Ups and Downs...

So I've not blogged for ages!! I've not really known what to write up until now, but even now I'm not totally sure so this might be a bit of a random post, well see!

My emotions have been a struggle lately to say the least. Normally I'm good at keeping myself in check, i keep a diary of my own and anything gets written down in there, I've read back on some things and it doesn't even make much sense, but i guess at the time of writing it, it made me feel better so I'm not bothered. That diary is for me anyway and so others don't need to understand it.

For some reason i just stopped writing. I became very low and didn't really care about much. I wasn't very well which didn't help my low mood and i was snapping a lot at people who didn't deserve to be snapped at. I wasn't able to keep food down, unless it was ice cream or ice lollies. I was drinking tons but still became severely dehydrated and it ended up making my lips dry out so much at night that they would split and bleed. They became really quite sore and i used to use vaseline to heal my lips when this happened in the past but being on overnight oxygen now i couldn't do that, so i was struggling as i couldn't find a cream that would help me that wasn't going to also make my face explode :|

I wasn't sleeping so i was becoming more low by the day really, sleep only seemed to want to come to me at the most inconvenient times during the day and i had to relent most of the time and give in to it as i was pretty much propping my eyes open with matchsticks most days. My chest was drying up and was so painful as i kept getting plugs and random muscle spasms. The only thing that seemed to help my chest was hot water bottles and laying on my side. If i did any nebuliser it felt like it made my chest so tight and i just couldn't breathe properly afterwards. So i gave up.

I still have the wheelchair on loan from the red cross but it goes back at the end of this month so ill more than likely become a recluse again which will send my mood down again. I cant manage walking up the stairs properly i have to stop half way.

I went to clinic when i was really quite unwell and they wanted me in, i refused as i didn't think i needed IVs i just needed to keep my food down and get some sleep! I was exhausted. They prescribed me some orals I've not had before as i insisted that the ones they keep giving me now don't really do anything and the Cipro makes me throw up even more now. I also got some anti sickness pills. I started taking them that night and after a few days they seemed to be doing the trick. I managed to start keeping cereal down and eventually got up to having proper meals again.

I'm now keeping food down, my mood has really picked up, and I'm sleeping again! I went back to clinic the other day and was given some very mild anti depressants which also act as a sedative so they are helping me to sleep which is doing me the world of good it feels! They are also to help with my mood as its still not good but its improving slowly so well see how i go.

I'm going to do a separate blog about my recent clinic appointment as there was a big decisions made by me and i want to talk properly about it.

messy head

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

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

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

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

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

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

Sometimes i wonder whats the point.

Just stuff...

I'm feeling a bit crabby today so you'll just have to bare with this blog post.

Its my 22nd Birthday 2morro! At least this year I'm not coming out of hospital a day before it, but I'm still not well for it really. So its just the same as last year.
I'm really fed up with a few things right now. Namely that I'm alone. Completely. Yes I've got my mum and my best friend Emily (who I'm so so looking forward to her coming home from placement in a few months from France!!) but they are there for me in other ways. I'm sick of being on my own now.
Every where i go i see people being able to get on with their life's and to not have to plan for how they might be feeling tomorrow or that evening before they can even make any plans for something to do. I see people in relationships and i hate that the most at the moment because its one thing i most wish for right now, for me to meet someone that's nice for a change and who i get along with, and who doesn't come with a history like some of my previous boyfriends. I understand they will still have a history i don't mind that as long as its not like the history's of my past bf's, which I'm not going to go into on here as it doesn't need to be known.

But i don't see any way I'm going to meet anyone to be honest. I know zero people around here. Don't get me wrong i love living where i live, but i just wish i had friends! Friends who would come and see me at home when I'm too sick to go out myself, friends who would go for a meal with me randomly just for some laughs after a rough day. Friends who would ring/text me gossip and to see how I'm doing or just tell me how they are in reply to my messages and things like that!!
Emily is that friend for me and more of a friend than the standard if that makes sense, but shes in France atm, and then we wont be living with each other anymore, and then shes finishing Uni and not sure whats happening after that, anything could really.

I want friends who i can go out for some drinks with, and go dancing when I'm too drunk too care how bad it is haha. For me these friends only seem to exist in my head or in fictional programs and books. Much the same as men.

I feel like I'm the outsider looking in through the window at everyone else being able to get on with their lives, find partners, and friends and going through those "stages" of life that are expected.
I want to get married and have kids eventually, but i honestly just cant see it happening if i cant even find anyone. I feel like the reject at the bottom of the pile. Ive seen guys look at me and smile, and then ill cough and cough and not stop and it must look horrific coz hes not looking nicely at me anymore. Theres either that horrid pity look or that disgusted look. Though admittedly i do prefer the disgusted look over the pitying look. I want a partner, not a nurse.

