So its been ages since i last blogged. Im not going to sit and reel out excuses as to why that is coz the truth is i really havnt been bothered to keep my blog up to date. I dont really know why as i do enjoy blogging but i think i maybe just wanted to take a break i dunno... anyway im back now :)
No much has happened i dont think really since my last blog in March. Im back at Uni after a nice relaxing Easter Hols, rested up plenty and mum fed me up :) She made a Banoffee Pie over hols and i practically ate the whole pie, it should have served at least 4-8 people i think! And yes im pretty proud of that fact haha!
So yeah im back at Uni, my second year is nearly finished :D the next few weeks i think are going to drag like hell, which in a way is good as means plenty of time to revise for my all important end of year exams - im proper crapping myself about them! I always do better with Coursework rather than exams, i think the whole time limit thing is the main issue, plus i dont retain information very well :|
Apart from my exams nothing major is happening. Im seeing the psychologist on my CF team for reasons im not going to divulge, but lets just say that the sessions are helping me, which is what i was really hoping they would do :)
Im a bit worried about my health atm, although im doing my physio and things like that im still getting extremely breathless just walking from my house to the bus stop which is like a 1min walk if that! A few other factors are at play as well, and it took me all weekend to convince myself that maybe with exams coming up i should look into bringing my appointment forward as atm its only 3 days before my exams, and im worried that if i leave it till then ill be worse and they will insist on IVs which i cannot do even more so than my last round coz of my exams. I need NO distractions for these exams. With the HUGE disruption i had from my last IV round and longest stay ever (for me) in hospital it really set me behind with all my work (which has pissed me off) and so i need to do well in these exams to pass my year!! So no pressure :P
So i rang them this morning and they said they will speak to a doctor and get back to me today... thats been a few hours now and im still waiting for a phone call back! I said i really need it to be this week and explained why. Now for me to actually ring up and want to come in sooner coz i recognise im not feeling well is nothing short of a miracle for me, as i usually just burry the thoughts and ignore it, then i get worse - i have a vicious cycle i get stuck in, im pretty sure im not the only one who does this - i think i ignore it all because its a case of i want to control the CF and not it control me. so i ignore the signs of possible infection so i can pretend to be "normal" for a while longer. Its pretty thick really as then when i do get treatment, its usually for longer and usually more agressive and things and so i just get really low and fed up. Plus if im in hospital the only two people who remember im still alive on this Earth is my amazing mum and Emily - best friend/house mate/bail payer :p - which pisses me off and upsets me further, as my other so called friends totally forget about me and dont even ask how i am via text unless i text them to see how they were. In the end i didnt bother texting them, which made me feel even more alone but it proved to me that at least i know who my true friends are in any situation. So yeah vicious cycle of which i have attempted to break by actually ringing up and saying i need to come in sooner. So im slightly annoyed theyve not rung me back yet and arent jumping at the chance to drag me in and poke and prod me...
On the bright side i went out friday night for the first time in absolutely ages! It was that long since id been out that i couldnt even remember the last time i did go out! Due to this i took the alcohol intake steady. I still had a slight hang over in the morning but it was okay and bearable :)
I wasnt able to dance much due to getting so breathless and coughing on the dance floor with everyone staring at me wasnt my idea of a good night out, so i did sit down a lot and chat to people. But i still had a really good night :D which is the main thing i think! Im looking forward to going out again at some point. At least i know i can proper party after my exams are over - that will be a messy night!
Monday, 26 April 2010
Tuesday, 30 March 2010
Invincibility and Wishes
When i was younger i didnt think about the future, the only thing i thought about future wise was what i could eat next! I miss them days, not having to plan for the next day and the day after. Not having to plan where to fit in a good amount of physio to help me each day, not having to worry about running round like a loon in the garden and having a coughing fit that would reduce me to my knees from gasping for breath.
I miss them days. So simple. Them days of feeling invincible and like i could literally hold the world on my own two shoulders - not in a manner of troubles and concerns way, but in a manner of strength, energy, upliftingness if thats even a word...
Now i find myself waking up each day and looking to make sure my blue inhaler is near enough to me with a drink as i know that as soon as i move or sit up the coughing will start. Sometimes its just a little cough and im fine, other times ive been able to wake up and get downstairs and making breakfast before i even have a coughing fit - those are the really good days, which feel like they are getting few and far between. But most days its a horrid hacking cough and it really pisses me off. God knows what my neighbours think of me!
I dont like waking up and thinking when should i do my physio - before or after my shower, or breakfast, i dont like waking up anymore and thinking what shall i do for physio this morning, or when is my next hospital appointment again, or am i on any new meds that i need to take at certain times at the moment?... I hate these pestering thoughts. They are swamping my head more and more these days and i hate it.
