I don't know what this blog is about exactly but i need to clear my head somehow.
Its like my head is really full up with everything and i just cant clear my head. Its affecting my sleep, and stressing me out so now i can feel myself going down hill again just when id been making some good progress. Progress which the hospital didn't see as its all happened between appointments and so i know they wont fully believe me that things did improve for a while.
I'm stuck in a slump and once again I'm not sure how to get out of it. I have everything in my head on a "i could do this tomorrow" sort of list, but i just keep waking up and thinking "oh good, same crap, different day." Which is not how i want to be waking up! The weekends are better as i know I've got company 'coz mums not at work. I'm extremely looking forward to the summer holidays that the schools have just so mums at home and I've got someone to spend time with and do things with!
I'm really trying to get myself back onto my schedule of Neb's etc, I'm just finding it hard to get motivated. You think the fact that i know not doing my treatments regularly will make me worse would be something to motivate me. I don't want to end up on a transplant list, i don't want to get sicker than i already am, i want to do so much with my life, but at the moment i just cant get motivated or energised to do anything! All i seem to be able to do is sit around in my pj's all day, and I'm either just plain emotional and wanting to cry all the time over heaven knows what, or i just feel really angry at everything. Literally everything including my oxygen tubing, i got so pissed off with it the other night, being so hot on my face and being uncomfy with it i ripped it off my face and threw it across the room.
I want to know people but i don't know how to go about it because I'm not confident to go out on my own lately 'coz all i do is choke and stop every 5 mins. I hate being stared at like I've got some catching disease or something.
Maybe i just need to start writing things down a lot more, not always on here, some things i feel are too personal to put on here. Besides i don't actually think anyone really reads this blog apart from one person i know of.
Sometimes i wonder whats the point.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Thursday, 9 June 2011
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.
Saturday, 30 April 2011
Get up and go
A while ago, my "get up and go" got up and went completely. I was pretty ill for my standards for i would say a good few months and its left me with a lot of issues i didn't have to deal with before, like 38% lung function and 45kg in weight.
But the past few weeks i think its been coming back. Albeit slowly yes, but its getting there. I think the sunshine has helped, i hate Winter, it does nothing for me at all except hospitalise me or house bound me further as the cold now makes my lungs bleed a great deal and that freaks me out no matter how many times its happened! But i think that feeling is the same for most people when they cough up blood...
Ive started doing my dnase again in the mornings, I'm able to wake up and actually get up earlier which means i don't get a headache all day from being in a hot room and sleeping all morning. It also means i can have breakfast which means more calories to take in each day :)
In the evenings now as its usually quite nice me and mum go out for a walk, its not long walks across the fields, usually just around the block as that's all i can handle right now. But i want to build it up, i desperately want some strength back in my lungs! The walk does help me, i can clear a lot sometimes, other times not so much but that's okay.
I am still going to get a wheelchair, I'm waiting for the team member who deals with that sort of thing to get back to me about it, as i still cant handle long day trips out, and that's bothering me a lot more than not being able to walk to town right now, as its not fair on mum, especially when she breaks up for summer holidays (she works in a school so she gets all the holidays they do which is really nice). So well mainly be using the wheelchair for when were wanting to go further afield for shopping or a day out or something. I might use it if I'm having a particularly bad day and we still want to go to town, but otherwise i would still like to walk about town. I don't want to become reliant on it as then ill get no where with getting myself fitter.
I'm going back to the gym, i just need to book some appointments in with my trainer and i want to start doing walking on the treadmill on a slight incline, some time on the bike and i want to start doing some light weights again so i can start defining some muscle and not have stick legs come summer time :p Plus if i can develop some muscle it might add some weight on me as well, as muscle is heavier than fat! That will shut my dietician up, its my mission in life right now to prove to her i can do this weight gain on my own, i just need her to stop mentioning all the time when she sees me how thin i am, and how i need the PEG. I think if she mentions it at the next appointment i will explode at her. I still don't think that the dieticians understand one bit how hard it is for a CFer to gain weight, no matter if they eat 14 KFCs each week or something extreme like that. Just because they might specialise in CF doesn't mean they understand it for how it is for the actual patient, no matter how much the patient tries to explain it... Rant over :p
I went to town today, and for the first time in a while i didn't feel sick and need to sit down every 5mins! I was able to stand and walk around the shops, still at a snails pace which i think annoyed people who got stuck behind me but never mind!
