Decisions

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.

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.

messy head

I don't know what this blog is about exactly but i need to clear my head somehow.

Its like my head is really full up with everything and i just cant clear my head. Its affecting my sleep, and stressing me out so now i can feel myself going down hill again just when id been making some good progress. Progress which the hospital didn't see as its all happened between appointments and so i know they wont fully believe me that things did improve for a while.

I'm stuck in a slump and once again I'm not sure how to get out of it. I have everything in my head on a "i could do this tomorrow" sort of list, but i just keep waking up and thinking "oh good, same crap, different day." Which is not how i want to be waking up! The weekends are better as i know I've got company 'coz mums not at work. I'm extremely looking forward to the summer holidays that the schools have just so mums at home and I've got someone to spend time with and do things with!

I'm really trying to get myself back onto my schedule of Neb's etc, I'm just finding it hard to get motivated. You think the fact that i know not doing my treatments regularly will make me worse would be something to motivate me. I don't want to end up on a transplant list, i don't want to get sicker than i already am, i want to do so much with my life, but at the moment i just cant get motivated or energised to do anything! All i seem to be able to do is sit around in my pj's all day, and I'm either just plain emotional and wanting to cry all the time over heaven knows what, or i just feel really angry at everything. Literally everything including my oxygen tubing, i got so pissed off with it the other night, being so hot on my face and being uncomfy with it i ripped it off my face and threw it across the room.

I want to know people but i don't know how to go about it because I'm not confident to go out on my own lately 'coz all i do is choke and stop every 5 mins. I hate being stared at like I've got some catching disease or something.

Maybe i just need to start writing things down a lot more, not always on here, some things i feel are too personal to put on here. Besides i don't actually think anyone really reads this blog apart from one person i know of.

Sometimes i wonder whats the point.

wheelchairs and exams

I sat my first exam yesterday! It was an early morning one, which was all fine when i lived in Bristol last year, but this year I've lived at home for health conveniences and so i have to get a train and buses to get to Uni if i need to go.
There was no way i would be able to manage on my own as the connections for the buses when i got off the train were a bit hurried and i just cant do "hurry" right now. Hopefully i will again soon!
So mum came with me and we took the wheelchair that I'm hiring for 6 weeks from the red cross. I didn't initially want to take the wheelchair as i didn't want my friends to see me in one, i know that sounds a bit stupid, but who does want their friends to see them like that really? It just accentuates how different you are from your friends, how different your life is to their "normal" healthy one.

But i thought about it in the days leading up to my exam morning and i realised i wouldn't be able to cope walking so it was really in my best interest to use the wheelchair, i mean what else did we hire it out for if I'm not going to use it! So yesterday we got up at 5am, and the taxi we had booked arrived at 6am as we had to get the first train at 6.40am to be able to get there on time.
Although it only takes 1/2 an hour via train from mine to Bristol we had to get that train so we could make the buses that would get us there on time, if we got a later train we wouldn't get the buses on time as their timetables don't coincide with each other. So we ended up getting to Uni for like 8.10am or something like that and my exam was at 9.30am 'till 11.30am.
Me and mum went to one of the cafes on campus and i had a friend come up and meet me so i had someone to walk over the exam room with, as that wasn't far and was on relatively flat land so would be easier. I bought mum a coffee and a danish cake before i left for my exam and then went back to her after my exam was finished. Its lucky my exam was only two hours and not three like Fridays will be 'coz mum looked pretty bored when i got back ha ha! She couldn't really explore the uni as she had the wheelchair with her.

My exam was okay i suppose, i do think it will be a resit as it was a case of i knew the questions and it was things id revised (which made a nice change) but i couldn't for the life of me clear my head enough to remember stuff from my revision to answer them :( I tried my best and I'm trying to instill that "that's the best anyone and myself can ask for" saying into my head so i don't feel too rotten about it. At least this year i have managed to get some extenuating circumstances for my exams and my previous courseworks so if i do need to resit any exams or coursework then i wont have to pay for it and it wont be capped either! :)

Ive just got Fridays three hour (fun) exam to get out the way with then and its just 2 group presentations then at the end of the month which i think we've all pretty much prepared for and just have a little bit left to do on them which is good! If i do have resits to do, which i am expecting to, not because i don't have confidence in myself this year, but because i had so much interruptions during third year i didn't really "learn" anything properly if that makes sense... then it means i wont be graduating in July i think it was but instead it will happen in November. Which isn't too bad, as long as i graduate at *some* point this year i don't really mind!!

