I just seen my blog and noticed I havent blogged in ages so thought while ive got nothing going on id write a catch up blog.
Not much going on really other than im still struggling to fit 5 nebulisers in a day due to work and the time constraints. (I will not do my nebs at work). I have to do 2 pulmozymes a day 1 hypertonic saline a day and 2 colmycin a day. Seems easy until you realise they need to be spread over time and work lands right in the middle.
A general rule is you need at least 1 hour between nebs. In the evening its not too bad its the morning treatment. To be able to do this I need to get up early but if I do that I dont feel well as i dont get the sleep i need to feel ok. And if I go to bed earlier in the evening to help the morning treatment I cant fit in my nebs needed in the night. What a nightmare.
That said im still doing 4 out of my 5 nebs in the week and of course on days off im doing all of them so im not failing too much.
I have still been going to the gym to keep fit and ive managed to put weight on. Im just a smidge under 9 stone now and I havent been that weight for nearly a year which is great. Although it has taken me a year to put on half a stone despite eatting like a pig. I had two dinners last night to give you an idea of how much im trying to eat.
That said im happy with my weight gain. I just hope it can stay that way over the winter.
+My chest is and i say this very honestly OKAY but it could be so much better although it could be alot worse.
My last visit i was 2.5 FEV1 which is okay but my best in the last year was an average of 2.8 and highest was 3 so ive got so much more to improve.
The pseudo seems to still be on my chest but its slowly going.
I have good days and bad days. I thought last week I had a good clear chest then come the weekend until now I feel so clogged up. Im still giving it plenty to shift it though but im starting to get very impatient.
Im sure if I did some iv drugs in hospital for two weeks it would just shift it very quickly but its only if the doctors and me can see eye to eye and get the right treatment plan in place.
But the ward is soo busy at the moment as everyone seems to be ill (its always the winter that causes the ward a nightmare) there is no room for me at the moment so im just sticking to nebs, tablets and exercise. And that does seem to be doing the best job that it can.
I could say im feeling very low right now because im trying trying but I hate slow progress. Im fighting hard with myself to self motivate but its hard when I cant see the results as best as i should.
Im still puking on a regular basis when doing salt which is starting to get annoying but i just have to keep thinking its good its clearing things, although ive found a way to sometimes stop it happening but it doesnt always work. Just got to keep going.
Im still utterly exhausted and am struggling with exhaustion so much. I thought i was starting to get over it but feel actually ive slipped into worse exhaustion.
I just want to get better but patience is wearing thin.
I will be better one day im sure I just cant see when.
Oh well enough of me moaning.
Ive got the hospital tomorrow to see how im doing. I might surprise myself and the results might be better than im feeling. Im hoping if its good it will give me some motiviation to keep pushing.
If I can see the results coming I'll keep wanting more. I just hope its not got worse as i dont know how id feel for that right now.
This has to go well this week.
If not ive got my little girl over the weekend which always makes me feel great and Love her to pieces and if my health isnt good at the hospital appointment im sure she will make me keep fit by running around all weekend so thats always amazing to know I can keep up with a energy full 5 year old he he :-). Its looking like swimming and kids planet which keeps any parent fit plus we need to start our christmas shopping. Maybe I should cancel hospital tomorrow and rebook monday after my fitness weekend ha ha. Life isnt always bad :-)
Thanks for reading
Wednesday 21 November 2012
Friday 9 November 2012
Back to the Gym Finally and odd thoughts and a change of things
After nearly two weeks of being a complete lazy arse I went to the gym last night. Nothing too bad just 15 mins fast bike ride and weights
I have to say im struggling to lift my arms today as I did try extra weights and im glad i did even though it hurts.
Ive actually missed going to the gym but I had time away from it due to having a nasty cold and to give my new meds time to start working.
My cough has improved alot and my production of phelgm from my chest has slowly decreased which im hoping means the pseudo is getting better, although im taking nothing for granted.
Im finding it a struggle to fit so much into my day now with extra meds and nebs.
Im doing 4 - 5 nebs a day which is a pain when you have work to fit in during the week. Easy at the weekend but time is hard to find when you work every week day.
That said im glad that I seem to feel like the cough is going and production is less even if I am still having to throw up regularly due to the salt nebs which is horrific and makes you gag with every breath but it helps me so im not giving up on it even if i hate sick feeling it gives me.
I have also given up coffee, i was finding that coffee when i drank it was making me very ill. At first i thought maybe its the dairy product but I gave up coffee for two weeks now and find that im not getting the feeling i was so I will be sticking to that in the near future. Although being stupid yesterday I had a costa coffee just to try it out and my theory is right my body seems to hate coffee as i got the sick feeling back and eventually threw it up.
