that its hard to work for them, hard to build trust and actually harder to maintain a good standard of health because you become afraid to tell work you need time off as your not very well so you push yourself at work to try and gain trust and then you end up pushing yourself so bad you actually become more ill and need more time off and that in turn then makes you look bad to people that dont understand. Thats a very big frustration and im sure many of people experience it.
Do you know one company actually accused me of skiving because i had time off work as I was ill? Its hard to believe isnt it but it does happen. I knew from then I was destined to leave there very soon. Which of course I did.
Another company used to say to me you may need to use holiday time to cover extra sick days past your company agreement.
Can I just say not all companies are like that its a small minority luckily
Ive read many stories of people being treated badly at work because their boss doesnt understand.
I should now mention that the company im with are the best ive ever worked for very understanding and couldnt do more for me and on top of that one of my bosses sons has cf and so its very easy to explain things when you have someone around you that completely understands what your going through it lifts so much weight off your shoulders. I really cant thank them enough for whats theyve done for me.
The other frustrating part is Gp's They are of course helpful but dont always know much about your condition so it sometimes strikes me by surprise when they see some of the dosages of tablets that you require to keep your health up. Its not their fault they just dont know but frustrating when your trying to say but I need these tablets quickly otherwise I will get ill, they have to follow the rules.
Its a comfort when you go to your regular doctor and when they trust you they simply say how you feeling what do you need and how long do you think you need it for
My doctor and cf team always say "We listen to you because only you know what your body is doing and how it feels? If only everyday average people could be that open minded things would be so easy.
But life isnt about ease, its about learning, failure, learning to succeed and jumping any hurdles that come your way. It frustrates me how hard life is but I be honest I would be bored if life is simple and thats why I secretly like the life I live because I enjoy complexicity
Life would be boring if we didnt have puzzles to put back together and find the missing pieces
Cf is a world of frustration, of roundabouts and explanations, of stress and constant whys, hows and this is.
It just another part of the mental side of cf that im sure I like many others have to explain deal with and carry on like its all we know. And that is probably the most frustrating thing about cf the frustration it causes.
When someone asks me what is it and how does it affect you my easiest answer is
"Its a genetic disorder which affects my entire body but mostly my lungs and my digestive system. It cause me to grow nasty things on my chest which make me ill and I have to eat plenty to put or keep weight on as my body struggles to maintain weight".
Thats about as short as I can keep it to explain it and normally people just say okay oh dear. Others say "oh how bad can it get?" Again thats tricky to explain without going into detail but I do try to reply normally with "Well I have to visit hospital regularly for check ups, I take about 50-70 tablets a day and I have to go into hospital once or twice a year for iv treatment and do my best to stay fit or I will just keep falling ill" Some people usually stop asking questions but others say "oh is that all it does" Again hard to explain But there is no answer than "If it gets really bad I could die and im not expected to live much past my 40s if im lucky anyway"
That usually stops anymore questions and people apologise for asking.
I dont mind people asking at all infact the more people know the better
A) Because they know that I have something and if I fall ill they know the reason why sort of
B) It opens peoples eyes to something they never knew about and some people dont know it exists.
What frustrates me actually how hard it is to explain it in detail because its just so hard for someone that doesnt know to understand what im saying to compute what it is (Computer says No)
How do you explain a deadly and painful illness to someone and expect them to understand? Its tricky and hard to explain that to someone who doesnt get involved with it.
Ive worked for people that just dont understand and actually think its an excuse and when people think like that its hard to work for them, hard to build trust and actually harder to maintain a good standard of health because you become afraid to tell work you need time off as your not very well so you push yourself at work to try and gain trust and then you end up pushing yourself so bad you actually become more ill and need more time off and that in turn then makes you look bad to people that dont understand. Thats a very big frustration and im sure many of people experience it.
Do you know one company actually accused me of skiving because i had time off work as I was ill? Its hard to believe isnt it but it does happen. I knew from then I was destined to leave there very soon. Which of course I did.
Another company used to say to me you may need to use holiday time to cover extra sick days past your company agreement.
Can I just say not all companies are like that its a small minority luckily
Ive read many stories of people being treated badly at work because their boss doesnt understand.
I should now mention that the company im with are the best ive ever worked for very understanding and couldnt do more for me and on top of that one of my bosses sons has cf and so its very easy to explain things when you have someone around you that completely understands what your going through it lifts so much weight off your shoulders. I really cant thank them enough for whats theyve done for me.
The other frustrating part is Gp's They are of course helpful but dont always know much about your condition so it sometimes strikes me by surprise when they see some of the dosages of tablets that you require to keep your health up. Its not their fault they just dont know but frustrating when your trying to say but I need these tablets quickly otherwise I will get ill, they have to follow the rules.
Its a comfort when you go to your regular doctor and when they trust you they simply say how you feeling what do you need and how long do you think you need it for
My doctor and cf team always say "We listen to you because only you know what your body is doing and how it feels? If only everyday average people could be that open minded things would be so easy.
But life isnt about ease, its about learning, failure, learning to succeed and jumping any hurdles that come your way. It frustrates me how hard life is but I be honest I would be bored if life is simple and thats why I secretly like the life I live because I enjoy complexicity
Life would be boring if we didnt have puzzles to put back together and find the missing pieces
Cf is a world of frustration, of roundabouts and explanations, of stress and constant whys, hows and this is.
It just another part of the mental side of cf that im sure I like many others have to explain deal with and carry on like its all we know. And that is probably the most frustrating thing about cf the frustration it causes.
Monday 24 September 2012
The unfortunate Harsh reality of being a CF sufferer and knowing other cf sufferers
Unfortunately CF can cause some people to be on this earth and have life for a very short period of time.
I have learnt today that from people I know two people recently died due to the sad reality of Being a suffer.
One was on in teenage years (15 years old I believe) and the other im not sure but around the mid to early twenties.
Its such a shame to learn of these sad losses and may these two people suffer no longer and be able to rest in piece and no longer in pain.
I thought id write this post just to talk about my advancing years with CF and having become friends with more and more sufferers and why I become friends with other sufferers (which other people try not to do for very much understandable reasons)
Im now 26 years old and due to turn 27 years old in a months time. I still find it weird to think I will be 27 soon not because im a sufferer but just because I sometimes forget how old I am (yes roll on the closer to 30 jokes)
Ive had a odd rough year and been a fool on occasions with my health (and learnt hard lessons in doing so I might add) but generally ive had a fairly good run with Cf and trying to be as healthy as I can be to nearly reach 27 years old I feel farily proud of that acheivement and the help ive had over the years to be in as good a shape as I am
I am noticing that this past year has without doubt been my most challenging and difficult health wise and I have lost an edge on keeping healthy and fighting off the many bugs that come with having cf and staying as healthy as possible but its not something im giving up on and am and will be trying my best to get my health better and my fitness up to a better level (I have even said I want to do tough mudder with a few friends in 2013, I must be mad I know) But I wont complain I think its mainly my fault my healths slipped so its my responsibility to get better and healthier.
Keeping fit if possible is very important with Cf but i will keep that for another post and im sure ive mentioned it in previous blogs anyway.
So why am I writing about being friends and knowing other sufferers and getting older.
Well In the last year Ive become friends with some amazing people who suffer from cf and their friends and family around them and I have actually learnt alot about cf and myself from knowing other sufferers (Does that sound Strange?).
I hope this does not sound selfish but the most important thing I have learnt knowing others sufferers is how lucky I am with my health and that I do not suffer as bad as others seem to. I take this as a good thing that im lucky not to suffer more.
The second thing Ive learnt is how different cf can be from person to person, I mean dont get me wrong i knew that no two sufferers can be the same but wow cf is such a wide expanse of the unknown to me and how widely different it can be between different people.
To give you an example Im 26 and I have a friend with cf who is in his thirties and we both have good lifes and have full time jobs which we have had for quite some time (I have worked full time since leaving school and I believe so has he) and for many years he was one of only very few people i knew with cf so I was learning from others but not as much as. Late last year I met someone who was only 17 but never even thought of working because his health just would not cope with it and he thought everyone with cf was the same. Imagine mine and his shock when we sat down and spoke about our two entirely different worlds we live with the same illness or not so as the case seemed to be.
I have another friend who gave up her job as a hairdresser due to all the sprays and additives in the air making her too ill and was adviced by her doctor to stop immediatley and find an alternative job.
I hope your now starting to get even just a little incline in to how different it can be.
Over the past year I have loved getting to know more and more people with cf and learning from them not just how different we all are and how their lives run but I have met some incredibly positive people and their mentality is amazing. The one thing many of us have in common is our positivety and determination to fight for our health and beat cf as best and as long as we can and how that positivety and getting to know others is helping other people who are not so positive.
CF is a very big community when its looked at through simple eyes so many know so many others it great to see people talking and swapping experiences of cf be it negative or positive
The only negative of getting to know people is ive seen more and more of worst bit of cf and others that have not been as lucky as me with their health
This negative can be put in no other way. Im learning more and more of the worst cases of CF
DEATH
or as alot of people saying politely people losing their battle to this cruel illness.