Being in the wheelchair its given me a different perspective on CF and my life in general. Its making me want to walk a bit more so that's good! I am trying to get up to get myself a drink or food instead of asking mum to get me something, unless its something large that needs cooking, i havn't quite gotten there yet. Though i did manage to make scrambled egg on toast the other morning and i'm still alive :D Ive never had much success with cooking eggs myself ha ha!
I said about being on overnight oxygen in a previous blog and i said that its making my chest looser in the mornings, but i wasn't sure if that was due to the oxygen or not. But I'm beginning to think its a combination of that and the bumpy roads we sometimes have to go over in the wheelchair, its shaking up my chest like a fizzy bottle and this morning I'm clearly so much junk its great! Its a bit dark tho which in the past usually signifies that I've got an infection or one brewing at least, so ill have to step things up for a bit and see how things are at next clinic. I'm back at the gym now and told my trainer i want to do some weights as well now along with cardio and so i did a small circuit the other day and I'm back tomorrow morning when well work in some cardio to my weights circuit :) Were starting gentle again as i had a month off for various reasons and coz i don't last for exercise for very long at the moment, but hopefully i can build up my tolerance.

Anyway better get back to my revision :| Ill be glad when its Friday 5pm as that's when my exam finishes and I'm free!! Sort of :p

Changes and revision

Im taking a nice break from revision to write this posting :)

Ive not gotten as much done revision wise today as i would have hoped/wanted too, but ive been SUPER tired all day. I got up at 8 something this morning because i had to. Miraculously jumped straight in the shower, got out and was ready to go back to sleep! Managed to finish sorting myself out and by 10am i was kipping on the sofa until 11am! Not how i wanted my morning to go, but i just couldnt keep my eyes open.

Eventually i managed to get some revision done, then i started to crash again after lunch. So me and mum went into town for some fresh air and some things we needed to get. And also some things i got that didnt really need to get but still did!

Ive got a wheelchair for 6 weeks that im hiring from the Red Cross. So we took me to town in that yesterday and today. I was a bit self conscious of being in it at first, as the only other times ive been in a wheelchair is when im an inpatient and being taken to x-ray or something, even then im self conscious. I think its because of the fact that i know i have the use of my legs, and im not saying all wheelchair users i see dont have the use of their legs, i know some do, and they are using the chair for unseen reasons perhaps, like myself. But walking for me lately is just ridiculously hard and im knackered after 1/2 an hour or some days less so things like shopping trips like we used to have been out of the question and most of the time i just wouldnt go out at all as i knew the pain i would be in when i did start walking.

Another recent change is that ive been put on home oxygen for during the night. I did an oximetry testing for a few nights at home and gave the machine back at my last clinic. The physio rang the other day to discuss the wheelchair options and talked about the oximetry results as well. Apparently my sats were dropping to around 90 most nights and my heart rate was usually in the hundreds. I think i remember looking at the machine once when i woke during the night and my heart rate was around 130! So not really normal... So even tho these results are borderline apparently of something they think that overnight oxygen would be of some benefit to me. Im on 1 litre and then in 6 weeks time they want me to do another set of oximetry tests i think using the oxygen and then they will reassess if needed depending on those results.

Im not sure how i feel about it all really. I mean i knew what the results would show as the things that the physios were saying that indicates a need for oxygen i am getting, and a lot was in the morning. Countless times ive woken up with a stuffy headache and blue nails.
Im worried that this is the "beginning" of oxygen needs and that theres more to go downhill from here now. I worried that my lungs will become dependant at night for this air and then suffer during the day when its taken away in the morning... We shall see how things go. At least im not coughing so much at night now!
Its only been 2 nights that ive used it so far as it was only all delivered on friday, but my chest is already nice and loose in the mornings. I dont know for a fact if this is because of the oxygen or because my lungs want to behave for a while, but its reducing my coughing fit in the morning which is reducing the either almost throw up or actually throwing up, and that cant be a bad thing!!

