I'll warn anyone reading this now, this is not a happy post, nor a christmasy one, so sorry in advance, but youve been warned...
I've been on IVs (Colomycin and Meropenem) for 2 weeks now and they've done absolutely fuck all :(
I've got Cepacia at the moment, and it doesnt seem to be budging and is putting up a very good fight against anything thats being thrown at it! Which as I'm sure some of you know or can imagine, is really really annoying and just gets you really down and makes you wonder why you bother with anything to keep healthy if its all just going to come back and bite you in the arse!
Thats exactly how I feel now. I went to the hospital today for my "end of the IVs" check up, and its not really impressive. Not how I would prefer it to be anyway. My lung function has gone down, I dont member what it was perfectly, but its not better at all. The CF team wanted me to continue on another week of IVs, but I couldnt do it :( Im far too tired and sick of everything! So we agreed I would go onto some oral antibiotics, and then go back to them next wednesday. They wanted to put me on something I've not had before (dont remember the name again sorry :S) but as they arent going to be there for a few days they didnt want to put me on something I've not had before and have no one around if any bad side effects occur, which is fair enough, so I'm on Ciprofloxacilin again to see if that helps at all. They said that it could be that my lungs are taking a bit longer to catch up with the rest of me, but I'm not so sure to be honest. As depressing as that sounds but its how I feel, and I try to be honest most of the time.
I feel like im letting myself and others around me down, mainly my mum, and 2 close friends. I also feel a bit selfish to myself if that makes sense, I was chatting with the CF nurse - Charlotte, shes brilliant, she'll listen and give her opinion and advice and wont get all uppy if you dont take it, which I love, most importantly she listens! - and I was telling her how I'm feeling and that I really just want this round to be over with now, and all that, and she gave me the talk of how they all have my best interest at heart and all that such a like. I listened, and I took into account what was said, but I was adament I wanted my line out today! Except now I'm worrying wether I did the right thing by myself. I feel selfish to myself as a large part of me just wanted to have my line out 'coz I'm so tired of doing my meds all the time, as I said before (sorry for repeating myself) and I just wanted an xmas without all that to do, and then another part of me was sat there thinking, take their advice from this lecture and continue the IVs, it could do me the world of good.... but then it might not do anything at all, in which case what to do then?!
Im just so scared that I'm heading to the point of "no return" you know? I've got to think about havin a port fitted now aswell, I asked my doctor about it on the day I went onto my IVs and he sed its a route we need to start thinking about! I was shocked, as I was only wanting information about it thats all, not to open the actual door to that route yet! I know I would eventually need one, but I didnt think it would be yet.... but they keep asking me if I've been thinking about it and its like they are pushing me for an answer so they can get the ball rolling..... which to be perfectly honest really scares me, the only major part of it that scares me is that its surgery! I know I would be asleep, well they would have to knock me out, fucked if they are coming near me with sharp things when I'm awake, wether I can feel it or not! And I know that its only like a "minor" operation, but the last operation I had was when I was born, and it was on my intestines and I don't remember anything about it obviously! But the thought of having one now scares me soooo much! But I know I'll need to get over this fear and get my port fitted soon...
I'm going to stop whinging now, as its Xmas and I'm going to try and cheer up! After all, with my line out at least I can have a bit of a drink now! :D My sister is down aswell at the moment and her husband is joining us late Xmas day :) so that will be nice.... depending on the amount I argue with my sister, but then again its not xmas until the family argue :P
My plan is to rest up for a few days and stop thinking about everything until after xmas, then sit down and chat with my mum about all thats floating about in my head at the moment. I'm also going to step my physio up a bit more, before I went to Uni, I went on the Wii alot, and that helped a bit, so I'm going to do that, and also I'm going to start doing this new nebuliser that I've got, which is Hyper-tonic Saline, I'm sure a few people I know from the forums do this aswell. Its all new to me, and I did the trial at the hospital and it really really dried my throat out, BUT I felt like it worked and my chest became very loose, so I think it will pay me to start doing that.
Merry Christmas everyone!!
xxx
Thursday 24 December 2009
Wednesday 16 December 2009
Sods Law strike 2!
Continuing from my last post, I got to the hospital and they checked my arm, it was a little red and angry looking but I was quite hot so they let me cool for a few mins, and it was still a bit red. So they flushed my line, and to begin with the Saline wasnt going through, the syringe just wasnt going to budge. I even moved my arm about to see if that helped. It went through in the end, but with some force, and typical, no pain at all! No swelling either and my swelling from that morning had just about gone down. Although they couldnt work out why I was swelling where I was, as its no where near the exit of my line inside my vein.
