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!!

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!

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...

Home Sweet Home!

This is the first chance I've had to write this today!

IM HOME!!!!! :D

I was happy to leave hospital, im just shy of a month of being in hospital!! Im still on IV's but its just meropenem now three times a day :D I had my last doses of Ceftazadime and Tobramycin yesterday, and i finish my mero on friday morning, then off to hospital to have my port deaccessed.Then im taking a week or so to rest up at mums, and get fattened up with lush food and then im hoping to get back to uni, then itll be Easter hols so ill have lots of time to rest up then before starting a fresh for my new term in April.

My CF nurse said to me today that she can train me to deaccess my port myself, and i looked at her totally panic stricken!! Im still getting over my fear of needles (ive got about 5 tattoos and i freak at having blood taken and such - go figure lol!) and my port im still getting used to it all and having one, so theres no way i can pull a needle out myself at the moment! Maybe in a few years or maybe less, well see. But i am doing really well at getting over the fear of needles (even my doctor said that :D), i think having the finger prick BM test once or twice a day everyday whilst in hospital actually helped with that haha!! Ive got lots of little white dots on my fingers now.

I know that ive got like 2 days left of my mero and it wasnt really worth coming out so soon to the end, but i wanted to and i think they wanted me to be out by tomorrow at least as its my 21st :D.... in fact i just realised the time and its officailly my birthday :D Im now 21 and old!! Happy Birthday to me :)

Im going to my mums for my birthday with some friends and mums prepared a little buffet thing for us all, and were just guna chill out, watch some films, and embarress ourselves on the Wii :D
I was going to go out drinking with friends on Friday night but im still way to knackered for that now and ill still have my IV meds in my system, and last time i drank after coming off them... well ill just say it wasnt pretty, and i looked like death :| So im going out in a few weeks when im pretty sure im all clear :)

I was talking to my physio today before i was discharged and she said itll pay me to get out of hospital as then i can gage when im off the meds what is making me feel so rubbish all the time, whether thats the meds, generally being in hospital, or the fact that this infection has just really battered me and i just need my rest to recharge my batteries so to speak. Ive made a really good plan for physio during the week and weve fit it all in around my lectures and things. Once the summer arrives ill be able to go back out there and start running again, plus im getting my gym sorted out and am hopefully having my induction next week.

I was joking with Emily saying that i need to go on some sort of course to be rehabilitated back into society... that is depending if they'll have me :P

On a closing note, im so happy for Rachael Wakefield who got the call for her new lungs! I dont really know her well, but i know she is a very strong women and all my good luck thoughts are with her! :)