I'm beginning to think that i have an addiction to buying PJ's. I got some Animal PJ's from Peacocks today, its a t-shirt type top with Animal on it, and the trousers to match which have images of him on there and the word Animal down one of the legs :) I also hate my neck and top of my chest getting cold and as i wear a lot of vest type tops i find myself wearing my scarf still if I'm outside and its breezy, so mum took me to the outdoor market today and i got some of them better, fashionable scarfs that everyone wears. I got two for £10, which is better as i was going to get one in New Look that would have cost me £8 so i saved some money there :) Now i cant stop wearing them! One is a black one with a pattern stitched in white and its got some feint reddy brown stitching going through it as well, and the other is white with lots of "blobs" of color all over it. Ill try and put some pics up later if i remember!
Anyway I've rambled enough now, i better get on with some revision!
But the past few weeks i think its been coming back. Albeit slowly yes, but its getting there. I think the sunshine has helped, i hate Winter, it does nothing for me at all except hospitalise me or house bound me further as the cold now makes my lungs bleed a great deal and that freaks me out no matter how many times its happened! But i think that feeling is the same for most people when they cough up blood...
Ive started doing my dnase again in the mornings, I'm able to wake up and actually get up earlier which means i don't get a headache all day from being in a hot room and sleeping all morning. It also means i can have breakfast which means more calories to take in each day :)
In the evenings now as its usually quite nice me and mum go out for a walk, its not long walks across the fields, usually just around the block as that's all i can handle right now. But i want to build it up, i desperately want some strength back in my lungs! The walk does help me, i can clear a lot sometimes, other times not so much but that's okay.
I am still going to get a wheelchair, I'm waiting for the team member who deals with that sort of thing to get back to me about it, as i still cant handle long day trips out, and that's bothering me a lot more than not being able to walk to town right now, as its not fair on mum, especially when she breaks up for summer holidays (she works in a school so she gets all the holidays they do which is really nice). So well mainly be using the wheelchair for when were wanting to go further afield for shopping or a day out or something. I might use it if I'm having a particularly bad day and we still want to go to town, but otherwise i would still like to walk about town. I don't want to become reliant on it as then ill get no where with getting myself fitter.
I'm going back to the gym, i just need to book some appointments in with my trainer and i want to start doing walking on the treadmill on a slight incline, some time on the bike and i want to start doing some light weights again so i can start defining some muscle and not have stick legs come summer time :p Plus if i can develop some muscle it might add some weight on me as well, as muscle is heavier than fat! That will shut my dietician up, its my mission in life right now to prove to her i can do this weight gain on my own, i just need her to stop mentioning all the time when she sees me how thin i am, and how i need the PEG. I think if she mentions it at the next appointment i will explode at her. I still don't think that the dieticians understand one bit how hard it is for a CFer to gain weight, no matter if they eat 14 KFCs each week or something extreme like that. Just because they might specialise in CF doesn't mean they understand it for how it is for the actual patient, no matter how much the patient tries to explain it... Rant over :p
I went to town today, and for the first time in a while i didn't feel sick and need to sit down every 5mins! I was able to stand and walk around the shops, still at a snails pace which i think annoyed people who got stuck behind me but never mind!
I'm beginning to think that i have an addiction to buying PJ's. I got some Animal PJ's from Peacocks today, its a t-shirt type top with Animal on it, and the trousers to match which have images of him on there and the word Animal down one of the legs :) I also hate my neck and top of my chest getting cold and as i wear a lot of vest type tops i find myself wearing my scarf still if I'm outside and its breezy, so mum took me to the outdoor market today and i got some of them better, fashionable scarfs that everyone wears. I got two for £10, which is better as i was going to get one in New Look that would have cost me £8 so i saved some money there :) Now i cant stop wearing them! One is a black one with a pattern stitched in white and its got some feint reddy brown stitching going through it as well, and the other is white with lots of "blobs" of color all over it. Ill try and put some pics up later if i remember!
Anyway I've rambled enough now, i better get on with some revision!
Thursday, 28 April 2011
I'll get by...
Its taken me a while to get to this non-stressed level, and start to feel remotely happy. For people reading this who don't understand what that sentence means to me ill briefly explain...