I even had my 4pm round of drugs done and there was no pain or swelling, so they sent me home funky dorey after a good chat about ports as I now have to start thinking about getting one inserted! Scary but I was the first to bring it up, and I have done in the past and theyve been reluctant to tell me, perhaps as at the time I was quite well, now im not so well. But ive got plenty of info to read about it for now.
Ive just done my 11pm drugs and as I was having a hard time pushing my Mero through as my line doesnt seem to like 20ml syringes this time, so its tough to push and hurts my hands, my nurses have said that I can do the Mero via the pump like I do my colistin. I did all this, and to begin with first saline flush was okay, a bit achey but fine, then attached Mero syringe via the pump, and a few mins in and it was hurting again like it was this morning! This pain has continued throughout my whole meds tonight. It hasnt swelled as bad and its not in the same place which I think is good, im not totally sure. But ive got a nurse coming out to see me 2morro for my 1/2 way mark (thank god) and so ill speak with her then and see what she thinks. Its sods law it was fine at the hospital and when im home doing them the line plays up again :(
I felt a bit silly going in after all that panic as this is the first time something has ever gone wrong for me with IV's, and then I get there and things seem fine.... But still least I got it checked out and sorted.
Lots of thinking and research to do about Ports now over xmas and then its being reviewed properly in January and were going from there, but I cant see summer rolling around and me still being without a port. Which sucks as I was thinking I was doing so well, guess I spoke too soon! haha but still if its for the best, and id rather make the decision myself to have one, than it get to late for me to still be able to say no...
I even had my 4pm round of drugs done and there was no pain or swelling, so they sent me home funky dorey after a good chat about ports as I now have to start thinking about getting one inserted! Scary but I was the first to bring it up, and I have done in the past and theyve been reluctant to tell me, perhaps as at the time I was quite well, now im not so well. But ive got plenty of info to read about it for now.
Ive just done my 11pm drugs and as I was having a hard time pushing my Mero through as my line doesnt seem to like 20ml syringes this time, so its tough to push and hurts my hands, my nurses have said that I can do the Mero via the pump like I do my colistin. I did all this, and to begin with first saline flush was okay, a bit achey but fine, then attached Mero syringe via the pump, and a few mins in and it was hurting again like it was this morning! This pain has continued throughout my whole meds tonight. It hasnt swelled as bad and its not in the same place which I think is good, im not totally sure. But ive got a nurse coming out to see me 2morro for my 1/2 way mark (thank god) and so ill speak with her then and see what she thinks. Its sods law it was fine at the hospital and when im home doing them the line plays up again :(
I felt a bit silly going in after all that panic as this is the first time something has ever gone wrong for me with IV's, and then I get there and things seem fine.... But still least I got it checked out and sorted.
Lots of thinking and research to do about Ports now over xmas and then its being reviewed properly in January and were going from there, but I cant see summer rolling around and me still being without a port. Which sucks as I was thinking I was doing so well, guess I spoke too soon! haha but still if its for the best, and id rather make the decision myself to have one, than it get to late for me to still be able to say no...
Sods Law :(
My IV's were going fine, no problems, my headache cleared up eventually :) My arm still aches a bit but thats normal for me when on IV's.
However, I went out with my mates last night (didnt drink any alcohol :) ) as it was my mates birthday outing last night and I was wrapped up warm, kept my arm protected and all that jazz, got home and my arm was a bit more achey than normal, I figured it was just a bit cold so warmed it up and slept fine. Got up this morning to do my morning meds and trying to flush my line was a bit hard and slightly painful, went onto my Meropenem and it was still hard to go thru, although it was going through slowly, except it was really painful :(
So Ive had this before and was told to warm a tea towel or something and put it over my arm and then try again. Did this, and carried on, nothing changed was still painful and it was just getting worse. I finished the Mero and went to flush with Saline and just under my collarbone a small tennis ball style lump had decided to form and my arm was quite painful to move..... enter panic mode! Rang my mum at work, panicking and told her what had happened (ive never had any probs before with lines at all) and she calmed me down and said to ring the CF team at 9am. So did that, and explained what happened, they rang me back and told me to go in for 3pm today :( it possible my line is blocked and I might need a new one put in!
