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...
Tuesday 30 March 2010
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!
Thursday 4 March 2010
Port Operation!!
I wrote this blog on a word doc before i got the internet in here, so it is written pretty acurately which i think is good and quite important. Although i can still recall most of my feelings of how i was at the time, and it still gives me butterflies in my stomach, i dont remember all the thoughts i was having at the time. So this blog is going to show how it all was for me at the time of it happening rather than in hindsight.
Please bear in mind this will be a long post!
Now I know how the procedure goes I dont think I'll be as scared about having it done for when the time comes to have my port changed.
Who knows the next time I have an operation could be to take my port out for good, as a cure has been found for CFers! I can only dream until that day arrives...
Please bear in mind this will be a long post!
Date: 13th February 2010
Title: Before and after port operation
Op prep and being put under:
So when I first went in for a regular check up a few months ago I asked my doctor for information about ports. At the end of that appointment I wished I hadn’t even mentioned it. He said that it’s an option we need to start thinking about taking, and I ended up going on IVs that day, and at the end of the third attempt to get my line in, he said that it’s definitely a route we need to discuss in more detail… It went from me asking for some info about ports, to me possibly getting one myself in one appointment!!
Over the next month I think it was I was talking and thinking about ports a lot. It was the front of my mind every single day. I finally agreed to have one done after much thinking; even my doctor said I was the only patient who had thought the most about it. I agreed in the end as it got to the point where I was just over thinking it all and if I didn’t say yes then I would still be thinking about it!
After that I was given dates for when it could be done and I was to decide between them. Firstly I was told 29th January which when I was told these dates was only about a week away! Or the 12thFebruary, which was much better for me, as it meant I could get Uni things sorted before hand as well. So I booked it all for the 12 February. Mum booked the day off work so that she was able to be there with me and my best mate/house mate came to the hospital with me for support as well. Which i was glad about as it meant mum wasnt going to be alone while i was under.
After all the hassles I explained about in my blog about getting a bed, I ended up having to just go there Friday morning. That whole morning before i went in i was still trying to see if i was going to have a bed or not. While i was arranging all of that still, mum was currently on her way to Bristol to come and be with me! So between calling the hospital i was ringing mum as well and in the end i still hadnt heard anything by the time she was in bristol, so i rang her and told her to come to the house and well go from there. Soon as so as I hung up from her the hosptial rang me and told me to just come in ASAP and while i was still being operated on they would be finalizing a bed for me, I had to ring mum and tell her not to get on the bus, and lucky i caught her when i did as she was just heading for the bus to get to the house! I told her the plan and said im getting the bus to town and would meet her outside the hospital... Finally something was getting sorted!
As soon as I was told to just go in ASAP, my nerves started getting the better of me. The shaking began, although some of that was possibly from hunger and thirst. I got to the hospital and met mum outside there and we went straight to the Queens Day Unit, where I told them who I was and such and then the nerves really started getting me. My shaking was worse, and my chest was tight, my hands went all clammy and my mouth suddenly felt like the bottom of a bird cage! All that in less than 30 seconds – scary!
I was told to sit in the waiting area and was eventually called by a nice nurse in scrubs who showed me to a small side room where I met the anethetist. He asked me some questions about any previous operations, about my CF and how my chest was that day. I explained that not having been able to drink I hadn’t done my nebs so had not cleared anything that day. He wrote this and some other info down and then made my nerves even more worse by telling me I was going to have a tube down my throat for interbation!!
I had been wondering this, but as it was only a minor operation I assumed it wouldn’t be something that would be used. Apparently I was wrong. I asked if I was going to be awake when he put the tube in my throat and he assured me I would be asleep by then, but I might be coming round when they took it out. This I didn’t like either. And to hear I was to have a sore throat afterwards as well was not the best news as I hate them.
So he left and I was left being asked questions by the nurse who had shown me in to the side room. She got me to fill in some more questions and sign consent forms. Took my obs aswell, and my blood pressure was quite high as was my pulse. She put it down to nerves but wrote it down just in case.