Ive made quite a few friends in the past year and its been nice to know others and chat. Its very comforting when your in hospital and you have people to relate to but I sometimes feel a sense of guilt when im able to walk out and go home and others have not been so lucky and you hear of the horrible news
In the past 6 months 5 people I knew with cf have past away. And im not saying thats because its happening more often than any other previous years I just havent known that many people with cf to have known about others passing away.
Before the last year because I had so few friends with cf I had only known of one person dying of cf since I have been born and that happened 5 years ago. I knew it happened alot but i didnt know enough people to hear of it or have know others who have not been so fortunate
Now I do and its unfortunate that this is the area of cf i seem to have learnt the most about recently.
Does it scare me? Im asked alot.
No not really because if I know its coming i will make sure I dont suffer and get it over with quickly. Not so I have to go through pain but so friends and family dont have to see me go through pain and cause them to suffer because of my ill fortune
Does that sounds awful? Im really only thinking like that with good intentions.
The worst bit for me was I used to think it didnt happen that often but One person inparticular opened my eyes and in no way intentionally to how harsh and quick cf can deal with you.
I met an incredible new friend who i got to know so well and feel such a connection too and especially having a similiar funny (if not to everyones taste) sense of humour. To have spoke to him so often and joked and made stories up with of escape plans and book writing
Not long before he died we were having a chat and our usual jokes (in our unique sense of humour) saying dont worry its raining today your bound to get that transplant today its a known fact pizza delivery boys get killed more in the rain as they are rubbish scooter riders. To which he replied if the rain dont get them Ive just ordered a sniper rifle (Im sorry if our jokes upset anyone)
The next thing I knew he was moved to intensive care and sedated and I was unable to speak to him again. And just like that on the day I had a hospital appointment (at the same hospital he was in) he unfortunately passed away. I had learnt a horrible truth to something I never really paid attention to not because i didnt want to I just never opened my eyes to other sufferers and made friends before.
It wont ever stop me either from being friends with other cfers but it made me think remember how lucky I am but also dont forget others are not so lucky.
It upsets me to know others and hear of peoples passing but I count my lucky stars I am who I am and i wouldnt change me for anything.
When I recently discussed these horrible events with my cf friend who I have known for over ten years he summed it up nicely for me although others may not like what im about to say
He simply said
"Growing up with cf is like growing into old age in a big family or a big group of friends, you may be lucky to live many years but the older you get the more loved ones you know will die and that will only occur more often with time and the more people you know. Then again you could also be one of the first to go either way someone will see another person suffer"
Life has two guarentees.
Your born
You Die
CF just speeds that process up
If I live past the average expected age I will be having a massive party not just to celebrate the age ive reached but the journey ive been on to get there and beat the statistics.
The only real advice I have ever noted down from my doctor is keep up with your health and 40 years old is well within reach. Simple but very much headline grabbing advice
If its not it will only be my fault.
I have learnt today that from people I know two people recently died due to the sad reality of Being a suffer.
One was on in teenage years (15 years old I believe) and the other im not sure but around the mid to early twenties.
Its such a shame to learn of these sad losses and may these two people suffer no longer and be able to rest in piece and no longer in pain.
I thought id write this post just to talk about my advancing years with CF and having become friends with more and more sufferers and why I become friends with other sufferers (which other people try not to do for very much understandable reasons)
Im now 26 years old and due to turn 27 years old in a months time. I still find it weird to think I will be 27 soon not because im a sufferer but just because I sometimes forget how old I am (yes roll on the closer to 30 jokes)
Ive had a odd rough year and been a fool on occasions with my health (and learnt hard lessons in doing so I might add) but generally ive had a fairly good run with Cf and trying to be as healthy as I can be to nearly reach 27 years old I feel farily proud of that acheivement and the help ive had over the years to be in as good a shape as I am
I am noticing that this past year has without doubt been my most challenging and difficult health wise and I have lost an edge on keeping healthy and fighting off the many bugs that come with having cf and staying as healthy as possible but its not something im giving up on and am and will be trying my best to get my health better and my fitness up to a better level (I have even said I want to do tough mudder with a few friends in 2013, I must be mad I know) But I wont complain I think its mainly my fault my healths slipped so its my responsibility to get better and healthier.
Keeping fit if possible is very important with Cf but i will keep that for another post and im sure ive mentioned it in previous blogs anyway.
So why am I writing about being friends and knowing other sufferers and getting older.
Well In the last year Ive become friends with some amazing people who suffer from cf and their friends and family around them and I have actually learnt alot about cf and myself from knowing other sufferers (Does that sound Strange?).
I hope this does not sound selfish but the most important thing I have learnt knowing others sufferers is how lucky I am with my health and that I do not suffer as bad as others seem to. I take this as a good thing that im lucky not to suffer more.
The second thing Ive learnt is how different cf can be from person to person, I mean dont get me wrong i knew that no two sufferers can be the same but wow cf is such a wide expanse of the unknown to me and how widely different it can be between different people.
To give you an example Im 26 and I have a friend with cf who is in his thirties and we both have good lifes and have full time jobs which we have had for quite some time (I have worked full time since leaving school and I believe so has he) and for many years he was one of only very few people i knew with cf so I was learning from others but not as much as. Late last year I met someone who was only 17 but never even thought of working because his health just would not cope with it and he thought everyone with cf was the same. Imagine mine and his shock when we sat down and spoke about our two entirely different worlds we live with the same illness or not so as the case seemed to be.
I have another friend who gave up her job as a hairdresser due to all the sprays and additives in the air making her too ill and was adviced by her doctor to stop immediatley and find an alternative job.
I hope your now starting to get even just a little incline in to how different it can be.
Over the past year I have loved getting to know more and more people with cf and learning from them not just how different we all are and how their lives run but I have met some incredibly positive people and their mentality is amazing. The one thing many of us have in common is our positivety and determination to fight for our health and beat cf as best and as long as we can and how that positivety and getting to know others is helping other people who are not so positive.
CF is a very big community when its looked at through simple eyes so many know so many others it great to see people talking and swapping experiences of cf be it negative or positive
The only negative of getting to know people is ive seen more and more of worst bit of cf and others that have not been as lucky as me with their health
This negative can be put in no other way. Im learning more and more of the worst cases of CF
DEATH
or as alot of people saying politely people losing their battle to this cruel illness.
Ive made quite a few friends in the past year and its been nice to know others and chat. Its very comforting when your in hospital and you have people to relate to but I sometimes feel a sense of guilt when im able to walk out and go home and others have not been so lucky and you hear of the horrible news
In the past 6 months 5 people I knew with cf have past away. And im not saying thats because its happening more often than any other previous years I just havent known that many people with cf to have known about others passing away.
Before the last year because I had so few friends with cf I had only known of one person dying of cf since I have been born and that happened 5 years ago. I knew it happened alot but i didnt know enough people to hear of it or have know others who have not been so fortunate
Now I do and its unfortunate that this is the area of cf i seem to have learnt the most about recently.
Does it scare me? Im asked alot.
No not really because if I know its coming i will make sure I dont suffer and get it over with quickly. Not so I have to go through pain but so friends and family dont have to see me go through pain and cause them to suffer because of my ill fortune
Does that sounds awful? Im really only thinking like that with good intentions.
The worst bit for me was I used to think it didnt happen that often but One person inparticular opened my eyes and in no way intentionally to how harsh and quick cf can deal with you.
I met an incredible new friend who i got to know so well and feel such a connection too and especially having a similiar funny (if not to everyones taste) sense of humour. To have spoke to him so often and joked and made stories up with of escape plans and book writing
Not long before he died we were having a chat and our usual jokes (in our unique sense of humour) saying dont worry its raining today your bound to get that transplant today its a known fact pizza delivery boys get killed more in the rain as they are rubbish scooter riders. To which he replied if the rain dont get them Ive just ordered a sniper rifle (Im sorry if our jokes upset anyone)
The next thing I knew he was moved to intensive care and sedated and I was unable to speak to him again. And just like that on the day I had a hospital appointment (at the same hospital he was in) he unfortunately passed away. I had learnt a horrible truth to something I never really paid attention to not because i didnt want to I just never opened my eyes to other sufferers and made friends before.
It wont ever stop me either from being friends with other cfers but it made me think remember how lucky I am but also dont forget others are not so lucky.
It upsets me to know others and hear of peoples passing but I count my lucky stars I am who I am and i wouldnt change me for anything.
When I recently discussed these horrible events with my cf friend who I have known for over ten years he summed it up nicely for me although others may not like what im about to say
He simply said
"Growing up with cf is like growing into old age in a big family or a big group of friends, you may be lucky to live many years but the older you get the more loved ones you know will die and that will only occur more often with time and the more people you know. Then again you could also be one of the first to go either way someone will see another person suffer"
Life has two guarentees.
Your born
You Die
CF just speeds that process up
If I live past the average expected age I will be having a massive party not just to celebrate the age ive reached but the journey ive been on to get there and beat the statistics.
The only real advice I have ever noted down from my doctor is keep up with your health and 40 years old is well within reach. Simple but very much headline grabbing advice
If its not it will only be my fault.
Friday 21 September 2012
Individual sufferers and the things we have to do to improve our health from self funding
My health hasnt really improved since leaving hospital and may have even got worse due to being ill with a viral infection recently and losing nearly a stone in weight (which im of course trying to get back :-) )
With this in mind i did some research into how I could improve my health and help my chest a bit more.