Theres not really anything else to report on i dont think. Mums taking the day off work for me on tuesday so she can take me to my exam as it starts at 9.30 and it means hurrying on trains and buses to get to the uni on time. At the moment i will be taking the wheelchair to make my life easier and mean i will be less knackered during my exam, but this could change ill see how i feel.
It does amaze me however the difference in the world you see when sat in a wheelchair and how much nicer everyone suddenly becomes! It also shocks me the places some people choose to suddenly stop in the middle of the path without bothering to see whos behind them! Very annoying.

*sigh* back to revision i suppose. Hope everyone who reads this is well and happy as they can be!

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.

Get up and go

A while ago, my "get up and go" got up and went completely. I was pretty ill for my standards for i would say a good few months and its left me with a lot of issues i didn't have to deal with before, like 38% lung function and 45kg in weight.

But the past few weeks i think its been coming back. Albeit slowly yes, but its getting there. I think the sunshine has helped, i hate Winter, it does nothing for me at all except hospitalise me or house bound me further as the cold now makes my lungs bleed a great deal and that freaks me out no matter how many times its happened! But i think that feeling is the same for most people when they cough up blood...

Ive started doing my dnase again in the mornings, I'm able to wake up and actually get up earlier which means i don't get a headache all day from being in a hot room and sleeping all morning. It also means i can have breakfast which means more calories to take in each day :)
In the evenings now as its usually quite nice me and mum go out for a walk, its not long walks across the fields, usually just around the block as that's all i can handle right now. But i want to build it up, i desperately want some strength back in my lungs! The walk does help me, i can clear a lot sometimes, other times not so much but that's okay.

I am still going to get a wheelchair, I'm waiting for the team member who deals with that sort of thing to get back to me about it, as i still cant handle long day trips out, and that's bothering me a lot more than not being able to walk to town right now, as its not fair on mum, especially when she breaks up for summer holidays (she works in a school so she gets all the holidays they do which is really nice). So well mainly be using the wheelchair for when were wanting to go further afield for shopping or a day out or something. I might use it if I'm having a particularly bad day and we still want to go to town, but otherwise i would still like to walk about town. I don't want to become reliant on it as then ill get no where with getting myself fitter.

I'm going back to the gym, i just need to book some appointments in with my trainer and i want to start doing walking on the treadmill on a slight incline, some time on the bike and i want to start doing some light weights again so i can start defining some muscle and not have stick legs come summer time :p Plus if i can develop some muscle it might add some weight on me as well, as muscle is heavier than fat! That will shut my dietician up, its my mission in life right now to prove to her i can do this weight gain on my own, i just need her to stop mentioning all the time when she sees me how thin i am, and how i need the PEG. I think if she mentions it at the next appointment i will explode at her. I still don't think that the dieticians understand one bit how hard it is for a CFer to gain weight, no matter if they eat 14 KFCs each week or something extreme like that. Just because they might specialise in CF doesn't mean they understand it for how it is for the actual patient, no matter how much the patient tries to explain it... Rant over :p

I went to town today, and for the first time in a while i didn't feel sick and need to sit down every 5mins! I was able to stand and walk around the shops, still at a snails pace which i think annoyed people who got stuck behind me but never mind!
I'm beginning to think that i have an addiction to buying PJ's. I got some Animal PJ's from Peacocks today, its a t-shirt type top with Animal on it, and the trousers to match which have images of him on there and the word Animal down one of the legs :) I also hate my neck and top of my chest getting cold and as i wear a lot of vest type tops i find myself wearing my scarf still if I'm outside and its breezy, so mum took me to the outdoor market today and i got some of them better, fashionable scarfs that everyone wears. I got two for £10, which is better as i was going to get one in New Look that would have cost me £8 so i saved some money there :) Now i cant stop wearing them! One is a black one with a pattern stitched in white and its got some feint reddy brown stitching going through it as well, and the other is white with lots of "blobs" of color all over it. Ill try and put some pics up later if i remember!

Anyway I've rambled enough now, i better get on with some revision!

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

PEG

As some people know i am getting my PEG put in on the 29th and i am bricking it about the procedure!

