Sorry in advance if this offends anyone.... It shouldn't, but just in case....
As anyone who has read the "about me" part of this blog you know that I have Cystic Fibrosis and most people reading this, most likely knows what that is and what it entails everyday.
Now I don't know many other people who also have CF, but I've met a few people recently on the CF forums. That has been nice to finally talk after so long of not talking to anyone else who can share to the same degree what having CF can feel like emotional, mentally, and physically. It's something that can't be fully understood unless you are a sufferer of it. I don't want that to upset anyone who reads this who I talk to who don't have CF but know me, so I'm sorry....
A few people I've met on the forums recently, know some other people who are far worse than the degree I am right now, and some of them people have just got onto the organ donor list to receive new lungs, congratulations to them, even if I don't know them.
Before I signed up to the CF forums my view of CF for me personally was that it was a hassle yes, but it was a case of just deal and get on with it. That still is the case, however the forums have made me realise the worse degree of CF for example something like 16% lung function and forever getting "false calls" about receiveing those new lungs or that shiny new liver, and always being let down at the last minute.
Its been a bit of a reality check for me if I'm perfectly honest. I didn't use to think of my CF ever getting that bad, and it still might not, I could be lucky. But its been shocking and also upsetting to have it shown to be that this disease does kill. I already knew that of course, but without seeing is to not believe really. I didn't want to accept to myself that this COULD one day kill me, no matter how compliant I am with physio and general care everyday.
I'm glad I've had the reality check as its made me see sense for myself before its too late. Yes I will probably still complain to some people when I am on IV's again, and I will still grumble to myself about having to take so many pills everyday and always having to do physio and nebulisers etc etc, but I'll be thinking all the time of the people who have lost the battle against CF, and I will still keep plodding along and fighting for me and for them, and hoping for a cure one day.
Even though I didn't know the people personally like some of the other people did, but I hope they are resting and breathing easy now. The fight that they put up against CF, gives me the motivation to keep on going and to take care of myself everyday....
Breath Easy everyone....
xx
Tuesday 24 November 2009
Sunday 22 November 2009
Number one question on my mind right now....
I've heard a question been passed around lately:
If you could be re-born, would you choose to have CF, whilst knowing how it feels and everything?"
My answer would be at this moment in time, yes I would still choose to have CF.
Even with all the crap it brings daily, and the pains and hassles it can cause, I think I'd be a total different person if I didnt have CF. I dont think I would have gotten as far as I am with "life" as I am right now. Getting into University was a massive leap for me, especially as I didnt think that I would be accepted. I cried my eyes out with happiness when I read my acceptance letter for University. Although I said I was sick of all the "hurdle climbing" I can honestly say that I wouldn't change having CF.... However I've not been through some things that others with this disease have been through, such as a transplant.
If I had the chance to live a day in the life of someone who was totally healthy and then went back to having CF I would be upset to begin with I think, but once I realised again how much CF has an impact in a good way aswell as bad on my life I think I would be okay again.... I say good as it can be a motivation havin CF, in the way that it can force you to succeed as there is a life expectancy you dont know if your going to reach and excced that "limit" or if your not going to even come close, you just dont know really, and so I think that it can be a motivation to get out of bed (unless your having a particualrly bad day) and to do everything to the best of your abilities whilst dealing with this somewhat annoying disease.....
So yes I would still choose to have CF at this moment in time, however I cannot guarantee that the above would be my answer still if my CF were more severe.... perhaps something to bare in mind if my condition changes....
Anyway im going to stop rambling on now and get some work done :)
xx
If you could be re-born, would you choose to have CF, whilst knowing how it feels and everything?"
My answer would be at this moment in time, yes I would still choose to have CF.
Even with all the crap it brings daily, and the pains and hassles it can cause, I think I'd be a total different person if I didnt have CF. I dont think I would have gotten as far as I am with "life" as I am right now. Getting into University was a massive leap for me, especially as I didnt think that I would be accepted. I cried my eyes out with happiness when I read my acceptance letter for University. Although I said I was sick of all the "hurdle climbing" I can honestly say that I wouldn't change having CF.... However I've not been through some things that others with this disease have been through, such as a transplant.