After many hours and a few phones calls and chats to other sufferers I have found a way i hope to help improve my chest and health and to help clear the mucus building up on my lungs.
Now dont get me wrong im still trying to get fit and i will be going to the gym and swim over the weekend but im also going to try something else at the same time.
Its Called THE VEST
And it is just what the title says.
Its a vest that you put on (its like a bullet proof vest) and it attaches to a pump which pulses air through the vest and that in turn vibrates the vest and that vibrates the chest to help loosen the chest and cause what are called mini coughs in the lungs which loosens mucus and helps move it up and then we are able to cough it up and get rid of it.
Speaking with people who use it its very basic but a huge help with improving lung clearance and hence helping improve your lung capacity and fending off infections and improving your health.
Ive decided to get one and see if it works.
Now here comes the sticking point.
These are not readily available on the NHS unless your cf team has purchased some and is able to loan you one. Unfortunately I know of none that my cf team have so have had to track down the supplier and see how I go about getting one.
The NHS will also not provide me with funding as they cant afford it and most likely say im not ill enough.
So im self funding.
The cost to Buy im told is a MASSIVE £6,000.00 to buy one (Which I dont have unless someone wants to donate me the money?? Anyone no of course not)
So it looks like i have to find another way of getting one of funding this machine I want to use.
I was told by a fellow sufferer on a forum that they rent theirs from the company directly and its the best financial solution for many people.
£100.00 a month Ive been told. Seems reasonable until you realise that
THE NHS ARE NOT PAYING I WILL HAVE TO PAY.
£100 a month out of my own pocket to try and improve my health (and its not gaurenteed to work for me either) people say you cant put a price on your health but i find it sickening
I like many others are starting to pay out of their own pockets to fund keeping themselves healthy keeping themselves alive.
Its Disgraceful
A) That the machine is so expensive to buy or rent considering is basic function and simplicity
B) CF patients are funding their own care
ITs not right but I will be like so many others have decided to paying for it because we need it. ITs not a luxury we are paying for its a necessity.
Its been like this since I can remember.
My first nebuliser I had my mum and dad paid for £500 out of their own pocket because the NHS wouldnt give us one or even lend us one.
Many people with illnesses (not just CF) are in the same boat as me because what price do you put on your life. How many more sacrificies and financial burdens will poorly people have to take on before we all cannot afford it anymore and have to give up care because the NHS wont help.
Something should be done about this.
There are people out there trying to help but they shouldnt have to.
One thing I must mention is how charitable this country and british people are. I mean weve all seen the sums of people the public donate to good causes (Sport relief and children in need to name just a couple) its amazing.
Yesterday I read a story about a lady who has CF and trialled the vest and found a massive improvement using it and her health got better. So did the NHS see it worked and gave her one?? NO
Her friends got together and raised the money between them the whole £6,000.00 and bought the machine for her.
People in this world know no bounds to their generosity and this country and many charities and especially many individuals who self fund, would be lost without peoples willingness to give a few quid and help someone out.
Just a shame the government or NHS dont do more
A friend of mine on twitter tweeted me something very simple but very interesting yesterday
The NHS are willing to fund boob jobs but are not willing to provide someone with life saving care
What more do I need to say??
With this in mind i did some research into how I could improve my health and help my chest a bit more.
After many hours and a few phones calls and chats to other sufferers I have found a way i hope to help improve my chest and health and to help clear the mucus building up on my lungs.
Now dont get me wrong im still trying to get fit and i will be going to the gym and swim over the weekend but im also going to try something else at the same time.
Its Called THE VEST
And it is just what the title says.
Its a vest that you put on (its like a bullet proof vest) and it attaches to a pump which pulses air through the vest and that in turn vibrates the vest and that vibrates the chest to help loosen the chest and cause what are called mini coughs in the lungs which loosens mucus and helps move it up and then we are able to cough it up and get rid of it.
Speaking with people who use it its very basic but a huge help with improving lung clearance and hence helping improve your lung capacity and fending off infections and improving your health.
Ive decided to get one and see if it works.
Now here comes the sticking point.
These are not readily available on the NHS unless your cf team has purchased some and is able to loan you one. Unfortunately I know of none that my cf team have so have had to track down the supplier and see how I go about getting one.
The NHS will also not provide me with funding as they cant afford it and most likely say im not ill enough.
So im self funding.
The cost to Buy im told is a MASSIVE £6,000.00 to buy one (Which I dont have unless someone wants to donate me the money?? Anyone no of course not)
So it looks like i have to find another way of getting one of funding this machine I want to use.
I was told by a fellow sufferer on a forum that they rent theirs from the company directly and its the best financial solution for many people.
£100.00 a month Ive been told. Seems reasonable until you realise that
THE NHS ARE NOT PAYING I WILL HAVE TO PAY.
£100 a month out of my own pocket to try and improve my health (and its not gaurenteed to work for me either) people say you cant put a price on your health but i find it sickening
I like many others are starting to pay out of their own pockets to fund keeping themselves healthy keeping themselves alive.
Its Disgraceful
A) That the machine is so expensive to buy or rent considering is basic function and simplicity
B) CF patients are funding their own care
ITs not right but I will be like so many others have decided to paying for it because we need it. ITs not a luxury we are paying for its a necessity.
Its been like this since I can remember.
My first nebuliser I had my mum and dad paid for £500 out of their own pocket because the NHS wouldnt give us one or even lend us one.
Many people with illnesses (not just CF) are in the same boat as me because what price do you put on your life. How many more sacrificies and financial burdens will poorly people have to take on before we all cannot afford it anymore and have to give up care because the NHS wont help.
Something should be done about this.
There are people out there trying to help but they shouldnt have to.
One thing I must mention is how charitable this country and british people are. I mean weve all seen the sums of people the public donate to good causes (Sport relief and children in need to name just a couple) its amazing.
Yesterday I read a story about a lady who has CF and trialled the vest and found a massive improvement using it and her health got better. So did the NHS see it worked and gave her one?? NO
Her friends got together and raised the money between them the whole £6,000.00 and bought the machine for her.
People in this world know no bounds to their generosity and this country and many charities and especially many individuals who self fund, would be lost without peoples willingness to give a few quid and help someone out.
Just a shame the government or NHS dont do more
A friend of mine on twitter tweeted me something very simple but very interesting yesterday
The NHS are willing to fund boob jobs but are not willing to provide someone with life saving care
What more do I need to say??
Kings college CF unit funding or lack of it
I want to write another post on the NHS and the lack of funding CF units and cf patients as individuals receive. Or do not receive as the general theme seems to show.
I receive good treatment from the CF adult unit in Kings college but due to lack of funding/help from government and NHS they are still a long way off from being able to provide the 100% care they are trying to supply and its not through lack of effort from the doctors physios and nurses that work there.
The reasons being.
The unit has been open for 3 years. Personnel have improved massively through training and weeding out poor performers and hiring people who put 110% in to their jobs.
But the unit itself Facilities and rooms have not changed one bit.
All of us patients on that ward have to share bathrooms and washroom facilities. This is a massive risk to our health and wellbeing.
And we have all had a moan about it trust me on that one and i will admit im probably too honest about it but what price or care do you put on your own life and health
Why you may ask am I moaning about the lack of change and shared facilities?
Its simple CROSS INFECTION. When on ward we are all kept in seperate rooms and asked not to mix with one another due to each individual suffering from different infections and mixing could mean we cath one another bugs and it turns into a nightmare and could cause serious damage to our health or worse.
Unfortunately cross infection is sort of unavoidable at present as we all share bathroom facilities and its very easy to cross infect and frustrating for the team when they have to treat us due to this happening
Now I hear you ask well why dont you all have bathrooms in your own ward rooms and stay compeltely seperated whilst receiving hospital treatment?
Again ask the NHS?
They wont provide funding to improve the ward and no one is told the truth why other than the hospital doesnt have the money waste on it.
The ward staff and cf team have had to raise the money themselves over the past 3 years so that they can pay for the rooms to be refurbed to include ensuite bathrooms which in turn will pretty much stop us from sharing facilities. Great for us and the cf team but embarrassing and ignorant for the NHS. Again we are not the only area that suffers from this many wards have to do the same across the country.
This year though im told enough money has been raised and donated to carry out the work and thats great for all the patients and staff that attend and work there.
No to my individual care and funding moan which I will write in my next blog
I receive good treatment from the CF adult unit in Kings college but due to lack of funding/help from government and NHS they are still a long way off from being able to provide the 100% care they are trying to supply and its not through lack of effort from the doctors physios and nurses that work there.
The reasons being.
The unit has been open for 3 years. Personnel have improved massively through training and weeding out poor performers and hiring people who put 110% in to their jobs.
But the unit itself Facilities and rooms have not changed one bit.
All of us patients on that ward have to share bathrooms and washroom facilities. This is a massive risk to our health and wellbeing.
And we have all had a moan about it trust me on that one and i will admit im probably too honest about it but what price or care do you put on your own life and health
Why you may ask am I moaning about the lack of change and shared facilities?