Then physio came and saw me and talked about the procedure with me a bit and she took my pulse as well, which turnt out to be 112!! So pretty fast and she could see I was extremely scared. I felt a bit silly for being that scared but I was and looking back, still think I was, well within my rights to be that scared. After seeing the physio I was shown where to get changed into my sexy gown and stockings to stop deep vein thrombosis and something else that had a big word. I wasn’t exactly listening to anything but the blood rushing around me. I got changed and then went to the waiting room where I was able to tell mum and Emily some things I could remember, before the surgeon called me into another small room where he told me how the procedure was done. This kind of helped calm me and didn’t help calm at the same time. At least it assured me of one thing – that he sounded like he knew what he was doing! He told me ill be fine and that my port would be accessed in surgery before I come out as I was going onto IVs afterwards.
I went back to the waiting room, then no sooner had my arse touched the seat was I called to go to theatre. I hadn’t realised I was actually having to walk there myself! I prayed my legs would carry me and not collapse with the jelly like state they felt like they were in.
I walked through the double doors into the theatre room, and saw everyone in scrubs and gowns and such and that’s when my freaking out hit the roof and went through it! I don’t remember much from that point as it all kinda went in slow motion. I was told to lay down on the bed after being asked for the fifthteenth millionth time that day if I was pregnant! I layed down and coz I was shaking so much (like a leaf blowing in a very severe gale force wind) I was covered with about 3 or 4 blankets. Then I had these little “electrode” pads put on my lower back and two on my back at the top, they were then connected so I could be monitored properly. I then had my cannuler put in, by this time I was in total tears and was rubbing my streams away with a hand full of gauze someone had given me, and for once didnt even realise they had put the cannuler in at all!
I had the anaesthetic given to me via the cannuler, which was really cold! Made my whole right arm feel like it had been plunged into ice water. I think it was to help me relax as well. I started to go really dizzy and I said about it, and they said its fine, im meant to be feeling like that, and its totally normal. Next thing I see is the mask coming towards me, and I start feeling like I couldn’t breath, I realise I was starting to really really panic then, and there wasn’t anything I could do. I was petrified to put it bluntly.
Someone told me to breath steadily and deeply and to try and stay calm – easier said than done when they aren’t the ones shitting themselves!! I must have managed it anyway as I remember the mask coming half over my mouth and then after a few mins it was totally over my mouth and I don’t remember anything after that until I woke up.
Waking up after op and recovery:
I remember suddenly being aware of people talking and machines beeping around me. Then I could feel a tightening on my left arm at the top, and then it would loosen. I wasn't totally sure what it was at first. I think I went back to sleep again, as I then remember opening my eyes briefly and seeing a bunch of nurses in the corner and I couldn’t keep my eyes open so I went to sleep again. I woke up again and realised the tightening and loosening on my arm was blood pressure machine, and I could feel the finger thingy to measure my stats on my right hand. I could feel a mask around my mouth, and my first thought was that my mouth and throat were as dry as a desert!! Never had my mouth been so dry and sore. I think the anaesthetist person must have seen my eyes open as she came over, I don’t member what she said, I know I asked for a drink, and she gave me some water. It’s the only time I think water will ever taste like heaven! She switched the machines off and took all the things off me. I was still really bleary and groggy and just about managed to hold my cup of water properly! Once I was a bit more alert the porters came and moved me to another part of recovery, where I know I asked for mum.
Still being all bleary and not being about to see more so as I didn’t have my glasses on (mum had them with her) I didn’t actually recognise mum walking down the corridor towards me. All I remember seeing and thinking was that’s one worried looking lady walking towards me! When she got closer I realised it was mum, and she held my hand while I drank and spoke a little bit, I was still really groggy so wasn’t able to say much, that and my throat was sooo sore! I'm not sure but I think I may have fallen back to sleep again while mum was there…
Eventually my doctor came to see me and my dietician to arrange snacks to be sent up for me to the ward. I don’t really recall much of what was said by my doctor and I don’t think hes expecting me to remember much either haha!
Emily (the best friend/housemate) came to my bed as well after a while, and me, mum and Emily was sat in the recovery area for a few hours until I was finally taken up to the ward 10. Mum and Emily met us up there and I was taken to my room. This was the tricky part. I had to get up from the bed that I was in and get into my new cleaner one…. Not having stood up for some hours and still being very groggy this proved to be a small challenge for me.
As my knees were killing me with pain from not having been moved for a long time, I was eager to stand up and not at the same time. Only in my eagerness to stand I nearly exposed myself haha! Thankfully the porter helped me to no do that and helped me to the new bed where I was sat. The numbness had started to wear off and the feeling of being punched in the chest was starting to make it self known - where the port had been inserted.