I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!

So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.

So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.

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!!

Daily Trials

So I'm still not much better. I mentioned in my last post about the terrifying possibility of needing a PEG soon as i cant keep weight on if i can manage to gain it at all that is.

I was feeling optimistic about the fact that i might not need it as i was feeling like my eating was starting to pick up a bit each day. But the past like week maybe, those optimistic thoughts have been diminishing daily. Although I've been trying my utmost hardest to eat and eat little and often as having the regular large meals and snacks in between wasn't working for me. But i keep throwing up :(
Sometimes its because I've coughed too hard and too much as i couldn't catch my breath in the morning when i first wake up, sometimes its just random and just happens. Its usually those times that are the worst and most violent :(

I couldn't sleep the other night as all i was thinking about was this stupid PEG. They say things come in threes. The first was my port, indicating to me that my veins are rubbish now and there's a future waiting for me containing more IVs. Now the second is a PEG... what the hells next?! I hate to think.

I feel incredibly frustrated about everything that's happening. Its like I've lost control of my own body and i hate it. Its quite scary sometimes really. I don't feel like theres much point telling the team any of this because A. they wouldn't actually get it as much as they write things down and say "yes i understand" they just don't get the emotional part of living with a debilitating disease that sucks the life out of you some days that all you feel you can do is sit there and just cry and cry. and B. There isn't anything they can do about this, so whats the point in telling them? ...

I wish more than anything now that i didn't have to do Uni. I just don't have the stamina left for it anymore. One day at uni and I'm shattered i can sleep for 2 days! And with some assignments due and some waiting to be set doesn't help get my stress level down. The Uni don't help much with regards to things like extensions as they don't offer them no matter the circumstance. If you were in a coma and had an assignment due in before you went into said coma, they would fail you for not having for seen said coma and handed in the work early, and charge you £50 to resit and cap you at 40% . That's how helpful the Uni are.

I tried to have a nice normal day out shopping with mum yesterday and i felt fine when i woke up, managed to take a shower and was a bit knackered out after that, but still managed to do my physio and have breakfast. Felt fine on the train to Bristol, and then when i got there started to feel a bit sick. Thought i was just a bit thirsty so we went for a coffee first, i had a lemonade as that usually helps to combat sickness feeling for me. But it didn't work and as the day wore on i felt progressively worse and more strangled for breath when walking. I had to keep sitting down in the shops while i told mum to go have a look and ill catch up with her. By the time i caught up she was finished and i wasn't in the mood to have a look for myself. I thought maybe i was just hungry and so we went for lunch at a place we love called Bella Italia. Got a pasta dish i know i like and shared it with mum. Barely managed 3 forkfuls of food, before i went to the toilets and promptly threw up everything from breakfast to right then. Although i felt a bit better, i was then incredibly hungry but still unable to eat anything and had a very sore stomach and throat :( Paid up at lunch and i tried some more shops as i didn't want to ruin mums first weekend out in a long time any more than i already had. I managed about another 3 shops maybe and couldn't go on and so we went home early.

I still feel bad about it now the next day even though i know we can always go back and finish the shops we didn't get to another weekend, but that's not the point for me.

I'm just so fed up with pretty much everything right now. Plus with Annual Review as my next appointment now i don't think things will be getting much better. In my opinion even if i do manage to put weight on it wont show at the appointment 'coz i have to starve myself for them stupid blood tests and if it does show its gone up it still wont be enough for them to piss off and leave me alone.

Never say Never...

Ive been meaning to write a blog for ages now, its just that every time I've loaded the page to write things that are swirling in my head, i cant put them into sentences no matter how hard i sit there and try.

I'm still not totally sure how this post will turn out, but I'm just going to type and see what happens.

My thoughts of late have been pretty much 100% focused on CF. Sounds strange as living with this disease you'd think that i was thinking about CF all the time anyway. But i don't. I try not to anyway, otherwise i just get myself into a right mess in my head and i cant focus on anything. I loose myself, and its not a nice loose myself like when I'm staring at the clouds making pictures, its like i get trapped in my head and I'm surrounded by all these nasty, horrid thoughts and scary possible futures. Its tough to deal with, and tough to get out.

