Ive been meaning to write a blog for ages now, its just that every time I've loaded the page to write things that are swirling in my head, i cant put them into sentences no matter how hard i sit there and try.
I'm still not totally sure how this post will turn out, but I'm just going to type and see what happens.
My thoughts of late have been pretty much 100% focused on CF. Sounds strange as living with this disease you'd think that i was thinking about CF all the time anyway. But i don't. I try not to anyway, otherwise i just get myself into a right mess in my head and i cant focus on anything. I loose myself, and its not a nice loose myself like when I'm staring at the clouds making pictures, its like i get trapped in my head and I'm surrounded by all these nasty, horrid thoughts and scary possible futures. Its tough to deal with, and tough to get out.
God! i bet i sound like a right mental patient!! But oddly, lately thinking constantly about CF hasn't trapped me in my head this time. Its like i found the window in there and I've been able to open it to allow some of the nicer thoughts in that were stuck outside before. The good realities that could happen instead of the nasty, horrid ones. Don't get me wrong they are all still there, its not like they all floated out the window.... but, well its like they've gotten smaller, less threatening and scary.
Honestly I'm not sure what changed to make them less scary, but I'm glad of it! I feel a tiny bit more free from the grasp of CF. Tiny doesn't sound a lot, but it feels huge to me. Perhaps its because I've been less stressed. I haven't been well AT ALL lately, and I'm only just now feeling like I'm getting to put my feet back on the floor. My toes are touching the floor at least. Usually when i get ill i worry about Uni and about the extra care i need to put into getting better, but still maintaining my coursework (the uni don't give extensions in any circumstances, so its hand something in or fail, submit extenuating circumstances and hope u can resit for free and uncapped at 40% in the summer) and general life. But this time, getting this ill, it put a lot into perspective. I made a pitiful attempt at the coursework i had due in 'coz that was literally all i could handle, a friend kindly handed it all in for me and i handed in my exten circs to resit in the summer before i graduate this year. I didn't get stressed about the coursework once, or worry about handing it in and passing. I just didn't worry at all about anything to do with Uni. I put it all on the back burner and just ignored it. I put all my energies into getting better. Which was and still is very hard.
I don't know what made me change this time around. I had been told how sick i could get and heard stories, seen other CFers put things on their blogs and facebook about things happening to them during infection and i just thought every time, i thought, "ah that wont happen to me 'coz I'm not that bad with infections" I thought naively that all my infections were the same each time. Extra tired, lack of energy, lack of appetite, increased cough etc etc. But this time was totally different, and threw me right out of my naive comfort zone.
I was throwing up constantly, i was coughing so much i couldn't breathe, i was coughing up blood for the first time ever, i had temperatures that made me feel like i was a melting snowman in the blazing sun, my heart felt like it was trying to burst out my chest, i could barely get out of bed for energy, i couldn't eat 'coz i felt so nauseous all the time. There was just no let up at all! I ended up in hospital, my sats were in the low 90's which is totally not normal for me as even during past infections they've not really dropped, and i was put on oxygen for the first time ever. When i thought i would never be on that. I had to have an ECG to make sure my heart wasn't doing anything they couldn't see with the increased numbers, my temperature was sitting at best around 38 at highest it got to 40. I was very ill for my standards. I was also very scared but i wouldn't admit that at the time. My lung function dropped to 38% and my weight down to the low 40's kg...
Its taken a lot for me to get to where i am now. Which still isn't better, not at all really. Sure all my numbers baring weight and LF have improved but its still not good enough. My appetite is coming back slowly, the past 2 days have been good for eating, including eating a cake i made with mum!
I'm trying to best to be compliant with my nebs and meds, but getting back into a routine is proving harder than it has before.
But ill get there. I always do eventually...
Tuesday, 11 January 2011
Sunday, 19 December 2010
Snowy Pics
For once i thought i would post some pics i have taken of the snow lately round my area. They are all taken from my bedroom window so theres a lot of snowy trees :) Ive got clinic tomorrow for my 2 weeks IV reassessment, so ill do a proper blog then...
Tuesday, 14 December 2010
been a tough time of late...
I dont really remember what my last blog was about, so forgive me for anything i repeat.
Ive been really ill lately. Its THE worst infection ive ever had. It started with me getting a simple cold, which went as usual down onto my chest and decided to set up camp there :( I got progressively worse, and ended up on IVs much to my annoyance. I was on orals before hand, which were doing the trick combined with being compliant and regularly going to the gym, then i got that cold and it was all down hill from there really.