It took 3 attempts to get this line in and i dont think it went in easily either :'(
So Im not looking forward to this afternoon at all :( I really really dont want to be admitted to hospital, and I feel really bad as I was meant to be going Xmas shopping with my mate today and its her birthday and we were going to lunch etc and now I dont think thats happening, and I feel crap coz I feel like Ive ruined her bday...
Anyone fancy swapping bodies for the day??
However, I went out with my mates last night (didnt drink any alcohol :) ) as it was my mates birthday outing last night and I was wrapped up warm, kept my arm protected and all that jazz, got home and my arm was a bit more achey than normal, I figured it was just a bit cold so warmed it up and slept fine. Got up this morning to do my morning meds and trying to flush my line was a bit hard and slightly painful, went onto my Meropenem and it was still hard to go thru, although it was going through slowly, except it was really painful :(
So Ive had this before and was told to warm a tea towel or something and put it over my arm and then try again. Did this, and carried on, nothing changed was still painful and it was just getting worse. I finished the Mero and went to flush with Saline and just under my collarbone a small tennis ball style lump had decided to form and my arm was quite painful to move..... enter panic mode! Rang my mum at work, panicking and told her what had happened (ive never had any probs before with lines at all) and she calmed me down and said to ring the CF team at 9am. So did that, and explained what happened, they rang me back and told me to go in for 3pm today :( it possible my line is blocked and I might need a new one put in!
It took 3 attempts to get this line in and i dont think it went in easily either :'(
So Im not looking forward to this afternoon at all :( I really really dont want to be admitted to hospital, and I feel really bad as I was meant to be going Xmas shopping with my mate today and its her birthday and we were going to lunch etc and now I dont think thats happening, and I feel crap coz I feel like Ive ruined her bday...
Anyone fancy swapping bodies for the day??
Update...
So I had my most recent hospital appointment on the 11th December. I knew it wasnt going to be an amazing appointment as I've been feeling pretty crap lately. I think this is due to working so hard for coursework deadlines and also not being able to sleep properly for some reason.
Its been quite tough for me at uni lately as most of my classes are upstairs or a bit of a walk from the bus stop (well for me its a bit of a walk, for others perhaps not) and so trying to climb the stairs or walking from the bus stops to my block that im in that day is a real effort for me and takes a lot of energy for me. I met one of my friends in one of the pc labs recently to do some coursework and I had to climb stairs to get to the room, well I got there and he asked had I been running I sed no, Ive just climbed the stairs. He asked this because i was huffing and puffing like I had just run a marathon and I was shaking from the amount of energy it had taken me. He didnt say much, but I think he was a bit shocked. I dont think some people believe me when I say lately that any kind of walking is a real effort for me, they just think im being lazy, when im really not. They just dont see how hard im really trying!
So all this and some other things i knew would mean IV's, and here I am sat here typing this after just finishing my afternoon meds. Im on Meropenem and Colistin (Colomycin, although i dont know y they give it two names its confusing) three times a day - 8am, 4pm and 11pm.
But the good thing is that as i was last on these in just August this year I managed to let my doc put my line in as an out patient and send me home that same day with all my things to do home IV's :)
It took three attempts to get my line in though as I hate having them in, so I usually have like this spray that freezes the area and numbs it for a few mins. Enough to have my line in and done before much feeling comes back.... Well i had this put on and then my lovely vein my dr had his eyes on, literally disappeared before his eyes, coz of this freeze spray. So in the end I literally gritted my teeth and had it put in without anything. I asked what happens if they cant get my line in, and he sed they would have to have my arm ultrasounded and the line put in that way so they could see what they were doing, and in the mean time have a venflom put in. I HATE venfloms! They last about 3 days maximum with me, and i find them more of a pain than the line ive got in now.
In then end the line was successfully put in, after enduring much pain. I wanted to stand up and walk out and tell them that i dont want this disease anymore, that they can have it back now. But then realised its not as easy as that. They didnt give this to me, there really isnt anyone to blame. My mum and dad had no idea about it, or that they are carriers so nothing they could have done. My sister was the lucky one of the two of us and skipped having it. I used to hate her for that, and at times when im quite sick like this i still do envy her a lot for being healthy, the same as i envy a lot of people i know who can laugh without having a coughin fit, and who can get a cold without it sending them into hospital, or simple things like that.
