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...

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...

So very very tired and fed up

I came out of hospital a week yesterday, and i came off my IV's a week 2morro. Since then ive been dealing with all the meds coming out of my system, and trying to get back to uni and deal with all the coursework thats piled up past my ears.

Although i made a plan with my program leader to focus on the main 3 modules that im doing well in and have already put a lot of work into, and then the other 3 to just submit "something" enough for me to be able to do a possible resit of them in the summer time, i still feel like im falling flat on my face every day. The plan now i think about it more and more isnt actually that much of a plan. Although i submitted extenuating circumstances from being in hospital and on IV's, i still have to get all my work in on time for the deadline my tutors set. Which TOTALLY defies the point of "extenuating circumstances". To me submitting them should mean that i get some sort of extention granted for all the courseworks that have been affected due to my circumstances at the time that prevented me from completing them in time for the first deadline. BUT this is not the case, submitting them still means i have to get allll my work in on time. Then the board that deals with the exten circs has a meeting in either April or June time around the results time, and in the mean time i wont know anything about whats happening. But if my stuff gets granted then it just means my assignment grades wont be capped, and if they arent accepted (which if being in hospital for a month isnt something to be granted then id like to know what is on their list) then my mark is capped at around 40% i think!

I do 6 modules and ive got coursework for every single one, all they are all due in for the 25th March at 2pm!! Most of the work ive not a clue what im doing on, i think maybe once im started on them i might be okay. But getting started is the hardest part. And trying to focus on all the work, and attend the lectures and focus on getting better and having all the meds coming out my system, it just feels like its getting all way too much!

Im absolutely shattered, i mean beyond words can really describe shattered. I think its mostly from the meds coming out my system, im not totally sure, possibly combined with stress as well. Im trying sooo hard to stick to my physio schedule that i created with my physios before i was discharged, but its proving the equivalent of trying to climb a mountain. As is battling the coursework load.

Im also realy itchey all over my body, its giving my mini rashes everywhere, mostly my head, arms, face, neck and hands. And all day today ive been getting strange tingly feelings in my hands and feet and its kinda hurts actually, like ive just shut mu whole hand in the door or something... Its really quite annoying, and the itching is literally driving my insane!! If its continues for much longer as ive only had it for 2 days now im going to ring the hospital and see what they say/think, last time i had the itches like this it was at the beginning of my ceft round and they gave me anti-itching tablets, which seemed to help nicely. My scalp is the worst, its a case of if anything touches it even a breeze that moves my hair its a mad frenzy of itching! Its pissing my off as its making my port area itch and i can feel the beginning of the catherter i think it is which at the moment really sticks up and the skin feels quite thin over it, so its hard and annoying to scratch at :|

Fingers crossed this all passes soon as its also making me distracted from my work!

Right now i just couldnt care less about Uni, i really just want to go home to my mum and rest a hell of a lot! Sleep is number one on my wish list now! Although im sleeping really well through the whole night and getting to sleep isnt a problem at all, its just the waking up bit and the energy levels in between the day thats causing the problems. I feel like i can only open my eyes half way today, which is why i took the day off uni although i didnt get as much as i would like to have done, but still.

I guess im, just going to have to keep plodding along for now...