Its simple CROSS INFECTION. When on ward we are all kept in seperate rooms and asked not to mix with one another due to each individual suffering from different infections and mixing could mean we cath one another bugs and it turns into a nightmare and could cause serious damage to our health or worse.
Unfortunately cross infection is sort of unavoidable at present as we all share bathroom facilities and its very easy to cross infect and frustrating for the team when they have to treat us due to this happening
Now I hear you ask well why dont you all have bathrooms in your own ward rooms and stay compeltely seperated whilst receiving hospital treatment?
Again ask the NHS?
They wont provide funding to improve the ward and no one is told the truth why other than the hospital doesnt have the money waste on it.
The ward staff and cf team have had to raise the money themselves over the past 3 years so that they can pay for the rooms to be refurbed to include ensuite bathrooms which in turn will pretty much stop us from sharing facilities. Great for us and the cf team but embarrassing and ignorant for the NHS. Again we are not the only area that suffers from this many wards have to do the same across the country.
This year though im told enough money has been raised and donated to carry out the work and thats great for all the patients and staff that attend and work there.
No to my individual care and funding moan which I will write in my next blog
Future Health Plans and the NHS care or lack of more like
Now before the title sounds like im being negative about the NHS and the care I receive I am going to clarify what Im going to write about
Im not writing negative about the CF team that care for me not one bit as they do a very good job for me and try their best to help my health with the resources they have and the time available.
What im writing about is the NHS and the lack of funding that they supply to CF units across the country not just to adult units but also child care of cf aswell.
To give you an example The Royal Brompton is to stop performing Heart and lung surgery on children despite being one of the best and most successful units in the country.
This is a massive blow for Cf sufferers and other patients with heart and lung problems.
Why is this happening?? Simple the NHS cant afford to run them anymore. They are not the only unit closing its also happening in leicester and leeds.
The NHS reasons for these closures? They say its because doctors/specialist are spread too thin across the country and want to concentrate them in fewer hospitals.
Rubbish
If they were spread so thin how have these units all over the country been able to successfully complete so many opertations? And have been so innovative in pushing future works and surgery procedures??
The NHS has a lot to answer for. People who may have been waiting for surgery or transplant may now have to travel further for surgery which means more risk to the patient.
The NHS need to man up and explain why other than the BS reason they gave about being spread too thin because its not believable they must think we are all too ignoratn or stupid too notice these rubbish excuses.
Just tell us the truth, your either underfunding because your concentrating on other areas or the Government has told you to cut funding in specific areas.
I currently receive treatment from The Adult CF unit in Kings college and have done for the last 3-4 years. Before that I received my treatment in kings college in a ward where the cf team were basically leant rooms from other wings/units to provide us with care.
It took them years to get a wing of their own and that was unacceptable in many peoples eyes and alot of people tried to help. Its like the NHS ignore CF patients and the cf team had to make their own arrangements and beg other units to spare some bed space to care for us. Again let me say that the cf team are not to blame at all they can only use what they are given and they are severly underfunded and seemingly forgotten by the PCT (Primary care trust) and they have to nudge them to remind them of their and their patients presence.
Its no wonder that CF patients only have a average age expectancy of 31 - 35 in the UK when the NHS seems unwillingly to help or provide anything. In america the CF trust receives huge sums of money through donations and many other avenues and support and patient care seems to be of a high standard as over there through care and medicine advancements their average ages expectancy is 5 years better than in the UK. Why are we 5 years worse off here??
The truth is no one is willing to tell us that truth because it would show too many holes and blame too many government run areas and no one would admit to that short fall and responsibility
The CF Trust in this country do an amazing job to help with medicines and research and if it was not for them and was left to the NHS (Like so many other charities have to deal with) we would all still be expected to die during our child years.
Can I also point out that it is not Only cf that is affected in this way but many different illnesses and charities but im concentrating on CF for obvious reasons.
If it wasnt for charities and fund raising events and the generous british public where would CF be??
Where would any charities be without kind giving people and the donations they receive??
Its not on but due to ignorance from the government and NHS bosses things seemingly will never change
Im not writing negative about the CF team that care for me not one bit as they do a very good job for me and try their best to help my health with the resources they have and the time available.
What im writing about is the NHS and the lack of funding that they supply to CF units across the country not just to adult units but also child care of cf aswell.
To give you an example The Royal Brompton is to stop performing Heart and lung surgery on children despite being one of the best and most successful units in the country.
This is a massive blow for Cf sufferers and other patients with heart and lung problems.
Why is this happening?? Simple the NHS cant afford to run them anymore. They are not the only unit closing its also happening in leicester and leeds.
The NHS reasons for these closures? They say its because doctors/specialist are spread too thin across the country and want to concentrate them in fewer hospitals.
Rubbish
If they were spread so thin how have these units all over the country been able to successfully complete so many opertations? And have been so innovative in pushing future works and surgery procedures??
The NHS has a lot to answer for. People who may have been waiting for surgery or transplant may now have to travel further for surgery which means more risk to the patient.
The NHS need to man up and explain why other than the BS reason they gave about being spread too thin because its not believable they must think we are all too ignoratn or stupid too notice these rubbish excuses.
Just tell us the truth, your either underfunding because your concentrating on other areas or the Government has told you to cut funding in specific areas.
I currently receive treatment from The Adult CF unit in Kings college and have done for the last 3-4 years. Before that I received my treatment in kings college in a ward where the cf team were basically leant rooms from other wings/units to provide us with care.
It took them years to get a wing of their own and that was unacceptable in many peoples eyes and alot of people tried to help. Its like the NHS ignore CF patients and the cf team had to make their own arrangements and beg other units to spare some bed space to care for us. Again let me say that the cf team are not to blame at all they can only use what they are given and they are severly underfunded and seemingly forgotten by the PCT (Primary care trust) and they have to nudge them to remind them of their and their patients presence.
Its no wonder that CF patients only have a average age expectancy of 31 - 35 in the UK when the NHS seems unwillingly to help or provide anything. In america the CF trust receives huge sums of money through donations and many other avenues and support and patient care seems to be of a high standard as over there through care and medicine advancements their average ages expectancy is 5 years better than in the UK. Why are we 5 years worse off here??
The truth is no one is willing to tell us that truth because it would show too many holes and blame too many government run areas and no one would admit to that short fall and responsibility
The CF Trust in this country do an amazing job to help with medicines and research and if it was not for them and was left to the NHS (Like so many other charities have to deal with) we would all still be expected to die during our child years.
Can I also point out that it is not Only cf that is affected in this way but many different illnesses and charities but im concentrating on CF for obvious reasons.
If it wasnt for charities and fund raising events and the generous british public where would CF be??
Where would any charities be without kind giving people and the donations they receive??
Its not on but due to ignorance from the government and NHS bosses things seemingly will never change
Tuesday 18 September 2012
Having to consider my career and working hours
Since early this year my health has been very up and down and more down than up infact pretty much always sort of downward.
Its for various reasons but im now having to consider my future, my current career and my current working hours.
Im not be over dramatic or drastic on this one, im taking my time on deciding my future and my options
The idea is if possible to reduce my work hours to be able to use the spare time to concentrate on getting fit and resting up more to give my body the best chance of improving fending off illness and rebuilding.
Im very unfit at present and rebuilding from losing too much weight and being poorly for far too long and have a plan that I will try to get fit over the next few months then try to keep that fitness and good health over the winter.
The problem is to do with work, not because they are nasty to me or because they treat me badly.
Its simple my body wont let me work 8-10 hours a day, then do daily duties and keep fit and enjoy my life. Physically I cannot do it and because of that I feel lazy. Its not 100% my fault im just getting older and with my illness my body cant cope with it like it used to. I should give up work get rest rebuild and enjoy what I have and I will be doing that at some point
when I was 18 - 21 years old I could work 12 hour days go out and see friends or go out drinking get a few hours sleep and then go back to work the next morning or out and about.
But because my fitness is so low and my staminar isnt as good as it used to be and im getting older and my cf has got worse Its just simply impossible for me to do that anymore.
If im to live longer and fight off cf and stay healthy I need more rest, generally by 8pm most days I want to go to bed sleep, my aim is to get if possible 8-10 hours sleep as I think thats what i need. In actual fact im getting 6-7 hours sleep which is fine for most people but for me its just not enough for my body to recover from the days activities and be ready for the next days activities after 3-4 days of my normal routine im exhausted and sometimes I just cannot get up for work and im very lucky that work is so understanding and I am able to work from home which is great as it gives me a chance to rest and recoup
I know this could be happening at the moment as im too ill at the moment and im rebuilding from a tough 10 months but I dont like it. I love work and my job and am finding it hard to consider working less hours and even worse to think I may have to give up work all together.
I have set myself 6 months to see if I can improve and rebuild whilst still working how I am now. I am positive that I can gain weight and fitness and improve myself to live how I used to, but if after 6 months if hasnt worked and the doctors say look lets talk I will have to be harsh and admit not defeat but that I just need to concentrate less on work and more on myself. It will be hard to do that I have loved working full time in the job im in for the last 10 years and would miss the buzz and fun I have doing my job and working with amazing people and seeing some things that others dont get to see but health comes first and I have to make sure im as healthy as possible if im going to live longer and enjoy the most important things in life and I intend to be around a long time to enjoy those things I can live without work but I cannot live without them
As I was once told we do not live just to work but to live and enjoy the life we were given. Work is just a tool but not a necessity and we can all live without it but we cannot live without our health its physically impossible and you dont need doctors to tell you that
So heres to the next 6 months of hope and improvement.