God! i bet i sound like a right mental patient!! But oddly, lately thinking constantly about CF hasn't trapped me in my head this time. Its like i found the window in there and I've been able to open it to allow some of the nicer thoughts in that were stuck outside before. The good realities that could happen instead of the nasty, horrid ones. Don't get me wrong they are all still there, its not like they all floated out the window.... but, well its like they've gotten smaller, less threatening and scary.

Honestly I'm not sure what changed to make them less scary, but I'm glad of it! I feel a tiny bit more free from the grasp of CF. Tiny doesn't sound a lot, but it feels huge to me. Perhaps its because I've been less stressed. I haven't been well AT ALL lately, and I'm only just now feeling like I'm getting to put my feet back on the floor. My toes are touching the floor at least. Usually when i get ill i worry about Uni and about the extra care i need to put into getting better, but still maintaining my coursework (the uni don't give extensions in any circumstances, so its hand something in or fail, submit extenuating circumstances and hope u can resit for free and uncapped at 40% in the summer) and general life. But this time, getting this ill, it put a lot into perspective. I made a pitiful attempt at the coursework i had due in 'coz that was literally all i could handle, a friend kindly handed it all in for me and i handed in my exten circs to resit in the summer before i graduate this year. I didn't get stressed about the coursework once, or worry about handing it in and passing. I just didn't worry at all about anything to do with Uni. I put it all on the back burner and just ignored it. I put all my energies into getting better. Which was and still is very hard.

I don't know what made me change this time around. I had been told how sick i could get and heard stories, seen other CFers put things on their blogs and facebook about things happening to them during infection and i just thought every time, i thought, "ah that wont happen to me 'coz I'm not that bad with infections" I thought naively that all my infections were the same each time. Extra tired, lack of energy, lack of appetite, increased cough etc etc. But this time was totally different, and threw me right out of my naive comfort zone.

I was throwing up constantly, i was coughing so much i couldn't breathe, i was coughing up blood for the first time ever, i had temperatures that made me feel like i was a melting snowman in the blazing sun, my heart felt like it was trying to burst out my chest, i could barely get out of bed for energy, i couldn't eat 'coz i felt so nauseous all the time. There was just no let up at all! I ended up in hospital, my sats were in the low 90's which is totally not normal for me as even during past infections they've not really dropped, and i was put on oxygen for the first time ever. When i thought i would never be on that. I had to have an ECG to make sure my heart wasn't doing anything they couldn't see with the increased numbers, my temperature was sitting at best around 38 at highest it got to 40. I was very ill for my standards. I was also very scared but i wouldn't admit that at the time. My lung function dropped to 38% and my weight down to the low 40's kg...

Its taken a lot for me to get to where i am now. Which still isn't better, not at all really. Sure all my numbers baring weight and LF have improved but its still not good enough. My appetite is coming back slowly, the past 2 days have been good for eating, including eating a cake i made with mum!
I'm trying to best to be compliant with my nebs and meds, but getting back into a routine is proving harder than it has before.

But ill get there. I always do eventually...

Feeling Good :D

I'm feeling pretty good these past few days, so im taking the opportunity to write a blog about and make it a bit happier for a change :p

Ive finally been able to start at the gym near me!! Ive only done two work outs there so far and as my personal trainer is off for 5 days now im not back until the 16th. But those two days already have given me the chance to feel like my old self again!! Ive had energy that ive not known what to do with, granted im not waking up and jumping out of bed yet, but its a tiny step towards that! Though not being a morning person i doubt ill ever be bounding out of bed with energy haha! :)

My personal trainer is so nice! I had a consultation with him and explained about having CF and he wrote pretty much everything down that i said, and we filled out some questionnaire thing together to find out more about my condition and for their records as well. I was for once in my life, honest about how CF affects me and what it is and everything like that. I usually try to dull it all down as "just a bit of a manic cough" i think more to stop myself gettin all moppy about my reality, but i thought this is my reality. Im 21, its time i start accepting things properly and pulling my finger out my arse! So thats what im doing :) Im still struggling to get back into my old nebs routine, but im really getting there. Dave (my personal trainer) went away from the consultation meeting and did lots of research about CF and all the meds that im on and everything, so hes properly clued up! This really settled me. Im usually like most CFers i think pretty embarressed about the whole coughing up lovely looking mucus and things like that, but hes always on hand for tissues, making sure im getting it out like im meant to, making sure im hydrated and not pushing myself too much, but just enough to get things working.