My lung function has dropped to its all time lowest, and is sitting at 39% at the moment, so everything is a real struggle. Mums been great, helping me to wash, washing my hair, helping me to keep up eating and drinking. Generally trying to keep me warm and feel the best i possibly can when feeling like crap if that makes sense. I didnt go into hospital straight away as i wanted to stay at home, and keep gaining weight, as that was the only thing that had gone up. But i ended up getting worse that i had no choice to go into hospital.
I went to town with mum on the 5th and walked up from the bottom of town to get a taxi home, when i had to stop and catch my breath coz it was really cold as well so that makes it extra harder. I ended up having a coughing fit, and coughing up a serious amount of blood. Cue freaking out!! I had never before coughed up that much, the most id ever coughed up before was a streak or two. Nothing huge at all! So to be stood outside the taxi rank coughing up loads of blood, and proper freaking out i was not in a good way. Thankfully i was with mum so she was helping me to keep calm and try to stop coughing so much to stop the blood. I got home and went to sleep on the sofa. As i had clinic the day after i didnt worry too much about ringing the hospital. I told them all when i got the hospital and they wanted me to go in that day but it wasnt really feasable as it meant going home to get things, and then coming all the way back. No way we could afford that or that i could manage it on the train again, i only just made it there in the first place!! So we agreed that id go home, they would ring every day to check on me, and if anything else happened or more blood then i would tell them and go in more than likely.
Just my luck i had my second episode of coughing up loads of blood again on monday evening. I woke up from sleeping on the sofa and was extremely hot from having a raging temperature, started coughing and had to run for the bathroom to cough up blood :| Not nice. I decided then to take a bag in with me to hospital the next day. I rang the clinic in the morning, left a message for the dr to ring me and left for my journey to hospital, thankfully again mum was with me, as she had rung up work and said she couldnt go in due to having to take me into hospital.
I was admitted that day, there was a right fiasco with waiting for the bed to get sorted, but i cant be bothered to go into that right now. I will say that i didnt get into my room until five to midnight tuesday, was severly pissed off and felt like total crap beyond words can describe!!
While in hospital i had my obs being done every hour as my heart rate was through the roof, so i ended up having to have an ECG and seeing the on call dr. She ordered me an xray, which i was finally taken down for around midnight wednesday night i think it was!! Not a happy bunny as i didnt get to bed until about 1am that night!! Once again pissed off. No wonder my heart rate was through the roof!
I was being ploughed with paracetamol as my temp went up to 39 degrees! I was freezing one minute, dripping with sweat the next!! Couldnt win, rather uncomfy as well :(
My sats were sitting around 90 which granted isnt as low as some peoples ive seen, but its very unusual for them to be like that, so they put me on 2 litres of oxygen as well. First time ive ever been on oxygen and so i was a little freaked out by it all! The tube thing is SO annoying to go to sleep wearing :| and as that was when my sats dropped even more i had to sleep with it on. Thankfully by Thursday i hadnt coughed up any more blood since admission due to some nifty tablets i was put on to help stop the bleeeding and settle my chest, my temp was a bit more stable without paracetamols, my heart rate was down to 118, still not great but thats normal for me really. Also my sats were sitting comforatably around 97 again without oxygen.
Dr came to see me on friday morning, as i was finally awake when they did rounds. and said that i was looking so much better since she saw me on admission day, and to be perfectly honest i felt so much better!! i had slept a fair amount which i deffinetly think helped me loads. Sleep is the best medicine... as well as laughter :p
So it was agreed that i could go home that day, and as i still had all my IV stuff at home it was the shortest discharge in history :D
Im still not better, and im still on IVs, but i am feeling SO much better now!! Im still sleeping a lot, but thats okay. My appetite is picking up loads as well which is great! Ive got a long way to go, to feeling miles better that i want to feel but i think ill get there eventually...
Ive been really ill lately. Its THE worst infection ive ever had. It started with me getting a simple cold, which went as usual down onto my chest and decided to set up camp there :( I got progressively worse, and ended up on IVs much to my annoyance. I was on orals before hand, which were doing the trick combined with being compliant and regularly going to the gym, then i got that cold and it was all down hill from there really.
My lung function has dropped to its all time lowest, and is sitting at 39% at the moment, so everything is a real struggle. Mums been great, helping me to wash, washing my hair, helping me to keep up eating and drinking. Generally trying to keep me warm and feel the best i possibly can when feeling like crap if that makes sense. I didnt go into hospital straight away as i wanted to stay at home, and keep gaining weight, as that was the only thing that had gone up. But i ended up getting worse that i had no choice to go into hospital.