If not its less work and more rest and health. Come to think of it that doesnt sound that bad does it??!!
Its for various reasons but im now having to consider my future, my current career and my current working hours.
Im not be over dramatic or drastic on this one, im taking my time on deciding my future and my options
The idea is if possible to reduce my work hours to be able to use the spare time to concentrate on getting fit and resting up more to give my body the best chance of improving fending off illness and rebuilding.
Im very unfit at present and rebuilding from losing too much weight and being poorly for far too long and have a plan that I will try to get fit over the next few months then try to keep that fitness and good health over the winter.
The problem is to do with work, not because they are nasty to me or because they treat me badly.
Its simple my body wont let me work 8-10 hours a day, then do daily duties and keep fit and enjoy my life. Physically I cannot do it and because of that I feel lazy. Its not 100% my fault im just getting older and with my illness my body cant cope with it like it used to. I should give up work get rest rebuild and enjoy what I have and I will be doing that at some point
when I was 18 - 21 years old I could work 12 hour days go out and see friends or go out drinking get a few hours sleep and then go back to work the next morning or out and about.
But because my fitness is so low and my staminar isnt as good as it used to be and im getting older and my cf has got worse Its just simply impossible for me to do that anymore.
If im to live longer and fight off cf and stay healthy I need more rest, generally by 8pm most days I want to go to bed sleep, my aim is to get if possible 8-10 hours sleep as I think thats what i need. In actual fact im getting 6-7 hours sleep which is fine for most people but for me its just not enough for my body to recover from the days activities and be ready for the next days activities after 3-4 days of my normal routine im exhausted and sometimes I just cannot get up for work and im very lucky that work is so understanding and I am able to work from home which is great as it gives me a chance to rest and recoup
I know this could be happening at the moment as im too ill at the moment and im rebuilding from a tough 10 months but I dont like it. I love work and my job and am finding it hard to consider working less hours and even worse to think I may have to give up work all together.
I have set myself 6 months to see if I can improve and rebuild whilst still working how I am now. I am positive that I can gain weight and fitness and improve myself to live how I used to, but if after 6 months if hasnt worked and the doctors say look lets talk I will have to be harsh and admit not defeat but that I just need to concentrate less on work and more on myself. It will be hard to do that I have loved working full time in the job im in for the last 10 years and would miss the buzz and fun I have doing my job and working with amazing people and seeing some things that others dont get to see but health comes first and I have to make sure im as healthy as possible if im going to live longer and enjoy the most important things in life and I intend to be around a long time to enjoy those things I can live without work but I cannot live without them
As I was once told we do not live just to work but to live and enjoy the life we were given. Work is just a tool but not a necessity and we can all live without it but we cannot live without our health its physically impossible and you dont need doctors to tell you that
So heres to the next 6 months of hope and improvement.
If not its less work and more rest and health. Come to think of it that doesnt sound that bad does it??!!
Monday 17 September 2012
Weight loss with CF and the affects it has on a sufferer
I thought id write yet another blog today.
This time its about weight loss with CF and the affects and consequences that can happen from losing weight
Being sick these past 12 days and being unable to eat for nearly 10 days is a huge nightmare for someone sufferering from CF.
I have been very ill this year and the past 10 months I have lost a huge chunk of weight. I lost nearly four and a half stone in the space of 4 months. I was 12 stone 4 pounds in october last year (I was a tad too heavy to be honest but nothing to worry about) When I went into hospital in August this year they officially weighed me in at 7 Stone 12 pounds and I had pretty much been that weight for the past 7 months.
Coming out of hospital and realizing the damage it had done and the consequences of that I had a good sit down with myself, told myself off and decided I would change my eatting habits my lack of feedback to sorting my own diabetes out and eat more food (Sensible I might add) and get this weight up.
Well Ive never been a big breakfast person but that was my first priority so I brought several different types of cereal and started to eat ceral every morning and if I got bored I just changed cereal to keep myself interested in eatting it.
This was most likely the biggest change for me food wise and appetite wise and has made the biggest difference to helping me gain weight and I have never been a breakfast person as I dont get an appetite for food until nearing lunch time. I then added more food to what I eat at Lunch and upped my food portions at dinner time.
This wasnt easy but slowly and surely the amount I could consume has now or had increased and I was very happy with the calories I was able to eat.
Now reading that before you think easy its not and took me over a month to change and improve my appetite and getting my body to actually want to eat breakfast in the morning but it had worked.
Before getting this viral infection Im still getting over I had put on a stone in weight and had the best appetite ive had in nearly a year.
Now though im gutted as due to the viral infection ive had over the past 12 days Ive lost that stone pretty much and my appetite I had built up.
Ive got to restart again build it up and prepare my metabolism all over again. Words Cant describe really how hard it is for someone like me to do that. Not because I dont want to but you have to make you body believe that it wants to eat more, to get your stomach expanded to be able to consume more and more often.
Losing that stone in twelve days is months of time wasted.
So now its time to rebuild. That started when I was able to eat my first solid foods again last thursday and will now continue for the future until such time I can get good weight back on.
Im struggling though as i just cannot eat breakfast AGAIN because my body is happy to go without it. I did manage a full english breakfast saturday but it was nearly midday basically lunch time before I wanted it.
Its funny of the body and mind work but unique how with good work it can be munipulated into changing its ways for the good.
Anyway enough rambling I hear you say. Why is weight lose such a bad thing for someone with Cf and diabetes.
Its simple
Every action causes a reaction.
Why because losing weight gives your body nothing to use when your ill. So for instance if your already light on weight and get ill your lose more weight which makes you become more ill (See what I mean about action and re-action).
then when you lose weight It can affect your immune system which in turn means your body is not protected and you become more at risk from picking a bug up getting ill and then losing weight AGAIN.
Losing weight and dropping your immune system then affects your chest so your body wont then try and help you clear the mucus thats already on your lungs which means that builds up more it becomes harder to clear that then makes you ill by getting a chest infection and then you start to lose Weight AGAIN
(Are you starting to see a pattern yet? a re-occurence of actions and reactions)
For me personally when I lose too much weight I have nothing to fuel my body so I have major problems keeping my body temperature up and constant I then get cold and if I dont get warm I get a cold which then gets on my chest gives me a cough I get more tired more ill less able to fend things off and lose weight AGAIN.
So you see if we dont keep at a good weight everything we do has a negative affect and it all comes down to one word WEIGHT. if we dont put it on we get ill and lose it. If we lose it we get more ill and lose more, losing more means we get more ill cant help our bodies at all and lose more weight.
It can be a never ending story and one that unfortunately some people with CF cannot do and some people even ignore and become ill as a consequence lose more and fall too ill for the body to fight anything off at all.
Some are lucky thanks to either determination or normally doctors intervention
But
Some are not so lucky and do not come back from that spiral. (People wont like me saying that but its true)
Im not saying food and weight is our saviour and the only thing we must concentrate on its not of course keeping a clear chest is another obvious area but without it we have no starting point to fight, no barrier to fend things off and more importantly nothing to lose when that time will undoubtly come and we fall ill and our body needs to consume extra to fight with.
One cannot fight against an attack without a weapon to fend them off with
Or some might say
Its like a knife in a gunfight
Or a blunt knife for cutting
This time its about weight loss with CF and the affects and consequences that can happen from losing weight
Being sick these past 12 days and being unable to eat for nearly 10 days is a huge nightmare for someone sufferering from CF.
I have been very ill this year and the past 10 months I have lost a huge chunk of weight. I lost nearly four and a half stone in the space of 4 months. I was 12 stone 4 pounds in october last year (I was a tad too heavy to be honest but nothing to worry about) When I went into hospital in August this year they officially weighed me in at 7 Stone 12 pounds and I had pretty much been that weight for the past 7 months.
Coming out of hospital and realizing the damage it had done and the consequences of that I had a good sit down with myself, told myself off and decided I would change my eatting habits my lack of feedback to sorting my own diabetes out and eat more food (Sensible I might add) and get this weight up.
Well Ive never been a big breakfast person but that was my first priority so I brought several different types of cereal and started to eat ceral every morning and if I got bored I just changed cereal to keep myself interested in eatting it.
This was most likely the biggest change for me food wise and appetite wise and has made the biggest difference to helping me gain weight and I have never been a breakfast person as I dont get an appetite for food until nearing lunch time. I then added more food to what I eat at Lunch and upped my food portions at dinner time.
This wasnt easy but slowly and surely the amount I could consume has now or had increased and I was very happy with the calories I was able to eat.
Now reading that before you think easy its not and took me over a month to change and improve my appetite and getting my body to actually want to eat breakfast in the morning but it had worked.
Before getting this viral infection Im still getting over I had put on a stone in weight and had the best appetite ive had in nearly a year.
Now though im gutted as due to the viral infection ive had over the past 12 days Ive lost that stone pretty much and my appetite I had built up.
Ive got to restart again build it up and prepare my metabolism all over again. Words Cant describe really how hard it is for someone like me to do that. Not because I dont want to but you have to make you body believe that it wants to eat more, to get your stomach expanded to be able to consume more and more often.
