I sat my first exam yesterday! It was an early morning one, which was all fine when i lived in Bristol last year, but this year I've lived at home for health conveniences and so i have to get a train and buses to get to Uni if i need to go.
There was no way i would be able to manage on my own as the connections for the buses when i got off the train were a bit hurried and i just cant do "hurry" right now. Hopefully i will again soon!
So mum came with me and we took the wheelchair that I'm hiring for 6 weeks from the red cross. I didn't initially want to take the wheelchair as i didn't want my friends to see me in one, i know that sounds a bit stupid, but who does want their friends to see them like that really? It just accentuates how different you are from your friends, how different your life is to their "normal" healthy one.
But i thought about it in the days leading up to my exam morning and i realised i wouldn't be able to cope walking so it was really in my best interest to use the wheelchair, i mean what else did we hire it out for if I'm not going to use it! So yesterday we got up at 5am, and the taxi we had booked arrived at 6am as we had to get the first train at 6.40am to be able to get there on time.
Although it only takes 1/2 an hour via train from mine to Bristol we had to get that train so we could make the buses that would get us there on time, if we got a later train we wouldn't get the buses on time as their timetables don't coincide with each other. So we ended up getting to Uni for like 8.10am or something like that and my exam was at 9.30am 'till 11.30am.
Me and mum went to one of the cafes on campus and i had a friend come up and meet me so i had someone to walk over the exam room with, as that wasn't far and was on relatively flat land so would be easier. I bought mum a coffee and a danish cake before i left for my exam and then went back to her after my exam was finished. Its lucky my exam was only two hours and not three like Fridays will be 'coz mum looked pretty bored when i got back ha ha! She couldn't really explore the uni as she had the wheelchair with her.
My exam was okay i suppose, i do think it will be a resit as it was a case of i knew the questions and it was things id revised (which made a nice change) but i couldn't for the life of me clear my head enough to remember stuff from my revision to answer them :( I tried my best and I'm trying to instill that "that's the best anyone and myself can ask for" saying into my head so i don't feel too rotten about it. At least this year i have managed to get some extenuating circumstances for my exams and my previous courseworks so if i do need to resit any exams or coursework then i wont have to pay for it and it wont be capped either! :)
Ive just got Fridays three hour (fun) exam to get out the way with then and its just 2 group presentations then at the end of the month which i think we've all pretty much prepared for and just have a little bit left to do on them which is good! If i do have resits to do, which i am expecting to, not because i don't have confidence in myself this year, but because i had so much interruptions during third year i didn't really "learn" anything properly if that makes sense... then it means i wont be graduating in July i think it was but instead it will happen in November. Which isn't too bad, as long as i graduate at *some* point this year i don't really mind!!
Being in the wheelchair its given me a different perspective on CF and my life in general. Its making me want to walk a bit more so that's good! I am trying to get up to get myself a drink or food instead of asking mum to get me something, unless its something large that needs cooking, i havn't quite gotten there yet. Though i did manage to make scrambled egg on toast the other morning and i'm still alive :D Ive never had much success with cooking eggs myself ha ha!
I said about being on overnight oxygen in a previous blog and i said that its making my chest looser in the mornings, but i wasn't sure if that was due to the oxygen or not. But I'm beginning to think its a combination of that and the bumpy roads we sometimes have to go over in the wheelchair, its shaking up my chest like a fizzy bottle and this morning I'm clearly so much junk its great! Its a bit dark tho which in the past usually signifies that I've got an infection or one brewing at least, so ill have to step things up for a bit and see how things are at next clinic. I'm back at the gym now and told my trainer i want to do some weights as well now along with cardio and so i did a small circuit the other day and I'm back tomorrow morning when well work in some cardio to my weights circuit :) Were starting gentle again as i had a month off for various reasons and coz i don't last for exercise for very long at the moment, but hopefully i can build up my tolerance.
Anyway better get back to my revision :| Ill be glad when its Friday 5pm as that's when my exam finishes and I'm free!! Sort of :p
Wednesday 11 May 2011
Sunday 8 May 2011
Changes and revision
Im taking a nice break from revision to write this posting :)
Ive not gotten as much done revision wise today as i would have hoped/wanted too, but ive been SUPER tired all day. I got up at 8 something this morning because i had to. Miraculously jumped straight in the shower, got out and was ready to go back to sleep! Managed to finish sorting myself out and by 10am i was kipping on the sofa until 11am! Not how i wanted my morning to go, but i just couldnt keep my eyes open.
