Snowy Pics

For once i thought i would post some pics i have taken of the snow lately round my area. They are all taken from my bedroom window so theres a lot of snowy trees :) Ive got clinic tomorrow for my 2 weeks IV reassessment, so ill do a proper blog then...

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...

Feeling pretty rubbish :(

Im feeling so rubbish these past few weeks. I was doing really well months ago, then i got a cold and since then everything has just been pretty crap. And now ive got another cold. Perfect.

Its not as bad as the last one, but its still knocking me for six. Im still doing the gym, im really pushing myself there coz i want all this junk off my chest so i can breath a bit better again! I am doing well at the gym, ive done a bit of everything on my training plan now, a lot of cardio and some weights as well. Which granted im lifting the weight of a feather but that doesnt bother me really as i knew i was pretty weak, plus from all the joint pain i get, ive got lasting effects of it and my wrists are quite weak :| Ah the joys of CF! But its helping me to cough up loads of this crap on my chest, which is good, but its quite bad theres so much down there! :( I feel a round of IV's coming on.

Im so knackered! Im doing gym, and coursework and the occaisional day at Uni, which im usually pretty shattered for by the time i get there as i have to get up quite early, get a train, and then wait in the freezing cold until the bus decides to turn up. So im quite shocked i manage to just about stay awake in the lectures i do manage to get to! Granted gym, coursework and Uni doesnt sound like much to be doing, but when thats all im doing day in day out, it gets tedious and knackering after a while. Especially when you cant switch off at night to sleep properly :(

Coursework at the moment is a total joke. Ive got my digital media project going on which is basically my dissertation, then ive got a consultany project with a real client outside of the Uni with a group of other people. Another assignment that i have to have done for the 9th and ive got NO idea what the hell im doing for it, and another one due in on the 16th which is a series of mini projects ive been doing since like October or something. But the specifications we get for these assignments are made over techinical when theres absolutely no need for that, and then the tutors get all grumpy when so many students ask questions about everything! If they actually put things we needed to know in the spec we wouldnt have to clearly bother them with our queries.

Tomorrow im supposed to be handing in a 3000 word research report and also doing a presentation showing off a prototype of my media project so far. This im not looking forward to, and at this rate im not going to be able to do the presentation, 'coz ive got really bad chest pains and it hurts to breathe, move, cough, sneeze, hiccup, you name it and im practically crying with the pain at some points! It started at the weekend and then went away on tuesday so i was able to do the gym, and today its come back with vengance :( Not happy.
At least ive got hospital on friday, which is good and bad. Last time i went my lung function was down to 45% because of that annoying cold i had gotten last time. Then i think i had gotten some lung function back but now ive got another stupid cold my chest sounds like a car engine that wont start.Whether that has killed my lung function i thought i had gained i dont know, guess well find out on friday! Hopefully i will have gained weight tho, ive been eating mum out of house and home haha! I have noticed my energy has picked up a little bit, which usually only happens with weight gain for me more than a gain in lung function. Though i still dont want to get out of bed in the mornings, but thats only more because its freezing!! haha!

On a more happy note, ive had my hair cut :) It was getting really long which is what i wanted but it was getting unmanagable to wash it and comb it and general care of my hair. So i had it cut to just below my shoulders and styled a bit as well. I'll put a picture up soon, as well as a pic of my new tatt :D I had it done weeks ago, but its not long finished healing so it looks better for a picture now. I always find the smaller tattoos take longer to heal than the large ones ive had done. Weird.

Right better get on with this coursework :|

Gym

I'm not sure if I've mentioned this already but I've been able to start at my local gym! After months of going between different people to get it organised, its all sorted nearly and I've started :)

In fact I've just got back about 1/2 an hour ago from a session there. I impressed my trainer to no end and shocked myself as well because i managed half an hour of exercise today :D Usually i get to ten mins and I'm huffing and puffing for breath and just cant do any more!
 I'm not saying it wasn't easy as pie, far from it in fact. I had a massive coughing fit and had to try not to throw up like usually happens at home. Thankfully i managed to control it and was able to get on with more exercise.
My dehydration levels go through the roof more than they normally do, and i think i got through one and a half bottles of water in just half an hour. Drinking more as well now I'm home, so trying to manage that while exercising it proving a small challenge as i forget I've got water there to drink haha!

I managed 6 mins on two different cardio machines, and did two reps of ten on the two different weight machines. So all in all pretty amazed at myself really :)
I'm booked in for twice next week as i really want to get more into this and start feeling the benefits!

Ive got my next appointment on the 3rd December, and so if my lung function has gone up ill be extremely happy!! Its 45% at the mo, and i would love to gain even just 5% back and take it in small steps like that. But then if i get back over 5% that's just a bonus!!

Time shall only tell...

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

long week...

