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!!

Never say Never...

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

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

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

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

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

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

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

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

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