Not sure if its an allergy to coffee or not as I still drink caffeine drinks but certainly coffee is a no go for me. Signs that my body has changed as i used to love coffee so much.
Odd Thoughts
I have been a bit lost in my own head lately thinking about cf and how i have lived my life with it.
Im very glad to have lived how i have and be lucky enough to be as healthy as i am
But
I want more. I want the old healthy me back that I was in my early twenties and late teens. I always feel like im not doing enough to push myself and im very critical of myself im my own worst enemy.
I have plans for next year to be fitter and do some tough challenges and im not giving up on that.
I will acheive what i set out to do.
But i frustrate myself that I do not push enough, do not do more, do not help myself enough. Not going to the gym has really annoyed me, i knew i couldnt at first as i was quite ill but im always ill so i should go no matter what. Thats what I always tell myself
DO MORE
Even if at times i cant I always feel like i need to.
Its odd to think so positive like I do yet still feel like im negative. But I like that feeling its how I live and tell myself to push.
NEVER GIVE UP, DO NOT GIVE IN, MAKE IT FUN, ENJOY THE PAIN AND PUSH ON.
Its strange to have odd feelings but never feel odd inside myself even though im very odd inside, I mean after all I have a life threatening illness but never feel close to death, just smile and step away from it.
I always confront my demons but never need to fight them as I feel im a step ahead of the end.
Would you find it funny to know death is obvious? Yet think nah not yet it seems like a boring end.
Thats how I always feel and thats why im very positive in life. Because giving in seems dull to me and too easy.
Life is a challenge no matter what doing nothing is boring and too easy. If thats how you prefer to live surely theres no point, that is not how to enjoy life.
I enjoy life more because I know of death understand it and maybe infact have learnt to love it.
Why
Because you cant change it and moaning about it only seems stupid.
Why do you think in death we celebrate life? Because its positive and everyone loves good memories right?
I have to say im struggling to lift my arms today as I did try extra weights and im glad i did even though it hurts.
Ive actually missed going to the gym but I had time away from it due to having a nasty cold and to give my new meds time to start working.
My cough has improved alot and my production of phelgm from my chest has slowly decreased which im hoping means the pseudo is getting better, although im taking nothing for granted.
Im finding it a struggle to fit so much into my day now with extra meds and nebs.
Im doing 4 - 5 nebs a day which is a pain when you have work to fit in during the week. Easy at the weekend but time is hard to find when you work every week day.
That said im glad that I seem to feel like the cough is going and production is less even if I am still having to throw up regularly due to the salt nebs which is horrific and makes you gag with every breath but it helps me so im not giving up on it even if i hate sick feeling it gives me.
I have also given up coffee, i was finding that coffee when i drank it was making me very ill. At first i thought maybe its the dairy product but I gave up coffee for two weeks now and find that im not getting the feeling i was so I will be sticking to that in the near future. Although being stupid yesterday I had a costa coffee just to try it out and my theory is right my body seems to hate coffee as i got the sick feeling back and eventually threw it up.
Not sure if its an allergy to coffee or not as I still drink caffeine drinks but certainly coffee is a no go for me. Signs that my body has changed as i used to love coffee so much.
Odd Thoughts
I have been a bit lost in my own head lately thinking about cf and how i have lived my life with it.
Im very glad to have lived how i have and be lucky enough to be as healthy as i am
But
I want more. I want the old healthy me back that I was in my early twenties and late teens. I always feel like im not doing enough to push myself and im very critical of myself im my own worst enemy.
I have plans for next year to be fitter and do some tough challenges and im not giving up on that.
I will acheive what i set out to do.
But i frustrate myself that I do not push enough, do not do more, do not help myself enough. Not going to the gym has really annoyed me, i knew i couldnt at first as i was quite ill but im always ill so i should go no matter what. Thats what I always tell myself
DO MORE
Even if at times i cant I always feel like i need to.
Its odd to think so positive like I do yet still feel like im negative. But I like that feeling its how I live and tell myself to push.
NEVER GIVE UP, DO NOT GIVE IN, MAKE IT FUN, ENJOY THE PAIN AND PUSH ON.
Its strange to have odd feelings but never feel odd inside myself even though im very odd inside, I mean after all I have a life threatening illness but never feel close to death, just smile and step away from it.
I always confront my demons but never need to fight them as I feel im a step ahead of the end.
Would you find it funny to know death is obvious? Yet think nah not yet it seems like a boring end.
Thats how I always feel and thats why im very positive in life. Because giving in seems dull to me and too easy.
Life is a challenge no matter what doing nothing is boring and too easy. If thats how you prefer to live surely theres no point, that is not how to enjoy life.
I enjoy life more because I know of death understand it and maybe infact have learnt to love it.
Why
Because you cant change it and moaning about it only seems stupid.