I have problems with not knowing my limits, and then if i do know my limits with something i ignore them and push on anyway. It gets me into problems a lot. But hes keeping me in check! Making sure i start off small bits and working my way up to longer exercise routines. I managed 10mins in my first session and then 15 mins in my second session. I felt a bit pathetic after that first session for only having been able to manage just a meger 10mins of exercise, but he said that its 10mins of exercise i didnt do yesterday and so thats something to be pleased of! I was still a bit annoyed at myself, but i think that it was just my stubborness of not recognising my limits showing through, as after i finished the 15mins session i was really pleased that i had managed to go for 5 mins longer than before! Im aiming for 20mins next time.

We've set a target of 55% lung function to be reached by my next hospital appointment, which is in December on the 3rd. Im 45% at the mo, so a 10% gain is a realistic goal that i feel i can reach! Im so happy :)

Im also feeling inspired lately, which is helping me with my Uni work! Im doing a lot more sketches of random layouts for sites, and i just dug all my old art and crafts stuff out my cupboard and feeling even more inspired to get back into my creative self.

I honestly hadn't realised how much i had changed lately and just seemed to stop bothering with anything that made me happy, as i guess i didnt see the point for some reason. But last night i was feeling the happiest ive felt in a long time, and i was making mum laugh by being the idiot that i am :) and she said that it was good to see me getting back to my old self. Apparently i had been really moody and sad a lot lately and i hadn't noticed.

Its amazing what a bit of exercise can do for you! Can't wait to get back to the gym next week!

Now all i need is for the weather to clear up so i can get out and take some pretty pics with my new camera!!

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...

Health and Uni...

So i managed that full week at Uni last week that i was hoping i would be able to do. It was tough, but i stuck it out :)

My cold that i had is all gone now, apart from the stuff that went down onto my chest thats making my life hell at the moment. I was really struggling for breath yesterday and was out of breath just sat reading my book on the sofa! I had to get up off the sofa in small stages just to go and get a drink. Today my chest isnt much different, im rattling like a car engine, and no amount of nebs and such seems to be shifting it all like normal :( Im hoping this is just a rough few days ahead of me, and not something thats long term as ive got hospital on the 29th of this month and really dont want to go on IVs :(

Im a bit more settled at Uni now. Apart from having a good full week in uni, ive not been in an amazing mood really. I was really down during last week for reasons i dont want to put on here for now. But i had a cuddle with my mum and a good cry ('coz sometimes thats all you need to do!) and i chatted with a friend, and felt a bit better about things.

Im looking into driving schools now, as i think im finally ready to learn to drive. I think if i get behind the wheel and just do it and have a go, ill get a better feel for how i feel about driving. Either way i think my confidence is better now for learning than it was a few years ago. Besides, then if i can learn to drive and be along side all the other maniacks out there, then surely i can do a class presentation right?! haha

Im really looking forward to the 27th of this month as ive got my Web Developers conference to go to :D This will be the third one ive been to in a row. I love them! Its exciting for me to be able to meet and greet other web designers/developers who are out there and making it either on their own or as a company. Ive found out a few good things at these conferences, and they really inspire me. I just hope this year i have the oumph to go up to these people and speak to them!!

Until then ive plenty of Uni work to be getting on with. We get our clients soon for my Consultancy Project, and im working on sorting out an idea for my Digital Media Project, also i had the best week last week and actually fully followed and understood a lecture and a tutorial on advanced PHP!! This didnt happen once last year as i was so rubbish at PHP code, but i put in hours of study over the summer for this code and now im so much better at it, and can actually understand what on earth the lecturer is talking about haha! It was the highlight of my week really :p

Uni

I'm really looking forward to Friday (24th) as I'm going back to Uni. Ill only be doing induction that day, so its all the welcome back talks and telling us if anything has changed - not too much i hope! I got to finally register online the other day so that's all sorted now.

