I had a clinic appointment recently and the Dr sat down and said that she needs to have a serious discussion with me but shes not pushing anything on me and that whatever my decision is they will respect that and help me in any way they can. I instantly knew it was about my weight and about the PEG so i prepared myself for an ear bashing about not eating enough and that i need to try harder etc etc...
But it didnt come! I was shocked, the Dr was really nice about it and she showed me the chart of my weight tracking since i joined them and it was shocking to say the least!
I was in 2009 around 54kg and since then with each infection getting worse and taking more of a toll on me, my weight is whats been suffering the most. I knew that it wasnt the best it could be or should be, but i didnt realise it was THAT bad. Its like ive been slowly disappearing and not realised it really.
So she discussed my options with me.
Option 1 :- To carry on as im doing so and just eat as much as i can and include a range of supplements as well. I can manage one supplement a day at the moment and use Polycal in most things i can, but i want to be having at least 3 supplements a day to give myself a chance. But it was made clear that if i chose this option that i would need to be having at least a minimum of 6 supplements a day plus my ordinary meals and snacks. This didnt seem realistic to me at all!
Option 2:- NG Feeding. This was right out the window from the start. I cant handle the thought of passing a tube up my nose and so i just wouldnt be able to actually do it. So thats two options out the window really.
Option 3:- I knew what this one was going to be. This was the PEG.
I have had lengthy discussions with the dietician about this and i nearly had it done in March. I was halfway there on the train and they rang me to say my bed has been cancelled and not to bother coming in. They had known this all day and decided now to ring me when they knew i would be travelling in. We went home and after lengthy phonecalls and people being so inept at communication i cancelled the whole thing and told them to forget about it.
I felt like it was fate telling me i didnt need it done and as i wasnt 100% about happy or wanting to have it done i felt it was the right thing to do at the time to cancel it.
Now i feel that it is my only option and so i have made the, for me, rather huge decision to have another go at having it done. This time i think it will go ahead as its fairly urgent now.
The Dr said if my weight drops any more and my lung function in turn gets worse that i am referred for being considered for a transplant, that they wouldnt even look at me due to my weight being so low. This scared me as i dont want to ever be in the position of needing a transplant, (though i know it is still possible with this disease being so unpredictable) and them turning me away for my possible second chance just because i cant keep myself weighty enough.
So after discussion with mum i decided i am going to have the PEG done. I rang the hospital on the Thursday last week to say i will go ahead with that option and the Dr has sent off my referral to the Endoscopy team. So its just a matter of waiting for that to be sorted now and then a plan of action wil be made for me to go in for a few days before the procedure for some IVs. I will stay for a while after the procedure as well to make sure my IVs are doing the trick and i am fully trained to manage my PEG at home.
I discussed my fears with the Dr then and there and for once i felt like she understood them! Anyone else ive told on the team ive always felt like they have just thought im being rediculous and to stop being so stupid. I didnt feel any pressure this time and i think thats partly because i know it is the best option for me now, where as previously i didnt think it was the right time at all.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Tuesday, 5 July 2011
Ups and Downs...
So I've not blogged for ages!! I've not really known what to write up until now, but even now I'm not totally sure so this might be a bit of a random post, well see!
My emotions have been a struggle lately to say the least. Normally I'm good at keeping myself in check, i keep a diary of my own and anything gets written down in there, I've read back on some things and it doesn't even make much sense, but i guess at the time of writing it, it made me feel better so I'm not bothered. That diary is for me anyway and so others don't need to understand it.
For some reason i just stopped writing. I became very low and didn't really care about much. I wasn't very well which didn't help my low mood and i was snapping a lot at people who didn't deserve to be snapped at. I wasn't able to keep food down, unless it was ice cream or ice lollies. I was drinking tons but still became severely dehydrated and it ended up making my lips dry out so much at night that they would split and bleed. They became really quite sore and i used to use vaseline to heal my lips when this happened in the past but being on overnight oxygen now i couldn't do that, so i was struggling as i couldn't find a cream that would help me that wasn't going to also make my face explode :|
I wasn't sleeping so i was becoming more low by the day really, sleep only seemed to want to come to me at the most inconvenient times during the day and i had to relent most of the time and give in to it as i was pretty much propping my eyes open with matchsticks most days. My chest was drying up and was so painful as i kept getting plugs and random muscle spasms. The only thing that seemed to help my chest was hot water bottles and laying on my side. If i did any nebuliser it felt like it made my chest so tight and i just couldn't breathe properly afterwards. So i gave up.
I still have the wheelchair on loan from the red cross but it goes back at the end of this month so ill more than likely become a recluse again which will send my mood down again. I cant manage walking up the stairs properly i have to stop half way.
I went to clinic when i was really quite unwell and they wanted me in, i refused as i didn't think i needed IVs i just needed to keep my food down and get some sleep! I was exhausted. They prescribed me some orals I've not had before as i insisted that the ones they keep giving me now don't really do anything and the Cipro makes me throw up even more now. I also got some anti sickness pills. I started taking them that night and after a few days they seemed to be doing the trick. I managed to start keeping cereal down and eventually got up to having proper meals again.
I'm now keeping food down, my mood has really picked up, and I'm sleeping again! I went back to clinic the other day and was given some very mild anti depressants which also act as a sedative so they are helping me to sleep which is doing me the world of good it feels! They are also to help with my mood as its still not good but its improving slowly so well see how i go.
I'm going to do a separate blog about my recent clinic appointment as there was a big decisions made by me and i want to talk properly about it.
My emotions have been a struggle lately to say the least. Normally I'm good at keeping myself in check, i keep a diary of my own and anything gets written down in there, I've read back on some things and it doesn't even make much sense, but i guess at the time of writing it, it made me feel better so I'm not bothered. That diary is for me anyway and so others don't need to understand it.