If I had the chance to live a day in the life of someone who was totally healthy and then went back to having CF I would be upset to begin with I think, but once I realised again how much CF has an impact in a good way aswell as bad on my life I think I would be okay again.... I say good as it can be a motivation havin CF, in the way that it can force you to succeed as there is a life expectancy you dont know if your going to reach and excced that "limit" or if your not going to even come close, you just dont know really, and so I think that it can be a motivation to get out of bed (unless your having a particualrly bad day) and to do everything to the best of your abilities whilst dealing with this somewhat annoying disease.....
So yes I would still choose to have CF at this moment in time, however I cannot guarantee that the above would be my answer still if my CF were more severe.... perhaps something to bare in mind if my condition changes....
Anyway im going to stop rambling on now and get some work done :)
xx
Spend a day in my shoes will you.....
This post will be a bit of a rant, so bare with me :) I was going to post it the other day but got distracted and left it 'till now....
Does anyone ever feel like guilty for needing to take time to rest up and sort themselves out for a day here and there?
I do. With having CF, it can sometimes knock me for six with feeling tired, and trying to stick to a strict schedule of attending uni and also doing all the coursework on time, and finding the time to fit in to do all my physio and general health sorting things can be really difficult for me at the moment.
Im really struggling with Uni work and dealing with health, chatting to various people on the CF forums has helped me with the CF side of things, to know that im not the only one trying to generally deal with things with it, not just whilst being in Uni, but as an everyday part of life.
Theres a few people whom I feel frown upon me for needing to take that bit extra time to get over what is to them a simple cold, where as for me is a possible round of IV's! Or when I take the odd day off Uni here and there to rest up and try and catch up with things im behind on.
I dont have a lot of confidence lately and as a result I'm finding it hard to ask for help from my lecturers, another reason I find it hard to ask for help is because when I was in school from Juniors to Seniors whenever I needed help and I asked the teachers I was always made to look and feel the idiot and made to feel like I was causing the teachers time and effort to explain things to me. I dont get a great deal of things that easily and the teachers always had to repeat themselves when helping me, which they always seemed to get annoyed about. So I gave up asking for help over the years and now it has just grown into a slight fear of asking for the help when I most need it. Some of my friends don't seem to be able to grab the concept of this "fear" I have, and I feel that it really annoys them, but although I'm trying to sort it out, I'm not getting as far as I would like to be right now! This in turn is affecting my coursework, which is affecting my stress, which in round about way affects my health!!
I'm sick of feeling guilty for having this disease, I'm sick of having to ask my friends to slow down when were out walking, I'm just generally tired of constantly having to climb a hurdle everyday and most days feeling like I'm not even making it over the thing! However I will keep on muddling through, I have a goal I want to reach after all...
Sorry just wanted to rant a bit there :) Not all posts will be me complaining so no worries there :)
xx
Does anyone ever feel like guilty for needing to take time to rest up and sort themselves out for a day here and there?
I do. With having CF, it can sometimes knock me for six with feeling tired, and trying to stick to a strict schedule of attending uni and also doing all the coursework on time, and finding the time to fit in to do all my physio and general health sorting things can be really difficult for me at the moment.
Im really struggling with Uni work and dealing with health, chatting to various people on the CF forums has helped me with the CF side of things, to know that im not the only one trying to generally deal with things with it, not just whilst being in Uni, but as an everyday part of life.
Theres a few people whom I feel frown upon me for needing to take that bit extra time to get over what is to them a simple cold, where as for me is a possible round of IV's! Or when I take the odd day off Uni here and there to rest up and try and catch up with things im behind on.
I dont have a lot of confidence lately and as a result I'm finding it hard to ask for help from my lecturers, another reason I find it hard to ask for help is because when I was in school from Juniors to Seniors whenever I needed help and I asked the teachers I was always made to look and feel the idiot and made to feel like I was causing the teachers time and effort to explain things to me. I dont get a great deal of things that easily and the teachers always had to repeat themselves when helping me, which they always seemed to get annoyed about. So I gave up asking for help over the years and now it has just grown into a slight fear of asking for the help when I most need it. Some of my friends don't seem to be able to grab the concept of this "fear" I have, and I feel that it really annoys them, but although I'm trying to sort it out, I'm not getting as far as I would like to be right now! This in turn is affecting my coursework, which is affecting my stress, which in round about way affects my health!!