I passed my resits!! :D I was extremely shocked, i honestly thought they hadn't gone to plan at all! on one of them i only did just pass by like 1 mark but still I PASSED :D I got a text from my friend to say they were up online and i did that arms flappy thing and got all flustered haha! I'm so happy i passed them though they were worrying me something chronic!

I got my new timetable as well the other day. Literally the best timetable in the world I'm sure!! I'm in on Mondays, Wednesdays and Thursdays. Ive got Tuesdays and now Fridays off! (we were in on Friday for the first 3 weeks but now they changed it) Its cut my travel costs down a bit so that pleased me, and my earliest start is 9am on a Thursday, which is also the day i finish the latest which is 4pm. Otherwise i start around 10am and finish sometime in the afternoon.
I'm still expecting the flood of work however so the days off will come in extremely handy for me eventually!

Living at home i think will help me out a ton as well, as i wont be living with the certain people on my course who make literally everything a competition which makes me feel really stressed more so. Most of the competitors on my course are on placement as well now so i wont even be in class with them either, which will make life so much better for me with regards to uni! Maybe now i can actually concentrate on the lectures and tutorials instead of sitting there getting all annoyed and upset 'coz i don't understand everything I'm meant to and they do. Sounds silly i know but that's just me really. If everyone else gets something and i don't, my brain pretty much just shuts down.

Ive got a few things to sort out with the DSA people at Uni, with regards to travel help and such and i need to sort something out for my notetakers. Last year i had two of my course mates taking them for me (they got paid more than i do for DLA in a month, maybe even a year, which is stupidly ridiculous as i don't think they should have been getting paid at all) but they are on placement as well now so ill have to sort something new out. I don't know if ill have one, as I've got my Dictaphone i got from my DSA equipment and i think i might concentrate more if I'm taking my own notes. Plus then ill understand them, as if i have a notetaker from the disability department, theres A) No guarantee that they will be there for all my lectures (totally defies the point of a notetaker to me) and B) It means ill understand what the topic(s) is about compared to someone taking notes who hasn't a clue what they are writing about and misses out all the important stuff. Which is why i had the people on my course take the notes last year as they knew what to do.

Anyway, other than all that I'm doing wellish health wise. Ive had a few episodes of chest pain and i had a plug the other day that i just woke up with, it was really painful and i began to think i had a partially collapsed lung, but then when i was coughing and i felt it start to shift i knew it was just a plug - thank god!! Ive never had a collapsed lung and i don't fancy it, but I've asked the team about it just so i know what to look out for. Ive started eating a LOT better now as well, I'm back to stuffing my face in the evenings and I'm eating breakfast again as well :) My energy is picking up nicely and i can now get out of bed properly around 10am if not before some mornings, without feeling like id been out partying all night. Ive started a sort of diary thing, its mostly for food, to show my dietician i do eat and that it is fattening foods and things like that. I hate my dietician, more so since she said you could give an anatomy lesson with my skinny arms!! I also put in things about physio in there as well, and whether I've been on any walks or something, and generally how I'm feeling that day. I started it mostly with just a food diary in mind, but i think it could benefit the other members of the team as well if i put other things in there as well.

Other than all that i don't think theres much else to tell really...

Exams and Uni

I'm so tired today! I was up late last night watching the shooting stars with mum in the garden, i made sure i was wrapped up, i had a hoodie and a coat on and then was led on the sun lounger mums got and she wrapped me in a blanket, and i had my hood up :) I was so nice and warm! I saw about 5 or 6 shooting stars and then 'coz i was so warm i started to fall asleep haha! So i ended up going in and going to bed, which i think meant i missed the best part of the "show". Which is a shame but the few i did see, was worth it.

I'm trying to revise today, but its proving rather difficult due to being so tired today! Mum let me have an extra half hour this morning, which usually does the trick, but doesn't seem to have today :( My first exam is Monday morning, and i don't know how I'm going to manage it. I have to get up at 5ish in the morning to be able to get the train at 6.40am! I have to get up this early 'coz I'm not living in Bristol any more, so cant just hop on a bus half hr before the exam begins :|
I have to b there for 9.15am, the exam starts at 9.30am, but they start calling the rooms to be filled about 9.15am and its easier to beat the rush.