It feels like its been quite a long week for me. Maybe due to the amount of travelling I've been doing to and from Uni. I think it will take me a while to get used to it all but i already guessed that much. I'm pretty glad I'm living at home for this year, as i know i would be feeling more ill than i already feel by now. Ive got a cold at the moment, I'm pretty sure that's whats been making me feel so dog rough the past few days as its been brewing, and it decided to finally make an appearance last night. My knees were giving me immense pain, to the point where i could barely kneel on them if i had to without being in excrutiating pain. I took an anadin pill that are for joints and they work really well, my knees are much better today, still sore but at least i can go up and down stairs now properly! I always use my joint pain now as a marker for infection or a cold. My knees are usually the first to cripple me, after that its my ankles, hips then my wrists and fingers and every other joint that's left after that. Ive had bone scans but it shows up clear each time, so they've just put it down to another aspect of CF for me to be dealing with. Thankfully i realised the other day that all my classes on my timetable are all on the ground floor, so no steep stairs to climb or lifts to go hunting for on particularly bad days :) I said to a friend of mine how happy that made me and she just looked at me like i was crazy. Clearly she didn't get what it meant for me! Even though she knows all about my CF and joint pain and everything. But that doesn't bother me.

Uni has been odd this week. My first lecture the teach didn't even turn up for :| Then a note was posted on the course message board saying it was cancelled AFTER the fact! What use is that to us! So i was a bit pissed as id gotten up at 6am and walked to the train station which is pretty long way for me and quite hilly as well and caught a train and 2 buses to uni to sit for 2 hours doing nothing! Then have to wait until 1pm until my next class. So i basically spent the morning and some of the afternoon sat around doing nothing. What a great start to my first day back! My afternoon class didn't fill me with much happiness either as from the title i thought it would be advanced code and things and instead its all theory work and basically essay writing so far! BLAH!! That was the only day i went into Uni this week as Tuesdays and Fridays i have off and Weds and Thurs i wasn't well, which i now know was this cold brewing up for me...

Hopefully next week will be much better for me, and i intend to spend the full week there! This year is worth 75% for me, and theres already a lot of work to be getting on with. Which I'm sort of happy about, but not at the same time, as nobody likes lots of work to do lol! I got a bit low on Wednesday as after my Friday induction i was feeling really confident and so excited about this final year at Uni, but after the horrid Monday, and then falling ill and missing classes on the first week back i felt well a bit shit if I'm honest! Its a bit weird being back with most of my class out on placement. I would love to be on a placement but i don't think i would have held out health wise. I really think I'm doing the best thing for myself living at home and doing my last year now. I'm mostly on my own as the group i hung out with last year and year 1 are on placement. I was hanging with two others from my course but they don't seem to want me around for some reason. I cant keep up with their walking and they don't slow down for me or anything, so i just let them go on. I leave a few mins before them for class anyway and they aren't ready to leave so, I'm pretty much left to my own devices this year by the seems of things. Which does and doesn't bother me, but I'm sure ill get used to it. I can take my sketch book in and sit in the cafe and draw, and once coding assignments get going i can either take my laptop in and work in the cafe or i can go to the computer labs and work in there :)
I was going to rant and rave about them and how I'm feeling quite left out by them, but i did that with my best friend last night so I'm all better :p

I'm hoping i can manage to sort something out to see my best friend over Xmas, I've not spoken to her about it yet though. Shes on placement in France (surrounded by mountains and fresh clean air, I'm so jealous hahaha!) so were emailing each other and we chat on msn when we can. We've got addresses and such all sorted and I've got something to post her, which i know will make her smile :) Her Xmas hols are pretty much the same as mine from Uni, so maybe we can sort something out, well see...

Saturday will be fun, i don't care if its raining and i feel rotten or not, I'm going shopping with my mum :D Were going to Bristol as that has a better Primark than SwindonItalia at the moment, but well see what other places there are that we've not been to yet :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...

Update...

I'm, not really sure what this blog is about today, but i feel like i wanted to make an update...

I (hopefully) start back at Uni soon... It all depends on my resit results, which I'm supposed to get around the 17th September! If you don't pass all your resits then you have to attend some silly registration session at the uni to fill out paper work and the letter i got says to arrange to pay your fees.... I'm a bit worried that means they are implying the student loans company wont pay it if you don't pass resits, i need to look into that. If so that puts me in a situation as I've not got £3grand+ !
Well see, I'm sure the loans company would still pay it. I think if i had a sponsorship it would be a different situation.

Mums back at work now :( so its back to being on my own most of the day. I'm a bit concerned I'm going to slip back into that slump i was in 'coz i was so lonely and bored at the beginning of the summer hols, but I'm trying to make sure I've got something to do. I'm working through some more of my PHP text book today.

My next appointment at the hospital isn't until October now :D Ive gone from have an appointment every 2 weeks for ages to not needing one for 2 months!! My last appointment was one of the best I've had probably all year! Its been really crap health wise for me this year, and so to have such a good appointment was the best thing in the world! I actually left the hospital smiling for once instead of ringing mum up in a rage and being all moody.
My lung function had been doing really crap and i was down to the 40's region. 42% was what it had been in an appointment i had on the 6th August and i was booked in again for 2 weeks after that. I really put a lot of effort into getting it up there in those 2 weeks. I was doing physio and nebs twice a day, i was really trying to eat better (which was still very hard and i was on the anti sickness tabs) i was doing everything i could think of doing within the limits of what i felt i could do without collapsing. It worked that well that i ended up gaining 13% in my lung function on the 20th August :D Putting me now at 55% ! I realise this still isn't the most amazing number to have for lung function, but for months of effort not paying off, and being in the 40's region for so long, i pretty much cried when i saw that increase!! Considering i didn't think lung function test had gone that well!!