I went to town with mum on the 5th and walked up from the bottom of town to get a taxi home, when i had to stop and catch my breath coz it was really cold as well so that makes it extra harder. I ended up having a coughing fit, and coughing up a serious amount of blood. Cue freaking out!! I had never before coughed up that much, the most id ever coughed up before was a streak or two. Nothing huge at all! So to be stood outside the taxi rank coughing up loads of blood, and proper freaking out i was not in a good way. Thankfully i was with mum so she was helping me to keep calm and try to stop coughing so much to stop the blood. I got home and went to sleep on the sofa. As i had clinic the day after i didnt worry too much about ringing the hospital. I told them all when i got the hospital and they wanted me to go in that day but it wasnt really feasable as it meant going home to get things, and then coming all the way back. No way we could afford that or that i could manage it on the train again, i only just made it there in the first place!! So we agreed that id go home, they would ring every day to check on me, and if anything else happened or more blood then i would tell them and go in more than likely.
Just my luck i had my second episode of coughing up loads of blood again on monday evening. I woke up from sleeping on the sofa and was extremely hot from having a raging temperature, started coughing and had to run for the bathroom to cough up blood :| Not nice. I decided then to take a bag in with me to hospital the next day. I rang the clinic in the morning, left a message for the dr to ring me and left for my journey to hospital, thankfully again mum was with me, as she had rung up work and said she couldnt go in due to having to take me into hospital.
I was admitted that day, there was a right fiasco with waiting for the bed to get sorted, but i cant be bothered to go into that right now. I will say that i didnt get into my room until five to midnight tuesday, was severly pissed off and felt like total crap beyond words can describe!!
While in hospital i had my obs being done every hour as my heart rate was through the roof, so i ended up having to have an ECG and seeing the on call dr. She ordered me an xray, which i was finally taken down for around midnight wednesday night i think it was!! Not a happy bunny as i didnt get to bed until about 1am that night!! Once again pissed off. No wonder my heart rate was through the roof!
I was being ploughed with paracetamol as my temp went up to 39 degrees! I was freezing one minute, dripping with sweat the next!! Couldnt win, rather uncomfy as well :(
My sats were sitting around 90 which granted isnt as low as some peoples ive seen, but its very unusual for them to be like that, so they put me on 2 litres of oxygen as well. First time ive ever been on oxygen and so i was a little freaked out by it all! The tube thing is SO annoying to go to sleep wearing :| and as that was when my sats dropped even more i had to sleep with it on. Thankfully by Thursday i hadnt coughed up any more blood since admission due to some nifty tablets i was put on to help stop the bleeeding and settle my chest, my temp was a bit more stable without paracetamols, my heart rate was down to 118, still not great but thats normal for me really. Also my sats were sitting comforatably around 97 again without oxygen.
Dr came to see me on friday morning, as i was finally awake when they did rounds. and said that i was looking so much better since she saw me on admission day, and to be perfectly honest i felt so much better!! i had slept a fair amount which i deffinetly think helped me loads. Sleep is the best medicine... as well as laughter :p
So it was agreed that i could go home that day, and as i still had all my IV stuff at home it was the shortest discharge in history :D
Im still not better, and im still on IVs, but i am feeling SO much better now!! Im still sleeping a lot, but thats okay. My appetite is picking up loads as well which is great! Ive got a long way to go, to feeling miles better that i want to feel but i think ill get there eventually...
Wednesday, 1 December 2010
Feeling pretty rubbish :(
Im feeling so rubbish these past few weeks. I was doing really well months ago, then i got a cold and since then everything has just been pretty crap. And now ive got another cold. Perfect.
Its not as bad as the last one, but its still knocking me for six. Im still doing the gym, im really pushing myself there coz i want all this junk off my chest so i can breath a bit better again! I am doing well at the gym, ive done a bit of everything on my training plan now, a lot of cardio and some weights as well. Which granted im lifting the weight of a feather but that doesnt bother me really as i knew i was pretty weak, plus from all the joint pain i get, ive got lasting effects of it and my wrists are quite weak :| Ah the joys of CF! But its helping me to cough up loads of this crap on my chest, which is good, but its quite bad theres so much down there! :( I feel a round of IV's coming on.
