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??
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