I'm sick of feeling guilty for having this disease, I'm sick of having to ask my friends to slow down when were out walking, I'm just generally tired of constantly having to climb a hurdle everyday and most days feeling like I'm not even making it over the thing! However I will keep on muddling through, I have a goal I want to reach after all...
Sorry just wanted to rant a bit there :) Not all posts will be me complaining so no worries there :)
xx
Monday 16 November 2009
First Post :)
Hey everyone,
This is my first post, not entirely sure what to write about at the moment....
Im meant to be doing coursework at this moment in time, but im instead avoiding it by finally creating my blog, which ive been meaning to do for ages!
I guess as one of the reasons i created this blog is 'coz i want to blog about my Cystic Fibrosis and general life....
Ive had CF since I was born, I had a blocked intestine when I was born and had to have an operation for which I was transfered from my then local hospital to London Hospital, which has since closed down. I was in hospital for the first 6 weeks of my life. My mum came to see me when she could, which she tried her hardest to make everyday, she also had my older sister to sort out, who doesnt have CF, which I used to resent her for, but as Ive gotten older and understood about how I came to have it, I didnt resent her so much, I still get annoyed now and then with her but then thats what sisters do really lol!
Ive lived with CF for 20 years so far. When I was younger it was more "in the background" and I never noticed it, I didnt really understand it all and just knew I had to take pills whenever I ate (Creon) and also take antibiotics a lot more than the average person. I also had hospital appointments aswell, which I only liked going to as it meant I had the whole day off school, and got to go on a train haha!!
As Ive gotten older its become more prominent and Ive had good and bad times with it. I remember the first time I went onto IV's I was so scared, I'd never heard of them before, until I was transfered to my adult unit when I was 16 and they asked me if id ever had them before... They were always shocked that I didnt know anything about them, or even heard of them lol! Then when I had them for the first time it was also the first time I'd ever spent in hospital since I was born! So it was a pretty terrifying experience for me and for my mum. But the nurses on the ward made me feel welcome and were all pretty nice and chatty when they werent all busy :) My mum came to see me and my sister came down aswell as a surprise and bought me her Eeyore teddy which was sweet :)
I was pretty happy when I came out of hospital, the docs helped train me and my mum on how to administer home IV's, which was really helpful :) Since that first time on IV's ive had them quite a few times, the most recent being August this year. I had a slight infection and my docs wanted to give me a good round of strong antibiotics to set me up for my new uni term. They are a right royal pain, and I dont always feel the difference when I come off them, which annoys me. But if the lung functions goes up, I'm happy lol! Im currently about 63% and it goes up and down a lot this time of year... The lowest its ever been is about 49% and the weirdest thing is that I felt totally fine, I wasn't feeling that breathless and things, and when I did my lung function I found it so easy compared to past times I've done it, so it made no sense to me when it came back that low! Pretty scary as I hadnt noticed a change at all, and couldnt figure it out. I think if I had noticed a difference in myself and my health then I wouldnt have been so scared but my mum helped me through it all, and vice versa :)
Honestly I dont know what I would do without my mum, she is amazing! I love her so much :)
Ive got a bit of an infection at the moment so I'm on an extra neb (Colomycin twice a day) and oral antibiotics (Ciprofloxacilin also twice a day) Im finding it quite hard to fit the new neb in around my uni schedule but I'm managing to just about! My doc at BRI (Bristol Royal Infirmary) said that depending how I've picked up when I have my next appointment she might put me on IV's over the xmas holidays which will suck immensly so I'm really hoping I'll be better or at least showing enough improvement to not get IV's....
Being at uni now, I'm finding it hard to find the balance of taking care of myself and fitting in all the uni work I have and have a social life lol! I dont go out a whole deal, so its really nice to let off some steam when I do go out with friends, even if its just for a meal, which is usually at Frankie and Bennys, me and my friends are obsessed with that place, its lush!! :P
Most of my friends are pretty understanding about my CF, but I think there is the odd one or two who dont get it, but thats their perogative, as long as my close friends understand im happy :)
Before this blog I'd never spoken to anyone else who has CF, and i recently signed up the forums on the CF Trust website and I've met some really nice people so far who have been pretty helpful in answering questions I have and things :)
Im not sure what else to write about for now so until the next time :)
Kat
xx
This is my first post, not entirely sure what to write about at the moment....