So ive been doing these meds since friday afternoon. friday night was a very rough night for me, the meds getting into my system was horrid. I had the violent shakes as i was so so cold, yet to the touch i was boiling hot, i felt so sick aswell and didnt get much sleep, so satuday i was doing nothing but sleeping as i had zero energy. I barely had an appetite, and so didnt eat a great deal. I think a lot of it was just tiredness, as sunday wasnt as bad, i slept better saturday night which resulted in me having a bit of a better appetite on sunday. I actaully managed breakfast and most of the soup i had for lunch, and i had a good meal in the evening. Today has been pretty slow, my appetite has gone again, and i feel really sick again. My head ache ive had since friday evening has moved to just over my eyes and above and its so painful i think thats whats making me feel so sick. Paracetamol doesnt seem to want to touch it and no amount of sleep is helping it.
I really just want to go home to mum and stay there. Im tired (not just IV wise either) of having this stupid disease and its really getting me down lately, although with it being Christmas im trying to not bring everyone else down aswell with me.
Fingers crossed things improve!!
Its been quite tough for me at uni lately as most of my classes are upstairs or a bit of a walk from the bus stop (well for me its a bit of a walk, for others perhaps not) and so trying to climb the stairs or walking from the bus stops to my block that im in that day is a real effort for me and takes a lot of energy for me. I met one of my friends in one of the pc labs recently to do some coursework and I had to climb stairs to get to the room, well I got there and he asked had I been running I sed no, Ive just climbed the stairs. He asked this because i was huffing and puffing like I had just run a marathon and I was shaking from the amount of energy it had taken me. He didnt say much, but I think he was a bit shocked. I dont think some people believe me when I say lately that any kind of walking is a real effort for me, they just think im being lazy, when im really not. They just dont see how hard im really trying!
So all this and some other things i knew would mean IV's, and here I am sat here typing this after just finishing my afternoon meds. Im on Meropenem and Colistin (Colomycin, although i dont know y they give it two names its confusing) three times a day - 8am, 4pm and 11pm.
But the good thing is that as i was last on these in just August this year I managed to let my doc put my line in as an out patient and send me home that same day with all my things to do home IV's :)
It took three attempts to get my line in though as I hate having them in, so I usually have like this spray that freezes the area and numbs it for a few mins. Enough to have my line in and done before much feeling comes back.... Well i had this put on and then my lovely vein my dr had his eyes on, literally disappeared before his eyes, coz of this freeze spray. So in the end I literally gritted my teeth and had it put in without anything. I asked what happens if they cant get my line in, and he sed they would have to have my arm ultrasounded and the line put in that way so they could see what they were doing, and in the mean time have a venflom put in. I HATE venfloms! They last about 3 days maximum with me, and i find them more of a pain than the line ive got in now.
In then end the line was successfully put in, after enduring much pain. I wanted to stand up and walk out and tell them that i dont want this disease anymore, that they can have it back now. But then realised its not as easy as that. They didnt give this to me, there really isnt anyone to blame. My mum and dad had no idea about it, or that they are carriers so nothing they could have done. My sister was the lucky one of the two of us and skipped having it. I used to hate her for that, and at times when im quite sick like this i still do envy her a lot for being healthy, the same as i envy a lot of people i know who can laugh without having a coughin fit, and who can get a cold without it sending them into hospital, or simple things like that.
So ive been doing these meds since friday afternoon. friday night was a very rough night for me, the meds getting into my system was horrid. I had the violent shakes as i was so so cold, yet to the touch i was boiling hot, i felt so sick aswell and didnt get much sleep, so satuday i was doing nothing but sleeping as i had zero energy. I barely had an appetite, and so didnt eat a great deal. I think a lot of it was just tiredness, as sunday wasnt as bad, i slept better saturday night which resulted in me having a bit of a better appetite on sunday. I actaully managed breakfast and most of the soup i had for lunch, and i had a good meal in the evening. Today has been pretty slow, my appetite has gone again, and i feel really sick again. My head ache ive had since friday evening has moved to just over my eyes and above and its so painful i think thats whats making me feel so sick. Paracetamol doesnt seem to want to touch it and no amount of sleep is helping it.
I really just want to go home to mum and stay there. Im tired (not just IV wise either) of having this stupid disease and its really getting me down lately, although with it being Christmas im trying to not bring everyone else down aswell with me.
Fingers crossed things improve!!
Tuesday 24 November 2009
Reality Check :(
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
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
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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