Why do you think in death we celebrate life? Because its positive and everyone loves good memories right?
Thursday 1 November 2012
My thoughts on transplant
I watched a lovely and emotional programme last night called Love on the transplant list, I watched it on BBC IPlayer but it aired on Tuesday BBC 3 9pm.
It was a nice programme about a couple who were planning to get married but the Lady called Kirstie if my memory serves me right suffered from cystic fibrosis and was on transplant list as her lungs were so badly infected they were beginning to fail and she needed a donr asap.
It was great to watch how CF affected her and her husband and family and she was great in it.
A couple of notes on it though.
The programme seemed to generalise CF too much, gave very little information about what cf is and how it works and not once was it mentioned why her lungs were failing or what infections she was suffering from or the drugs that she was on.
I loved watching it and was great to see she made it in the end and seemed very appreciative and lucky to have got through the worst period of her and her families life.
BUT
This programme will not really help to raise awareness as much as it could of.
It only mentioned few facts about CF
Nothing was mentioned about routines with CF
Or how individual cf can be between each sufferer
Nothing was said why her lungs were failing in detail and
What information was too vague
I dare say that anyone watching that who knows someone with CF proberly sat there watching thinking "why, how, when, who and what" and will no doubt be wanting to ask a sufferer many questions.
I think the BBC should now do a series of Programmes highlighting individuals and follow maybe a dozen different sufferers with varying degrees of symptoms.
This could better highlight in detail how different cf can be from one person to another and how it all affects us mentally and physically and give more information on cf and the different treatments available.
I will be writing to the BBC to see if this is of interest but I dare say that others will have already done so or be doing so.
So what are my thoughts on CF (Someone may be saying im sure)
I have for a long time said I will keep myself healthy as best I can and for as long as I can of course I will.
But im 27 years old now and considering when I was first diagnosed life expectancy wasnt much past teen years, Ive done well to get to where I am and still have fairly good health (despite this year being my worst)
Im glad to say ive never had to use oxygen (my lungs have been well enough to work on their own even when ill) and ive never had to consider life saving treatments.
My stance is that when I do become too ill to function on my own that will be it for me I will not accept a transplant and let someone else have a chance.
I have known this for years and am happy to stick with that because ive led a good life and fulfilled many goals I had. Some others have not even had a chance to start life yet so Id be glad to see someone else get a chance with new lungs.
Im not saying that I will never change my mind but im pretty hard fast on how I feel going into the future when it comes to my health as I see myself living for many years yet hoepfully before transplant is ever mentioned by my doctor.
I have fought with cf my whole life but going on the transplant list and going through the rehabilitation process and not to mention possibly getting really ill before the transplant and not even making it. I dont think I could fight through that and the rehab process.
I find it easier to accept the end and not put others at pain. Once I know the path be prepared and thats it not live with false hope, maybe never get it and let others down plus the months of pain before and after. I dont think I could cope. I find my mental strength is good to life with CF but im unsure i could deal with a transplant.
I asked my partner last night "Does it feel different to watch that programme knowing with with someone with CF" without even thinking she said "yes of course it does"
Not many people are aware of how bad CF can get and I think people who watched that programme now have a different mindset of it and are asking themselves lots of questions.
A CF sufferer is used to pain and suffering and day to day life of CF. People outside see it, learn it, understand it as best they can.
BUT
What most people without CF who have a friend, relative or partner with CF do not realise is how bad it can get and how that can affect them watching someone go through life with CF especially if that cf sufferer is on the transplant list. (That programme last night was brilliant at showing that)
That programme last night showed how it affects people who love someone with CF so well. I have the most admiration for them because it must have been so hard to watch and feel helpless.
And thats what people learn the hardest at the worst times.
When it gets bad all they can do is sit back and watch, wanting to help but in no way being able to
That makes me feel guilty to know that I can make people suffer like that even though its not my fault and thats why I have my stance on transplants and not wanting one. I can deal with pain but can others??
I recently spoke to a friend who dated a cf sufferer but they split because she was unable to handle the daily pressures of it. Her words really make that decision easy to explain.
"I couldnt be with him anymore, I couldnt watch someone I Loved go through that, it was best for me and him to split, I still care but now I dont see the real CF I do not suffer the pain I did watching him go through pain. I couldnt take it knowing that in the end the worst could happen and I could do nothing but watch it happen infront of my own eyes. I needed out"
Now some people will scoff at that and say thats not fair and its painful to leave someone for that reason.
But it is not unfair at all.
Its harder for someone to watch it than it is to suffer with it and I totally respect my friend for wanting to walk away. Why love someone so much when you know it can so cruely be taken away from you?
I respect her more for walking away than I do lying to herself and him thinking that all is going to be well.