For some reason i just stopped writing. I became very low and didn't really care about much. I wasn't very well which didn't help my low mood and i was snapping a lot at people who didn't deserve to be snapped at. I wasn't able to keep food down, unless it was ice cream or ice lollies. I was drinking tons but still became severely dehydrated and it ended up making my lips dry out so much at night that they would split and bleed. They became really quite sore and i used to use vaseline to heal my lips when this happened in the past but being on overnight oxygen now i couldn't do that, so i was struggling as i couldn't find a cream that would help me that wasn't going to also make my face explode :|
I wasn't sleeping so i was becoming more low by the day really, sleep only seemed to want to come to me at the most inconvenient times during the day and i had to relent most of the time and give in to it as i was pretty much propping my eyes open with matchsticks most days. My chest was drying up and was so painful as i kept getting plugs and random muscle spasms. The only thing that seemed to help my chest was hot water bottles and laying on my side. If i did any nebuliser it felt like it made my chest so tight and i just couldn't breathe properly afterwards. So i gave up.
I still have the wheelchair on loan from the red cross but it goes back at the end of this month so ill more than likely become a recluse again which will send my mood down again. I cant manage walking up the stairs properly i have to stop half way.
I went to clinic when i was really quite unwell and they wanted me in, i refused as i didn't think i needed IVs i just needed to keep my food down and get some sleep! I was exhausted. They prescribed me some orals I've not had before as i insisted that the ones they keep giving me now don't really do anything and the Cipro makes me throw up even more now. I also got some anti sickness pills. I started taking them that night and after a few days they seemed to be doing the trick. I managed to start keeping cereal down and eventually got up to having proper meals again.
I'm now keeping food down, my mood has really picked up, and I'm sleeping again! I went back to clinic the other day and was given some very mild anti depressants which also act as a sedative so they are helping me to sleep which is doing me the world of good it feels! They are also to help with my mood as its still not good but its improving slowly so well see how i go.
I'm going to do a separate blog about my recent clinic appointment as there was a big decisions made by me and i want to talk properly about it.
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.
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
Tuesday, 1 March 2011
Been a while...
So!! Its been a while since I've made a posting!
Things have been quite difficult for me lately and so I've been pretty much disconnected from everything and I'm now just managing to be able to think about starting to get back on track...
In December i had an infection that was my worst one i had ever had, i was in hospital for a few days as i had 2 episodes of coughing up blood for the first time ever and then i continued on home IVs which i had already started previous to going into hospital. It seemed like i got better, some things picked up i started to get a little bit of energy back and some of my appetite. Bits and pieces like that which indicate to us CFers that generally something is starting to go right for a change and that were going to start getting better.
I went back to the gym, i went back to Uni, i started to put my "life" shoes back on again. I think that's where i went wrong, i went back into things too quickly after being so unwell and just didn't give myself time to rest properly. Hindsight's a bitch sometimes!
So i ended up getting ill again, i had the same feelings as in December, things started to show they were in decline again, my energy disappeared, my appetite diminished. I got very low again and spent a lot of time either slouched on the sofa or throwing up in the bathroom. Not impressive.
So after trying to go it alone again 'coz I'm stubborn, i called the hospital and told them everything that had been happening. I don't think they were impressed i had waited so long to ring them, but they know I'm a stubborn cow sometimes. They put me on the priority list for a bed and within 2 days i was in hospital and being pumped full of lovely IVs, paracetamol, ibuprofen. Luckily i didn't have any bleeds this time, but i think that was because of a few factors, namely that my chest had dried up like a desert but i could feel that it was full of it, as i was wheezing like mad for the first time in years! Not even my inhaler would relive it.
I was hitting temps of around 40 and i had god knows how many blood cultures done when in hospital, i had 3 ECGs, 2 in one day as my heart was beating so fast it was really uncomfortable sometimes. I had to stop moving around so much and just rest on nurses orders to help try and settle my heart rate and also to get my pulse rate down as well. I went on oxygen again to being my sats up and had my obs done every hour for the first 2 days i was in there. Needless to say my mood from total lack of sleep was not pretty.
Mum came down on the first weekend i was in there and i argued with the nurse about being allowed to go down into town for a little bit and get some real fresh air and real edible food for lunch! I think she thought i was going to escape home, but there was no way i could look after myself while mum was at work. So begrudgingly i did admit to myself that i was in the best place, even if the food did look like the cat had coughed it up sometimes! Thank god for the £6 i spent on my massive bag of pick n mix :p
Eventually i won the argument with the nurse and she let me go, but made it clear she wasn't happy about it. I think what won it was that she said she has to ring the on call Dr to see if i can go out and i said that even if they said no, i would still go out anyway!
So i had breakfast - a lovely fry up, and a KFC for lunch! It had to have been the best day i had had for a few. Although it totally knackered me out after i got back to my room, i was so pleased i had managed better walking and was thankful for the change of scene and fresh air. Sometimes i don't think some nurses get that its depressing after a while being on your own, looking at the same four walls alllll the time!
Another reason i hate being in hospital is that it is always a clear reminder of how alone i actually am and feel right now. I have no friends who come to visit me, and next to no family come to visit me. I have no get well cards sent to me from friends and family, i have no Internet so feel totally disconnected.
Thankfully i have my amazing mum and my best friend Emily. Although my mum can only get to visit me on Saturdays, its the best ever when i see her! It doesn't matter that I'm pretty much always on the phone to her when in there (thanks Orange for magic numbers and my free mins :p ) seeing her is totally different as i can actually get that much needed hug and get to slap a real smile on my face!! :D I know that if it wasn't for work, and the extortionate fees for public transport she would come and see me everyday. I just hope she knows that i do fully understand that.
My best friend would come and visit me i know that, but at the moment shes on her Uni placement in France and so obviously cant, which i know pisses her off as she knows that no other friends bother to visit me. They have their excuses of not liking hospitals, or that they are too busy, then i see on facebook they are moaning they are bored. Yeah cheers for that guys.