Im so knackered! Im doing gym, and coursework and the occaisional day at Uni, which im usually pretty shattered for by the time i get there as i have to get up quite early, get a train, and then wait in the freezing cold until the bus decides to turn up. So im quite shocked i manage to just about stay awake in the lectures i do manage to get to! Granted gym, coursework and Uni doesnt sound like much to be doing, but when thats all im doing day in day out, it gets tedious and knackering after a while. Especially when you cant switch off at night to sleep properly :(
Coursework at the moment is a total joke. Ive got my digital media project going on which is basically my dissertation, then ive got a consultany project with a real client outside of the Uni with a group of other people. Another assignment that i have to have done for the 9th and ive got NO idea what the hell im doing for it, and another one due in on the 16th which is a series of mini projects ive been doing since like October or something. But the specifications we get for these assignments are made over techinical when theres absolutely no need for that, and then the tutors get all grumpy when so many students ask questions about everything! If they actually put things we needed to know in the spec we wouldnt have to clearly bother them with our queries.
Tomorrow im supposed to be handing in a 3000 word research report and also doing a presentation showing off a prototype of my media project so far. This im not looking forward to, and at this rate im not going to be able to do the presentation, 'coz ive got really bad chest pains and it hurts to breathe, move, cough, sneeze, hiccup, you name it and im practically crying with the pain at some points! It started at the weekend and then went away on tuesday so i was able to do the gym, and today its come back with vengance :( Not happy.
At least ive got hospital on friday, which is good and bad. Last time i went my lung function was down to 45% because of that annoying cold i had gotten last time. Then i think i had gotten some lung function back but now ive got another stupid cold my chest sounds like a car engine that wont start.Whether that has killed my lung function i thought i had gained i dont know, guess well find out on friday! Hopefully i will have gained weight tho, ive been eating mum out of house and home haha! I have noticed my energy has picked up a little bit, which usually only happens with weight gain for me more than a gain in lung function. Though i still dont want to get out of bed in the mornings, but thats only more because its freezing!! haha!
On a more happy note, ive had my hair cut :) It was getting really long which is what i wanted but it was getting unmanagable to wash it and comb it and general care of my hair. So i had it cut to just below my shoulders and styled a bit as well. I'll put a picture up soon, as well as a pic of my new tatt :D I had it done weeks ago, but its not long finished healing so it looks better for a picture now. I always find the smaller tattoos take longer to heal than the large ones ive had done. Weird.
Right better get on with this coursework :|
Its not as bad as the last one, but its still knocking me for six. Im still doing the gym, im really pushing myself there coz i want all this junk off my chest so i can breath a bit better again! I am doing well at the gym, ive done a bit of everything on my training plan now, a lot of cardio and some weights as well. Which granted im lifting the weight of a feather but that doesnt bother me really as i knew i was pretty weak, plus from all the joint pain i get, ive got lasting effects of it and my wrists are quite weak :| Ah the joys of CF! But its helping me to cough up loads of this crap on my chest, which is good, but its quite bad theres so much down there! :( I feel a round of IV's coming on.
Im so knackered! Im doing gym, and coursework and the occaisional day at Uni, which im usually pretty shattered for by the time i get there as i have to get up quite early, get a train, and then wait in the freezing cold until the bus decides to turn up. So im quite shocked i manage to just about stay awake in the lectures i do manage to get to! Granted gym, coursework and Uni doesnt sound like much to be doing, but when thats all im doing day in day out, it gets tedious and knackering after a while. Especially when you cant switch off at night to sleep properly :(
Coursework at the moment is a total joke. Ive got my digital media project going on which is basically my dissertation, then ive got a consultany project with a real client outside of the Uni with a group of other people. Another assignment that i have to have done for the 9th and ive got NO idea what the hell im doing for it, and another one due in on the 16th which is a series of mini projects ive been doing since like October or something. But the specifications we get for these assignments are made over techinical when theres absolutely no need for that, and then the tutors get all grumpy when so many students ask questions about everything! If they actually put things we needed to know in the spec we wouldnt have to clearly bother them with our queries.
Tomorrow im supposed to be handing in a 3000 word research report and also doing a presentation showing off a prototype of my media project so far. This im not looking forward to, and at this rate im not going to be able to do the presentation, 'coz ive got really bad chest pains and it hurts to breathe, move, cough, sneeze, hiccup, you name it and im practically crying with the pain at some points! It started at the weekend and then went away on tuesday so i was able to do the gym, and today its come back with vengance :( Not happy.
At least ive got hospital on friday, which is good and bad. Last time i went my lung function was down to 45% because of that annoying cold i had gotten last time. Then i think i had gotten some lung function back but now ive got another stupid cold my chest sounds like a car engine that wont start.Whether that has killed my lung function i thought i had gained i dont know, guess well find out on friday! Hopefully i will have gained weight tho, ive been eating mum out of house and home haha! I have noticed my energy has picked up a little bit, which usually only happens with weight gain for me more than a gain in lung function. Though i still dont want to get out of bed in the mornings, but thats only more because its freezing!! haha!
