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??
Friday, 21 September 2012
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??!!
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