Eventually i managed to get some revision done, then i started to crash again after lunch. So me and mum went into town for some fresh air and some things we needed to get. And also some things i got that didnt really need to get but still did!
Ive got a wheelchair for 6 weeks that im hiring from the Red Cross. So we took me to town in that yesterday and today. I was a bit self conscious of being in it at first, as the only other times ive been in a wheelchair is when im an inpatient and being taken to x-ray or something, even then im self conscious. I think its because of the fact that i know i have the use of my legs, and im not saying all wheelchair users i see dont have the use of their legs, i know some do, and they are using the chair for unseen reasons perhaps, like myself. But walking for me lately is just ridiculously hard and im knackered after 1/2 an hour or some days less so things like shopping trips like we used to have been out of the question and most of the time i just wouldnt go out at all as i knew the pain i would be in when i did start walking.
Another recent change is that ive been put on home oxygen for during the night. I did an oximetry testing for a few nights at home and gave the machine back at my last clinic. The physio rang the other day to discuss the wheelchair options and talked about the oximetry results as well. Apparently my sats were dropping to around 90 most nights and my heart rate was usually in the hundreds. I think i remember looking at the machine once when i woke during the night and my heart rate was around 130! So not really normal... So even tho these results are borderline apparently of something they think that overnight oxygen would be of some benefit to me. Im on 1 litre and then in 6 weeks time they want me to do another set of oximetry tests i think using the oxygen and then they will reassess if needed depending on those results.
Im not sure how i feel about it all really. I mean i knew what the results would show as the things that the physios were saying that indicates a need for oxygen i am getting, and a lot was in the morning. Countless times ive woken up with a stuffy headache and blue nails.
Im worried that this is the "beginning" of oxygen needs and that theres more to go downhill from here now. I worried that my lungs will become dependant at night for this air and then suffer during the day when its taken away in the morning... We shall see how things go. At least im not coughing so much at night now!
Its only been 2 nights that ive used it so far as it was only all delivered on friday, but my chest is already nice and loose in the mornings. I dont know for a fact if this is because of the oxygen or because my lungs want to behave for a while, but its reducing my coughing fit in the morning which is reducing the either almost throw up or actually throwing up, and that cant be a bad thing!!
Theres not really anything else to report on i dont think. Mums taking the day off work for me on tuesday so she can take me to my exam as it starts at 9.30 and it means hurrying on trains and buses to get to the uni on time. At the moment i will be taking the wheelchair to make my life easier and mean i will be less knackered during my exam, but this could change ill see how i feel.
It does amaze me however the difference in the world you see when sat in a wheelchair and how much nicer everyone suddenly becomes! It also shocks me the places some people choose to suddenly stop in the middle of the path without bothering to see whos behind them! Very annoying.
*sigh* back to revision i suppose. Hope everyone who reads this is well and happy as they can be!
Ive not gotten as much done revision wise today as i would have hoped/wanted too, but ive been SUPER tired all day. I got up at 8 something this morning because i had to. Miraculously jumped straight in the shower, got out and was ready to go back to sleep! Managed to finish sorting myself out and by 10am i was kipping on the sofa until 11am! Not how i wanted my morning to go, but i just couldnt keep my eyes open.
Eventually i managed to get some revision done, then i started to crash again after lunch. So me and mum went into town for some fresh air and some things we needed to get. And also some things i got that didnt really need to get but still did!
Ive got a wheelchair for 6 weeks that im hiring from the Red Cross. So we took me to town in that yesterday and today. I was a bit self conscious of being in it at first, as the only other times ive been in a wheelchair is when im an inpatient and being taken to x-ray or something, even then im self conscious. I think its because of the fact that i know i have the use of my legs, and im not saying all wheelchair users i see dont have the use of their legs, i know some do, and they are using the chair for unseen reasons perhaps, like myself. But walking for me lately is just ridiculously hard and im knackered after 1/2 an hour or some days less so things like shopping trips like we used to have been out of the question and most of the time i just wouldnt go out at all as i knew the pain i would be in when i did start walking.