I wish i could wake up and this all be a dream, and that i wake up and feel invigorated for life and jump out of bed and run round the garden like a loon without getting stupidly breathless...
I wish i was like 10 years old again. I was thinking and thats when i think i last felt "fully healthy". If this life was a game i would need to be searching around for little hearts right now to build my health back up before i go and fight the "big boss". I feel like im walking further and further into a battlefield unarmed and blindfolded everyday. Its horrible and right now theres not a lot i can do about it other than "try my best to stay healthy".
Im a pretty bad person to have this disease where a lot is required of me 24/7 'coz im so lazy sometimes. I really dont know if God is real, and im not even sure if i want to know 'coz ive got a few things to complain to them about, but if God is real, i would love it if he could get rid of all this rubbish disease business. Thats all diseases not just CF. I know there are a whole range of different diseases out there in the big bad world but sometimes i wonder if were all still in the same boat anyway.... Even so, the boat sucks.
Maybe im wishing for too many things, or too much of one thing, but I wish i could feel invincible again...
I miss them days. So simple. Them days of feeling invincible and like i could literally hold the world on my own two shoulders - not in a manner of troubles and concerns way, but in a manner of strength, energy, upliftingness if thats even a word...
Now i find myself waking up each day and looking to make sure my blue inhaler is near enough to me with a drink as i know that as soon as i move or sit up the coughing will start. Sometimes its just a little cough and im fine, other times ive been able to wake up and get downstairs and making breakfast before i even have a coughing fit - those are the really good days, which feel like they are getting few and far between. But most days its a horrid hacking cough and it really pisses me off. God knows what my neighbours think of me!
I dont like waking up and thinking when should i do my physio - before or after my shower, or breakfast, i dont like waking up anymore and thinking what shall i do for physio this morning, or when is my next hospital appointment again, or am i on any new meds that i need to take at certain times at the moment?... I hate these pestering thoughts. They are swamping my head more and more these days and i hate it.
I wish i could wake up and this all be a dream, and that i wake up and feel invigorated for life and jump out of bed and run round the garden like a loon without getting stupidly breathless...
I wish i was like 10 years old again. I was thinking and thats when i think i last felt "fully healthy". If this life was a game i would need to be searching around for little hearts right now to build my health back up before i go and fight the "big boss". I feel like im walking further and further into a battlefield unarmed and blindfolded everyday. Its horrible and right now theres not a lot i can do about it other than "try my best to stay healthy".
Im a pretty bad person to have this disease where a lot is required of me 24/7 'coz im so lazy sometimes. I really dont know if God is real, and im not even sure if i want to know 'coz ive got a few things to complain to them about, but if God is real, i would love it if he could get rid of all this rubbish disease business. Thats all diseases not just CF. I know there are a whole range of different diseases out there in the big bad world but sometimes i wonder if were all still in the same boat anyway.... Even so, the boat sucks.
Maybe im wishing for too many things, or too much of one thing, but I wish i could feel invincible again...
Saturday, 20 March 2010
everything all at once..
Im really not sure how i can put up with everything for much longer! I just really want to go home to my mum!
I dont what is wrong with me but i think as does a lot of other people think ive got a very rough virus! Last time i was on IV's was Xmas time i finished them on xmas eve, and then went back a few weeks later in the new year (so this year) and i was put on something called Septrum. After a few days of taking that i got really really itchey all over my body, especially my scalp which was soo annoying!! Also every single joint of mine was soooo much pain! I could barely move, my mum had to help me a lot, like dressing, climbing stairs, even simple things like opening bottles coz i couldnt move my fingers to grip anything properly at all.... I thot all of that was an allergic reaction to the Septrum as everything i had was listed on the reactions list that come with the meds. So i stopped taking them and after about a week or so it cleared up.
Well now all them symptoms are back, and it seems to be with a huge vengance :'( I literally cannot move without nearly crying from pain in every part of my body! My head is banging and my throat is so sore it hurts so much to swallow, so trying to keep my fluids up and keep eating is very painful!
My fingers, knees, and ankles are swollen, im not sure about anything else, coz it hurts to much to move to check it out...