My weight was down, but as i tried to explain to the mean dietician about the sickness feeling when eating, and how hard it was to even eat a yogurt some days. But she doesn't get it. I hate her even more now, as i was sat in the room i was placed and as it was a bit hot in there i took my hoodie off just before she came in. Now i know my arms aren't exactly the fatest in the world but there was no need for what she said to me. She looked at my arms, and chuckled and said looking right at me, that you could use my arms as an anatomy lesson they are that skinny. I was fuming so much i actually wanted to choke her! It still makes me angry about it now thinking about it. I am really conscious of my arms, and when i was younger would wear baggy jumpers to hide the skinniness of them, it took me years to get the courage to sit outside wearing my vest top and actually showing my arms and collar bones (they really stick out and i hate it). So I'm trying to not let her ridiculously unfair and nasty comment affect me too much, and I've not told the team. i don't know if i will, as it doesn't look like shes eaten anything more than a sugar cube in the last year anyway so i don't see how she has the audacity to sit there and tell me to put cream on my porridge and eat more "filling foods", when she could nearly turn to the side and people might report her missing!!
Argh! I'm thinking of requesting to see another dietician but the other one doesn't seem to be around a great deal, which is a real shame as shes so lovely!

Rant over.

Otherwise i don't think theres much else to report on. Still waiting on the gym to be sorted, last i was told the payment was being sorted out, but that was weeks ago now, and i really want to get to the gym and put more effort in rather than puffing on a neb at my desk while playing solitaire all the time :p So I'm going to ring the physios and see whats happening.

Quick question for the CFers who read this before i go:


How do you sort out your chest when it feels really dry when coughing?
I'm drinking lots of fluids and eating much better as well, but every time i cough i can feel stuff on my chest, but cant shift it properly even with a neb as my chest and throat feels so dry when i cough...

Thanks in advance for any answers :)

Ever feel like.....

You've been given the wrong life?

Like when everyone was queuing up for their life pill full of happiness, futures, and general lifey goodness or whatever, the conveyor belt got switched and you got sent down the wrong section and no one noticed. Not a single soul.

CF is actually a really lonely disease to have in my opinion. For me it really brings out that old saying, of being surrounded by people yet being so alone. I know some people reading this wont like that I've said that, but i try to be as open with the sometimes brutal truth as i can be on my blog...

I'm currently sat on my bed that I'm meant to be sleeping in right now surrounded by equipment i wish was totally foreign to me. But unfortunately nebulisers, inhalers, acapellas, and the like are totally normal for me, and i feel like its not meant to be. I feel like lately that maybe i was meant to have this life, but without the CF perhaps...

I wished for the thing closest to my heart (meaning the thing closest to my heart after my friends and family) when i saw the shooting stars the other night. I don't know if it will come true in my life time, but if when ever its granted it helps someone else, ill be happy and ill be grateful.

Have you ever looked at an old photo of yourself and not even recognised it as you? I did that the other day, i looked at the picture of me and a friend on the last day of seniors, the picture is in a frame and its been up in my room in plain sight for ages now. But i think i remembered it was there the other day 'coz i knocked it over. It was weird, pictures to me should be like looking into a mirror in a way, as its certainly you in the picture, you have the memory of it being taken, and you can remember what was happening around you when it was taken, but you cant remember looking like that.... I don't mean the bad hair doo's we've had and the terrible clothes we've worn in the past, at the time thinking we look oh so cool and fashionable, i mean it didn't look like me facial wise. I look healthy! i look happy (perhaps that had something to do with finally leaving that school after so many long gruelling years) and i look ready to take on the world that lays ahead of me whatever that may be. Now i look in the mirror and i feel like I've sunk within myself. I look really skinny and pale, and my freckles aren't so prevalent :( I don't look very well, and i don't look very happy. I don't have that spark that's in my eye that i do in the picture.
I want to be able to go back in time and warn this other me about what lies ahead and that i need to sort out myself now, as theres some tough times ahead and they wont be easy nor will they get easier, no matter if its the "norm" to have tubes and needles stuck in you, and toxic drugs swirling around your body something like 3, 4, maybe more times a year. I want to be able to prepare that me for what lays ahead, to make sure that i don't falter as much.

I want to tell that person to stay healthy and don't sink, and not to loose that spark in the eyes.

Its lucky one thing hasn't changed and that's the happiness. I mean i have crap days, so does everyone, and despite what this blog may suggest, i am happy. I just think sometimes i would be a lot happier minus the CF...

Or would I??

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!