On a more happy note, ive had my hair cut :) It was getting really long which is what i wanted but it was getting unmanagable to wash it and comb it and general care of my hair. So i had it cut to just below my shoulders and styled a bit as well. I'll put a picture up soon, as well as a pic of my new tatt :D I had it done weeks ago, but its not long finished healing so it looks better for a picture now. I always find the smaller tattoos take longer to heal than the large ones ive had done. Weird.
Right better get on with this coursework :|
Monday, 22 November 2010
Gym
I'm not sure if I've mentioned this already but I've been able to start at my local gym! After months of going between different people to get it organised, its all sorted nearly and I've started :)
In fact I've just got back about 1/2 an hour ago from a session there. I impressed my trainer to no end and shocked myself as well because i managed half an hour of exercise today :D Usually i get to ten mins and I'm huffing and puffing for breath and just cant do any more!
I'm not saying it wasn't easy as pie, far from it in fact. I had a massive coughing fit and had to try not to throw up like usually happens at home. Thankfully i managed to control it and was able to get on with more exercise.
My dehydration levels go through the roof more than they normally do, and i think i got through one and a half bottles of water in just half an hour. Drinking more as well now I'm home, so trying to manage that while exercising it proving a small challenge as i forget I've got water there to drink haha!
I managed 6 mins on two different cardio machines, and did two reps of ten on the two different weight machines. So all in all pretty amazed at myself really :)
I'm booked in for twice next week as i really want to get more into this and start feeling the benefits!
Ive got my next appointment on the 3rd December, and so if my lung function has gone up ill be extremely happy!! Its 45% at the mo, and i would love to gain even just 5% back and take it in small steps like that. But then if i get back over 5% that's just a bonus!!
Time shall only tell...
In fact I've just got back about 1/2 an hour ago from a session there. I impressed my trainer to no end and shocked myself as well because i managed half an hour of exercise today :D Usually i get to ten mins and I'm huffing and puffing for breath and just cant do any more!
I'm not saying it wasn't easy as pie, far from it in fact. I had a massive coughing fit and had to try not to throw up like usually happens at home. Thankfully i managed to control it and was able to get on with more exercise.
My dehydration levels go through the roof more than they normally do, and i think i got through one and a half bottles of water in just half an hour. Drinking more as well now I'm home, so trying to manage that while exercising it proving a small challenge as i forget I've got water there to drink haha!
I managed 6 mins on two different cardio machines, and did two reps of ten on the two different weight machines. So all in all pretty amazed at myself really :)
I'm booked in for twice next week as i really want to get more into this and start feeling the benefits!
Ive got my next appointment on the 3rd December, and so if my lung function has gone up ill be extremely happy!! Its 45% at the mo, and i would love to gain even just 5% back and take it in small steps like that. But then if i get back over 5% that's just a bonus!!
Time shall only tell...
Thursday, 11 November 2010
Feeling Good :D
I'm feeling pretty good these past few days, so im taking the opportunity to write a blog about and make it a bit happier for a change :p
Ive finally been able to start at the gym near me!! Ive only done two work outs there so far and as my personal trainer is off for 5 days now im not back until the 16th. But those two days already have given me the chance to feel like my old self again!! Ive had energy that ive not known what to do with, granted im not waking up and jumping out of bed yet, but its a tiny step towards that! Though not being a morning person i doubt ill ever be bounding out of bed with energy haha! :)
My personal trainer is so nice! I had a consultation with him and explained about having CF and he wrote pretty much everything down that i said, and we filled out some questionnaire thing together to find out more about my condition and for their records as well. I was for once in my life, honest about how CF affects me and what it is and everything like that. I usually try to dull it all down as "just a bit of a manic cough" i think more to stop myself gettin all moppy about my reality, but i thought this is my reality. Im 21, its time i start accepting things properly and pulling my finger out my arse! So thats what im doing :) Im still struggling to get back into my old nebs routine, but im really getting there. Dave (my personal trainer) went away from the consultation meeting and did lots of research about CF and all the meds that im on and everything, so hes properly clued up! This really settled me. Im usually like most CFers i think pretty embarressed about the whole coughing up lovely looking mucus and things like that, but hes always on hand for tissues, making sure im getting it out like im meant to, making sure im hydrated and not pushing myself too much, but just enough to get things working.