All this is making me feel so low and fed up, and angry as well coz bad health for me just doesnt seem to want to let up lately! I tried to avoid IV's until i had my port put it coz my veins hide from the lines and last time it took 3 very painful attempts to get a line in :( Then i had my port in, that went all fine, started my IV's all was going fine, was plowing myself with physio, but not to the point of overdoing it, and my lung function didnt budge a single %, so i was really disappointed! So i kept on trying and trying and then it went down!! Literally wanted to scream, no matter how knackered it made me!! Finally the day i was dischared it went up by 2%.... doesnt sound a lot, but after all that had happened (or not happened) i pretty much nearly cried at that 2%!! Then i came home, had a nice time relaxing at mums.... and i was relaxed! I had no stresses of uni bugging me, no people make me feel so tiny and guilty for being ill and not able to attend uni like they do, or put all the effort into their work like they do. I work dam hard at uni and it feels like im getting everything chucked in my face!!
I really just cant be bothered with uni anymore, i want to leave. I cant juggle my health and uni at the same time and i want to quit one. If i could quit CF i would have done ages ago, but i cant, which just leave Uni to quit. I know my mum wants me home so she can take care of me, lord knows she would do a better job of it than i am right now!!
Im just fed up and nearing the end of my teather :'(
Ive got 6/7 assignments all due in for the 25th March 2pm, ive barely been able to start any of them from being so ill and in so much pain... for sketches i cant hold a pencil properly!
But if i dont hand anything in for my work then i fail my module or my course im not totally sure. But im so lost for motivation that im "this close" to just saying fuck it to all my work and not bothering anymore!
Like i said i just want to go home...
I dont what is wrong with me but i think as does a lot of other people think ive got a very rough virus! Last time i was on IV's was Xmas time i finished them on xmas eve, and then went back a few weeks later in the new year (so this year) and i was put on something called Septrum. After a few days of taking that i got really really itchey all over my body, especially my scalp which was soo annoying!! Also every single joint of mine was soooo much pain! I could barely move, my mum had to help me a lot, like dressing, climbing stairs, even simple things like opening bottles coz i couldnt move my fingers to grip anything properly at all.... I thot all of that was an allergic reaction to the Septrum as everything i had was listed on the reactions list that come with the meds. So i stopped taking them and after about a week or so it cleared up.
Well now all them symptoms are back, and it seems to be with a huge vengance :'( I literally cannot move without nearly crying from pain in every part of my body! My head is banging and my throat is so sore it hurts so much to swallow, so trying to keep my fluids up and keep eating is very painful!
My fingers, knees, and ankles are swollen, im not sure about anything else, coz it hurts to much to move to check it out...
All this is making me feel so low and fed up, and angry as well coz bad health for me just doesnt seem to want to let up lately! I tried to avoid IV's until i had my port put it coz my veins hide from the lines and last time it took 3 very painful attempts to get a line in :( Then i had my port in, that went all fine, started my IV's all was going fine, was plowing myself with physio, but not to the point of overdoing it, and my lung function didnt budge a single %, so i was really disappointed! So i kept on trying and trying and then it went down!! Literally wanted to scream, no matter how knackered it made me!! Finally the day i was dischared it went up by 2%.... doesnt sound a lot, but after all that had happened (or not happened) i pretty much nearly cried at that 2%!! Then i came home, had a nice time relaxing at mums.... and i was relaxed! I had no stresses of uni bugging me, no people make me feel so tiny and guilty for being ill and not able to attend uni like they do, or put all the effort into their work like they do. I work dam hard at uni and it feels like im getting everything chucked in my face!!
I really just cant be bothered with uni anymore, i want to leave. I cant juggle my health and uni at the same time and i want to quit one. If i could quit CF i would have done ages ago, but i cant, which just leave Uni to quit. I know my mum wants me home so she can take care of me, lord knows she would do a better job of it than i am right now!!
Im just fed up and nearing the end of my teather :'(
Ive got 6/7 assignments all due in for the 25th March 2pm, ive barely been able to start any of them from being so ill and in so much pain... for sketches i cant hold a pencil properly!
But if i dont hand anything in for my work then i fail my module or my course im not totally sure. But im so lost for motivation that im "this close" to just saying fuck it to all my work and not bothering anymore!
Like i said i just want to go home...
Wednesday, 17 March 2010
So very very tired and fed up
I came out of hospital a week yesterday, and i came off my IV's a week 2morro. Since then ive been dealing with all the meds coming out of my system, and trying to get back to uni and deal with all the coursework thats piled up past my ears.