I have even said to my partner a few times "If this gets too much and you want to walk away I would absolutely accept that because I understand the suffering it causes"
Being a CF sufferer it doesnt only make you suffer it makes the people you love suffer too
It was a nice programme about a couple who were planning to get married but the Lady called Kirstie if my memory serves me right suffered from cystic fibrosis and was on transplant list as her lungs were so badly infected they were beginning to fail and she needed a donr asap.
It was great to watch how CF affected her and her husband and family and she was great in it.
A couple of notes on it though.
The programme seemed to generalise CF too much, gave very little information about what cf is and how it works and not once was it mentioned why her lungs were failing or what infections she was suffering from or the drugs that she was on.
I loved watching it and was great to see she made it in the end and seemed very appreciative and lucky to have got through the worst period of her and her families life.
BUT
This programme will not really help to raise awareness as much as it could of.
It only mentioned few facts about CF
Nothing was mentioned about routines with CF
Or how individual cf can be between each sufferer
Nothing was said why her lungs were failing in detail and
What information was too vague
I dare say that anyone watching that who knows someone with CF proberly sat there watching thinking "why, how, when, who and what" and will no doubt be wanting to ask a sufferer many questions.
I think the BBC should now do a series of Programmes highlighting individuals and follow maybe a dozen different sufferers with varying degrees of symptoms.
This could better highlight in detail how different cf can be from one person to another and how it all affects us mentally and physically and give more information on cf and the different treatments available.
I will be writing to the BBC to see if this is of interest but I dare say that others will have already done so or be doing so.
So what are my thoughts on CF (Someone may be saying im sure)
I have for a long time said I will keep myself healthy as best I can and for as long as I can of course I will.
But im 27 years old now and considering when I was first diagnosed life expectancy wasnt much past teen years, Ive done well to get to where I am and still have fairly good health (despite this year being my worst)
Im glad to say ive never had to use oxygen (my lungs have been well enough to work on their own even when ill) and ive never had to consider life saving treatments.
My stance is that when I do become too ill to function on my own that will be it for me I will not accept a transplant and let someone else have a chance.
I have known this for years and am happy to stick with that because ive led a good life and fulfilled many goals I had. Some others have not even had a chance to start life yet so Id be glad to see someone else get a chance with new lungs.
Im not saying that I will never change my mind but im pretty hard fast on how I feel going into the future when it comes to my health as I see myself living for many years yet hoepfully before transplant is ever mentioned by my doctor.
I have fought with cf my whole life but going on the transplant list and going through the rehabilitation process and not to mention possibly getting really ill before the transplant and not even making it. I dont think I could fight through that and the rehab process.
I find it easier to accept the end and not put others at pain. Once I know the path be prepared and thats it not live with false hope, maybe never get it and let others down plus the months of pain before and after. I dont think I could cope. I find my mental strength is good to life with CF but im unsure i could deal with a transplant.
I asked my partner last night "Does it feel different to watch that programme knowing with with someone with CF" without even thinking she said "yes of course it does"
Not many people are aware of how bad CF can get and I think people who watched that programme now have a different mindset of it and are asking themselves lots of questions.
A CF sufferer is used to pain and suffering and day to day life of CF. People outside see it, learn it, understand it as best they can.
BUT
What most people without CF who have a friend, relative or partner with CF do not realise is how bad it can get and how that can affect them watching someone go through life with CF especially if that cf sufferer is on the transplant list. (That programme last night was brilliant at showing that)
That programme last night showed how it affects people who love someone with CF so well. I have the most admiration for them because it must have been so hard to watch and feel helpless.
And thats what people learn the hardest at the worst times.
When it gets bad all they can do is sit back and watch, wanting to help but in no way being able to
That makes me feel guilty to know that I can make people suffer like that even though its not my fault and thats why I have my stance on transplants and not wanting one. I can deal with pain but can others??
I recently spoke to a friend who dated a cf sufferer but they split because she was unable to handle the daily pressures of it. Her words really make that decision easy to explain.
"I couldnt be with him anymore, I couldnt watch someone I Loved go through that, it was best for me and him to split, I still care but now I dont see the real CF I do not suffer the pain I did watching him go through pain. I couldnt take it knowing that in the end the worst could happen and I could do nothing but watch it happen infront of my own eyes. I needed out"
Now some people will scoff at that and say thats not fair and its painful to leave someone for that reason.
But it is not unfair at all.
Its harder for someone to watch it than it is to suffer with it and I totally respect my friend for wanting to walk away. Why love someone so much when you know it can so cruely be taken away from you?
I respect her more for walking away than I do lying to herself and him thinking that all is going to be well.
I have even said to my partner a few times "If this gets too much and you want to walk away I would absolutely accept that because I understand the suffering it causes"
Being a CF sufferer it doesnt only make you suffer it makes the people you love suffer too
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