During Uni, stress from the course and me not getting along with it got to me a lot, and ultimately made me very ill as i don't deal well under a lot of pressure. And pressure is certainly the understatement of what i put myself under! I made myself believe that i didn't belong at Uni, because i didn't have the same level of understanding of the content as my fellow course mates did, because i didn't enjoy the lectures like they did, because i didn't understand the assignments like they did or get what i was supposed to be doing in the tutorials. Because i wasn't exactly on the same level as everyone else i pressured myself about it, and spent countless nights sat up crying from stress and feeling generally crap about myself, telling myself how useless i was and that I'm so thick its a total fluke i got into Uni.
I spent everyday waiting for a letter to come through saying "sorry we made a mistake and we didn't actually accept you after all". Even though none of this was true, i had managed to make myself think and believe fully that it was true and that i was thick as two planks of wood etc, and so it made it extremely harder for me everyday.
All of this stress as you can imagine made me very ill, and i ended up not really eating properly, i think that started the beginnings of the weight problems i have today, it landed me in hospital countless times, adding more stress as i couldn't then do my uni work and i would spend the time in hospital worrying about falling behind rather than getting anywhere near better! I had the amount of times needed for IVs increased, which led to me getting my port as my veins couldn't handle it anymore, now they want me to have a PEG still and I'm fighting that with all i have in me.
Although Ive said it before that i regret going to Uni and living away from home, i don't really. Yes Ive screwed my health up a lot and I'm paying the price for that now, but I'm starting to pull my finger out as of yesterday. Its time for me to stop hiding under the duvet and thinking things will sort themselves out, as they wont and ill end up getting worse and worse. That's now what i or anyone wants really!
Then how am i supposed to live the life i keep saying i want...
I started to sort myself out yesterday by walking up the shop with mum. I spent way too much on sweets but never mind! I got home and was quite tired from such a simple walk but i was proud i did it! My aim is to get walking to town again, even if I'm too tired to walk home i need a taxi home for now, i don't mind as i can build things up.
I take my pills everyday now, and I'm managing 3 meals a day with snacks in between, and this morning even managed to do 2 Neb's which is a massive improvement on previous days/weeks/months ha ha! So I'm off to a good start. Mums helping me a lot with the food side of things, coming up with new ways to cook things for me to make them more fattening and things like that!
I actually managed to hang the washing out for mum yesterday, and I'm planning to try and hoover today. These things are not simple for me to do though, the washing yesterday took me nearly half and hour, i think by the time id pegged up the last item the first item was dry ha ha! But it was the effort that counted for me :)
Im starting to get some motivation back now, and im making the most of it!!
During Uni, stress from the course and me not getting along with it got to me a lot, and ultimately made me very ill as i don't deal well under a lot of pressure. And pressure is certainly the understatement of what i put myself under! I made myself believe that i didn't belong at Uni, because i didn't have the same level of understanding of the content as my fellow course mates did, because i didn't enjoy the lectures like they did, because i didn't understand the assignments like they did or get what i was supposed to be doing in the tutorials. Because i wasn't exactly on the same level as everyone else i pressured myself about it, and spent countless nights sat up crying from stress and feeling generally crap about myself, telling myself how useless i was and that I'm so thick its a total fluke i got into Uni.
I spent everyday waiting for a letter to come through saying "sorry we made a mistake and we didn't actually accept you after all". Even though none of this was true, i had managed to make myself think and believe fully that it was true and that i was thick as two planks of wood etc, and so it made it extremely harder for me everyday.
All of this stress as you can imagine made me very ill, and i ended up not really eating properly, i think that started the beginnings of the weight problems i have today, it landed me in hospital countless times, adding more stress as i couldn't then do my uni work and i would spend the time in hospital worrying about falling behind rather than getting anywhere near better! I had the amount of times needed for IVs increased, which led to me getting my port as my veins couldn't handle it anymore, now they want me to have a PEG still and I'm fighting that with all i have in me.
Although Ive said it before that i regret going to Uni and living away from home, i don't really. Yes Ive screwed my health up a lot and I'm paying the price for that now, but I'm starting to pull my finger out as of yesterday. Its time for me to stop hiding under the duvet and thinking things will sort themselves out, as they wont and ill end up getting worse and worse. That's now what i or anyone wants really!
Then how am i supposed to live the life i keep saying i want...