I have problems with not knowing my limits, and then if i do know my limits with something i ignore them and push on anyway. It gets me into problems a lot. But hes keeping me in check! Making sure i start off small bits and working my way up to longer exercise routines. I managed 10mins in my first session and then 15 mins in my second session. I felt a bit pathetic after that first session for only having been able to manage just a meger 10mins of exercise, but he said that its 10mins of exercise i didnt do yesterday and so thats something to be pleased of! I was still a bit annoyed at myself, but i think that it was just my stubborness of not recognising my limits showing through, as after i finished the 15mins session i was really pleased that i had managed to go for 5 mins longer than before! Im aiming for 20mins next time.
We've set a target of 55% lung function to be reached by my next hospital appointment, which is in December on the 3rd. Im 45% at the mo, so a 10% gain is a realistic goal that i feel i can reach! Im so happy :)
Im also feeling inspired lately, which is helping me with my Uni work! Im doing a lot more sketches of random layouts for sites, and i just dug all my old art and crafts stuff out my cupboard and feeling even more inspired to get back into my creative self.
I honestly hadn't realised how much i had changed lately and just seemed to stop bothering with anything that made me happy, as i guess i didnt see the point for some reason. But last night i was feeling the happiest ive felt in a long time, and i was making mum laugh by being the idiot that i am :) and she said that it was good to see me getting back to my old self. Apparently i had been really moody and sad a lot lately and i hadn't noticed.
Its amazing what a bit of exercise can do for you! Can't wait to get back to the gym next week!
Now all i need is for the weather to clear up so i can get out and take some pretty pics with my new camera!!
Ive finally been able to start at the gym near me!! Ive only done two work outs there so far and as my personal trainer is off for 5 days now im not back until the 16th. But those two days already have given me the chance to feel like my old self again!! Ive had energy that ive not known what to do with, granted im not waking up and jumping out of bed yet, but its a tiny step towards that! Though not being a morning person i doubt ill ever be bounding out of bed with energy haha! :)
My personal trainer is so nice! I had a consultation with him and explained about having CF and he wrote pretty much everything down that i said, and we filled out some questionnaire thing together to find out more about my condition and for their records as well. I was for once in my life, honest about how CF affects me and what it is and everything like that. I usually try to dull it all down as "just a bit of a manic cough" i think more to stop myself gettin all moppy about my reality, but i thought this is my reality. Im 21, its time i start accepting things properly and pulling my finger out my arse! So thats what im doing :) Im still struggling to get back into my old nebs routine, but im really getting there. Dave (my personal trainer) went away from the consultation meeting and did lots of research about CF and all the meds that im on and everything, so hes properly clued up! This really settled me. Im usually like most CFers i think pretty embarressed about the whole coughing up lovely looking mucus and things like that, but hes always on hand for tissues, making sure im getting it out like im meant to, making sure im hydrated and not pushing myself too much, but just enough to get things working.
I have problems with not knowing my limits, and then if i do know my limits with something i ignore them and push on anyway. It gets me into problems a lot. But hes keeping me in check! Making sure i start off small bits and working my way up to longer exercise routines. I managed 10mins in my first session and then 15 mins in my second session. I felt a bit pathetic after that first session for only having been able to manage just a meger 10mins of exercise, but he said that its 10mins of exercise i didnt do yesterday and so thats something to be pleased of! I was still a bit annoyed at myself, but i think that it was just my stubborness of not recognising my limits showing through, as after i finished the 15mins session i was really pleased that i had managed to go for 5 mins longer than before! Im aiming for 20mins next time.
We've set a target of 55% lung function to be reached by my next hospital appointment, which is in December on the 3rd. Im 45% at the mo, so a 10% gain is a realistic goal that i feel i can reach! Im so happy :)
Im also feeling inspired lately, which is helping me with my Uni work! Im doing a lot more sketches of random layouts for sites, and i just dug all my old art and crafts stuff out my cupboard and feeling even more inspired to get back into my creative self.
I honestly hadn't realised how much i had changed lately and just seemed to stop bothering with anything that made me happy, as i guess i didnt see the point for some reason. But last night i was feeling the happiest ive felt in a long time, and i was making mum laugh by being the idiot that i am :) and she said that it was good to see me getting back to my old self. Apparently i had been really moody and sad a lot lately and i hadn't noticed.
Its amazing what a bit of exercise can do for you! Can't wait to get back to the gym next week!
Now all i need is for the weather to clear up so i can get out and take some pretty pics with my new camera!!
Wednesday, 3 November 2010
days like today...
I had a hospital appointment on friday just gone (29th October) and i knew it wasnt going to go well weeks before the date even arrived. Partly my own fault and partly due to the cold weather starting to set in and that always makes me rougher than normal. At my last appointment i had 55% lung function and that was the best it had been since May this year! Hence them being happy and didnt need to see my until 3 months later, which was the 29th Oct appointment. My lung functions now down to 45% and my weight has dropped .6 of a kg... now making me weigh in at about 47kg! Light as a feather.