My family are the worst. They don't understand CF and the extent of the damage it does to someone, physically, emotionally and mentally. Not just to the person who has to suffer with it, but their parent(s) and sibling(s) as well. My aunt totally pissed my mum off. We were trying to arrange transport for me to be able to be discharged on home IVs. Taking all the meds which is usually two large carrier bags, a huge sharps bin with all the syringes, needles etc inside and my stuff i took into hospital is not ideal to take on a train journey home! So we asked my Aunty if she could pick me up and take me home. She said she couldn't do it, fair enough at least we tried. I then saw the next day on facebook, when i was being discharged that she was in Bristol, down in the town not a 20min walk from the hospital i was in!! Shopping. Of all things, for the birthday party of my other Aunty that we hadn't been told about or invited to. Granted its more than likely we couldn't have gone but it would have been nice being family members to have gotten an invite! Is that selfish of me to think that??
As i wasn't being discharged until about 5pm she could have gotten in her shopping day and then come and collected me. She has a large car so its not like shopping bags would have taken up room. It really angered my mum, more because my aunt is always saying if theres anything she can do to help let her know. Yet every time we ask she always says no, cant do it. Theres always some excuse which isn't always true. So were not bothering to ask her anymore, for anything.
It pissed me off as well, but it upset me as well as it felt like she was saying that she doesn't care about her niece or her sister (my mum) enough to just do this small thing for them that would help them out hugely. Yet she goes to see my cousin right around the corner from me who has cancer whenever she can! I think its because she doesn't understand CF and doesn't see or get how bad it is/can get for me. I don't think she gets that it can kill me, just as much as cancer can kill people. Cancer everyone understands, you can see the devastating affects of that horrid disease. You cant see the devastating affects of CF. People think naively that as the person is up and walking around themselves that theres nothing wrong with them.
I had my annual review yesterday, which didnt show up no surprises really as i had already been spending so long at the hospital. Basically the annual review showed that im worse than last year and still struggling.
Im having my PEG put in on the 29th March and ill go in a few days before that for some IVs again to make sure my lungs are in as good a condition they can be for dealing with an anesthetic, even if it is a local one and sedation. Then for a few days afterwards ill be trained how to do home feeding via my new tube and then be allowed to go home again. I swear they should make me a permanent bed for me there lately :|
Hopefully that will gain me the weight i need to battle these infections i keep getting. If i can have a better summer than last year health wise itll be a start!
Anyway i think this post is long enough now!
Hope peoples are well!!
Things have been quite difficult for me lately and so I've been pretty much disconnected from everything and I'm now just managing to be able to think about starting to get back on track...
In December i had an infection that was my worst one i had ever had, i was in hospital for a few days as i had 2 episodes of coughing up blood for the first time ever and then i continued on home IVs which i had already started previous to going into hospital. It seemed like i got better, some things picked up i started to get a little bit of energy back and some of my appetite. Bits and pieces like that which indicate to us CFers that generally something is starting to go right for a change and that were going to start getting better.
I went back to the gym, i went back to Uni, i started to put my "life" shoes back on again. I think that's where i went wrong, i went back into things too quickly after being so unwell and just didn't give myself time to rest properly. Hindsight's a bitch sometimes!
So i ended up getting ill again, i had the same feelings as in December, things started to show they were in decline again, my energy disappeared, my appetite diminished. I got very low again and spent a lot of time either slouched on the sofa or throwing up in the bathroom. Not impressive.
So after trying to go it alone again 'coz I'm stubborn, i called the hospital and told them everything that had been happening. I don't think they were impressed i had waited so long to ring them, but they know I'm a stubborn cow sometimes. They put me on the priority list for a bed and within 2 days i was in hospital and being pumped full of lovely IVs, paracetamol, ibuprofen. Luckily i didn't have any bleeds this time, but i think that was because of a few factors, namely that my chest had dried up like a desert but i could feel that it was full of it, as i was wheezing like mad for the first time in years! Not even my inhaler would relive it.
I was hitting temps of around 40 and i had god knows how many blood cultures done when in hospital, i had 3 ECGs, 2 in one day as my heart was beating so fast it was really uncomfortable sometimes. I had to stop moving around so much and just rest on nurses orders to help try and settle my heart rate and also to get my pulse rate down as well. I went on oxygen again to being my sats up and had my obs done every hour for the first 2 days i was in there. Needless to say my mood from total lack of sleep was not pretty.
Mum came down on the first weekend i was in there and i argued with the nurse about being allowed to go down into town for a little bit and get some real fresh air and real edible food for lunch! I think she thought i was going to escape home, but there was no way i could look after myself while mum was at work. So begrudgingly i did admit to myself that i was in the best place, even if the food did look like the cat had coughed it up sometimes! Thank god for the £6 i spent on my massive bag of pick n mix :p
Eventually i won the argument with the nurse and she let me go, but made it clear she wasn't happy about it. I think what won it was that she said she has to ring the on call Dr to see if i can go out and i said that even if they said no, i would still go out anyway!
So i had breakfast - a lovely fry up, and a KFC for lunch! It had to have been the best day i had had for a few. Although it totally knackered me out after i got back to my room, i was so pleased i had managed better walking and was thankful for the change of scene and fresh air. Sometimes i don't think some nurses get that its depressing after a while being on your own, looking at the same four walls alllll the time!
Another reason i hate being in hospital is that it is always a clear reminder of how alone i actually am and feel right now. I have no friends who come to visit me, and next to no family come to visit me. I have no get well cards sent to me from friends and family, i have no Internet so feel totally disconnected.
Thankfully i have my amazing mum and my best friend Emily. Although my mum can only get to visit me on Saturdays, its the best ever when i see her! It doesn't matter that I'm pretty much always on the phone to her when in there (thanks Orange for magic numbers and my free mins :p ) seeing her is totally different as i can actually get that much needed hug and get to slap a real smile on my face!! :D I know that if it wasn't for work, and the extortionate fees for public transport she would come and see me everyday. I just hope she knows that i do fully understand that.
My best friend would come and visit me i know that, but at the moment shes on her Uni placement in France and so obviously cant, which i know pisses her off as she knows that no other friends bother to visit me. They have their excuses of not liking hospitals, or that they are too busy, then i see on facebook they are moaning they are bored. Yeah cheers for that guys.