Hospital and IVs

So I got my IVs two weeks ago today, and i felt so so much better after just 48hrs!! My energy came back, my appetite picked up, my cough started to die down a little, everything just started getting better! It was like a weight was being slowly lifted off my shoulders, and that's the first time I've ever felt IVs do that... Finally I feel them doing what the team always tell me they are meant to be doing! :D

Ive never been more excited to be able to have a proper shower ha ha! Ive been washing my hair over the bath and its not been a struggle, i was naughty and couldn't stand it any longer and had a shower yesterday 'coz i was itching so much it was driving me insane! But i washed my hair under the shower rather than over the bath and it wasn't a struggle as much as it has been in the past :D I still got out of breath but not as bad, which made me happy.

When i had my mid way appointment my numbers weren't really changed much. My weight was still 49.4KG and my LF was still 47%, but i explained to the nurse that when i went home on the IVs, the Saturday and the Sunday morning i threw up from coughing so much (i was definitely sure it wasn't a reaction) and so it made me very wary to do my Neb's properly if at all, which didn't help with the whole clearance of my chest. They accepted it and understood (thankfully) and wrote it on my notes. Thankfully those were the only days i was sick as after that my coughing started to get easier in the morning and more controllable for me to catch my breath.

I can now sleep at night without waking up coughing all the time, which is bliss :D my energy and appetite is still picking up, for the first time since i moved back home my snacks are diminishing ha ha! Me and mum are doing the food shopping tomorrow so ill get some more things.

I was quite disappointed today when i went for my "end of 2 weeks IVs" appointment. It started off fine, i had a session with the physio to start with and had a go on the NIV machine, (its meant to replicate the BIRD machine, if any ones tried that?). It was okay, I'm not sure of it at the moment, but the machine I used was being a bit temperamental and so the physio is going to look at my next clinic appointment and I'm going to have another go but with a better machine, and then if i get along with it, then shes going to look into getting me one for home. Which will be good, as it did work to an extent as i shifted and loosened a lot on my chest.

After that i had my clinic appointment. Which also started off well, i was in a really good mood. Got weighed, which has gone up to 50.4 from the 49.4KG it was, so that improved my mood even more :D My blood pressure and pulse was down to a more normal rate, which is another improvement as its usually racing way too much. Then came Lung Function. The dooming part of any clinic for me...
It was a little tough as i kept coughing halfway through a breath out :| But i did it all and then got the results and found out its so say dropped from 47% to 44% ! I honestly don't think the results is correct. The physio had listened to my chest and said it was really clear, and usually when my weight goes up, so does the lung function for me.

I think its because i had done all that physio before hand, even though id had a break between sessions, everything was all mixed up on my chest and so of course when i blew out quickly it made me cough and interrupted my breath out. I said to the nurse that it doesn't reflect how i feel at all. Not one single bit, and she spoke with the registrar, and i was given two options, to ideally carry on IVs for another week, or to come off them today and then come back in two weeks. I chose that one. So I'm back on the 6th August to reassess.

So between now and then I've got a lot of work to do, to prove that machine and my lungs wrong :p
But with my new found energy, it'll be easier to do this than before. Plus with no IVs happening i can go swimming :D

BORED!!

Dont get me wrong im glad to be home and everything like that, but im SOOOOO bored its ridiculous. Im that bored its making me low and fed up. I havnt the energy to do anything, including getting out of bed at a time where i feel like im not being lazy. I set myself some plans to do the night before and i wake up and i think, oh, another boring day. And ive just got no oumph to do anything.

I wish so much that i knew people around here. I used to when i was in College, but now i dont. All my friends from uni live too far away and are preparing for placement year as well. I havnt got a license or a car so its not like i can just hop in my car and drive somewhere just for something to do :(

Im that fed up i cant be bothered to do my nebs etc. Which yeah i know its REALLY uber bad. But still, its not as easy as some people seem to think it is to get the effort to do what seems a simple nebuliser. When you feel stuck for breath just sitting on the sofa, a nebuliser where im huffing and puffing which leads to coughing and then if i cant catch my breath properly throwing up (which im getting thouraghly pissed off with) is the last thing on your mind to do.

I want to go out for walks, i want to do my drawings, i want to do some of my glass painting and so many other things, but im just so fed up i cant be bothered.

Ive got hospital on Friday which isnt what the highlight of my week will be. I will not be refusing IVs this time around. But its typical i actually want them this time and so they wont be offered or "in my best interest". But im insisting on home IVs. Theres no way im going back into hospital to eat the sludge they call food, and such tiny portions for a CF patients, and then still be expected to have gained like 5 kilos in 2 days!! Ridiculous.

Im trying really hard to eat plenty. Im trying to eat little and often... Note i say trying. But its proving so difficult for some reason. I hate it!! I feel hungry and i know i want food, but then i look at what ive got in the cupboard or the fridge or something and im just like theres nothing there that i want to eat. Nothing at all. Food used to be really exciting for me, but now, i dont see what was so exciting about it. I want the food to be exciting again!! And then i get moody and i snap at the people who dont deserve to be snapped at :( I know my weights dropped and i know my Lung Function has gone down even more, but people are asking for a flipping miracle for me to be able to do everything im "meant to do" and more with zero energy all the bloody time.