Although i made a plan with my program leader to focus on the main 3 modules that im doing well in and have already put a lot of work into, and then the other 3 to just submit "something" enough for me to be able to do a possible resit of them in the summer time, i still feel like im falling flat on my face every day. The plan now i think about it more and more isnt actually that much of a plan. Although i submitted extenuating circumstances from being in hospital and on IV's, i still have to get all my work in on time for the deadline my tutors set. Which TOTALLY defies the point of "extenuating circumstances". To me submitting them should mean that i get some sort of extention granted for all the courseworks that have been affected due to my circumstances at the time that prevented me from completing them in time for the first deadline. BUT this is not the case, submitting them still means i have to get allll my work in on time. Then the board that deals with the exten circs has a meeting in either April or June time around the results time, and in the mean time i wont know anything about whats happening. But if my stuff gets granted then it just means my assignment grades wont be capped, and if they arent accepted (which if being in hospital for a month isnt something to be granted then id like to know what is on their list) then my mark is capped at around 40% i think!
I do 6 modules and ive got coursework for every single one, all they are all due in for the 25th March at 2pm!! Most of the work ive not a clue what im doing on, i think maybe once im started on them i might be okay. But getting started is the hardest part. And trying to focus on all the work, and attend the lectures and focus on getting better and having all the meds coming out my system, it just feels like its getting all way too much!
Im absolutely shattered, i mean beyond words can really describe shattered. I think its mostly from the meds coming out my system, im not totally sure, possibly combined with stress as well. Im trying sooo hard to stick to my physio schedule that i created with my physios before i was discharged, but its proving the equivalent of trying to climb a mountain. As is battling the coursework load.
Im also realy itchey all over my body, its giving my mini rashes everywhere, mostly my head, arms, face, neck and hands. And all day today ive been getting strange tingly feelings in my hands and feet and its kinda hurts actually, like ive just shut mu whole hand in the door or something... Its really quite annoying, and the itching is literally driving my insane!! If its continues for much longer as ive only had it for 2 days now im going to ring the hospital and see what they say/think, last time i had the itches like this it was at the beginning of my ceft round and they gave me anti-itching tablets, which seemed to help nicely. My scalp is the worst, its a case of if anything touches it even a breeze that moves my hair its a mad frenzy of itching! Its pissing my off as its making my port area itch and i can feel the beginning of the catherter i think it is which at the moment really sticks up and the skin feels quite thin over it, so its hard and annoying to scratch at :|
Fingers crossed this all passes soon as its also making me distracted from my work!
Right now i just couldnt care less about Uni, i really just want to go home to my mum and rest a hell of a lot! Sleep is number one on my wish list now! Although im sleeping really well through the whole night and getting to sleep isnt a problem at all, its just the waking up bit and the energy levels in between the day thats causing the problems. I feel like i can only open my eyes half way today, which is why i took the day off uni although i didnt get as much as i would like to have done, but still.
I guess im, just going to have to keep plodding along for now...
Although i made a plan with my program leader to focus on the main 3 modules that im doing well in and have already put a lot of work into, and then the other 3 to just submit "something" enough for me to be able to do a possible resit of them in the summer time, i still feel like im falling flat on my face every day. The plan now i think about it more and more isnt actually that much of a plan. Although i submitted extenuating circumstances from being in hospital and on IV's, i still have to get all my work in on time for the deadline my tutors set. Which TOTALLY defies the point of "extenuating circumstances". To me submitting them should mean that i get some sort of extention granted for all the courseworks that have been affected due to my circumstances at the time that prevented me from completing them in time for the first deadline. BUT this is not the case, submitting them still means i have to get allll my work in on time. Then the board that deals with the exten circs has a meeting in either April or June time around the results time, and in the mean time i wont know anything about whats happening. But if my stuff gets granted then it just means my assignment grades wont be capped, and if they arent accepted (which if being in hospital for a month isnt something to be granted then id like to know what is on their list) then my mark is capped at around 40% i think!
I do 6 modules and ive got coursework for every single one, all they are all due in for the 25th March at 2pm!! Most of the work ive not a clue what im doing on, i think maybe once im started on them i might be okay. But getting started is the hardest part. And trying to focus on all the work, and attend the lectures and focus on getting better and having all the meds coming out my system, it just feels like its getting all way too much!
Im absolutely shattered, i mean beyond words can really describe shattered. I think its mostly from the meds coming out my system, im not totally sure, possibly combined with stress as well. Im trying sooo hard to stick to my physio schedule that i created with my physios before i was discharged, but its proving the equivalent of trying to climb a mountain. As is battling the coursework load.