I had to see a "doctor" i dont like. I say doctor in quote marks as i dont think she is a real CF doc, not like the other one i see. I really dont like her, i find her so patronising and she doesnt listen one bit. Not the best thing to not listen to the patient when surely they are the best ones to know really how they are feeling?!
Anyway i had a right attitude problem with her and with the dietician as thats what happens with me, if i dont like them my attitude comes out loud and clear and im not a pleasant person at all.
Sometimes i feel a bit bad when i know they are just trying to do their jobs, but then when they ask me stupid questions like "so do you have an increased cough?" after ive just told her how bad ive been lately with not doing nebs and things and also seeing that my l.f has dropped a further 10%, i dont feel so bad any more.
The dietician tried to get me to talk to her about having NG feeding tubes. I told her the same as i told her when i was in hospital - no way! - i realise it would help me to gain weight considerably, but i just cant stomach (no pun intended) the thought of a tube being stuck up my nose, down my throat and into my stomach. I cant do it. Especially when my appetite is fine, granted i could do with eating a bit more but im doing the best i can right now with what appetite ive got. The dietician doesnt get that. She asked me if i was okay as i seemed a bit upset. At first i wasnt going to say anything, and then i found myself saying to her that she would be like this as well if she had someone constantly telling me that i need to gain weight! I told her its a lot easier said than done for a CF patient especially! She said she understands but i honestly dont think she does, and shell be giving me the same lecture next time about weight gain. And ill be giving her the same attitude.
So its days like today that really sucks. I feel shattered, even though i slept well, and i woke up coughing to the point where i just couldnt catch my breath. Its always really scary when that happens, feels like you just cant breath again and you'll pass out. Freaks me out. It must not look like a pretty sight for mum either.
Some days i have where im feeling really great, but they seem to be rare lately. Im always waking up during the night now coughing, and sometimes its hard to get comfy enough to get back to sleep. Also knowing that the alarm will go off soon doesnt help either...
This 45% lung function is grating my nerves. I feel crap all the time, no matter if i clear my chest quite well one day. Im shattered just walking up the stairs, which is beyond stupid! I could literally sleep all day right now, and still be shattered beyond belief. I finished Uni today at 1pm, and i got home around 2.45ish. I had to get some meds from the pharmacy but mum ended up going up for me, as would be much quicker. When she was out i fell asleep totally unintentionally on the sofa! I only woke up as i heard the keys in the door.
Im stacked up full now with coursework. Im doing 5 modules - all compulsory so no chance of dropping something - and ive got a piece for each one now. The due dates are fairly well spread out, but thats because they are big pieces of work that require me to do a bit on them each day... this hasnt exactly gone to plan as im totally unmotivated from being shattered all the time and i feel like a bag of crap 24/7. This means im heading a bit into "panic mode" and unless i can catch up im screwed. With the uni im at, its hand in your work on time or fail. Simple as that, no extentions for people who deserve/really need it such as myself. You can hand in an extenuating circumstances form, which basically means they'll go a bit more easy on grading your work coz itll be a bit slack compared to others on the course, but thats about all it does. So pretty much fuck all really. Id honestly rather have my work capped at 40% and be allowed an extention than just have "a leniant marking criteria". It was all grand in the first year as we had a 24 hour window and also a 10 day window and if you handed in extenuating circumstances it was a case of, "okay do the work, and use the 10 day extention window and you'll be fine", ten days doesnt sound an awful lot but for me it was usually the difference between 40% and 80% or something. But they took all that away at the beginning of year 2 as apparently all the other uni's didnt do things like that. Who gives a crap about the other uni's!?!
So its back to the usual "You really need IVs" which is what it was on the 29th, and me replying with "can't. wont. uni work really important, cant afford time off at home on ivs or in hospital on ivs." Them being all moody and giving me the speech of "well we can write you a letter, were just looking out for your best interests health wise".
Which i totally get, they are just doing their job. But this is my future im trying to get a pass for. At this rate ill be surprised if i even graduate! I realise i dont really have a future without my health blah blah.... but with the uni not being helpful when i go on IVs and into hospital, what other choices apart from failing have i got?! And as much as i appreciate the letter writing from the hospital and any other help they offer me, it just doesnt cut it because of the Uni's regulations that do shit all for the students in my position. This isnt primary school where i can have a note written to get me out of P.E. that day/week.