As the evening went on, mum left to get the train home, and physio came to see me, which is when Emily left as well. Having had a general anaesthetic my chest had been shaken up a lot and was really manky from being so still for so long. So this meant things were very very hard to shift and my cough was very rough and harsh. It wasn’t easy at all, as coughing hurt my already raging sore throat (from being interbated) and made my port area really hurt. But I managed to get something shifted with a hyper tonic saline neb with physio. She was very happy and gave me some tips of supporting my port area when coughing, and gave me a nice towel to put over to apply some pressure when coughing. We stopped after I did two nebs, and she told me to rest and just do the nebs some more when I was feeling more up to it. I did some more later that evening and again in the morning.
I was given some pain killers – codeine and paracetamols that night aswell and they worked a charm for helping to deal with the pain. Didn’t get rid of it totally but helped manage it enough that I was able to be comforatable. If the pain was still too bad then I was allowed tramadol aswell if I wanted it. I didn’t sleep much at all that night though. I slept for an hour or two and then woke up every hour on the hour, as the pain killers had worn off, and the side my port is in on my chest is usually the side that I sleep on, and as I couldn’t lay on it, I wasn’t able to get to sleep properly on my back.
So that was my blog I wrote on a word doc the day after my operation. While I was writing that I remember feeling all the butterflies in my stomach again, and it was then that I think it hit me that I'd had an operation and it was all over now! I dont really care if anyone reading this thinks im being a dramatic as it was only a minor operation and nothing really compared to some operations that happen for people for various reasons. But it was a huge deal for me, considering that when I was younger I always said to myself that I would never have surgery... in hindsight a silly thing to say to myself when I have CF, but then I was young, I didnt understand what could be to come as I got older. I think i only said that to myself as i used to hate my scar ive got from my operation from when i was a baby on my blocked intestines. This was another reason i was so scared about my port op, as id not had one since i was born and clearly dont remember that!Now I know how the procedure goes I dont think I'll be as scared about having it done for when the time comes to have my port changed.
Who knows the next time I have an operation could be to take my port out for good, as a cure has been found for CFers! I can only dream until that day arrives...
Wednesday 3 March 2010
Catch-ups - admissions
So I said in my blog yesterday that I would post my blogs that ive been keeping while in hospital. I wasnt planning to do this until i was out due to no internet access. But as a friend lent me her dongle so I get the internet for now :)
Im just guna do one a day, as i dont want to do one massive blog that takes a year to read!
My first one is the port operation.
Date written: 13th February 2010
Title: Port Operation
So I finally had my port operation yesterday!!
The whole day was stressful and terrifying! Ill explain why below…
Thursday I was supposed to be admitted into hospital to prepare me for my op the next morning. So I took the day off Uni so that when the hospital rang me to say to head in as my bed was ready I was able to just pick up and go straight there. So I waited, and waited and waited all day! It wasn’t until about 3pmish that admissions rang my mobile and said that they don’t have a bed for me and that they will ring at some point tomorrow and let me know again whether they had one for me or not. I said well what am I supposed to do as im meant to be having my port operation in the morning and I was told I was going to be admitted today. She said that she wasn’t aware of that information and that she would pass it on to the bed manager!
So all I could do was say okay thankyou, and hung up. I then called the CF clinic, where I explained what they had said, and apparently it wasn’t the first problem they had had this week with admissions. I know they aren’t exactly always cheerily happy with them anyway so it must have been a bad week I figured. One of the CF nurses said they would sort it out and they would ring me back. So I waited and waited and waited some more! By this time it was like 5pm so I guessed there was no way I was going to be admitted that day after all! The CF clinic did ring me back tho and they confirmed what I knew about non-admision, and then I was told to ring admissions in the morning between 7.30am and 8am! (Crack of dawn for me!!) So I asked if there was anything I needed to do to prepare for my port operation and she said to do the usual starve thing from midnight and no drinking at all. So I did that. I went to bed early that night thinking I would get myself lots of sleep to prepare for my big day on Friday. How wrong was I!! I didn’t sleep a wink. I dozed but that’s about it. Then when my alarm went off at 7.30am I was instantly wide awake – typical why cant that happen when I have to get up early for a morning lecture!
So I went about beginning the circus that is ringing admissions. I first rang the ward 10 which I knew was where I would be placed as due to having cepacia I cant be on the CF ward as ill infect all the others with CF, as cepacia is very contagious between the CF community. I wasnt about to kill off an entire ward of people with my silly infection!! That wouldnt exactly do wonders for my confidence!