Im also realy itchey all over my body, its giving my mini rashes everywhere, mostly my head, arms, face, neck and hands. And all day today ive been getting strange tingly feelings in my hands and feet and its kinda hurts actually, like ive just shut mu whole hand in the door or something... Its really quite annoying, and the itching is literally driving my insane!! If its continues for much longer as ive only had it for 2 days now im going to ring the hospital and see what they say/think, last time i had the itches like this it was at the beginning of my ceft round and they gave me anti-itching tablets, which seemed to help nicely. My scalp is the worst, its a case of if anything touches it even a breeze that moves my hair its a mad frenzy of itching! Its pissing my off as its making my port area itch and i can feel the beginning of the catherter i think it is which at the moment really sticks up and the skin feels quite thin over it, so its hard and annoying to scratch at :|
Fingers crossed this all passes soon as its also making me distracted from my work!
Right now i just couldnt care less about Uni, i really just want to go home to my mum and rest a hell of a lot! Sleep is number one on my wish list now! Although im sleeping really well through the whole night and getting to sleep isnt a problem at all, its just the waking up bit and the energy levels in between the day thats causing the problems. I feel like i can only open my eyes half way today, which is why i took the day off uni although i didnt get as much as i would like to have done, but still.
I guess im, just going to have to keep plodding along for now...
Wednesday, 10 March 2010
Home Sweet Home!
This is the first chance I've had to write this today!
IM HOME!!!!! :D
I was happy to leave hospital, im just shy of a month of being in hospital!! Im still on IV's but its just meropenem now three times a day :D I had my last doses of Ceftazadime and Tobramycin yesterday, and i finish my mero on friday morning, then off to hospital to have my port deaccessed.Then im taking a week or so to rest up at mums, and get fattened up with lush food and then im hoping to get back to uni, then itll be Easter hols so ill have lots of time to rest up then before starting a fresh for my new term in April.
My CF nurse said to me today that she can train me to deaccess my port myself, and i looked at her totally panic stricken!! Im still getting over my fear of needles (ive got about 5 tattoos and i freak at having blood taken and such - go figure lol!) and my port im still getting used to it all and having one, so theres no way i can pull a needle out myself at the moment! Maybe in a few years or maybe less, well see. But i am doing really well at getting over the fear of needles (even my doctor said that :D), i think having the finger prick BM test once or twice a day everyday whilst in hospital actually helped with that haha!! Ive got lots of little white dots on my fingers now.
I know that ive got like 2 days left of my mero and it wasnt really worth coming out so soon to the end, but i wanted to and i think they wanted me to be out by tomorrow at least as its my 21st :D.... in fact i just realised the time and its officailly my birthday :D Im now 21 and old!! Happy Birthday to me :)
Im going to my mums for my birthday with some friends and mums prepared a little buffet thing for us all, and were just guna chill out, watch some films, and embarress ourselves on the Wii :D
I was going to go out drinking with friends on Friday night but im still way to knackered for that now and ill still have my IV meds in my system, and last time i drank after coming off them... well ill just say it wasnt pretty, and i looked like death :| So im going out in a few weeks when im pretty sure im all clear :)
I was talking to my physio today before i was discharged and she said itll pay me to get out of hospital as then i can gage when im off the meds what is making me feel so rubbish all the time, whether thats the meds, generally being in hospital, or the fact that this infection has just really battered me and i just need my rest to recharge my batteries so to speak. Ive made a really good plan for physio during the week and weve fit it all in around my lectures and things. Once the summer arrives ill be able to go back out there and start running again, plus im getting my gym sorted out and am hopefully having my induction next week.
I was joking with Emily saying that i need to go on some sort of course to be rehabilitated back into society... that is depending if they'll have me :P
On a closing note, im so happy for Rachael Wakefield who got the call for her new lungs! I dont really know her well, but i know she is a very strong women and all my good luck thoughts are with her! :)
IM HOME!!!!! :D
I was happy to leave hospital, im just shy of a month of being in hospital!! Im still on IV's but its just meropenem now three times a day :D I had my last doses of Ceftazadime and Tobramycin yesterday, and i finish my mero on friday morning, then off to hospital to have my port deaccessed.Then im taking a week or so to rest up at mums, and get fattened up with lush food and then im hoping to get back to uni, then itll be Easter hols so ill have lots of time to rest up then before starting a fresh for my new term in April.
My CF nurse said to me today that she can train me to deaccess my port myself, and i looked at her totally panic stricken!! Im still getting over my fear of needles (ive got about 5 tattoos and i freak at having blood taken and such - go figure lol!) and my port im still getting used to it all and having one, so theres no way i can pull a needle out myself at the moment! Maybe in a few years or maybe less, well see. But i am doing really well at getting over the fear of needles (even my doctor said that :D), i think having the finger prick BM test once or twice a day everyday whilst in hospital actually helped with that haha!! Ive got lots of little white dots on my fingers now.