Im noticing as well that my shoulders are curving around a lot more. Its disgusting, i despise my shoulders! I try and straighten my back and shoulders and then it feels really hard to breathe and so i just shrink and slouch again. Im hoping when i can, to go to town and get one of them big gym ball things, as the physio told me that some stretches on that will help my posture and i can also use it for "fun physio" if theres such a thing...

I know im worrying people, and so that pisses me off with myself even more, and then i get more angry coz i feel like im trapped inside my body that feels so weak and rubbish, and theres nothing i can do about it. Its scary.

Still well see what the hospital says. If i get IVs hopefully they will start kicking me up the butt with some energy!!

Feeling a bit more optimistic!

So my last blog wasn't a very happy or calm one really!

I did as a few people suggested and just thought calmly about the situation, whey up my options, sleep on things a little. I didn't want to rush into a decision i might regret. No matter what my last post suggested. I do love Uni, and i love my course (certain things excluded about that) and i don't really want to leave Uni, unless i got really really very ill and had no choice, or some other situation occurred and i had no choice but to leave.

So i thought and slept and thought some more. I took a look at my results again with a clearer mind and didn't just see the negative side of it all. I did 6 modules and i passed 3 of them, and failed the other three, but only the exam side of them modules. So i did actually pass half my second year!

I worked out the results as well, and to pass on coursework or exams, you need to get 40% + well on one exam i got only 24, but that's only 16 marks from a pass, and most of my question were worth about 8+ points, so really that means i only messed up on two questions! Not bad for a 2 hr exam!
The other two i missed a pass by 7/8 marks, which again each question was worth 8+ marks and so that means i only messed up 1 question on each of them exams!

This made me feel a little more smarter than i had previously felt. It showed me that i was clearly on the right track somewhere along the exam paper line, just not quite there. Plus i have a feeling that i know where i fell down and lost my marks for the exams i missed a pass by 7 or 8 marks on, and so I'm hoping that i just need to really improve them weaknesses and refresh all the other things and i should be better at the exams enough for a pass! I even thought of the point that i might have lost some marks simply because they couldn't read my writing or it didn't make sense!

So i managed to put a positive spin on the negative a little, and I'm pretty happy i managed to do that, as otherwise id still be curled in a ball crying on my bed about what a failure i am, and why do i bother with anything when i always seem to fall flat on myself lol!

I think the sunshine has definitely helped lift my spirits :D Long may it continue!!

So i just need to find £150 to pay for my resits as its £50 a time if the student doesn't have extenuating circumstances accepted or submitted. Which i didn't - that's a very long story and ill tell anyone who really wants to know, as long as they are willing to accept a very long emailed explanation haha!
I think that that was what i was worried and upset about the most, that i wouldn't be able to find the money to resit and then as they are core modules that i have to pass to continue with my course, then i would have to leave Uni. As i said, something i don't want really!!

I think i can find the money. And being at home will help with the revision process again as ill be in a more relaxed place. Not somewhere i feel a lot of pressure, etc...

I actually got out the house today as well for like the first time in about a week. Ive been sitting in my garden and things, but I've not ventured past the front door threshold. I went to town this morning with my mum, insisting on completing my hunt for a nice pair of sandals that actually fit my skinny feet! The hunt was successful and i got a pair of black studded gladiator style sandals :D I managed to save £1.30 with my student card as well so it made it all the more a happy occasion! Got myself 3 more reading books for the summer as well, as I've read everything on my bookshelf. Some of them two or three times haha! They were on a 3 for 2 offer as well so saved some money there as well!

The only thing that hindered my good day today was - no not the football! - that when i was in town, and it was starting to heat up a bit more, i got suddenly really tight chested and found it very hard to breath. I had to sit down and use my inhaler and have a drink. Luckily i had one in my bag. Then due to the lack of breath - at least i think that's the reason - i ended up getting a really bad stitch in my side :( It made it hard to breath as well, so me and mum ended up having to get a taxi home instead of a nice walk. Oh well never mind, I'm all grand now! Just part of the heat i think!

Hope every one's enjoying this glorious weather :D

Whats the fucking point!

Literally i just want the floor to swallow me whole now!

This is pretty much the last straw. I new i didnt do amazingly in my exams, but to do as badly as i have?! I really dont care anymore. Uni can suck it. I fucking give up. I clearly wasnt meant to be the educated person i wanted to be.

CF interfered so much during my second year, i wasnt able to get barely anything done, let alone attend properly to flipping understand anything i was meant to be learning. I was apparently getting all the help i was entitled to, which still wasnt enough for me to get through.

I know it sounds like im blaming CF and not myself, but people who know me personally will know how much ill be blaming myself so no worries there about shifting any "blame".

I honestly dont know what to do from here. Im just so tired.

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.

Family Do

I was going to do one large blog, but thought that it would be too long, so ive split it into two parts.