Ward 10 told me to ring back at 8am as they were currently doing the hand over from night to day nurses and information about all the patients from during the night. So I rang back at 8am, they said I needed to ring admissions. I asked for the number and she was half way through reading it out to me and then said “oh hang on I can patch you through to them” before I could say anything I was listening to cheesy classical music and waiting for someone to answer the phone. I eventually got an automated answer and it told me that the line isn’t manned until 10am – 4pm! And that due to the line being very busy I was to ring back at a less busy time. Then it hung up.
So I’m left with the ward not knowing what is happening and an unmanned and apparently busy admissions desk (surely if its always that busy, then there should be someone constantly on the desk!) So I looked in the yellow pages and found the reception number for BRI and rang that and got the admissions number. Rang that number and got the same automated answer machine!!
By this point my housemates were scared to come in the living room for fear of me exploding with rage. I assured them that unless they worked for hospital admissions then they were safe for now, but not to piss me off. They took this as a very good warning, thankfully.
So I rang back ward 10 as that’s all I could do. They said admissions had just rung them and they took my number and said that they would get admissions to ring me. That happened and I got someone who I couldn’t understand a word of what they were saying let alone hear them properly as there was people and phones ringing in the background. Then halfway through him telling me something he started talking to some lady that was I assume from her loud voice and being able to hear every word that she was saying, was stood right next to him! So I’m sat there trying my hardest not to loose it on the phone and then the women comes on the phone and basically tells me she has no idea why I was told to ring them myself and that she would ring a CF nurse and get back to me shortly. This was about 8.30am, the CF nurses don’t start until 9am! At least that was the impression I was under...
My operation was supposed to be about 10/11am!! So im left hanging and not knowing what the hell is happening and severely pissed off and pretty dam anxious. So I just went to get dressed and continued waiting for a phone call.
Finally about 9.30ish the CF nurse rang me and sounded even more pissed than I was, and told me to basically come in asap and they would continue to sort the bed situation out while I was under in theatre!! Eep!!
So I got my things together and me and my housemate Emily got me to the hospital where I had my port operation done about 12pmsomething. Ive written a separate blog about my feelings and how the op went and things as this is quite long already, and ive a lot to write about the op and the before and after things.
So that was what i wrote the day after my port operation about adamissions. I was good to get some anger vented out. I wonder if everyone has the same troubles with their hospital admissions people?
Ill blog again either later or tomorrow about the whole operation before and after bits...
So that was what i wrote the day after my port operation about adamissions. I was good to get some anger vented out. I wonder if everyone has the same troubles with their hospital admissions people?
Ill blog again either later or tomorrow about the whole operation before and after bits...
Tuesday 2 March 2010
Just some thoughts and feelings...
So ive got a lot of blogging to do!
This is just some thoughts im having at the moment, ill blog all about my port op and such afterwards soon.
I'm still in hospital. Oddly im not annoyed by this... yet. Although itll be 3 weeks on the 5th march that ive been in here. A personal record for me and im pretty sure ive shocked my doctors into a state of tiptoeing around me in case they say something and i take that as a "yay, i can go home now". But to be perfectly honest with you, im fine to be in here. Not happy about it, im not exactly jumping off the walls to be in here (far too exhausting for one thing) but im not pissed off and planning a great escape style situation of me leaving either.
I have had two big (to me they are big) realisations over the past 2 weeks and a few days. I think they are good and will help me, providing i actually listen to people and myself. Otherwise they are a bit sort of "wow, thats scary" realisation. Ill begin with the good realisation first i think...
1. I'm sick. Granted doesnt sound like the best start for a good realisation, but it actually is. Ive had this stupid disease since i was born. I think growing up i knew something was different about me, but i dont think i ever really acknowledged it, therefore not bothering to keep on top of treatments, and constantly making any physio who saw me bang their heads against a brick wall as they couldnt understand my total disregard for not doing physio. However now im realising this and actually trying to listen to my body, im begining to understand compliance to meds, treatments and physio etc etc. therefore the realisation of me being sick, is a good thing as it means i can now hopefully start getting somewhere that resembles that of a good lung function. Im currently about 63% and i would love it if i could get it up to 70% again. Even if its just for a few months, to feel that good about breathing again would be heaven!