Honestly sometimes i really wish id never bothered with Uni. :(
Anway this is a long post already, and my finger joints are screaming at me more so from typing so much, so ill call it a day...
I had to see a "doctor" i dont like. I say doctor in quote marks as i dont think she is a real CF doc, not like the other one i see. I really dont like her, i find her so patronising and she doesnt listen one bit. Not the best thing to not listen to the patient when surely they are the best ones to know really how they are feeling?!
Anyway i had a right attitude problem with her and with the dietician as thats what happens with me, if i dont like them my attitude comes out loud and clear and im not a pleasant person at all.
Sometimes i feel a bit bad when i know they are just trying to do their jobs, but then when they ask me stupid questions like "so do you have an increased cough?" after ive just told her how bad ive been lately with not doing nebs and things and also seeing that my l.f has dropped a further 10%, i dont feel so bad any more.
The dietician tried to get me to talk to her about having NG feeding tubes. I told her the same as i told her when i was in hospital - no way! - i realise it would help me to gain weight considerably, but i just cant stomach (no pun intended) the thought of a tube being stuck up my nose, down my throat and into my stomach. I cant do it. Especially when my appetite is fine, granted i could do with eating a bit more but im doing the best i can right now with what appetite ive got. The dietician doesnt get that. She asked me if i was okay as i seemed a bit upset. At first i wasnt going to say anything, and then i found myself saying to her that she would be like this as well if she had someone constantly telling me that i need to gain weight! I told her its a lot easier said than done for a CF patient especially! She said she understands but i honestly dont think she does, and shell be giving me the same lecture next time about weight gain. And ill be giving her the same attitude.
So its days like today that really sucks. I feel shattered, even though i slept well, and i woke up coughing to the point where i just couldnt catch my breath. Its always really scary when that happens, feels like you just cant breath again and you'll pass out. Freaks me out. It must not look like a pretty sight for mum either.
Some days i have where im feeling really great, but they seem to be rare lately. Im always waking up during the night now coughing, and sometimes its hard to get comfy enough to get back to sleep. Also knowing that the alarm will go off soon doesnt help either...
This 45% lung function is grating my nerves. I feel crap all the time, no matter if i clear my chest quite well one day. Im shattered just walking up the stairs, which is beyond stupid! I could literally sleep all day right now, and still be shattered beyond belief. I finished Uni today at 1pm, and i got home around 2.45ish. I had to get some meds from the pharmacy but mum ended up going up for me, as would be much quicker. When she was out i fell asleep totally unintentionally on the sofa! I only woke up as i heard the keys in the door.
Im stacked up full now with coursework. Im doing 5 modules - all compulsory so no chance of dropping something - and ive got a piece for each one now. The due dates are fairly well spread out, but thats because they are big pieces of work that require me to do a bit on them each day... this hasnt exactly gone to plan as im totally unmotivated from being shattered all the time and i feel like a bag of crap 24/7. This means im heading a bit into "panic mode" and unless i can catch up im screwed. With the uni im at, its hand in your work on time or fail. Simple as that, no extentions for people who deserve/really need it such as myself. You can hand in an extenuating circumstances form, which basically means they'll go a bit more easy on grading your work coz itll be a bit slack compared to others on the course, but thats about all it does. So pretty much fuck all really. Id honestly rather have my work capped at 40% and be allowed an extention than just have "a leniant marking criteria". It was all grand in the first year as we had a 24 hour window and also a 10 day window and if you handed in extenuating circumstances it was a case of, "okay do the work, and use the 10 day extention window and you'll be fine", ten days doesnt sound an awful lot but for me it was usually the difference between 40% and 80% or something. But they took all that away at the beginning of year 2 as apparently all the other uni's didnt do things like that. Who gives a crap about the other uni's!?!
So its back to the usual "You really need IVs" which is what it was on the 29th, and me replying with "can't. wont. uni work really important, cant afford time off at home on ivs or in hospital on ivs." Them being all moody and giving me the speech of "well we can write you a letter, were just looking out for your best interests health wise".
Which i totally get, they are just doing their job. But this is my future im trying to get a pass for. At this rate ill be surprised if i even graduate! I realise i dont really have a future without my health blah blah.... but with the uni not being helpful when i go on IVs and into hospital, what other choices apart from failing have i got?! And as much as i appreciate the letter writing from the hospital and any other help they offer me, it just doesnt cut it because of the Uni's regulations that do shit all for the students in my position. This isnt primary school where i can have a note written to get me out of P.E. that day/week.
Honestly sometimes i really wish id never bothered with Uni. :(
Anway this is a long post already, and my finger joints are screaming at me more so from typing so much, so ill call it a day...
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