Losing that stone in twelve days is months of time wasted.
So now its time to rebuild. That started when I was able to eat my first solid foods again last thursday and will now continue for the future until such time I can get good weight back on.
Im struggling though as i just cannot eat breakfast AGAIN because my body is happy to go without it. I did manage a full english breakfast saturday but it was nearly midday basically lunch time before I wanted it.
Its funny of the body and mind work but unique how with good work it can be munipulated into changing its ways for the good.
Anyway enough rambling I hear you say. Why is weight lose such a bad thing for someone with Cf and diabetes.
Its simple
Every action causes a reaction.
Why because losing weight gives your body nothing to use when your ill. So for instance if your already light on weight and get ill your lose more weight which makes you become more ill (See what I mean about action and re-action).
then when you lose weight It can affect your immune system which in turn means your body is not protected and you become more at risk from picking a bug up getting ill and then losing weight AGAIN.
Losing weight and dropping your immune system then affects your chest so your body wont then try and help you clear the mucus thats already on your lungs which means that builds up more it becomes harder to clear that then makes you ill by getting a chest infection and then you start to lose Weight AGAIN
(Are you starting to see a pattern yet? a re-occurence of actions and reactions)
For me personally when I lose too much weight I have nothing to fuel my body so I have major problems keeping my body temperature up and constant I then get cold and if I dont get warm I get a cold which then gets on my chest gives me a cough I get more tired more ill less able to fend things off and lose weight AGAIN.
So you see if we dont keep at a good weight everything we do has a negative affect and it all comes down to one word WEIGHT. if we dont put it on we get ill and lose it. If we lose it we get more ill and lose more, losing more means we get more ill cant help our bodies at all and lose more weight.
It can be a never ending story and one that unfortunately some people with CF cannot do and some people even ignore and become ill as a consequence lose more and fall too ill for the body to fight anything off at all.
Some are lucky thanks to either determination or normally doctors intervention
But
Some are not so lucky and do not come back from that spiral. (People wont like me saying that but its true)
Im not saying food and weight is our saviour and the only thing we must concentrate on its not of course keeping a clear chest is another obvious area but without it we have no starting point to fight, no barrier to fend things off and more importantly nothing to lose when that time will undoubtly come and we fall ill and our body needs to consume extra to fight with.
One cannot fight against an attack without a weapon to fend them off with
Or some might say
Its like a knife in a gunfight
Or a blunt knife for cutting
The Past 12 days in 1 blog
Well the Title says it all.
In this blog im going to write about my last twelve days in one blog
Simple I hope
Well on Tuesday 10th September I noticed I had an ulcer, I dont get them often but of course taking a bite of food it hurt and I thought oh well Salt water and bongella and all will be well in a day or two.
Oh how wrong that thought turned out to be.
Come wednesday night I couldnt eat or drink anything but forced myself in pain to eat what I could and drink my body weight in water.
I found this odd but the pain in my mouth from ulcers and gums and seemingly my tongue became unbearable by wednesday bedtime.
Thursday morning arrived and I could hardly wake up, let alone walk (my girlfriend said I looked drunk ha ha). I forced a scandi shake down feeling very weak from lack of food and phoned my doctors who said dont come to us go to the dentist first get it checked.
Well one emergency dentist appointment and £17.50 later the dentist simply said. Its just bad ulcers which have inflammed your gums but You need to see a specialist about the ulcers as I can see the pain your in and im phoning your doctor to get you booked in asap as I would like them to check.
I was surprised but went along.
Well sitting in the doctors they then seemed more concerned and said you need to see the specialist asap and im prescribing you anti-biotics and pain killers and pain killing mouthwash as I can see the pain is bad and we need you to keep eatting. Im going to prescribe you flucloxacillin, To which I replied im already on them as a constant to help keep my cough away. This then shocked the doctor who replied oh my how on earth have you got this much pain in your mouth and this infection when these drugs should be killing them off. Im getting you to the specialist asap this seems bad
Oh great I thought just my luck I never do anything by halves.
Anyway not worried I left with my new tablets and mouth wash and thought yes in a day or two i be able to eat.
WRONG.
The mouth wash felt like it was burning and I got more ulcers and more sick and sort of lifeless.
None the less I went to work thrusday. Never got any sleep that night and worked friday thinking yes couple days rest and these tablets should kill it. Ever the optimist me.
Saturday arrived with next to no sleep and the pain I was in oh the pain I have never felt anything like it. Nearly crying my girlfriend thought it best we go to the pharmacy and stock up on the best tablets we can find over the counter.
£10 for numbing mouth wash cricky thats all im saying.
Well I have to say the boots pharmicists in canterbury could not do enough they were brilliant. Stocked up with numbing mouthwash, pain killers and a first for me Codeine I was told by the pharmacist that maybe I should also go to A & E and get checked again as he was unsure on what was going on.
SO A & E we went with me nearly crying. Got checked in by an old friend who jokingly asked is that the only place youve got these things. Not in the mood I didnt hear it and blanked the question.
The doctor saw me and of course said ah yes I can see whats happened you need these tablets but im not sure its going to work, you need to see a dentist.
I thought blooming great so now I can tell no one knows whats going on two doctors and one dentist have been useless.
By this point the pain had become unbearable and I was starting to get a short fuse and was looking to kill something be it a insect person or an object something should feel the pain im in.
I must note by this point I had not eatten solid food for nearly 4 days. A CF sufferer and their dieticians nightmare.
May I mention I had fevers of nearly 40 aswell
Well Can I say Codeine is amazing it knocked me out and numbed me and I slept like a dream saturday night.
Sunday though once it had worn off I was wide awake looking to kill again.
i thought right thats it get me back to the dentist like the doctor said.
I have to say this dentist I saw in A & E is better than the doctors id seen as she did a doctors job.
Shocked at the state of me and my well being and the fact my entire mouth and lips were now covered in sores and ulcers (18 ulcers in total) she said to me did the doctor not do anything or the other dentist you saw.
My simple answer
NOPE
To which she sent me out the room and said I will come back to you in a minute. When I went back in she said
"IF I was you id complain about the two doctors and the dentist you saw previously. The reason why you have so many sores and ulcers and bad gums is because your run down and exhausted because you have a viral infection in your body and its knocking you down and showing its ugly self by causing these sores etc."
I said oh so its a gum infection. No the dentist said, the doctor should have seen you have a complete viral infection im sure of it and as a consequence of being tired youve now got gum desease. Go back to your doctor with this note and get this prescribed.
Feeling very happy but shocked that a Dentist had done what the doctor should of I went home knocked myself out with codeine and ibprofen and thought right if this doctor done get me sorted tomorrow Im going to have to go to the cf unit and get help
Well Monday I still had not eatten I was sick weak tired unstable but made it to my doctors who confirmed yes the dentist is right you have a viral infection and not just a few sores. And the dentist is right you need anti viral drugs. Take these and get more pain killers and go home and dont move or go to work this week.
Feeling relieved I started my new tablets before Id even walked out the door.
Got home and I passed out for most of monday tuesday and wednesday. Ive never slept so much in my life.
Thursday was the first sign that I had improved and was feeling less unstable and weak. And I managed to eat solid proper food (be warned I scoffed loads and was sick and had stomach cramps due to not eatting for nearly 9 days).
Friday arrived and I ate again (Sensible this time) but the sick feeling (and I did throw up once or twice) wasnt going away and I did still have that lightheaded feeling.
I have now rested as best as I could over the weekend whilst enjoying seeing my daughter and getting tickled every two seconds haha.
Monday has now arrived and im still sick but eatting okay and able to stay awake and the wobbly lightheaded feeling is getting better but still there.
I have never had a viral infection and neither do I wish to have another one. The pain and exhaustion let alone the sickness and lightheadedness has really taken it out of me mentally and especially physically.
Im gutted but still not over it. Tonight im hoping to get another weeks drugs to clear whatever remains and start to try and live normally again and eatting to that lost weight back.
In short the last 12 days have been horrendous and my body now needs to repai AGAIN and start over with trying to get fit AGAIN.
I havent told my CF team about any of this yet but I will and im bound to get told off ha ha
Take it from me if you ever feel exhausted get rest dont push your luck or your body will attack you to let you know its not happy.
Well thats it WHAT A NIGHTMARE its been
In this blog im going to write about my last twelve days in one blog
Simple I hope
Well on Tuesday 10th September I noticed I had an ulcer, I dont get them often but of course taking a bite of food it hurt and I thought oh well Salt water and bongella and all will be well in a day or two.
Oh how wrong that thought turned out to be.
Come wednesday night I couldnt eat or drink anything but forced myself in pain to eat what I could and drink my body weight in water.
I found this odd but the pain in my mouth from ulcers and gums and seemingly my tongue became unbearable by wednesday bedtime.
Thursday morning arrived and I could hardly wake up, let alone walk (my girlfriend said I looked drunk ha ha). I forced a scandi shake down feeling very weak from lack of food and phoned my doctors who said dont come to us go to the dentist first get it checked.
Well one emergency dentist appointment and £17.50 later the dentist simply said. Its just bad ulcers which have inflammed your gums but You need to see a specialist about the ulcers as I can see the pain your in and im phoning your doctor to get you booked in asap as I would like them to check.