I went to my Great Aunty's at the weekend with my mum as we had my other Great Aunty's 60th wedding anniversary party... i honestly don't know how she put up with my Uncle this long, but they make an amazing couple, and i think its pretty impressive they have been together this long really! Certainly a marriage to look up to that's for sure!
The party was really good as well, as me and my mum got to see some people from our family we've not seen for 4+ years! How people change so much is quite scary when you take a step back and notice really... I kept my sarcasm is check for the night though as i didn't want to offend any family members who don't really know what I'm like... However it was all still happening in my head :p

The most common thing that was said to me was "And you must be Katherine! My gosh haven't you grown! You must have been *insert hand gesture here for height measurement* this tall when i last saw you!".... i mostly just smiled, all the while thinking, well i wouldn't exactly shrink would i! that or i was tempted on one or two occasions to reply with, u were this tall when i last saw u, my haven't you shrunk!... But thought better of it. As soon as most of the people had turnt their backs, i would turn to mum and ask who they actually were haha! I knew some of them, but most of them i hadn't seen since i was well like 1 years old really, but some i remembered from the 40th wedding anniversary party when i was about 11 years old.... Man i feel old!!

The Great Aunt and Uncle whos party it was do a type of barn dancing thing and so they had their friends who they do that with there as well, and a band who can play that music.... It did look quite fun, but it would have set me off into a massive coughing fit and that in the middle of the dance floor would not be pretty at all, so i avoided it and just spoke to family members and got happily tipsy in the corner with my mum and Great Aunt who we were staying with.

I honestly could not figure out our family tree to begin with, but as the evening went on i was talking to mum about it all and trying to understand how were all related to each other, when it all suddenly clicked into place and i got it! However i said rather loudly "oh!!!! I get it now!! That makes perfect sense!!" to the entire table and everyone looked at me rather confused.... they really dont know my epiphany moments you see so it was a bit shocking for the rather quiet girl in the corner to suddenly say something loud like that haha!

I got the typical "so what are you up to these days" questions and explained countless time to different family members about Uni and such. By the end of the night i wanted to have a large white board that said my history of my life since they all last saw me just so i could stop saying the same things over and over again! Plus my cheeks were killing me from smiling all night... although the good thing is that it wasn't that typical fake smile a lot of people have for the family do, which is good! :)

Some people asked about my health, to which i mostly just responded with "yeah, yeah im fine, im okay" as i couldnt be bothered to sit there and explain to them about how things really are. Plus when most of them asked me it was annoying to see that sympathetic smile on their faces, so i just said that i was fine to save more pity. However a few of them did say that i looked well, i just wish i felt "well".... although i wonder what "well" actually feels like, i guess its a different feeling for everyone?

There was a bar there (thankgod!) and the guy serving on it, i really recognised him! Im sure he goes to the same uni as me, or ive seen him around town. Either way he was a bit cute, and i was guna ask him if he went to uni and things when it was just me at the bar buying drinks, but one of my Uncles arrived at the bar so i didnt say anything. Im going to look out for him at uni next year... but knowing my luck hes probably finished now!

Home again

I'm home again!

For now....

What a fiasco it took to get here though! I'm still in the process of moving out of my Uni house and back home. I went back to the Uni house on the 9th June, to pack all my things up. This took far more effort than i was expecting! But i managed to get all my room packed up and all I've got left is just the last few clothes (I've got to take another bag from home, to Uni house as i ran out of things to pack my clothes in.... I've got far too many jeans!) and the kitchen things that are mine. Oh and food that I've got left that's still in date. The only trouble is, is that i don't actually have any way of getting all my things from Uni house to home... I was hoping my Great Aunty's sons could help me out and get one of their flatbed trucks and drivers to take it all home for me, as I've got a bookcase as well as boxes and such, so it wont easily fit in a car. Not that I've got a car - my family are extremely helpful like that and offering to help me move home :| - But so far they haven't said whether they will help out, and I'm getting annoyed as i want my things home so i can unpack and settle back home and start on my summer plans. Plus I've got limited clothes at home which is really annoying!

When i left the Uni house and came back home on Friday night, it was getting on a bit, and I was knackered, and hungry and wound up from packing so much, and I got the bus to town, so I could get another bus to the station. I got on the first bus to town and when I was waiting for the next one, I realised I'd left all my 'meds for the weekend back at the Uni house! In my haste to leave and get home I'd totally forgotten to pick them up on the way out. So I had to go all the way back (luckily I had a day rider ticket) just so I could get these 'meds. Then I had to get another bus back to town! Luckily it was, at this point, that late that the bus I got went straight to the train station, so it cut down half my journey. But I was now even more wound up and tired, my face looked like a smacked arse and people were avoiding me left, right and center, (which was also probably due to my extravagant coughing and possible blue/purple face - I'm assuming this is what they think the plague looks like!) which helped me out just dandy, as i was in no mood for being a "people person". This i why i hate travelling alone haha!

Eventually i got to Chippenham (home) and wanted to get a taxi home. There was one taxi left, and some lady over took me going for the same taxi and got in it and left me! Bitch!! She didn't even have any luggage and saw me plain as day, going for that taxi and struggling a lot with my really heavy backpack and other bags, yet still stole my taxi! I had to ring my mum to get her to order me a taxi for a pick up from the station. One turned up and it was the taxi driver who is really nasty and rude, and he said where am i going, i told him and he said "well i have to have my tea, so can you wait for 5-10 minutes?" I basically told him i had to have my tea as well and had to get home. He just said i had to wait and he needed to have his tea and then drove off! I wish i knew his badge number or name or something then i could tell them when i order a taxi again that i don't want him 'coz hes so rude! I ended up getting another taxi as 2 pulled in just after he left and the driver was really lovely and chatty, telling me about his daughter and Grankids. He was that nice i gave him a tip and told him hes the nicest taxi driver I've had for a long time... he told me flattery will get me everywhere :p ... Its a shame i forgot to get his name as well as ill be using taxis a fair bit soon with living at home and still doing uni...