Birthday will be spend much the same as every other day. Bored, fed up and sick.

Immense. Fun.

Sorry this has been a crap post. I'm in the mood to write and vent, and i guess this is what came out today. Just really down...

Been a while...

So!! Its been a while since I've made a posting!

Things have been quite difficult for me lately and so I've been pretty much disconnected from everything and I'm now just managing to be able to think about starting to get back on track...

In December i had an infection that was my worst one i had ever had, i was in hospital for a few days as i had 2 episodes of coughing up blood for the first time ever and then i continued on home IVs which i had already started previous to going into hospital. It seemed like i got better, some things picked up i started to get a little bit of energy back and some of my appetite. Bits and pieces like that which indicate to us CFers that generally something is starting to go right for a change and that were going to start getting better.

I went back to the gym, i went back to Uni, i started to put my "life" shoes back on again. I think that's where i went wrong, i went back into things too quickly after being so unwell and just didn't give myself time to rest properly. Hindsight's a bitch sometimes!

So i ended up getting ill again, i had the same feelings as in December, things started to show they were in decline again, my energy disappeared, my appetite diminished. I got very low again and spent a lot of time either slouched on the sofa or throwing up in the bathroom. Not impressive.

So after trying to go it alone again 'coz I'm stubborn, i called the hospital and told them everything that had been happening. I don't think they were impressed i had waited so long to ring them, but they know I'm a stubborn cow sometimes. They put me on the priority list for a bed and within 2 days i was in hospital and being pumped full of lovely IVs, paracetamol, ibuprofen. Luckily i didn't have any bleeds this time, but i think that was because of a few factors, namely that my chest had dried up like a desert but i could feel that it was full of it, as i was wheezing like mad for the first time in years! Not even my inhaler would relive it.
I was hitting temps of around 40 and i had god knows how many blood cultures done when in hospital, i had 3 ECGs, 2 in one day as my heart was beating so fast it was really uncomfortable sometimes. I had to stop moving around so much and just rest on nurses orders to help try and settle my heart rate and also to get my pulse rate down as well. I went on oxygen again to being my sats up and had my obs done every hour for the first 2 days i was in there. Needless to say my mood from total lack of sleep was not pretty.

Mum came down on the first weekend i was in there and i argued with the nurse about being allowed to go down into town for a little bit and get some real fresh air and real edible food for lunch! I think she thought i was going to escape home, but there was no way i could look after myself while mum was at work. So begrudgingly i did admit to myself that i was in the best place, even if the food did look like the cat had coughed it up sometimes! Thank god for the £6 i spent on my massive bag of pick n mix :p

Eventually i won the argument with the nurse and she let me go, but made it clear she wasn't happy about it. I think what won it was that she said she has to ring the on call Dr to see if i can go out and i said that even if they said no, i would still go out anyway!
So i had breakfast - a lovely fry up, and a KFC for lunch! It had to have been the best day i had had for a few. Although it totally knackered me out after i got back to my room, i was so pleased i had managed better walking and was thankful for the change of scene and fresh air. Sometimes i don't think some nurses get that its depressing after a while being on your own, looking at the same four walls alllll the time!

Another reason i hate being in hospital is that it is always a clear reminder of how alone i actually am and feel right now. I have no friends who come to visit me, and next to no family come to visit me. I have no get well cards sent to me from friends and family, i have no Internet so feel totally disconnected.
Thankfully i have my amazing mum and my best friend Emily. Although my mum can only get to visit me on Saturdays, its the best ever when i see her! It doesn't matter that I'm pretty much always on the phone to her when in there (thanks Orange for magic numbers and my free mins :p ) seeing her is totally different as i can actually get that much needed hug and get to slap a real smile on my face!! :D I know that if it wasn't for work, and the extortionate fees for public transport she would come and see me everyday. I just hope she knows that i do fully understand that.

My best friend would come and visit me i know that, but at the moment shes on her Uni placement in France and so obviously cant, which i know pisses her off as she knows that no other friends bother to visit me. They have their excuses of not liking hospitals, or that they are too busy, then i see on facebook they are moaning they are bored. Yeah cheers for that guys.
My family are the worst. They don't understand CF and the extent of the damage it does to someone, physically, emotionally and mentally. Not just to the person who has to suffer with it, but their parent(s) and sibling(s) as well. My aunt totally pissed my mum off. We were trying to arrange transport for me to be able to be discharged on home IVs. Taking all the meds which is usually two large carrier bags, a huge sharps bin with all the syringes, needles etc inside and my stuff i took into hospital is not ideal to take on a train journey home! So we asked my Aunty if she could pick me up and take me home. She said she couldn't do it, fair enough at least we tried. I then saw the next day on facebook, when i was being discharged that she was in Bristol, down in the town not a 20min walk from the hospital i was in!! Shopping. Of all things, for the birthday party of my other Aunty that we hadn't been told about or invited to. Granted its more than likely we couldn't have gone but it would have been nice being family members to have gotten an invite! Is that selfish of me to think that??