Another recent change is that ive been put on home oxygen for during the night. I did an oximetry testing for a few nights at home and gave the machine back at my last clinic. The physio rang the other day to discuss the wheelchair options and talked about the oximetry results as well. Apparently my sats were dropping to around 90 most nights and my heart rate was usually in the hundreds. I think i remember looking at the machine once when i woke during the night and my heart rate was around 130! So not really normal... So even tho these results are borderline apparently of something they think that overnight oxygen would be of some benefit to me. Im on 1 litre and then in 6 weeks time they want me to do another set of oximetry tests i think using the oxygen and then they will reassess if needed depending on those results.
Im not sure how i feel about it all really. I mean i knew what the results would show as the things that the physios were saying that indicates a need for oxygen i am getting, and a lot was in the morning. Countless times ive woken up with a stuffy headache and blue nails.
Im worried that this is the "beginning" of oxygen needs and that theres more to go downhill from here now. I worried that my lungs will become dependant at night for this air and then suffer during the day when its taken away in the morning... We shall see how things go. At least im not coughing so much at night now!
Its only been 2 nights that ive used it so far as it was only all delivered on friday, but my chest is already nice and loose in the mornings. I dont know for a fact if this is because of the oxygen or because my lungs want to behave for a while, but its reducing my coughing fit in the morning which is reducing the either almost throw up or actually throwing up, and that cant be a bad thing!!
Theres not really anything else to report on i dont think. Mums taking the day off work for me on tuesday so she can take me to my exam as it starts at 9.30 and it means hurrying on trains and buses to get to the uni on time. At the moment i will be taking the wheelchair to make my life easier and mean i will be less knackered during my exam, but this could change ill see how i feel.
It does amaze me however the difference in the world you see when sat in a wheelchair and how much nicer everyone suddenly becomes! It also shocks me the places some people choose to suddenly stop in the middle of the path without bothering to see whos behind them! Very annoying.
*sigh* back to revision i suppose. Hope everyone who reads this is well and happy as they can be!
Tuesday 3 May 2011
Feeling Loved...
Or not so much in this case.
This posting is a little bit of a rant.
I'm still finishing up the last little bits of Uni work, and one of them being a team project for something called Consultancy Project. This is where we were given a real life client (compared to the previous year in a similar module where we were given a client from within the Uni) who needed something technical doing, whether that meant they wanted a database of something created and applied to their systems already in use, or just a new or redesign of their existing website we were given the task to do this as if we were doing this in real life and not for a Uni module.
Right now me and my team for this module are finishing up the last piece of written work for it which is the final report of how everything went, from the first initial meeting to the sign off and leg work afterwards. During a large part of what ill call "phase 3" i was incredibly ill and was either in hospital or at home resting and on IVs. Hence i couldn't attend Uni.
My team mates were incredibly understanding of which i thank them for immensely as theres nothing worse than non-understanding team mates about something totally beyond your control.
I managed still to keep up with the project progress and still managed to do some share of the work, but with either no Internet access when in hospital or no energy to barely type when at home i was very limited in what work i could do and how much of it i could do. My team did pick up a lot of the slack and for that we managed to stay on track and finish deadlines in time.
But towards the end of this project as I've not been able to go back from being unwell, the information about the project they have been telling me has been less and less. Now i find out theres a team meeting tomorrow and i found out through facebook of one of the team members. No one had bothered to tell me! I have improved somewhat from a few months ago and might have been able to prepare for a trip to Bristol if they had told me in advance, but they didn't even bother to see if i could attend.
It is only to put together the final report and i think to hand it in, but that's not really the point for me. I am still a member of that team and its like because I've been away from them for so long now due to being unwell, they have forgotten to include me in the project progression. It makes me wonder what else i don't even know about!
It has pissed me off a little and i think rightly so. Its not just Uni team mates for coursework that forget about me because i cant do what they all do so naturally, like move about so easily or even hell just breath so easily!! It really feels like its a case of "out of sight, out of mind".