Now onto the bad realisation.
2. Exactly the same. Im sick. Now i know i said that this is a good realisation and for the reasons above it is, but on the other hand this is really bad. I was talking to a friend who is my "go to person", as i am hers, and i said to her "does it sound.... odd that i am just beginning to realise that ive actually got lung disease, even tho ive had it all my life..." She said this:
"i wudn't say odd no, sometimes we never truly see the extent of sitiuations even tho it may be staring us in the face, other times we just supress it without realising it, and basically the mind will deal with when it feels ready to do so"
I kinda wish my mind had chosen a better and different time to deal with it. I mean lung disease. Its not really something i can wake up realising and then be like "eh, what the hell, its fine" and go back to sleep. Its pretty full on. I told my friend that i feel like ive just woken up and realised ive got no arms. Im actually pretty dependant on other people to an extent, whether i like that or not. Even if they are trained to deal with people like me, such as my CF team. I think this is just another thing that im going to have to find a way to adjust to, despite knowing ive had this for a life time so far, its still a shock to suddenly take in. I will talk to my CF team as well, just so they know how im feeling. Perhaps they can give me some words of wisdom for "dealing". Ive been told that talking helps a lot.
Something ive only been realising for the past few years, although it does depend on the person your talking to as well.
Anyway this was only a short blog, im off to sleep now as finished my meds for the night. Few hours and it begins all over again. Least the nurses have satisfied my strong sudden craving for some cornflakes :D
This is just some thoughts im having at the moment, ill blog all about my port op and such afterwards soon.
I'm still in hospital. Oddly im not annoyed by this... yet. Although itll be 3 weeks on the 5th march that ive been in here. A personal record for me and im pretty sure ive shocked my doctors into a state of tiptoeing around me in case they say something and i take that as a "yay, i can go home now". But to be perfectly honest with you, im fine to be in here. Not happy about it, im not exactly jumping off the walls to be in here (far too exhausting for one thing) but im not pissed off and planning a great escape style situation of me leaving either.
I have had two big (to me they are big) realisations over the past 2 weeks and a few days. I think they are good and will help me, providing i actually listen to people and myself. Otherwise they are a bit sort of "wow, thats scary" realisation. Ill begin with the good realisation first i think...
1. I'm sick. Granted doesnt sound like the best start for a good realisation, but it actually is. Ive had this stupid disease since i was born. I think growing up i knew something was different about me, but i dont think i ever really acknowledged it, therefore not bothering to keep on top of treatments, and constantly making any physio who saw me bang their heads against a brick wall as they couldnt understand my total disregard for not doing physio. However now im realising this and actually trying to listen to my body, im begining to understand compliance to meds, treatments and physio etc etc. therefore the realisation of me being sick, is a good thing as it means i can now hopefully start getting somewhere that resembles that of a good lung function. Im currently about 63% and i would love it if i could get it up to 70% again. Even if its just for a few months, to feel that good about breathing again would be heaven!
Now onto the bad realisation.
2. Exactly the same. Im sick. Now i know i said that this is a good realisation and for the reasons above it is, but on the other hand this is really bad. I was talking to a friend who is my "go to person", as i am hers, and i said to her "does it sound.... odd that i am just beginning to realise that ive actually got lung disease, even tho ive had it all my life..." She said this:
"i wudn't say odd no, sometimes we never truly see the extent of sitiuations even tho it may be staring us in the face, other times we just supress it without realising it, and basically the mind will deal with when it feels ready to do so"
I kinda wish my mind had chosen a better and different time to deal with it. I mean lung disease. Its not really something i can wake up realising and then be like "eh, what the hell, its fine" and go back to sleep. Its pretty full on. I told my friend that i feel like ive just woken up and realised ive got no arms. Im actually pretty dependant on other people to an extent, whether i like that or not. Even if they are trained to deal with people like me, such as my CF team. I think this is just another thing that im going to have to find a way to adjust to, despite knowing ive had this for a life time so far, its still a shock to suddenly take in. I will talk to my CF team as well, just so they know how im feeling. Perhaps they can give me some words of wisdom for "dealing". Ive been told that talking helps a lot.
Something ive only been realising for the past few years, although it does depend on the person your talking to as well.
Anyway this was only a short blog, im off to sleep now as finished my meds for the night. Few hours and it begins all over again. Least the nurses have satisfied my strong sudden craving for some cornflakes :D
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