My family are the worst. They don't understand CF and the extent of the damage it does to someone, physically, emotionally and mentally. Not just to the person who has to suffer with it, but their parent(s) and sibling(s) as well. My aunt totally pissed my mum off. We were trying to arrange transport for me to be able to be discharged on home IVs. Taking all the meds which is usually two large carrier bags, a huge sharps bin with all the syringes, needles etc inside and my stuff i took into hospital is not ideal to take on a train journey home! So we asked my Aunty if she could pick me up and take me home. She said she couldn't do it, fair enough at least we tried. I then saw the next day on facebook, when i was being discharged that she was in Bristol, down in the town not a 20min walk from the hospital i was in!! Shopping. Of all things, for the birthday party of my other Aunty that we hadn't been told about or invited to. Granted its more than likely we couldn't have gone but it would have been nice being family members to have gotten an invite! Is that selfish of me to think that??
As i wasn't being discharged until about 5pm she could have gotten in her shopping day and then come and collected me. She has a large car so its not like shopping bags would have taken up room. It really angered my mum, more because my aunt is always saying if theres anything she can do to help let her know. Yet every time we ask she always says no, cant do it. Theres always some excuse which isn't always true. So were not bothering to ask her anymore, for anything.
It pissed me off as well, but it upset me as well as it felt like she was saying that she doesn't care about her niece or her sister (my mum) enough to just do this small thing for them that would help them out hugely. Yet she goes to see my cousin right around the corner from me who has cancer whenever she can! I think its because she doesn't understand CF and doesn't see or get how bad it is/can get for me. I don't think she gets that it can kill me, just as much as cancer can kill people. Cancer everyone understands, you can see the devastating affects of that horrid disease. You cant see the devastating affects of CF. People think naively that as the person is up and walking around themselves that theres nothing wrong with them.
I had my annual review yesterday, which didnt show up no surprises really as i had already been spending so long at the hospital. Basically the annual review showed that im worse than last year and still struggling.
Im having my PEG put in on the 29th March and ill go in a few days before that for some IVs again to make sure my lungs are in as good a condition they can be for dealing with an anesthetic, even if it is a local one and sedation. Then for a few days afterwards ill be trained how to do home feeding via my new tube and then be allowed to go home again. I swear they should make me a permanent bed for me there lately :|
Hopefully that will gain me the weight i need to battle these infections i keep getting. If i can have a better summer than last year health wise itll be a start!
Anyway i think this post is long enough now!
Hope peoples are well!!
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, 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...
Tuesday, 10 August 2010
Over due for some luck...
This year has been pretty crap health wise. Ive been sick a lot more than I like. I think I've spent more time in hospital - either in clinic or as an inpatient - than I have any where else. Ive cried a lot this year, and been pretty unhappy as well.
I kept telling myself that once the summer hols arrived it would all be okay, that I could spend time with mum and get myself back on my feet and start getting better properly without living with certain people and in such a dirty house. I kept telling myself that once id moved back home things would be good again.
I wasn't completely right in thinking all that.
Things are a lot better moods wise, I'm not unhappy as often as i was. At the start of the hols i was 'coz i was so bored and lonely i slipped into my "whats the point with anything at all" mood. Which i often find very easy to get into and extremely hard to get out of. Its like trying to swim in quick sand.
My health i felt started to improve a little bit, and i felt like i was beginning to get back on track, then i don't know what happened but i got ill again and succumbed to IVs which i did for 2 weeks at home. They helped pick my energy up immensely and started to help my appetite and a few other things as well. Things were on the up, i kept having to go back to the hospital pretty much every 2 weeks which was really annoying and quite expensive in the long run. I honestly don't think the hospital understand how expensive it is, especially when you have such little money in the first place!
Then i started to throw up again in the mornings from coughing so much, and then the joint pain began. It got really bad again this time and so i did what my Dr had told me in the past to just rest and take regular ibuprofen and paracetamol. But this didn't help me much at all. I went to the hospital for a clinic appointment and explained about it all, and they said i should have rung them. I told them i didn't think there was any point as the previous Dr i had (shes now left) told me it was just stress causing it and what actions i should take. The news of this hadn't seemed to have been passed on, and i felt really guilty for not having rung them in my time of need.
I saw my fave Dr that clinic and i explained what the previous Dr had said about my joints that stress causes it and such and he didn't look impressed at all. He explained that stress isn't whats causing it and that its very common in CF patients! I don't think my previous Dr had a clue what she was talking about half the time as i found out the day she left the clinic that shes actually a radiologist!! I felt really angry, why was a radiologist giving patient care to a CF patient!! I felt like everything she had told me had been a misdiagnosis, especially as my fave Dr confirmed its not stress that causes my severe joint pain.
My lung function is at its all time lowest - 42% - I'm really not happy with this number, but the Dr actually believes in me that i can bring myself back up on my own without the need for IVs :) I'm back again on the 20th after my last resit exam - eep! - for another check up and then were going from there depending what my numbers are. Which is fair i think. At least hes not like the previous Dr and doesn't jump on the IV bandwagon straight away without believing in the patient.
I'm a bit angry today. I'm getting worried about my ever looming resits, which are on the 16th, 18th and 20th. I'm worried i wont pass them and then i don't know what will happen, i cant afford to sit them again a second time as its cost me £150 to resit these 3 coming up! £50 for each resit is hefty when you have more than one to do!
I'm angry today 'coz my money i had saved specifically for some nice days out for me and my mum this summer seems to have gone on nothing! I have had to fork out for a lot of train fare to get to and from my mountain of hospital appointments, and 'coz I'm living back in Chippenham now and not Bristol I'm not entitled to have the nurses and physios come out to visit me at home, as I'm out the distance apparently. That's really bad to me, and makes me so angry, but theres not a lot i can do about it really.
I'm also angry as everyone seems to have such an easy time lately compared to me and my mum. Were being put through the ringer it feels. I really wish i could treat her to a lovely holiday, she deserves it far more than some people i know who are constantly jetting off to places - and then complaining they have no money! - It really annoys me that she works so dam hard for everything she wants and needs and then doesn't get anything except a kick in the teeth in return. Its people like my mum who needs the extra help and funding for things rather than all the people who are in high paying jobs and still somehow getting all the benefits and help under the sun! And then those people STILL complain they have no money or they cant take their holiday via a first class jet plane this year or take that cruise on the Caribbean! Come to me when you have something worth complaining about, like lung disease, poverty, or an actual genuine lack of money even though your doing everything you possibly can and trying more to get the money in and not succeeding. Then complain freely to me.