Ive got no friends who ask me how i am (baring Emily, but shes a lot more than a friend, shes my person. Only she will understand that reference.), none of them visit/ed me in hospital when i was living with them. Once when Emily was just heading out the door to get the bus to come see me one evening in hospital one of the other housemates asked if she was going to see me, Em replied yes, thinking this person wanted to come as well, but was instead handed some coursework for me to complete from her. They were not doing anything and i know they had the time to come and see me, and its not as if they could complain about bus fare as they had a free bus pass from the uni for a bus that stopped right outside the dam hospital i was in!
I guess the ranting point I'm trying to make is, that the sicker i get (and I'm sure this applies for other CFers as well) the less my so called friends want to know me. Its like its too much effort for them to have a disabled friend i guess, for them to have a friend who needs a bit of extra care and help sometimes. It really disgusts me sometimes, how selfish, and dam right two faced some people can be. If the tables were turnt on some of the people i know, they would be stamping their feet for not getting enough attention and heart felt crys of sorrow for their impossible situation of ill health!!
Because God forbid they should be "out of sight, out of mind".
Thank god for my Mum and Emily. At least i know I've got at least 2 true friends in this life and world.
This posting is a little bit of a rant.
I'm still finishing up the last little bits of Uni work, and one of them being a team project for something called Consultancy Project. This is where we were given a real life client (compared to the previous year in a similar module where we were given a client from within the Uni) who needed something technical doing, whether that meant they wanted a database of something created and applied to their systems already in use, or just a new or redesign of their existing website we were given the task to do this as if we were doing this in real life and not for a Uni module.
Right now me and my team for this module are finishing up the last piece of written work for it which is the final report of how everything went, from the first initial meeting to the sign off and leg work afterwards. During a large part of what ill call "phase 3" i was incredibly ill and was either in hospital or at home resting and on IVs. Hence i couldn't attend Uni.
My team mates were incredibly understanding of which i thank them for immensely as theres nothing worse than non-understanding team mates about something totally beyond your control.
I managed still to keep up with the project progress and still managed to do some share of the work, but with either no Internet access when in hospital or no energy to barely type when at home i was very limited in what work i could do and how much of it i could do. My team did pick up a lot of the slack and for that we managed to stay on track and finish deadlines in time.
But towards the end of this project as I've not been able to go back from being unwell, the information about the project they have been telling me has been less and less. Now i find out theres a team meeting tomorrow and i found out through facebook of one of the team members. No one had bothered to tell me! I have improved somewhat from a few months ago and might have been able to prepare for a trip to Bristol if they had told me in advance, but they didn't even bother to see if i could attend.
It is only to put together the final report and i think to hand it in, but that's not really the point for me. I am still a member of that team and its like because I've been away from them for so long now due to being unwell, they have forgotten to include me in the project progression. It makes me wonder what else i don't even know about!
It has pissed me off a little and i think rightly so. Its not just Uni team mates for coursework that forget about me because i cant do what they all do so naturally, like move about so easily or even hell just breath so easily!! It really feels like its a case of "out of sight, out of mind".
Ive got no friends who ask me how i am (baring Emily, but shes a lot more than a friend, shes my person. Only she will understand that reference.), none of them visit/ed me in hospital when i was living with them. Once when Emily was just heading out the door to get the bus to come see me one evening in hospital one of the other housemates asked if she was going to see me, Em replied yes, thinking this person wanted to come as well, but was instead handed some coursework for me to complete from her. They were not doing anything and i know they had the time to come and see me, and its not as if they could complain about bus fare as they had a free bus pass from the uni for a bus that stopped right outside the dam hospital i was in!
I guess the ranting point I'm trying to make is, that the sicker i get (and I'm sure this applies for other CFers as well) the less my so called friends want to know me. Its like its too much effort for them to have a disabled friend i guess, for them to have a friend who needs a bit of extra care and help sometimes. It really disgusts me sometimes, how selfish, and dam right two faced some people can be. If the tables were turnt on some of the people i know, they would be stamping their feet for not getting enough attention and heart felt crys of sorrow for their impossible situation of ill health!!
Because God forbid they should be "out of sight, out of mind".
Thank god for my Mum and Emily. At least i know I've got at least 2 true friends in this life and world.
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