I started to sort myself out yesterday by walking up the shop with mum. I spent way too much on sweets but never mind! I got home and was quite tired from such a simple walk but i was proud i did it! My aim is to get walking to town again, even if I'm too tired to walk home i need a taxi home for now, i don't mind as i can build things up.
I take my pills everyday now, and I'm managing 3 meals a day with snacks in between, and this morning even managed to do 2 Neb's which is a massive improvement on previous days/weeks/months ha ha! So I'm off to a good start. Mums helping me a lot with the food side of things, coming up with new ways to cook things for me to make them more fattening and things like that!
I actually managed to hang the washing out for mum yesterday, and I'm planning to try and hoover today. These things are not simple for me to do though, the washing yesterday took me nearly half and hour, i think by the time id pegged up the last item the first item was dry ha ha! But it was the effort that counted for me :)
Im starting to get some motivation back now, and im making the most of it!!
Tuesday, 29 March 2011
Future...
I was going to blog yesterday as i was in a really crap place for most of the day, but i just didn't know what to write really.
I felt awful and so that in turn affects the emotions and everything. I saw pretty much everything in a negative way yesterday. I managed to actually shower and wash my hair, though it took me forever. Then when it came to trying to comb my hair and dry it i just was so out of breath it made me so angry i had a threw my comb across my desk, and had a few mins of angry tears. Honestly i felt a bit better after that cry, although totally out of breath lol...
After that things started to get a little bit better, i did a mucoclear and cleared a great deal, which made it a bit easier to breath and move and it also settled my super racing heart a bit as well, which was a relief as that just get so uncomfy after about 5mins!
I managed to sort my hair out finally as well. I didn't manage to have lunch yesterday and so my planned sausage sandwich went out the window as i just couldn't manage going downstairs, so i didn't have a massively good day yesterday.
But today is, i was going to say a little better, but its actually a lot better really. Ive had breakfast, and felt better for breathing today, I'm still really full in my lungs and I'm clearing a lot just from a simple cough, which at the moment I'm seeing as good rather than "oh no another infection" as its better out than in!
Ive actually managed to have lunch today! Its just a simple sandwich, and it took me a while to make it as i struggle to stand for a while, and i couldn't cut the cheese properly but i got there and felt proud for making myself a sandwich! Which seems really stupid in writing but i did it, and so that's what matters to me :)
Ive taken all my pills so far for today which doesnt always happen, and im about to do a neb after ive done this blog.
Today i was supposed to be having my PEG procedure, but its cancelled. Mostly i cancelled it, as i was meant to go into hospital for a few days IVs before the procedure, but they had a massive bed shuffle round due to nora virus breakout and so my bed got cancelled. They neglected to ring and tell me this until i was literally half way there on the train with all my stuff!
So we turnt around and went home after an impromtu visit to my great aunts for a cup of tea and some cake :p when we got home mum rang the team who said they knew nothing about it, considering it was my dietician who rang and told me to go home i was annoyed at this lack of them being told!
So we tried admissions to see what would happen now, as my PEG was all booked in for today, they said at first they would try and get me in for Monday, then they said they will send a new date out for me, then they said they will try and get me in for the end of the week!! Nobody knew a thing of what was happening, so i told them to cancel the whole thing and not bother.
Mum rang the team on Monday and spoke to them and the dietician (the one i like as well which made it easier!) rang me back and i explained to her that unless it could be done on the 29th i cant do it until June time then. I said that im going away to see my sister on the 15th April and then when i come back ill be studying for my exams which start at the beginning of May, and these are my final year exams so need my absolute full attention! She thankfully understood this and said that if the PEG procedure cant fit into my lifestyle until June then that is fine as it wasnt an emergency (which made me laugh as thats not the impression the other horrible dietician made it to be, which explains why i felt so much pressure 'coz she was blowing everything out of proportion!).
So im just maintaining my weight now and if i can gaining some which will be great! I would love it, if come June time ive gained enough weight on my own that i dont even need the PEG anymore! Me and mum are making a lot of changes to my diet, so if anyone has any top tips that would be great :)
Its a hell of a lot of pressure off my shoulders and i slept better last night knowing that its postponed for now and i dont need to think about it for now! It was really messing up my mind.