I hope things start to improve soon - health and general life. Were way over due for some decent good luck!
I kept telling myself that once the summer hols arrived it would all be okay, that I could spend time with mum and get myself back on my feet and start getting better properly without living with certain people and in such a dirty house. I kept telling myself that once id moved back home things would be good again.
I wasn't completely right in thinking all that.
Things are a lot better moods wise, I'm not unhappy as often as i was. At the start of the hols i was 'coz i was so bored and lonely i slipped into my "whats the point with anything at all" mood. Which i often find very easy to get into and extremely hard to get out of. Its like trying to swim in quick sand.
My health i felt started to improve a little bit, and i felt like i was beginning to get back on track, then i don't know what happened but i got ill again and succumbed to IVs which i did for 2 weeks at home. They helped pick my energy up immensely and started to help my appetite and a few other things as well. Things were on the up, i kept having to go back to the hospital pretty much every 2 weeks which was really annoying and quite expensive in the long run. I honestly don't think the hospital understand how expensive it is, especially when you have such little money in the first place!
Then i started to throw up again in the mornings from coughing so much, and then the joint pain began. It got really bad again this time and so i did what my Dr had told me in the past to just rest and take regular ibuprofen and paracetamol. But this didn't help me much at all. I went to the hospital for a clinic appointment and explained about it all, and they said i should have rung them. I told them i didn't think there was any point as the previous Dr i had (shes now left) told me it was just stress causing it and what actions i should take. The news of this hadn't seemed to have been passed on, and i felt really guilty for not having rung them in my time of need.
I saw my fave Dr that clinic and i explained what the previous Dr had said about my joints that stress causes it and such and he didn't look impressed at all. He explained that stress isn't whats causing it and that its very common in CF patients! I don't think my previous Dr had a clue what she was talking about half the time as i found out the day she left the clinic that shes actually a radiologist!! I felt really angry, why was a radiologist giving patient care to a CF patient!! I felt like everything she had told me had been a misdiagnosis, especially as my fave Dr confirmed its not stress that causes my severe joint pain.
My lung function is at its all time lowest - 42% - I'm really not happy with this number, but the Dr actually believes in me that i can bring myself back up on my own without the need for IVs :) I'm back again on the 20th after my last resit exam - eep! - for another check up and then were going from there depending what my numbers are. Which is fair i think. At least hes not like the previous Dr and doesn't jump on the IV bandwagon straight away without believing in the patient.
I'm a bit angry today. I'm getting worried about my ever looming resits, which are on the 16th, 18th and 20th. I'm worried i wont pass them and then i don't know what will happen, i cant afford to sit them again a second time as its cost me £150 to resit these 3 coming up! £50 for each resit is hefty when you have more than one to do!
I'm angry today 'coz my money i had saved specifically for some nice days out for me and my mum this summer seems to have gone on nothing! I have had to fork out for a lot of train fare to get to and from my mountain of hospital appointments, and 'coz I'm living back in Chippenham now and not Bristol I'm not entitled to have the nurses and physios come out to visit me at home, as I'm out the distance apparently. That's really bad to me, and makes me so angry, but theres not a lot i can do about it really.
I'm also angry as everyone seems to have such an easy time lately compared to me and my mum. Were being put through the ringer it feels. I really wish i could treat her to a lovely holiday, she deserves it far more than some people i know who are constantly jetting off to places - and then complaining they have no money! - It really annoys me that she works so dam hard for everything she wants and needs and then doesn't get anything except a kick in the teeth in return. Its people like my mum who needs the extra help and funding for things rather than all the people who are in high paying jobs and still somehow getting all the benefits and help under the sun! And then those people STILL complain they have no money or they cant take their holiday via a first class jet plane this year or take that cruise on the Caribbean! Come to me when you have something worth complaining about, like lung disease, poverty, or an actual genuine lack of money even though your doing everything you possibly can and trying more to get the money in and not succeeding. Then complain freely to me.
I hope things start to improve soon - health and general life. Were way over due for some decent good luck!
Monday, 7 June 2010
Year 2 reflection and being home
So like I said I've now finished my exams, and completed year 2 (depending on any possible resits in the summer) I'm so happy its finally all over. When i first started my second year i was all prepared and had a plan in place for doing well and keeping on track, and it was for once in my life a realistic plan! But obviously not realistic enough. I was well when i created this "plan" and so wasn't accounting for how unpredictable CF really is, and how it seems to strike when things are feeling like they are going well.
I ended up getting fairly unwell and was in hospital for about a month, this completely threw me off my "plan" and i lost track totally of uni and missed a great deal, thus making my exams much harder than they should have been. However i made it threw the academic year and I'm trying to create some plans in advance as best i can for my third and what might be my third and final year...
I'm living at home next year (academic year) and so that will help me out a great deal health wise, as mum will be here to help take care of me, make sure i eat, keep on top of my physio and work, and general "have u taken your pills" arguments that ensues after a nice meal lol
I can also start up my running route again, and I'm hoping to eventually be able to get back onto my bike and ride to and from the train station and my house as ill need to get the train to uni every day, which admittedly will be knackering, but after i get into the routine i think ill be okay and as long as i get plenty of rest and keep everything up ill be okay. It should get my lung function back up there as well! Which will please my physios immensely!
I'm at home at the moment. I came home on Saturday for a car boot sale with my mum, which she bought me a photo frame and a large fluffy duck as end of exams presents :D They pleased me immensely :)
I'm supposed to be going back today to Bristol to pack my things up and I've also got a hospital appointment tomorrow and Wednesday (2 different days as two different people) and i know they want me on IVs, but i managed to get back 7% of my lung function, so i know that i can do more for myself without IVs, besides i don't have the energy just yet to deal with them as home IVs and i don't want to go into hospital now, and as I've not got any uni commitments i have more time for myself to focus on my health! I'm putting my foot down and doing more for myself, i don't feel like i need them anymore, no matter how much the Dr wont listen to me. I really don't like her! I prefer the other consultant i have but now hes moved higher up in the CF unit, he doesn't see many patients which sucks :(
I'll either go back to Bristol today or tomorrow morning. I'm leaving most of my things i bought home here as there's no point me taking them back only to have to just pack them and bring them back again...