My other two exams are the 18th and 20th of August, with hospital after the last exam on the 20th. Which i think is a morning exam, so I'm going to be absolutely shattered for my lung function and things :( Not looking forward to it all really.
I'm being a bit of a defeatist about these exams. I'm trying not to be, I'm trying to keep positive and think all the right thoughts, but it doesn't always work really. I honestly wish i didn't have to resit these stupid exams, and at £50 a time, so I've had to fork out £150 of money i didn't really have to fork over like that. But needs must i guess.

I always knew that fulfilling my dream of Uni wasn't ever going to be easy, as i knew Uni is a lot of hard work. But i never once considered in the years of lead up to Uni that my health would have such an impact and be so interfering! Every time i have a tone of coursework due in, or my exams happening, no matter how compliant i am, my health just bombs on me and i end up in the worst condition ever! Then i have the stress of trying to work through that as well as work through Uni. Which makes me ten times worse 'coz I'm stressing too much about one rather than the other or even.

Ive thought so much these Summer Hols about weather i really want to continue with this Uni malarkey or not, and a large part of me still does, just so i can prove to myself mainly that i can do something and I'm not the thick shit i constantly think i am. It would also be nice to turn around and tell all the them people who never said id make it due to health or due to poor grades, to suck it and tell them where they can stick their lack of support! And i know how proud it would make my mum and i think in a small way my CF team as they've seen as well how much pressure i put on myself and how many interruptions I've had during the most important and not so important times of Uni years.
So i do want to continue and graduate etc. Its just the getting to that graduation day that is proving the hardest part!
I'm going to stick my foot down this year and make sure i get a bit more help, and make sure that i get exten circs when i need them, weather I'm on IVs or not, or in hospital or not, if I've got a flare up and it boosts my daily care then I'm applying for them circumstances. The worst they can do is say no, but i think i can provide a good case for them to not say no.

I think that with 2 certain people from my course - 1 of them more than the other - being out on their placement year, then ill feel a lot more confidant in lectures and tutorials as i wont be sat there worrying that they get it all the first time around and i don't, and then getting myself into a right flap and breaking down all the time. Without them providing the flow of competition (that one more than the other again, they compete at pretty much everything in life, I'm pretty sure they would compete about who has the worst cold when they are around someone else with one!) ill be able to feel better about my work, and about the lack of understanding. Perhaps the clouds will clear now that they wont be there...

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!

Tough times

I'm starting to think that my refusal of IVs was a stupid idea. I said to my doctor that i can do this myself, get a bit better i mean. I feel like i was way too optimistic. I'm really struggling here. Caught in a vicious circle: - I need energy to do things such as make food, but i have no energy to do that so nothing gets done about it.

My chest is full of it, i can feel it when i cough. I'm doing all my neb's and things which is helping a bit, but i feel like they are a case of they blow the clouds away for a while but they soon knit back together, if that makes sense?

I'm this close to giving up and ringing the hospital for IVs. Which makes me really sad and really angry at myself and more so at CF. Why cant it just fuck off for a change!? Actually let me be happy for a while.

I don't understand how most of the other CFers always seems so happy and calm and things like that. I can barely slap a smile on myself at the moment and i think its worrying my mum. Hell its worrying me. I don't like being like this, i don't like feeling like CF is beating me with a stick right into the ground.

I hate that i have to leave like 45mins extra early to walk to the station just so i can get trains on time, what am i guna be like when I've got to get trains everyday starting in September. Maybe continuing Uni from home was a bad option as well, but i wanted to move home. To be honest, right now i don't even think I'm going to pass my second year and i cant afford resits, so that forces me into quitting really.... I'm not sure how i feel about that. Sad and also not that bothered i think.

I hate this feeling of not being able to do anything, and of wanting to give up. I'm getting so fed up with having a headache from coughing all the time, or having a stomach ache from finally being able to have good food, and regularly. I know that will settle soon, but i wish it would hurry up.

I said to my mum the other day, that if God is real i think hes given me the wrong life, i think i was meant to have a nice, healthy life. Someone in this world has the life I'm meant to have, and its not fair.