I was surprised but went along.
Well sitting in the doctors they then seemed more concerned and said you need to see the specialist asap and im prescribing you anti-biotics and pain killers and pain killing mouthwash as I can see the pain is bad and we need you to keep eatting. Im going to prescribe you flucloxacillin, To which I replied im already on them as a constant to help keep my cough away. This then shocked the doctor who replied oh my how on earth have you got this much pain in your mouth and this infection when these drugs should be killing them off. Im getting you to the specialist asap this seems bad
Oh great I thought just my luck I never do anything by halves.
Anyway not worried I left with my new tablets and mouth wash and thought yes in a day or two i be able to eat.
WRONG.
The mouth wash felt like it was burning and I got more ulcers and more sick and sort of lifeless.
None the less I went to work thrusday. Never got any sleep that night and worked friday thinking yes couple days rest and these tablets should kill it. Ever the optimist me.
Saturday arrived with next to no sleep and the pain I was in oh the pain I have never felt anything like it. Nearly crying my girlfriend thought it best we go to the pharmacy and stock up on the best tablets we can find over the counter.
£10 for numbing mouth wash cricky thats all im saying.
Well I have to say the boots pharmicists in canterbury could not do enough they were brilliant. Stocked up with numbing mouthwash, pain killers and a first for me Codeine I was told by the pharmacist that maybe I should also go to A & E and get checked again as he was unsure on what was going on.
SO A & E we went with me nearly crying. Got checked in by an old friend who jokingly asked is that the only place youve got these things. Not in the mood I didnt hear it and blanked the question.
The doctor saw me and of course said ah yes I can see whats happened you need these tablets but im not sure its going to work, you need to see a dentist.
I thought blooming great so now I can tell no one knows whats going on two doctors and one dentist have been useless.
By this point the pain had become unbearable and I was starting to get a short fuse and was looking to kill something be it a insect person or an object something should feel the pain im in.
I must note by this point I had not eatten solid food for nearly 4 days. A CF sufferer and their dieticians nightmare.
May I mention I had fevers of nearly 40 aswell
Well Can I say Codeine is amazing it knocked me out and numbed me and I slept like a dream saturday night.
Sunday though once it had worn off I was wide awake looking to kill again.
i thought right thats it get me back to the dentist like the doctor said.
I have to say this dentist I saw in A & E is better than the doctors id seen as she did a doctors job.
Shocked at the state of me and my well being and the fact my entire mouth and lips were now covered in sores and ulcers (18 ulcers in total) she said to me did the doctor not do anything or the other dentist you saw.
My simple answer
NOPE
To which she sent me out the room and said I will come back to you in a minute. When I went back in she said
"IF I was you id complain about the two doctors and the dentist you saw previously. The reason why you have so many sores and ulcers and bad gums is because your run down and exhausted because you have a viral infection in your body and its knocking you down and showing its ugly self by causing these sores etc."
I said oh so its a gum infection. No the dentist said, the doctor should have seen you have a complete viral infection im sure of it and as a consequence of being tired youve now got gum desease. Go back to your doctor with this note and get this prescribed.
Feeling very happy but shocked that a Dentist had done what the doctor should of I went home knocked myself out with codeine and ibprofen and thought right if this doctor done get me sorted tomorrow Im going to have to go to the cf unit and get help
Well Monday I still had not eatten I was sick weak tired unstable but made it to my doctors who confirmed yes the dentist is right you have a viral infection and not just a few sores. And the dentist is right you need anti viral drugs. Take these and get more pain killers and go home and dont move or go to work this week.
Feeling relieved I started my new tablets before Id even walked out the door.
Got home and I passed out for most of monday tuesday and wednesday. Ive never slept so much in my life.
Thursday was the first sign that I had improved and was feeling less unstable and weak. And I managed to eat solid proper food (be warned I scoffed loads and was sick and had stomach cramps due to not eatting for nearly 9 days).
Friday arrived and I ate again (Sensible this time) but the sick feeling (and I did throw up once or twice) wasnt going away and I did still have that lightheaded feeling.
I have now rested as best as I could over the weekend whilst enjoying seeing my daughter and getting tickled every two seconds haha.
Monday has now arrived and im still sick but eatting okay and able to stay awake and the wobbly lightheaded feeling is getting better but still there.
I have never had a viral infection and neither do I wish to have another one. The pain and exhaustion let alone the sickness and lightheadedness has really taken it out of me mentally and especially physically.
Im gutted but still not over it. Tonight im hoping to get another weeks drugs to clear whatever remains and start to try and live normally again and eatting to that lost weight back.
In short the last 12 days have been horrendous and my body now needs to repai AGAIN and start over with trying to get fit AGAIN.
I havent told my CF team about any of this yet but I will and im bound to get told off ha ha
Take it from me if you ever feel exhausted get rest dont push your luck or your body will attack you to let you know its not happy.
Well thats it WHAT A NIGHTMARE its been
A short few words before alot of words
I was sat rather dazed last friday listening to some music when I started doing the usual when im sat doing nothing. I started to think about life with disabilities and the challanges it brings or sometimes even throws towards us.
I wrote down a few words and this is what I could think of :-
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 think that is my best way of describing fear, looking at it and turning that emotion into determination and doing something about it.
For me no matter what life gives us we have to make the most of it, for some its making the best of a bad situation but we never say it like that because that would sort of sound negative. Well to me it would anyway. For me it simple.
This is the life I have, I know no different to any other life so why not just do what ever is possible with it, do what my body can handle. And if I cant do that because physically I struggle I just do something else. Theres plenty of options, plenty of different turns to go round, roads to go down so why not try whatever you think you can do??!!
I wrote down a few words and this is what I could think of :-
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 think that is my best way of describing fear, looking at it and turning that emotion into determination and doing something about it.
For me no matter what life gives us we have to make the most of it, for some its making the best of a bad situation but we never say it like that because that would sort of sound negative. Well to me it would anyway. For me it simple.
This is the life I have, I know no different to any other life so why not just do what ever is possible with it, do what my body can handle. And if I cant do that because physically I struggle I just do something else. Theres plenty of options, plenty of different turns to go round, roads to go down so why not try whatever you think you can do??!!
Wednesday 5 September 2012
Day to Day Living
Another pointless entry some of you may think lol
Although saying that I still thought id write about living with CF
In simple terms this is how CF and CF related Diabetes has to fit into life
Wake up, take tablets, do pulmozyme, eat, take tablets, take insulin, go to work or out with friends, family or daughter, have lunch, take tablets, take insulin, Finish work or whatever else im doing, drive home, eat, take tablets, take insulin, do hypotonic saline, cough up anything on lungs and do exercises to cough up more, take tablets, do pulmozyme, take insulin, go to bed
I have missed bits out of my personal life or only mentioned them briefly but thats for personal reasons and I wish to protect certain things that are very important to me (im sure you all understand)
Thats how my life basically runs in 4 sentences.
Does that sound simple or alot of work?
To me its all I know as Ive known no different throughout my entire life
Admittedly there is days where im too tired and miss the odd hypotonic or pulmozyme and most likely just go to sleep.
Going to sleep very early is happening alot lately and because of that im not commiting enough time to keeping fit. Its hard to do both sometimes. I have to say the people around me are very understanding which is extrememly lucky.
Its either one or the other at the moment as im no where near my best health wise and most likely wont be until later in the year.
Recovering from a severe chest infection that ive had for 6-8 months, taking a few drugs and a couple days rest wont do it
Its going to take months.
I am forcing myself to do more though which tonight or tomorrow (depending on plans) means going to the gym and trying to complete a 5k run be it running or crawling over the 5k mark (most likely crawling and then crawling home)
Then no doubt that will lead to me heading home exhausted and coughing my lungs up, which in turn will help me clear any nasty mucus from my battered lungs.
Day to day living with CF and CFRD its as simple as that!!
Or is it??
Although saying that I still thought id write about living with CF
In simple terms this is how CF and CF related Diabetes has to fit into life
Wake up, take tablets, do pulmozyme, eat, take tablets, take insulin, go to work or out with friends, family or daughter, have lunch, take tablets, take insulin, Finish work or whatever else im doing, drive home, eat, take tablets, take insulin, do hypotonic saline, cough up anything on lungs and do exercises to cough up more, take tablets, do pulmozyme, take insulin, go to bed
I have missed bits out of my personal life or only mentioned them briefly but thats for personal reasons and I wish to protect certain things that are very important to me (im sure you all understand)
Thats how my life basically runs in 4 sentences.
Does that sound simple or alot of work?
To me its all I know as Ive known no different throughout my entire life
Admittedly there is days where im too tired and miss the odd hypotonic or pulmozyme and most likely just go to sleep.
Going to sleep very early is happening alot lately and because of that im not commiting enough time to keeping fit. Its hard to do both sometimes. I have to say the people around me are very understanding which is extrememly lucky.
Its either one or the other at the moment as im no where near my best health wise and most likely wont be until later in the year.
Recovering from a severe chest infection that ive had for 6-8 months, taking a few drugs and a couple days rest wont do it
Its going to take months.