I'm really enjoying being at home again, without a care in the world with regards to uni at the moment. I'm loving having nothing at all to do, although its hard to think what i did with my time before uni :S
I know ill get bored with nothing to do soon enough, but mum finishes work for summer hols soon so well have plenty to do as we've got some nice days out planned :)
Speaking of mum, she'll be home from work soon, and I'm still not showered or anything so better get a move on!
I ended up getting fairly unwell and was in hospital for about a month, this completely threw me off my "plan" and i lost track totally of uni and missed a great deal, thus making my exams much harder than they should have been. However i made it threw the academic year and I'm trying to create some plans in advance as best i can for my third and what might be my third and final year...
I'm living at home next year (academic year) and so that will help me out a great deal health wise, as mum will be here to help take care of me, make sure i eat, keep on top of my physio and work, and general "have u taken your pills" arguments that ensues after a nice meal lol
I can also start up my running route again, and I'm hoping to eventually be able to get back onto my bike and ride to and from the train station and my house as ill need to get the train to uni every day, which admittedly will be knackering, but after i get into the routine i think ill be okay and as long as i get plenty of rest and keep everything up ill be okay. It should get my lung function back up there as well! Which will please my physios immensely!
I'm at home at the moment. I came home on Saturday for a car boot sale with my mum, which she bought me a photo frame and a large fluffy duck as end of exams presents :D They pleased me immensely :)
I'm supposed to be going back today to Bristol to pack my things up and I've also got a hospital appointment tomorrow and Wednesday (2 different days as two different people) and i know they want me on IVs, but i managed to get back 7% of my lung function, so i know that i can do more for myself without IVs, besides i don't have the energy just yet to deal with them as home IVs and i don't want to go into hospital now, and as I've not got any uni commitments i have more time for myself to focus on my health! I'm putting my foot down and doing more for myself, i don't feel like i need them anymore, no matter how much the Dr wont listen to me. I really don't like her! I prefer the other consultant i have but now hes moved higher up in the CF unit, he doesn't see many patients which sucks :(
I'll either go back to Bristol today or tomorrow morning. I'm leaving most of my things i bought home here as there's no point me taking them back only to have to just pack them and bring them back again...
I'm really enjoying being at home again, without a care in the world with regards to uni at the moment. I'm loving having nothing at all to do, although its hard to think what i did with my time before uni :S
I know ill get bored with nothing to do soon enough, but mum finishes work for summer hols soon so well have plenty to do as we've got some nice days out planned :)
Speaking of mum, she'll be home from work soon, and I'm still not showered or anything so better get a move on!
Wednesday, 19 May 2010
Decisions...
I went to the hospital yesterday to do a gym session with my physio. I also went last week and managed to get to a fast paced walk for 20mins. And i was still able to breathe okay and hold a conversation with the physio. I went yesterday and was knackered and breathless before id barely started! I struggled to make it for 20mins but was adament i would and really pushed myself to make it that long. This time it was just a regular walking pace and i was really breathless and couldnt really hold a conversation with the physio. This sent her into a bit of a worry mode as never seen me like this before i dont think...
I was then asked if i wanted to do a lung function test. I said yes to this and was happy to do one as i was being nieve and telling myself im sure its all in my head, it wont come back as bad as im feeling. Im just tired is all. (Considering id spent the weekend at my mums and rested plenty!) So i did the lung function test and could barely do a long breath out without it sending me into a state of manic coughing (all the while aware i was going red in the face lol) my "calm down" time was a lot longer than should be. Physio went to get the doctor who basically told me in no uncertain terms i need IVs. I had already figured this one out for myself.
She sent me off for a chest xray - which i was annoyed i couldnt see as the system was down bah! - and it made it slightly better that the radiographer was very yummy :p
Then we had a chat and we talked about my results of lung function. I was 66% and ive been feeling rubbish for a while now which is why i had bought my previous appointment forward as i have exams happening atm, and this is what i wanted to avoid entirely. I was put on a colomycin neb, cipro and a salbutamol neb as id never done that before (how much does it make everyone else shake?!) all of which seem to have not done anything at all. I told the dr the cipro wouldnt do anything as it never does. I always drop after being on that! But never listens to me.
My lung function has dropped from that 66% to 48% in about a week as thats how long ive been feeling like this. That clearly is not good at all, hence the battle comencing about IV treatment. I was told that ive lost 1/5th of my lung and dropped about 18/20%. I was also told im pretty much operating as if i only have one lung. This proper freaked me out and i cant stop thinking about that.
My decision is a very tough one for me, maybe a simple one for others reading this i dont know. But ive got to make the decision to do IVs or not by tomorrow. Im reluctant to do them because of my exams happening atm. I dont want to resit them in the summer time, and with the Unis regulations (which are pathetic and dont help the student one fucking bit!) it will be a long time before i know if i can resit them, as if i dont turn up then im not entitled to a resit. How can i turn up if im in hospital!? These facts do not compute for them people!
I know i need to put my health first and i would go on IVs if not for my exams. Ive worked far far too hard - literally blood, sweat, and a lot of tears have gone into getting myself this far - and despite the amount of interuptions ive had from this stupid disease this academic year, im extremely reluctant to let it take away my POSSIBLE passing of exams!
Im missing out on a placement because i know i wont be able to handle the amount of work for it because of everything to do with health. I feel like im daily putting my life on hold for this pathetic disease and i cant control it right now. I want so madly to finish this degree so i can prove to myself and others who have constantly told me i cant do anything that i CAN do something and will make something of my life
But yet i cant make a decision to put my health first. I know i need to and i know that this should be such an easy and quick decision. If i didnt have exams or even didnt have Uni to tend with i would be currently in a hospital bed receiving my IVs... But thats not the case here and this is so hard for me to decide.