I know that ive got like 2 days left of my mero and it wasnt really worth coming out so soon to the end, but i wanted to and i think they wanted me to be out by tomorrow at least as its my 21st :D.... in fact i just realised the time and its officailly my birthday :D Im now 21 and old!! Happy Birthday to me :)
Im going to my mums for my birthday with some friends and mums prepared a little buffet thing for us all, and were just guna chill out, watch some films, and embarress ourselves on the Wii :D
I was going to go out drinking with friends on Friday night but im still way to knackered for that now and ill still have my IV meds in my system, and last time i drank after coming off them... well ill just say it wasnt pretty, and i looked like death :| So im going out in a few weeks when im pretty sure im all clear :)
I was talking to my physio today before i was discharged and she said itll pay me to get out of hospital as then i can gage when im off the meds what is making me feel so rubbish all the time, whether thats the meds, generally being in hospital, or the fact that this infection has just really battered me and i just need my rest to recharge my batteries so to speak. Ive made a really good plan for physio during the week and weve fit it all in around my lectures and things. Once the summer arrives ill be able to go back out there and start running again, plus im getting my gym sorted out and am hopefully having my induction next week.
I was joking with Emily saying that i need to go on some sort of course to be rehabilitated back into society... that is depending if they'll have me :P
On a closing note, im so happy for Rachael Wakefield who got the call for her new lungs! I dont really know her well, but i know she is a very strong women and all my good luck thoughts are with her! :)
Monday, 8 March 2010
CF is one vicious circle!
Just had my doctors rounds for the morning. They always come round on the Monday just to see how people have been over the weekend, and reassess people etc. Today was a reassessment for me.
On friday i will have been on cefttazadime and tobramycin for 4 weeks!! this friday will also be 2 weeks that ill have been on meropenem. I wanted to be discharged this week as its my 21st birthday on Thursday :D
Even though my plans for that have gone out the window im going to celebrate it later in the month when my energy levels are back to being nice to me and all the horrid IV drugs are out my system.
So i managed to get them to take me off the ceft and the toby, and just leave me with one more week of meropenem, which im going to continue at home! Im going to HOPEFULLY be discharged wednesday morning and ill go back get more clothes and then travel to home (i live in bristol for uni atm) to continue my meds there and rest up some more before heading back to uni for the last few weeks before Easter Hols!
Before i had the drs come in, i saw my dietician. Ive never been a huge fan of these people. Nothing against them as members of the team and such they are pretty vital, but just their job! I know they have to make a living and are only here to help take care of us blah blah blah but still... does anyone else find they always repeat themselves??!! Its like listening to a stuck record and it drives me mad!!
I keep getting a nausea feeling, and its stopping me from being able to eat properly if at all. Therefore this has had a dramatic effect on my weight and ive gone from about 52kg down to 50kg in less than a week! I know this is bad, i know i need to gain my weight back to get more energy to get better lung function etc The drs put me on some anti sickness tablets and i managed to be able to get out on Saturday and went shopping with my mum in an exceptionally busy Primark! Then Emily took me for a meal at Bella Italia :D I really enjoyed it and it was the first proper meal ive had thats even looked edible when put in front of me that ive managed to eat! I even got a starbucks frappachino afterwards with whipped cream! So the tablets are deffinetly helping me!
Yesterday wasnt so good as although i was taking the tablets i still didnt have much of an appetite. I explained all this to my dietician and she started going on about how important it is to gain weight and keep it on to have energy, and all of this in turn affects my lung function. Im the one living with this shitty disease im pretty sure after nearly 21 years i have figured that and maybe a few things they dont realise as well! I dont really get along with supplements, i dont have a taste for them at all. Ive only just found the ensures a few months ago and im even starting to get sick of them now! :| Ive got Maxijul powder but im always forgetting to put it in my food and drinks, and when i usually cook for me and Emily its not easy to add in powder and make sure Emily doesnt get any - im pretty sure she doesnt want to eat an extra 600or so calories every meal time when theres no need!
I did my DNAse neb today and the physio arrived during my hour that im waiting to move on with more physio. To be perfectly honest i think im having a "rebelious" day with physio and general health. I just cant be bothered today and people whinging to me about importance i already know about isnt helping me - its just pissing me off more so. They can only help to a certain degree without actually living with it themselves they cant get that part! and it pisses me off when they have days spouting all this knowledge when in actual fact i just dont care today!
Im throwing my toys out the pram today and stamping my feet. I think we all have days like this, - sick people or not - and people just need to back off for a day and im fine. I realise im being stupid and just wasted a day of not doing physio when in actual fact that could have been one day to make the difference between getting over this infection and going home and me staying in and having more meds thrown at me. I just need to be left alone to realise this fact on my own, otherwise i wont listen and ill tell you where to shove it. simple.