I was glad when i got home, i had a lush shower which made me feel so much more human and got rid of all the dust that was on me from packing my room up (i felt like id been in a dust mine all day!), then had a decent burger courtesy of mum, watched some telly and went to bed. Best nights sleep id had in a few days!

Only a few more trips to the Uni house left thankfully, one to pick all my things up and the other to clean it all up. Which at the moment i dont know when that will be as all my other house mates cant make the date that was set before. Plus one of my housemates and i had a little heated discussion about her way of how the house should be cleaned... im glad im not living with her anymore. She said we had to scrub the floors, twice, on our hands and knees!! TWICE!! i told her she was being ridiculous and that basically its not the queen moving in, just another bunch of students. I said if she really wants to scrub the floors she welcome to, but ill just sit and watch. She said that she needs her damage deposit back for her year afterwards, (love how she assumed we were all happy to waste our money) and didnt see the harm in a little extra effort... Extra effort yes, but not OTT effort! Im pretty sure she can just stick a mop/duster on the end of the rod she has up her arse and be done with it really!

Seriously glad im moving back home!!

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!

FREE AT LAST!!!! :D

I'm finally free from exams!!!!!

i finished my last one at 11.30am today and literally wanted to cheer when they said pens down the exams over!! But i had to wait till we were outside, exam conditions and all that blah blah...

Anyway, im going to get some sleep now as im shattered, so much so, my eyes are burning :(

THEN im going back to uni for the end of term/exams/drink the bar dry party with all my friends and it will be immense and i will be getting very drunk :D

I shall post some pictures on here when i am able to :)

Hope everyones goooood :) This is literally the best day of the year for me so far haha!

exams and stuff

Yesterday was a pretty crap day to be perfectly honest. I was revising all day for my exam i had this morning, and a lot of other things just pilled on top of me and i ended up spending most of the night crying my eyes out and once i got going i wasnt able to stop. Seriously i was like a hormonal pregnant woman who was crying coz the couple on TV finally got together or something!!

I think a lot of it was stress and tiredness. Major stress. I dont do well during exam time at all! I hate exams and always have done, i much prefer coursework! I have been that stressed the past few days that ive barely been able to eat... pretty much the most ive eaten the past few days has been coco pops and a small meal of beans on toast with Bacon (which in truth was just meant to be a bacon sandwich!) plus im worried that the 7% gain back in lung function i managed to get the other week i think it was when physio last came to see me, i think that ive lost it... but im back to sorting my nebs out properly as i did slack a little due to wanting to spend so much time revising/stressing and yelling at past exam papers that the question doesnt make sense!

I think the final straw last night before i lost it was when i realised that as i had wiped my browser history the other day to see if it would help my browser to sort its life out (its worked before lol) i managed to delete the email i had saved for this blog and i couldnt remember it when i tried to log in last night to make a post as writing i thought would help me feel better. Thats when it all got far too much and i just literally broke and sat rocking and hugging the pillow crying on the edge of my bed like a crazy person!

I woke up at 5am this morning after a restless sleep and thought, well as i cant sleep ill revise. So from 5am till 8.30am when i left for the bus to uni i was creating mind maps for revision and getting ready for uni. I actually managed to eat 2 bowls of cereal this morning, yet my stomach still decided to be the one to be really noisy during the exam. Also for some reason i could smell pancakes during my exam and had a craving arrive like half way through my 3 hour exam for a milkyway bar... so as soon as i was allowed to leave my exam i raided the student shop, and had the largest amount of food ive had in a few days! It was soooo good! :)

Once i got home from my exam, i suddenly realised in the small amount of sanity i had somehow gained overnight that i actually had my email for this blog written down!! So yay!! I am happy again... i think this blog has become a sort of security blanket, and realising i couldnt access it last night just freaked me out so much!

I think the exam went okay this morning, I feel like i did okayish on the first section and the second section we had to choose to answer 2 of the 4 questions that were on the paper. Luckily we had been given the topics to revise, and so i was able to answer one of them (i feel) quite well as i know a fair bit about that topic (XML code language if anyones interested :) ) but the other question i totally bombed on. I couldnt remember how to draw the diagram or what it all meant! I couldnt remember the benefits of it all (3 tier architecture) etc, so i totally blagged the question and im hoping the answer has sort of crept up in enough of a way that ill get some marks if not all of them!