I was trying to find my program leader today but hes like trying to find a needle in a haystack really. I also tried to book an appointment to see student advisors about this and some other things and they said to come back tomorrow as they are fully booked until next week. How, if i cant see the people i need to see to help me make a decision am i meant to decide by tomorrow?!?!
I really feel like just giving up right now as whenever i try to do something, CF stands up and says "i cant let you do that, god forbid your happy and healthy!" :'(
I was then asked if i wanted to do a lung function test. I said yes to this and was happy to do one as i was being nieve and telling myself im sure its all in my head, it wont come back as bad as im feeling. Im just tired is all. (Considering id spent the weekend at my mums and rested plenty!) So i did the lung function test and could barely do a long breath out without it sending me into a state of manic coughing (all the while aware i was going red in the face lol) my "calm down" time was a lot longer than should be. Physio went to get the doctor who basically told me in no uncertain terms i need IVs. I had already figured this one out for myself.
She sent me off for a chest xray - which i was annoyed i couldnt see as the system was down bah! - and it made it slightly better that the radiographer was very yummy :p
Then we had a chat and we talked about my results of lung function. I was 66% and ive been feeling rubbish for a while now which is why i had bought my previous appointment forward as i have exams happening atm, and this is what i wanted to avoid entirely. I was put on a colomycin neb, cipro and a salbutamol neb as id never done that before (how much does it make everyone else shake?!) all of which seem to have not done anything at all. I told the dr the cipro wouldnt do anything as it never does. I always drop after being on that! But never listens to me.
My lung function has dropped from that 66% to 48% in about a week as thats how long ive been feeling like this. That clearly is not good at all, hence the battle comencing about IV treatment. I was told that ive lost 1/5th of my lung and dropped about 18/20%. I was also told im pretty much operating as if i only have one lung. This proper freaked me out and i cant stop thinking about that.
My decision is a very tough one for me, maybe a simple one for others reading this i dont know. But ive got to make the decision to do IVs or not by tomorrow. Im reluctant to do them because of my exams happening atm. I dont want to resit them in the summer time, and with the Unis regulations (which are pathetic and dont help the student one fucking bit!) it will be a long time before i know if i can resit them, as if i dont turn up then im not entitled to a resit. How can i turn up if im in hospital!? These facts do not compute for them people!
I know i need to put my health first and i would go on IVs if not for my exams. Ive worked far far too hard - literally blood, sweat, and a lot of tears have gone into getting myself this far - and despite the amount of interuptions ive had from this stupid disease this academic year, im extremely reluctant to let it take away my POSSIBLE passing of exams!
Im missing out on a placement because i know i wont be able to handle the amount of work for it because of everything to do with health. I feel like im daily putting my life on hold for this pathetic disease and i cant control it right now. I want so madly to finish this degree so i can prove to myself and others who have constantly told me i cant do anything that i CAN do something and will make something of my life
But yet i cant make a decision to put my health first. I know i need to and i know that this should be such an easy and quick decision. If i didnt have exams or even didnt have Uni to tend with i would be currently in a hospital bed receiving my IVs... But thats not the case here and this is so hard for me to decide.
I was trying to find my program leader today but hes like trying to find a needle in a haystack really. I also tried to book an appointment to see student advisors about this and some other things and they said to come back tomorrow as they are fully booked until next week. How, if i cant see the people i need to see to help me make a decision am i meant to decide by tomorrow?!?!
I really feel like just giving up right now as whenever i try to do something, CF stands up and says "i cant let you do that, god forbid your happy and healthy!" :'(
Wednesday, 10 March 2010
Home Sweet Home!
This is the first chance I've had to write this today!
IM HOME!!!!! :D
I was happy to leave hospital, im just shy of a month of being in hospital!! Im still on IV's but its just meropenem now three times a day :D I had my last doses of Ceftazadime and Tobramycin yesterday, and i finish my mero on friday morning, then off to hospital to have my port deaccessed.Then im taking a week or so to rest up at mums, and get fattened up with lush food and then im hoping to get back to uni, then itll be Easter hols so ill have lots of time to rest up then before starting a fresh for my new term in April.
My CF nurse said to me today that she can train me to deaccess my port myself, and i looked at her totally panic stricken!! Im still getting over my fear of needles (ive got about 5 tattoos and i freak at having blood taken and such - go figure lol!) and my port im still getting used to it all and having one, so theres no way i can pull a needle out myself at the moment! Maybe in a few years or maybe less, well see. But i am doing really well at getting over the fear of needles (even my doctor said that :D), i think having the finger prick BM test once or twice a day everyday whilst in hospital actually helped with that haha!! Ive got lots of little white dots on my fingers now.
I know that ive got like 2 days left of my mero and it wasnt really worth coming out so soon to the end, but i wanted to and i think they wanted me to be out by tomorrow at least as its my 21st :D.... in fact i just realised the time and its officailly my birthday :D Im now 21 and old!! Happy Birthday to me :)
Im going to my mums for my birthday with some friends and mums prepared a little buffet thing for us all, and were just guna chill out, watch some films, and embarress ourselves on the Wii :D
I was going to go out drinking with friends on Friday night but im still way to knackered for that now and ill still have my IV meds in my system, and last time i drank after coming off them... well ill just say it wasnt pretty, and i looked like death :| So im going out in a few weeks when im pretty sure im all clear :)
I was talking to my physio today before i was discharged and she said itll pay me to get out of hospital as then i can gage when im off the meds what is making me feel so rubbish all the time, whether thats the meds, generally being in hospital, or the fact that this infection has just really battered me and i just need my rest to recharge my batteries so to speak. Ive made a really good plan for physio during the week and weve fit it all in around my lectures and things. Once the summer arrives ill be able to go back out there and start running again, plus im getting my gym sorted out and am hopefully having my induction next week.