Anyway im looking forward to two things now for April, one is some time away with mum seeing my sister and her hubby, and the other is my first night out with my old college lads i studied with towards the end of April! Im so looking forward to it, as ive not been out for absolutely ages!! But im determinded to be healthy enough to go out! Even if i dont stay out till 3am and get totally drunk, i dont care ill be out and having fun and actually socialising with real people!!
Can you tell im excited? :D
I felt awful and so that in turn affects the emotions and everything. I saw pretty much everything in a negative way yesterday. I managed to actually shower and wash my hair, though it took me forever. Then when it came to trying to comb my hair and dry it i just was so out of breath it made me so angry i had a threw my comb across my desk, and had a few mins of angry tears. Honestly i felt a bit better after that cry, although totally out of breath lol...
After that things started to get a little bit better, i did a mucoclear and cleared a great deal, which made it a bit easier to breath and move and it also settled my super racing heart a bit as well, which was a relief as that just get so uncomfy after about 5mins!
I managed to sort my hair out finally as well. I didn't manage to have lunch yesterday and so my planned sausage sandwich went out the window as i just couldn't manage going downstairs, so i didn't have a massively good day yesterday.
But today is, i was going to say a little better, but its actually a lot better really. Ive had breakfast, and felt better for breathing today, I'm still really full in my lungs and I'm clearing a lot just from a simple cough, which at the moment I'm seeing as good rather than "oh no another infection" as its better out than in!
Ive actually managed to have lunch today! Its just a simple sandwich, and it took me a while to make it as i struggle to stand for a while, and i couldn't cut the cheese properly but i got there and felt proud for making myself a sandwich! Which seems really stupid in writing but i did it, and so that's what matters to me :)
Ive taken all my pills so far for today which doesnt always happen, and im about to do a neb after ive done this blog.
Today i was supposed to be having my PEG procedure, but its cancelled. Mostly i cancelled it, as i was meant to go into hospital for a few days IVs before the procedure, but they had a massive bed shuffle round due to nora virus breakout and so my bed got cancelled. They neglected to ring and tell me this until i was literally half way there on the train with all my stuff!
So we turnt around and went home after an impromtu visit to my great aunts for a cup of tea and some cake :p when we got home mum rang the team who said they knew nothing about it, considering it was my dietician who rang and told me to go home i was annoyed at this lack of them being told!
So we tried admissions to see what would happen now, as my PEG was all booked in for today, they said at first they would try and get me in for Monday, then they said they will send a new date out for me, then they said they will try and get me in for the end of the week!! Nobody knew a thing of what was happening, so i told them to cancel the whole thing and not bother.
Mum rang the team on Monday and spoke to them and the dietician (the one i like as well which made it easier!) rang me back and i explained to her that unless it could be done on the 29th i cant do it until June time then. I said that im going away to see my sister on the 15th April and then when i come back ill be studying for my exams which start at the beginning of May, and these are my final year exams so need my absolute full attention! She thankfully understood this and said that if the PEG procedure cant fit into my lifestyle until June then that is fine as it wasnt an emergency (which made me laugh as thats not the impression the other horrible dietician made it to be, which explains why i felt so much pressure 'coz she was blowing everything out of proportion!).
So im just maintaining my weight now and if i can gaining some which will be great! I would love it, if come June time ive gained enough weight on my own that i dont even need the PEG anymore! Me and mum are making a lot of changes to my diet, so if anyone has any top tips that would be great :)
Its a hell of a lot of pressure off my shoulders and i slept better last night knowing that its postponed for now and i dont need to think about it for now! It was really messing up my mind.
Anyway im looking forward to two things now for April, one is some time away with mum seeing my sister and her hubby, and the other is my first night out with my old college lads i studied with towards the end of April! Im so looking forward to it, as ive not been out for absolutely ages!! But im determinded to be healthy enough to go out! Even if i dont stay out till 3am and get totally drunk, i dont care ill be out and having fun and actually socialising with real people!!
Can you tell im excited? :D
Thursday, 10 March 2011
Just stuff...
I'm feeling a bit crabby today so you'll just have to bare with this blog post.
Its my 22nd Birthday 2morro! At least this year I'm not coming out of hospital a day before it, but I'm still not well for it really. So its just the same as last year.