Im going to go and drown myself in a tide of KFC chicken soon, so maybe that will cheer me up. The fresh air alone i think will help.
On friday i will have been on cefttazadime and tobramycin for 4 weeks!! this friday will also be 2 weeks that ill have been on meropenem. I wanted to be discharged this week as its my 21st birthday on Thursday :D
Even though my plans for that have gone out the window im going to celebrate it later in the month when my energy levels are back to being nice to me and all the horrid IV drugs are out my system.
So i managed to get them to take me off the ceft and the toby, and just leave me with one more week of meropenem, which im going to continue at home! Im going to HOPEFULLY be discharged wednesday morning and ill go back get more clothes and then travel to home (i live in bristol for uni atm) to continue my meds there and rest up some more before heading back to uni for the last few weeks before Easter Hols!
Before i had the drs come in, i saw my dietician. Ive never been a huge fan of these people. Nothing against them as members of the team and such they are pretty vital, but just their job! I know they have to make a living and are only here to help take care of us blah blah blah but still... does anyone else find they always repeat themselves??!! Its like listening to a stuck record and it drives me mad!!
I keep getting a nausea feeling, and its stopping me from being able to eat properly if at all. Therefore this has had a dramatic effect on my weight and ive gone from about 52kg down to 50kg in less than a week! I know this is bad, i know i need to gain my weight back to get more energy to get better lung function etc The drs put me on some anti sickness tablets and i managed to be able to get out on Saturday and went shopping with my mum in an exceptionally busy Primark! Then Emily took me for a meal at Bella Italia :D I really enjoyed it and it was the first proper meal ive had thats even looked edible when put in front of me that ive managed to eat! I even got a starbucks frappachino afterwards with whipped cream! So the tablets are deffinetly helping me!
Yesterday wasnt so good as although i was taking the tablets i still didnt have much of an appetite. I explained all this to my dietician and she started going on about how important it is to gain weight and keep it on to have energy, and all of this in turn affects my lung function. Im the one living with this shitty disease im pretty sure after nearly 21 years i have figured that and maybe a few things they dont realise as well! I dont really get along with supplements, i dont have a taste for them at all. Ive only just found the ensures a few months ago and im even starting to get sick of them now! :| Ive got Maxijul powder but im always forgetting to put it in my food and drinks, and when i usually cook for me and Emily its not easy to add in powder and make sure Emily doesnt get any - im pretty sure she doesnt want to eat an extra 600or so calories every meal time when theres no need!
I did my DNAse neb today and the physio arrived during my hour that im waiting to move on with more physio. To be perfectly honest i think im having a "rebelious" day with physio and general health. I just cant be bothered today and people whinging to me about importance i already know about isnt helping me - its just pissing me off more so. They can only help to a certain degree without actually living with it themselves they cant get that part! and it pisses me off when they have days spouting all this knowledge when in actual fact i just dont care today!
Im throwing my toys out the pram today and stamping my feet. I think we all have days like this, - sick people or not - and people just need to back off for a day and im fine. I realise im being stupid and just wasted a day of not doing physio when in actual fact that could have been one day to make the difference between getting over this infection and going home and me staying in and having more meds thrown at me. I just need to be left alone to realise this fact on my own, otherwise i wont listen and ill tell you where to shove it. simple.
Im going to go and drown myself in a tide of KFC chicken soon, so maybe that will cheer me up. The fresh air alone i think will help.
Friday, 5 March 2010
True Friends are rare
So im nearing on being in hospital for a month now! That is good and bad. Good as its meant they have been able to see me on a daily basis and can see what i mean about things i tell them when i have clinic appointments as an outpatient. Its also meant they have been able to run some tests that they cant usualy do for me as an outpatient, just so that they know ive not got this happening or that isnt beginning blah blah the usual. I also think its bad considering i wasnt planning on being in here for more than a week let a lone nearly a month! But when i got here i think i realised how fed up and exhausted i am with all this "keeping heathly" business im trying my hardest ever at. At least being in here ive not had to worry about making meals and doing my own IV's. Its all been done for me which has allowed me to try and pick up and rest up. Thats not totally been the case but im hoping things are starting to get back on track now.
The thing thats really starting to get me down is my so called friends. Its very true that when faced with a tough situation you find out who your true friends are!