I was joking with Emily saying that i need to go on some sort of course to be rehabilitated back into society... that is depending if they'll have me :P
On a closing note, im so happy for Rachael Wakefield who got the call for her new lungs! I dont really know her well, but i know she is a very strong women and all my good luck thoughts are with her! :)
IM HOME!!!!! :D
I was happy to leave hospital, im just shy of a month of being in hospital!! Im still on IV's but its just meropenem now three times a day :D I had my last doses of Ceftazadime and Tobramycin yesterday, and i finish my mero on friday morning, then off to hospital to have my port deaccessed.Then im taking a week or so to rest up at mums, and get fattened up with lush food and then im hoping to get back to uni, then itll be Easter hols so ill have lots of time to rest up then before starting a fresh for my new term in April.
My CF nurse said to me today that she can train me to deaccess my port myself, and i looked at her totally panic stricken!! Im still getting over my fear of needles (ive got about 5 tattoos and i freak at having blood taken and such - go figure lol!) and my port im still getting used to it all and having one, so theres no way i can pull a needle out myself at the moment! Maybe in a few years or maybe less, well see. But i am doing really well at getting over the fear of needles (even my doctor said that :D), i think having the finger prick BM test once or twice a day everyday whilst in hospital actually helped with that haha!! Ive got lots of little white dots on my fingers now.
I know that ive got like 2 days left of my mero and it wasnt really worth coming out so soon to the end, but i wanted to and i think they wanted me to be out by tomorrow at least as its my 21st :D.... in fact i just realised the time and its officailly my birthday :D Im now 21 and old!! Happy Birthday to me :)
Im going to my mums for my birthday with some friends and mums prepared a little buffet thing for us all, and were just guna chill out, watch some films, and embarress ourselves on the Wii :D
I was going to go out drinking with friends on Friday night but im still way to knackered for that now and ill still have my IV meds in my system, and last time i drank after coming off them... well ill just say it wasnt pretty, and i looked like death :| So im going out in a few weeks when im pretty sure im all clear :)
I was talking to my physio today before i was discharged and she said itll pay me to get out of hospital as then i can gage when im off the meds what is making me feel so rubbish all the time, whether thats the meds, generally being in hospital, or the fact that this infection has just really battered me and i just need my rest to recharge my batteries so to speak. Ive made a really good plan for physio during the week and weve fit it all in around my lectures and things. Once the summer arrives ill be able to go back out there and start running again, plus im getting my gym sorted out and am hopefully having my induction next week.
I was joking with Emily saying that i need to go on some sort of course to be rehabilitated back into society... that is depending if they'll have me :P
On a closing note, im so happy for Rachael Wakefield who got the call for her new lungs! I dont really know her well, but i know she is a very strong women and all my good luck thoughts are with her! :)
Wednesday, 10 February 2010
Port Operation
So im going into hospital tomorrow as im having my first port fitted on Friday.
Im going on IVs afterwards and my meds are being changed so im staying in hospital for a while. But thats okay, as ive got my friends supplying me with DVDs :D
Im pretty nervous about my op. Ive been getting really pissed off with people as ive been worrying about im scared about it, and people think that im being silly. I know its only a minor operation and such, but its still an operation!! The only one ive ever had was when i was a baby and i obviously dont remember that!
So im just going to keep feeling whatever i want and if people dont like it tough shit. They arent the ones in my shoes after all really, and so really havnt got a single clue while they go along with their happy healthy lives.
To be honest it might be nice to be in hospital for a while anyway, things have been a bit tense and stressy at the house im living in with friends and a few arguments have taken place. Mainly between me and other people, but if they actually took the time to listen to me and things then maybe arguing wouldnt happen. Im one of these people who will voice my opinion and thoughts about you whether you like it or not. Up to you to listen to me about them really. As long as i say my peace and theyve got nothing to say back to me, i leave it at that. I know some people have been talking about me behind my back, and behind closed doors, and i think personally that thats just cowardly! If people have something to say then say it to my face and at least give me the opportunity to explain and things, not just draw their own conclusions, as they really have no idea whats going on in my head!
But lately my moods have not been the best, and they really havnt been the best time to piss me off with petty things. So its not my fault for standing up to people and standing my ground. Wether i have to do that yelling or not i dont really care either way. People learn eventually that when im in that mood, you dont come near me, unless you want to loose your head.
So ive got plenty of films to watch and im taking some coursework in aswell so ill be kept pretty busy as i get sooo bored in hospital.
I also dont get internet in there and ive not got a dongle thing so i cant supply my own. So im going to write any blogs that i would do normally in a word doc and then copy and paste them in when i get internet back again, which will be when i come home.
Write again soon
xx
Im going on IVs afterwards and my meds are being changed so im staying in hospital for a while. But thats okay, as ive got my friends supplying me with DVDs :D
Im pretty nervous about my op. Ive been getting really pissed off with people as ive been worrying about im scared about it, and people think that im being silly. I know its only a minor operation and such, but its still an operation!! The only one ive ever had was when i was a baby and i obviously dont remember that!
So im just going to keep feeling whatever i want and if people dont like it tough shit. They arent the ones in my shoes after all really, and so really havnt got a single clue while they go along with their happy healthy lives.
To be honest it might be nice to be in hospital for a while anyway, things have been a bit tense and stressy at the house im living in with friends and a few arguments have taken place. Mainly between me and other people, but if they actually took the time to listen to me and things then maybe arguing wouldnt happen. Im one of these people who will voice my opinion and thoughts about you whether you like it or not. Up to you to listen to me about them really. As long as i say my peace and theyve got nothing to say back to me, i leave it at that. I know some people have been talking about me behind my back, and behind closed doors, and i think personally that thats just cowardly! If people have something to say then say it to my face and at least give me the opportunity to explain and things, not just draw their own conclusions, as they really have no idea whats going on in my head!
But lately my moods have not been the best, and they really havnt been the best time to piss me off with petty things. So its not my fault for standing up to people and standing my ground. Wether i have to do that yelling or not i dont really care either way. People learn eventually that when im in that mood, you dont come near me, unless you want to loose your head.
So ive got plenty of films to watch and im taking some coursework in aswell so ill be kept pretty busy as i get sooo bored in hospital.
I also dont get internet in there and ive not got a dongle thing so i cant supply my own. So im going to write any blogs that i would do normally in a word doc and then copy and paste them in when i get internet back again, which will be when i come home.
Write again soon
xx
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