I'm really fed up with a few things right now. Namely that I'm alone. Completely. Yes I've got my mum and my best friend Emily (who I'm so so looking forward to her coming home from placement in a few months from France!!) but they are there for me in other ways. I'm sick of being on my own now.
Every where i go i see people being able to get on with their life's and to not have to plan for how they might be feeling tomorrow or that evening before they can even make any plans for something to do. I see people in relationships and i hate that the most at the moment because its one thing i most wish for right now, for me to meet someone that's nice for a change and who i get along with, and who doesn't come with a history like some of my previous boyfriends. I understand they will still have a history i don't mind that as long as its not like the history's of my past bf's, which I'm not going to go into on here as it doesn't need to be known.
But i don't see any way I'm going to meet anyone to be honest. I know zero people around here. Don't get me wrong i love living where i live, but i just wish i had friends! Friends who would come and see me at home when I'm too sick to go out myself, friends who would go for a meal with me randomly just for some laughs after a rough day. Friends who would ring/text me gossip and to see how I'm doing or just tell me how they are in reply to my messages and things like that!!
Emily is that friend for me and more of a friend than the standard if that makes sense, but shes in France atm, and then we wont be living with each other anymore, and then shes finishing Uni and not sure whats happening after that, anything could really.
I want friends who i can go out for some drinks with, and go dancing when I'm too drunk too care how bad it is haha. For me these friends only seem to exist in my head or in fictional programs and books. Much the same as men.
I feel like I'm the outsider looking in through the window at everyone else being able to get on with their lives, find partners, and friends and going through those "stages" of life that are expected.
I want to get married and have kids eventually, but i honestly just cant see it happening if i cant even find anyone. I feel like the reject at the bottom of the pile. Ive seen guys look at me and smile, and then ill cough and cough and not stop and it must look horrific coz hes not looking nicely at me anymore. Theres either that horrid pity look or that disgusted look. Though admittedly i do prefer the disgusted look over the pitying look. I want a partner, not a nurse.
Birthday will be spend much the same as every other day. Bored, fed up and sick.
Immense. Fun.
Sorry this has been a crap post. I'm in the mood to write and vent, and i guess this is what came out today. Just really down...
Its my 22nd Birthday 2morro! At least this year I'm not coming out of hospital a day before it, but I'm still not well for it really. So its just the same as last year.
I'm really fed up with a few things right now. Namely that I'm alone. Completely. Yes I've got my mum and my best friend Emily (who I'm so so looking forward to her coming home from placement in a few months from France!!) but they are there for me in other ways. I'm sick of being on my own now.
Every where i go i see people being able to get on with their life's and to not have to plan for how they might be feeling tomorrow or that evening before they can even make any plans for something to do. I see people in relationships and i hate that the most at the moment because its one thing i most wish for right now, for me to meet someone that's nice for a change and who i get along with, and who doesn't come with a history like some of my previous boyfriends. I understand they will still have a history i don't mind that as long as its not like the history's of my past bf's, which I'm not going to go into on here as it doesn't need to be known.
But i don't see any way I'm going to meet anyone to be honest. I know zero people around here. Don't get me wrong i love living where i live, but i just wish i had friends! Friends who would come and see me at home when I'm too sick to go out myself, friends who would go for a meal with me randomly just for some laughs after a rough day. Friends who would ring/text me gossip and to see how I'm doing or just tell me how they are in reply to my messages and things like that!!
Emily is that friend for me and more of a friend than the standard if that makes sense, but shes in France atm, and then we wont be living with each other anymore, and then shes finishing Uni and not sure whats happening after that, anything could really.
I want friends who i can go out for some drinks with, and go dancing when I'm too drunk too care how bad it is haha. For me these friends only seem to exist in my head or in fictional programs and books. Much the same as men.
I feel like I'm the outsider looking in through the window at everyone else being able to get on with their lives, find partners, and friends and going through those "stages" of life that are expected.
I want to get married and have kids eventually, but i honestly just cant see it happening if i cant even find anyone. I feel like the reject at the bottom of the pile. Ive seen guys look at me and smile, and then ill cough and cough and not stop and it must look horrific coz hes not looking nicely at me anymore. Theres either that horrid pity look or that disgusted look. Though admittedly i do prefer the disgusted look over the pitying look. I want a partner, not a nurse.
Birthday will be spend much the same as every other day. Bored, fed up and sick.
Immense. Fun.