I live with 4 other people, two i lived with in my first year on campus and two are from my course. One of the people who i lived with last year and this year ive mentioned a few times in previous blogs. Shes called Emily and i honestly think i would be in a mental house wearing a straight jacket had it not been for her and her true friendship. Shes always been there for me since the first day we both moved into the flat on campus. I remember we went out for a drink that night and we got to know each other in a matter of a few hours. I knew from that night we would be very close friends.
Weve both been there for each other in hours of need, and more so i think. I hope shed agree!
So i bet your wondering why im getting so low about friendships.... well out of all the people who i live with, she is the only one who it feels like she hasnt forgotten about me. I actually thought that i had a great group of friends for a change who would all stick with me and help me through rough times whether that be health, uni or general life situations that are sent to test us. But it seems i was wrong again. Or so it feels. Emily is the only one who as i said has stuck by me in what has been the roughest time ive ever had with my CF. Shes visited me in hospital countless times, even when she had loads of work on, or was just plain shattered! She has let me rant and moan about doctors, health, feelings, you name it ive bitched about it to her... Yet the others have all known my situation im in at the moment, and not once have they bothered to come and visit me. There was once when emily was on the way out and one of the people living with us asked if she was coming to see me, thinking this person was wanting to come with she said yeah, but instead got handed a load of coursework for her to pass onto me!! They have only asked me how im doing if i have text them to ask them something, or they have seen via facebook that ive had a shit day.
So yeah im pretty fed up and if im honest really angry at them. I get that they have had lots of coursework on as well, and they have a social life, or hate hospitals all the usual crap, but at the end of the day, if your a true friend then should that all not matter when it comes to helping a friend in need of a friendly face, and a giggle to cheer her up?
I was going to ask if they all wanted to come and visit and maybe go for a short meal somewhere in town (providing i was allowed out) but to be honest i cant be bothered with them anymore. I figure that if they really want to come and see me then they would do it off their own back. Im tired of making excuses for them to myself, like "oh im sure they just have a lot of work on" or "i bet they are just really tired from the day/week at uni"...
So ive got my mum and ive got Emily. They seem to be all i need in this world to survive tough times and to make happy memories with. I just hope these "so called friends" dont expect me to go out my way when they have a life situation they need support in getting through.
Oh if they could spend a day in my shoes, what they would realise would be life changing im sure of it!
The thing thats really starting to get me down is my so called friends. Its very true that when faced with a tough situation you find out who your true friends are!
I live with 4 other people, two i lived with in my first year on campus and two are from my course. One of the people who i lived with last year and this year ive mentioned a few times in previous blogs. Shes called Emily and i honestly think i would be in a mental house wearing a straight jacket had it not been for her and her true friendship. Shes always been there for me since the first day we both moved into the flat on campus. I remember we went out for a drink that night and we got to know each other in a matter of a few hours. I knew from that night we would be very close friends.
Weve both been there for each other in hours of need, and more so i think. I hope shed agree!
So i bet your wondering why im getting so low about friendships.... well out of all the people who i live with, she is the only one who it feels like she hasnt forgotten about me. I actually thought that i had a great group of friends for a change who would all stick with me and help me through rough times whether that be health, uni or general life situations that are sent to test us. But it seems i was wrong again. Or so it feels. Emily is the only one who as i said has stuck by me in what has been the roughest time ive ever had with my CF. Shes visited me in hospital countless times, even when she had loads of work on, or was just plain shattered! She has let me rant and moan about doctors, health, feelings, you name it ive bitched about it to her... Yet the others have all known my situation im in at the moment, and not once have they bothered to come and visit me. There was once when emily was on the way out and one of the people living with us asked if she was coming to see me, thinking this person was wanting to come with she said yeah, but instead got handed a load of coursework for her to pass onto me!! They have only asked me how im doing if i have text them to ask them something, or they have seen via facebook that ive had a shit day.
So yeah im pretty fed up and if im honest really angry at them. I get that they have had lots of coursework on as well, and they have a social life, or hate hospitals all the usual crap, but at the end of the day, if your a true friend then should that all not matter when it comes to helping a friend in need of a friendly face, and a giggle to cheer her up?
I was going to ask if they all wanted to come and visit and maybe go for a short meal somewhere in town (providing i was allowed out) but to be honest i cant be bothered with them anymore. I figure that if they really want to come and see me then they would do it off their own back. Im tired of making excuses for them to myself, like "oh im sure they just have a lot of work on" or "i bet they are just really tired from the day/week at uni"...
So ive got my mum and ive got Emily. They seem to be all i need in this world to survive tough times and to make happy memories with. I just hope these "so called friends" dont expect me to go out my way when they have a life situation they need support in getting through.
Oh if they could spend a day in my shoes, what they would realise would be life changing im sure of it!
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