As i wasn't being discharged until about 5pm she could have gotten in her shopping day and then come and collected me. She has a large car so its not like shopping bags would have taken up room. It really angered my mum, more because my aunt is always saying if theres anything she can do to help let her know. Yet every time we ask she always says no, cant do it. Theres always some excuse which isn't always true. So were not bothering to ask her anymore, for anything.
It pissed me off as well, but it upset me as well as it felt like she was saying that she doesn't care about her niece or her sister (my mum) enough to just do this small thing for them that would help them out hugely. Yet she goes to see my cousin right around the corner from me who has cancer whenever she can! I think its because she doesn't understand CF and doesn't see or get how bad it is/can get for me. I don't think she gets that it can kill me, just as much as cancer can kill people. Cancer everyone understands, you can see the devastating affects of that horrid disease. You cant see the devastating affects of CF. People think naively that as the person is up and walking around themselves that theres nothing wrong with them.

I had my annual review yesterday, which didnt show up no surprises really as i had already been spending so long at the hospital. Basically the annual review showed that im worse than last year and still struggling.
Im having my PEG put in on the 29th March and ill go in a few days before that for some IVs again to make sure my lungs are in as good a condition they can be for dealing with an anesthetic, even if it is a local one and sedation. Then for a few days afterwards ill be trained how to do home feeding via my new tube and then be allowed to go home again. I swear they should make me a permanent bed for me there lately :|

Hopefully that will gain me the weight i need to battle these infections i keep getting. If i can have a better summer than last year health wise itll be a start!

Anyway i think this post is long enough now!
Hope peoples are well!!

Daily Trials

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

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

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

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

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

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

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

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

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 :|

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!!

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.

everything all at once..

Im really not sure how i can put up with everything for much longer! I just really want to go home to my mum!

I dont what is wrong with me but i think as does a lot of other people think ive got a very rough virus! Last time i was on IV's was Xmas time i finished them on xmas eve, and then went back a few weeks later in the new year (so this year) and i was put on something called Septrum. After a few days of taking that i got really really itchey all over my body, especially my scalp which was soo annoying!! Also every single joint of mine was soooo much pain! I could barely move, my mum had to help me a lot, like dressing, climbing stairs, even simple things like opening bottles coz i couldnt move my fingers to grip anything properly at all.... I thot all of that was an allergic reaction to the Septrum as everything i had was listed on the reactions list that come with the meds. So i stopped taking them and after about a week or so it cleared up.

Well now all them symptoms are back, and it seems to be with a huge vengance :'( I literally cannot move without nearly crying from pain in every part of my body! My head is banging and my throat is so sore it hurts so much to swallow, so trying to keep my fluids up and keep eating is very painful!

My fingers, knees, and ankles are swollen, im not sure about anything else, coz it hurts to much to move to check it out...

All this is making me feel so low and fed up, and angry as well coz bad health for me just doesnt seem to want to let up lately! I tried to avoid IV's until i had my port put it coz my veins hide from the lines and last time it took 3 very painful attempts to get a line in :( Then i had my port in, that went all fine, started my IV's all was going fine, was plowing myself with physio, but not to the point of overdoing it, and my lung function didnt budge a single %, so i was really disappointed! So i kept on trying and trying and then it went down!! Literally wanted to scream, no matter how knackered it made me!! Finally the day i was dischared it went up by 2%.... doesnt sound a lot, but after all that had happened (or not happened) i pretty much nearly cried at that 2%!! Then i came home, had a nice time relaxing at mums.... and i was relaxed! I had no stresses of uni bugging me, no people make me feel so tiny and guilty for being ill and not able to attend uni like they do, or put all the effort into their work like they do. I work dam hard at uni and it feels like im getting everything chucked in my face!!

I really just cant be bothered with uni anymore, i want to leave. I cant juggle my health and uni at the same time and i want to quit one. If i could quit CF i would have done ages ago, but i cant, which just leave Uni to quit. I know my mum wants me home so she can take care of me, lord knows she would do a better job of it than i am right now!!

Im just fed up and nearing the end of my teather :'(

Ive got 6/7 assignments all due in for the 25th March 2pm, ive barely been able to start any of them from being so ill and in so much pain... for sketches i cant hold a pencil properly!

But if i dont hand anything in for my work then i fail my module or my course im not totally sure. But im so lost for motivation that im "this close" to just saying fuck it to all my work and not bothering anymore!

Like i said i just want to go home...