I am forcing myself to do more though which tonight or tomorrow (depending on plans) means going to the gym and trying to complete a 5k run be it running or crawling over the 5k mark (most likely crawling and then crawling home)
Then no doubt that will lead to me heading home exhausted and coughing my lungs up, which in turn will help me clear any nasty mucus from my battered lungs.
Day to day living with CF and CFRD its as simple as that!!
Or is it??
Tuesday 4 September 2012
CFRD (Cystic fibrosis Related Diabetes)
If suffering from CF wasnt bad enough I also suffer from cystic fibrosis related diabetes.
Its a tricky one as people with normal diabetes are told dont eat this that and the other, whereas people who suffer from CFRD are told to pretty much ignore that.
As we have to basically eat as much as possible to keep weight on my CFRD is basically controlled by Insulin (Novarapid for short term Levermier Long Term) I control it per learning about the foods I eat and what levels of insulin are required with each item of food or meal I eat.
This is time consuming and tricky as it can take a while to learn.
At first I wrote my foods down and what id taken and then if i had to take anymore units to adjust my sugar levels.
Nowadays I can do it from memory but there is still some items I get wrong so constant checking of my sugar level is important for learning and adjusting of units required.
No ones perfect and it can go wrong sometimes. I had a rough period late last year in my life and because of stress and other things my levels went up and down and I found it impossible to control and I admit I may have missed the odd required injection entirely my fault but nothing I didnt learn from
Now though Im back on track and find it okay im still learning after 6 years as I am still eatting new foods and you have to adjust insulin depending on weight (Well I find I have to others may not) and new foods im trying.
In general though i take approx 60-90 units a day of novarapid depending on what and how much i eat and approx 30-34 units of levermier a day
I find that diabetes can be exhausting sometimes especially if I have a good night out drinking (Although I have not done that since March of this year and im noticing the difference) or if im generally exhausted. Then theres the learning curve that comes with exercise.
Exercise and the affects it has on diabetics I have found to have been the hardest thing to learn from. Although I can say that I must be doing well at it as I never had a hypo attack whilst exercising.
Then theres the being poorly with CF side. I always find when im in hospital its extremely hard to control no matter how many units I take and the main reason is simple
IN HOSPITAL DURING IV TREATMENT YOU DO NEXT TO NOTHING for about 10 hours a day you maybe get one hours exercise a day from going gym or for a walk out of hospital.
As a consequence of this so called rest period in hospital diabetes feels like to me like it knows something is going on and just shoots up and trying to bring it down and control it takes will power and a massive boost of self kick up the backside to get up and do stuff.
If you dont get up and move and at least burn some energy in hospital your pay the price for it simple as that.
6 years a sufferer and I can tell you now anyone thats just starting out it takes time and patience to learn but stick with it
Its worth every effort to learn and control it
Its a tricky one as people with normal diabetes are told dont eat this that and the other, whereas people who suffer from CFRD are told to pretty much ignore that.
As we have to basically eat as much as possible to keep weight on my CFRD is basically controlled by Insulin (Novarapid for short term Levermier Long Term) I control it per learning about the foods I eat and what levels of insulin are required with each item of food or meal I eat.
This is time consuming and tricky as it can take a while to learn.
At first I wrote my foods down and what id taken and then if i had to take anymore units to adjust my sugar levels.
Nowadays I can do it from memory but there is still some items I get wrong so constant checking of my sugar level is important for learning and adjusting of units required.
No ones perfect and it can go wrong sometimes. I had a rough period late last year in my life and because of stress and other things my levels went up and down and I found it impossible to control and I admit I may have missed the odd required injection entirely my fault but nothing I didnt learn from
Now though Im back on track and find it okay im still learning after 6 years as I am still eatting new foods and you have to adjust insulin depending on weight (Well I find I have to others may not) and new foods im trying.
In general though i take approx 60-90 units a day of novarapid depending on what and how much i eat and approx 30-34 units of levermier a day
I find that diabetes can be exhausting sometimes especially if I have a good night out drinking (Although I have not done that since March of this year and im noticing the difference) or if im generally exhausted. Then theres the learning curve that comes with exercise.
Exercise and the affects it has on diabetics I have found to have been the hardest thing to learn from. Although I can say that I must be doing well at it as I never had a hypo attack whilst exercising.
Then theres the being poorly with CF side. I always find when im in hospital its extremely hard to control no matter how many units I take and the main reason is simple
IN HOSPITAL DURING IV TREATMENT YOU DO NEXT TO NOTHING for about 10 hours a day you maybe get one hours exercise a day from going gym or for a walk out of hospital.
As a consequence of this so called rest period in hospital diabetes feels like to me like it knows something is going on and just shoots up and trying to bring it down and control it takes will power and a massive boost of self kick up the backside to get up and do stuff.
If you dont get up and move and at least burn some energy in hospital your pay the price for it simple as that.
6 years a sufferer and I can tell you now anyone thats just starting out it takes time and patience to learn but stick with it
Its worth every effort to learn and control it
Just BLUERGH
Well today and the last few days Ive just felt very Bleurgh you know what I mean not with it a bit daydreamy and worst of all constantly tired.
yet when I go to bed even if its very early evening I just dont feel im getting the benefit of it.
I Know im not the only one to live like this but when it happens its not the best feeling in the world.
This is very frustrating when you try to explain it to people as no doubt some people think "oh shut up you idiot" and I can well understand that some people may see it that way. Not everyone is going to understand and agree its just a known fact.
I read a great saying today that a CF Friend of mine tweeted or re-tweeted from a fellow suffer.
It simply said take a straw place in mouth hold nose and try to breathe and your starting to get the idea of how bad Cystic fibrosis can be. I never really thought of it that way as being a sufferer this may sound ignorant but you dont know any difference and you just get on with what life gives you but still its a great way to see how we manage with such little breath.
I once was told that a CF patient who used to live local to me survived for many years with only half a decent functioning lung. Dont quote me but if thats true thats quite remarkable.
Anyway just thought id see if anyone else had a way of describing how it feels to suffer with CF
Till my next post in about 20 minutes
yet when I go to bed even if its very early evening I just dont feel im getting the benefit of it.
I Know im not the only one to live like this but when it happens its not the best feeling in the world.
This is very frustrating when you try to explain it to people as no doubt some people think "oh shut up you idiot" and I can well understand that some people may see it that way. Not everyone is going to understand and agree its just a known fact.
I read a great saying today that a CF Friend of mine tweeted or re-tweeted from a fellow suffer.
It simply said take a straw place in mouth hold nose and try to breathe and your starting to get the idea of how bad Cystic fibrosis can be. I never really thought of it that way as being a sufferer this may sound ignorant but you dont know any difference and you just get on with what life gives you but still its a great way to see how we manage with such little breath.
I once was told that a CF patient who used to live local to me survived for many years with only half a decent functioning lung. Dont quote me but if thats true thats quite remarkable.
Anyway just thought id see if anyone else had a way of describing how it feels to suffer with CF
Till my next post in about 20 minutes
Tablets tablets Tablets and Funny Feelings
Its been a while since I post but not much has happened other than a few issues with some family members but thats not for the blog it would only bore you all!
Im having that weird feeling today that all my aim in life is, is to struggle along take tablets, eat, take tablets, sleep, take tablets, go to work, take tablets
Im having one of thoses never ending feelings of god this is boring and although I have to I cant be bothered.
Dont get me wrong ive not stopped taking any tablets, no far from it ive actually increased my intake due to needing some anti-biotics.
Im just having a funny few days of oh dear I feel like im a walking chemist. Lol
Anyway Rant over just though id put it out there to see how others feel.
Im back to the gym tomorrow after a lay off for exhaustion and stupidly taking Night nurse saturday night which didnt seem to wear off until monday night just as I was heading to bed. Nightmare. Although I did sleep well but dont feel any benefit yet.
My annual review is booked for the 10th October so I need to get fit quick and improve my stupid FEV1 from 2.38 to nearer 3 I havent been so low in years but I cant help think maybe its my fault I let it slip.
I can only erase that feeling by improving and making myself feel better mentally and more importantly physically.
anyway enough of me hope anyone reading this is okay and well
I intend to do a few posts today so sorry for the rush lol
Im having that weird feeling today that all my aim in life is, is to struggle along take tablets, eat, take tablets, sleep, take tablets, go to work, take tablets
Im having one of thoses never ending feelings of god this is boring and although I have to I cant be bothered.
Dont get me wrong ive not stopped taking any tablets, no far from it ive actually increased my intake due to needing some anti-biotics.
Im just having a funny few days of oh dear I feel like im a walking chemist. Lol
Anyway Rant over just though id put it out there to see how others feel.
Im back to the gym tomorrow after a lay off for exhaustion and stupidly taking Night nurse saturday night which didnt seem to wear off until monday night just as I was heading to bed. Nightmare. Although I did sleep well but dont feel any benefit yet.
My annual review is booked for the 10th October so I need to get fit quick and improve my stupid FEV1 from 2.38 to nearer 3 I havent been so low in years but I cant help think maybe its my fault I let it slip.
I can only erase that feeling by improving and making myself feel better mentally and more importantly physically.
anyway enough of me hope anyone reading this is okay and well
I intend to do a few posts today so sorry for the rush lol
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