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!