Im meant to be doing coursework at this moment in time, but im instead avoiding it by finally creating my blog, which ive been meaning to do for ages!
I guess as one of the reasons i created this blog is 'coz i want to blog about my Cystic Fibrosis and general life....
Ive had CF since I was born, I had a blocked intestine when I was born and had to have an operation for which I was transfered from my then local hospital to London Hospital, which has since closed down. I was in hospital for the first 6 weeks of my life. My mum came to see me when she could, which she tried her hardest to make everyday, she also had my older sister to sort out, who doesnt have CF, which I used to resent her for, but as Ive gotten older and understood about how I came to have it, I didnt resent her so much, I still get annoyed now and then with her but then thats what sisters do really lol!
Ive lived with CF for 20 years so far. When I was younger it was more "in the background" and I never noticed it, I didnt really understand it all and just knew I had to take pills whenever I ate (Creon) and also take antibiotics a lot more than the average person. I also had hospital appointments aswell, which I only liked going to as it meant I had the whole day off school, and got to go on a train haha!!
As Ive gotten older its become more prominent and Ive had good and bad times with it. I remember the first time I went onto IV's I was so scared, I'd never heard of them before, until I was transfered to my adult unit when I was 16 and they asked me if id ever had them before... They were always shocked that I didnt know anything about them, or even heard of them lol! Then when I had them for the first time it was also the first time I'd ever spent in hospital since I was born! So it was a pretty terrifying experience for me and for my mum. But the nurses on the ward made me feel welcome and were all pretty nice and chatty when they werent all busy :) My mum came to see me and my sister came down aswell as a surprise and bought me her Eeyore teddy which was sweet :)
I was pretty happy when I came out of hospital, the docs helped train me and my mum on how to administer home IV's, which was really helpful :) Since that first time on IV's ive had them quite a few times, the most recent being August this year. I had a slight infection and my docs wanted to give me a good round of strong antibiotics to set me up for my new uni term. They are a right royal pain, and I dont always feel the difference when I come off them, which annoys me. But if the lung functions goes up, I'm happy lol! Im currently about 63% and it goes up and down a lot this time of year... The lowest its ever been is about 49% and the weirdest thing is that I felt totally fine, I wasn't feeling that breathless and things, and when I did my lung function I found it so easy compared to past times I've done it, so it made no sense to me when it came back that low! Pretty scary as I hadnt noticed a change at all, and couldnt figure it out. I think if I had noticed a difference in myself and my health then I wouldnt have been so scared but my mum helped me through it all, and vice versa :)
Honestly I dont know what I would do without my mum, she is amazing! I love her so much :)
Ive got a bit of an infection at the moment so I'm on an extra neb (Colomycin twice a day) and oral antibiotics (Ciprofloxacilin also twice a day) Im finding it quite hard to fit the new neb in around my uni schedule but I'm managing to just about! My doc at BRI (Bristol Royal Infirmary) said that depending how I've picked up when I have my next appointment she might put me on IV's over the xmas holidays which will suck immensly so I'm really hoping I'll be better or at least showing enough improvement to not get IV's....
Being at uni now, I'm finding it hard to find the balance of taking care of myself and fitting in all the uni work I have and have a social life lol! I dont go out a whole deal, so its really nice to let off some steam when I do go out with friends, even if its just for a meal, which is usually at Frankie and Bennys, me and my friends are obsessed with that place, its lush!! :P
Most of my friends are pretty understanding about my CF, but I think there is the odd one or two who dont get it, but thats their perogative, as long as my close friends understand im happy :)
Before this blog I'd never spoken to anyone else who has CF, and i recently signed up the forums on the CF Trust website and I've met some really nice people so far who have been pretty helpful in answering questions I have and things :)
Im not sure what else to write about for now so until the next time :)
Kat
xx
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