Either way im glad its over, and ive got 2 left!! One on Thursday morning and then my last one on Friday morning! Then as soon as that last exam is over me and my friends are all going to something called Last Orders at the uni campus... Basically the student bars have to get rid of all their alcohol supplies for the summer as no one will be there and so they sell it at really reduced prices, and have acts and other things happening around campus.... Basically im going to be very hung over on Saturday morning, which bodes well for my journey home to go to a car boot sale with my mum! :D Luckily ive warned her that i will be in no way human like on saturday, and apologised in advance for in case im still slightly drunk :p Thankfully my mum is fairly easy going and i know shell just laugh at me rather than lecture me about drinking. After all the suffering the morning after is my own doing, and i dont drink every night... in fact its been a long time since i drank, so im very much looking forward to the copious amount of fun and alcohol and dancing to be had :D

Also ive decided my blog lacks far too much in pictures and ive decided to add one of my new hair colour... which was blonde and is now red, courtesy of mum dying it for me :D

Im pretty impressed that ive managed to grow it this long! I usually get impatient and have it all cut off... But apparently i look much better with long hair :)

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!" :'(

A little unsure...

So ive started talking to this new guy. I like him so far, i think he likes me but a little hard to tell really. Anyway i told him the other week about my CF as it came up in convo about my recent tatt. (Ill add a pic on the end) and so he knows about the whole hard to gain weight part of it. Well we were talking tonight and he said in convo that i do look too skinny in my MSN pic.... oh. i just tried to brush it off with a well its hard to find the balance crap. But he didnt really say much. I dont know what his understanding is of CF and i dont really want to sit there and question him on what he knows as if he doesnt want to know then im not going to force him.

But just that what he said "well you do look too skinny in your pic" has stuck with me now and i hate it. When i was younger i hated my skinnyness, and in seniors i was called anorexic (amoungst other bullying things) a few times, even tho it was by people who barely or didnt know me, it still hurt a lot... It took me ages to feel comfy wearing a vest top outside as my collor bones stick out and my shoulders as well look really boney. My arms in general arent exactly Arnold Schwarzenegger size really. I used to wear baggy clothing as much as possible so it wouldnt show off my stick-like-ness.

Im just really quite disappointed he said that, and it feels like he said it so bluntly as well. Forgive me if i seem like im blowing steam for nothing but him saying that, brought back years of buried pain about my looks and skinnyness (as vein as that sounds, its not meant like that). Considering the amount ive been eating lately ive put some weight on (i hope), but it usually just goes straight to my stomach, and feels like all that weight has disappeared by the morning!

I said to myself when i was nearing end of seniors that if someone cant accept me for who i am, then they can just keep walking on past me and my life. But at the same time i dont want this guy to do that... i want to help him understand if he wants to and explain its pretty normal for me and im never going to be muscly. not even a little bit. but then on the other hand i keep thinking about that saying i told myself years ago...

Its stupid. I hate when people i like in that way says things about my weight or something as its the thing im the most self-conscience about. Ive just learnt to hide it better over the years. But still him saying that made me feel so small, weak and self-conscience all over again. and im pretty angry and upset that he made me feel like that!

Heres the pic of my latest tatt. The words "hope" and "breathe" are written on the tails for myself.

Massive diet rant. Fair warning.

I'm guna rant...

Im getting so pissed off with all these people who are on bloody diets!!

By their version of a diet i mean they are thinking they are being good and healthy by eating a celery stick a day, if that! If anything its just so stupid and has major health implications! So one stick of celery is a possible understatement, but you get the point.

I don't understand diets. I know as ive got CF it doesnt really matter if i diet, its very discouraged for me to do that. I see it as fried chicken is healthy for me basically. But i dont rule out healthy foods as well, im addicted to salads, and i like my vegetables (although being at uni, i dont eat as much veg as i should - sorry mum lol) but i just dont understand, why is the world so so vein. Its actually quite disgusting sometimes. and extremely sad. Its really makes me angry, as im sure this blog will show.

Why cant people (from all walks of life) just eat what the hell they want and then just exercise properly! Not stand for 3 hours in the shop comparing the amount of calories on two packets of food that are practically the same!... either way they are guna consume them calories and they will like it, so why bother counting the calories, it doesnt add to the taste!!

Im ranting about this also because a few friends have been telling me that i eat too much unhealthy things. Yeah i had KFC 4 times last week, at least 3 starbucks chocolate cream frappachinos - sometimes with extra whipped cream, ive eaten sweets galore, and ive just polished off a box of Mr Kipling Angel slices (there were 6 in the box). And thats just a small amount of what ive eaten this week! And, honestly. im pretty proud of that monumental amount for me, as my appetite has been non-existant for a while now, so this is also a sign for me that something is picking up in me and my extra nebs and physio is actually paying off for a change. (even if it doesnt feel like it when out walking, thats still a work in progress). All my friends know about my high calorie needs and why i need them so much. But i still dont rule out exercise. I still like to sometimes watch what i eat. Sometimes ill just have 3 KFCs in a week (lol).

Im not saying everyone must eat the kind of things i eat and/or as much, as im sure that most of my friends couldnt handle that (considering i know someone who gets full up after a pot noodle! A pot noodle!!) I just wish they would get off my case. Im not guna stop eating "junk" just coz they cant eat it, coz it means their bikini wont look good on them this summer.

If they keep on, they will be picking their head up from off the floor.

I feel a bit better now. Deal with it.