Sorry this has been a crap post. I'm in the mood to write and vent, and i guess this is what came out today. Just really down...
Tuesday, 11 January 2011
Never say Never...
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...
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...
Saturday, 14 August 2010
Ever feel like.....
You've been given the wrong life?
Like when everyone was queuing up for their life pill full of happiness, futures, and general lifey goodness or whatever, the conveyor belt got switched and you got sent down the wrong section and no one noticed. Not a single soul.
CF is actually a really lonely disease to have in my opinion. For me it really brings out that old saying, of being surrounded by people yet being so alone. I know some people reading this wont like that I've said that, but i try to be as open with the sometimes brutal truth as i can be on my blog...
I'm currently sat on my bed that I'm meant to be sleeping in right now surrounded by equipment i wish was totally foreign to me. But unfortunately nebulisers, inhalers, acapellas, and the like are totally normal for me, and i feel like its not meant to be. I feel like lately that maybe i was meant to have this life, but without the CF perhaps...
I wished for the thing closest to my heart (meaning the thing closest to my heart after my friends and family) when i saw the shooting stars the other night. I don't know if it will come true in my life time, but if when ever its granted it helps someone else, ill be happy and ill be grateful.
Have you ever looked at an old photo of yourself and not even recognised it as you? I did that the other day, i looked at the picture of me and a friend on the last day of seniors, the picture is in a frame and its been up in my room in plain sight for ages now. But i think i remembered it was there the other day 'coz i knocked it over. It was weird, pictures to me should be like looking into a mirror in a way, as its certainly you in the picture, you have the memory of it being taken, and you can remember what was happening around you when it was taken, but you cant remember looking like that.... I don't mean the bad hair doo's we've had and the terrible clothes we've worn in the past, at the time thinking we look oh so cool and fashionable, i mean it didn't look like me facial wise. I look healthy! i look happy (perhaps that had something to do with finally leaving that school after so many long gruelling years) and i look ready to take on the world that lays ahead of me whatever that may be. Now i look in the mirror and i feel like I've sunk within myself. I look really skinny and pale, and my freckles aren't so prevalent :( I don't look very well, and i don't look very happy. I don't have that spark that's in my eye that i do in the picture.
I want to be able to go back in time and warn this other me about what lies ahead and that i need to sort out myself now, as theres some tough times ahead and they wont be easy nor will they get easier, no matter if its the "norm" to have tubes and needles stuck in you, and toxic drugs swirling around your body something like 3, 4, maybe more times a year. I want to be able to prepare that me for what lays ahead, to make sure that i don't falter as much.
I want to tell that person to stay healthy and don't sink, and not to loose that spark in the eyes.
Its lucky one thing hasn't changed and that's the happiness. I mean i have crap days, so does everyone, and despite what this blog may suggest, i am happy. I just think sometimes i would be a lot happier minus the CF...
Or would I??
Like when everyone was queuing up for their life pill full of happiness, futures, and general lifey goodness or whatever, the conveyor belt got switched and you got sent down the wrong section and no one noticed. Not a single soul.
CF is actually a really lonely disease to have in my opinion. For me it really brings out that old saying, of being surrounded by people yet being so alone. I know some people reading this wont like that I've said that, but i try to be as open with the sometimes brutal truth as i can be on my blog...
I'm currently sat on my bed that I'm meant to be sleeping in right now surrounded by equipment i wish was totally foreign to me. But unfortunately nebulisers, inhalers, acapellas, and the like are totally normal for me, and i feel like its not meant to be. I feel like lately that maybe i was meant to have this life, but without the CF perhaps...
I wished for the thing closest to my heart (meaning the thing closest to my heart after my friends and family) when i saw the shooting stars the other night. I don't know if it will come true in my life time, but if when ever its granted it helps someone else, ill be happy and ill be grateful.
Have you ever looked at an old photo of yourself and not even recognised it as you? I did that the other day, i looked at the picture of me and a friend on the last day of seniors, the picture is in a frame and its been up in my room in plain sight for ages now. But i think i remembered it was there the other day 'coz i knocked it over. It was weird, pictures to me should be like looking into a mirror in a way, as its certainly you in the picture, you have the memory of it being taken, and you can remember what was happening around you when it was taken, but you cant remember looking like that.... I don't mean the bad hair doo's we've had and the terrible clothes we've worn in the past, at the time thinking we look oh so cool and fashionable, i mean it didn't look like me facial wise. I look healthy! i look happy (perhaps that had something to do with finally leaving that school after so many long gruelling years) and i look ready to take on the world that lays ahead of me whatever that may be. Now i look in the mirror and i feel like I've sunk within myself. I look really skinny and pale, and my freckles aren't so prevalent :( I don't look very well, and i don't look very happy. I don't have that spark that's in my eye that i do in the picture.
I want to be able to go back in time and warn this other me about what lies ahead and that i need to sort out myself now, as theres some tough times ahead and they wont be easy nor will they get easier, no matter if its the "norm" to have tubes and needles stuck in you, and toxic drugs swirling around your body something like 3, 4, maybe more times a year. I want to be able to prepare that me for what lays ahead, to make sure that i don't falter as much.
I want to tell that person to stay healthy and don't sink, and not to loose that spark in the eyes.
Its lucky one thing hasn't changed and that's the happiness. I mean i have crap days, so does everyone, and despite what this blog may suggest, i am happy. I just think sometimes i would be a lot happier minus the CF...
Or would I??
Monday, 21 June 2010
Tough times
I'm starting to think that my refusal of IVs was a stupid idea. I said to my doctor that i can do this myself, get a bit better i mean. I feel like i was way too optimistic. I'm really struggling here. Caught in a vicious circle: - I need energy to do things such as make food, but i have no energy to do that so nothing gets done about it.
My chest is full of it, i can feel it when i cough. I'm doing all my neb's and things which is helping a bit, but i feel like they are a case of they blow the clouds away for a while but they soon knit back together, if that makes sense?
I'm this close to giving up and ringing the hospital for IVs. Which makes me really sad and really angry at myself and more so at CF. Why cant it just fuck off for a change!? Actually let me be happy for a while.
I don't understand how most of the other CFers always seems so happy and calm and things like that. I can barely slap a smile on myself at the moment and i think its worrying my mum. Hell its worrying me. I don't like being like this, i don't like feeling like CF is beating me with a stick right into the ground.
I hate that i have to leave like 45mins extra early to walk to the station just so i can get trains on time, what am i guna be like when I've got to get trains everyday starting in September. Maybe continuing Uni from home was a bad option as well, but i wanted to move home. To be honest, right now i don't even think I'm going to pass my second year and i cant afford resits, so that forces me into quitting really.... I'm not sure how i feel about that. Sad and also not that bothered i think.
I hate this feeling of not being able to do anything, and of wanting to give up. I'm getting so fed up with having a headache from coughing all the time, or having a stomach ache from finally being able to have good food, and regularly. I know that will settle soon, but i wish it would hurry up.
I said to my mum the other day, that if God is real i think hes given me the wrong life, i think i was meant to have a nice, healthy life. Someone in this world has the life I'm meant to have, and its not fair.
My chest is full of it, i can feel it when i cough. I'm doing all my neb's and things which is helping a bit, but i feel like they are a case of they blow the clouds away for a while but they soon knit back together, if that makes sense?
I'm this close to giving up and ringing the hospital for IVs. Which makes me really sad and really angry at myself and more so at CF. Why cant it just fuck off for a change!? Actually let me be happy for a while.
I don't understand how most of the other CFers always seems so happy and calm and things like that. I can barely slap a smile on myself at the moment and i think its worrying my mum. Hell its worrying me. I don't like being like this, i don't like feeling like CF is beating me with a stick right into the ground.
I hate that i have to leave like 45mins extra early to walk to the station just so i can get trains on time, what am i guna be like when I've got to get trains everyday starting in September. Maybe continuing Uni from home was a bad option as well, but i wanted to move home. To be honest, right now i don't even think I'm going to pass my second year and i cant afford resits, so that forces me into quitting really.... I'm not sure how i feel about that. Sad and also not that bothered i think.
I hate this feeling of not being able to do anything, and of wanting to give up. I'm getting so fed up with having a headache from coughing all the time, or having a stomach ache from finally being able to have good food, and regularly. I know that will settle soon, but i wish it would hurry up.
I said to my mum the other day, that if God is real i think hes given me the wrong life, i think i was meant to have a nice, healthy life. Someone in this world has the life I'm meant to have, and its not fair.
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