Monday, 27 October 2008

really had enough

I'm so fed up really really am! Toria's death has really hit me so hard it has made me realise how real everything is and how short life is. Today a friend was moaning bout her rubbish her life is how can she sit there and say that? 1 she has a beautiful baby boy who she will no doubt she grow up and take his first steps and say his first word. Toria will never get to have that and she never onc moaned about how hard it is being a mum even with her Cf aswell she was amazing. And i wish she was still hear today to see edward grow up and walk and talk but she won't and it breaks my heart so much.

All my hard work with my weight is over it's all going again so can kiss goddbye to my transplant.

I had a dream about toria last night was very wierd and upsetting i dreamt that i was on msn and then she suddnely signed in and was chatting to me even thought she had passed away was very weird didn't know what to make of it! I feel really bad cos i know toria wouldn't want me to feel so down about her passing away and would want me to get on the list but it's just so hard not to have her around for some good advice plus she never got to hear about harefield :( i miss her loads. everytime i see a jammy dodger bar i think of her as she decided to go buy some one time cos i raved about them contstantly lol. I wanna go to her funeral but i know i'm just to ill at the moment. So i think i'll send some flowers so that she knows i'm thinking of her. Her sister Shelie sent me a lovely message the other day thanking me for all my messages to toria. Everytime shellie said you'll never guess who this message is from toria would roll her eyes and shurg knowingly and shellie would say it's from Jo and toria would smile. it made me feel happy that she knew i was always thinking of her. The teddy i sent was also sat at the end of her bed which is sweet. Just wish she was hear to help me through this rough patch now. she'd give me some conforting words and make me smile with what she says she always knew the right things to say :) anyway gonna go climb the stairs when i say climb i pretty much mean crawl so i can have a bath am sleeping downstairs tonight though saves me going up and down tomoz.

going hospital wednesday as cass the cf nurse is worried bout my chest and appetite my dad is taking me though cos my mum is to busy everything comes before my health that's how it feels anyway!

Saturday, 25 October 2008


So much has changed the past few days. Toria has left our world which i still can't believe.
I also talked to my mum about exactly how i was feeling and she has suggested that i live with her in the week so that i ca have the help i need but i'm not sure as i miss my dad and animals so much. I also rang my hospital yesterday as i don't feel well and have lost a bit of weight they just kept saying how hard this week had been with toria passing and everything. I really didn't need to hear that it has been hard but i'm ill cos of my chest. So i have taken actions into my own hands seeing as they didn't wanna listen and am taking some iv's that i had left over from all the times i've had some. I alway seem to be given extra lol i just need to mix them myself which is ok . If i don't start perking up within the next week i shall ring hospital again. I have styaed here at my mum's for the week which has been nice but upsetting cos it's highlighted how bad things have got i physically can't climb stairs anymore. and it's getting much harder and tiring to dress myself. and i'm using loads more oxygen then i normally do and shopping oh my god what a nightmare if i don't take my wheelchair i get to the point where i wanna sit down on the floor and not move again. i really can't beleive how fast i'm going down hill. it's scary. and i hate the ffact that i have to wait til i'm 50kgs before harefield will have me in for assesment i need to be on the list now or i'm afraid i won't make it so much going through my head it's very hard and emotional x

Thursday, 23 October 2008

Goodbye Toria

My dear friend Toria lost her fight against CF last night. I was abit concerened that something wasn't right as there was no update posted last night. I found this morning when my friend text me and said i'm so sorry about Toria Jo. I txt back saying it's ok she's still fighting hard of course not realising she had passed away. I checked Toria's facebook profile and immediately saw a post saying R.I.P I have to say it really gutted me and shocked me. I really thought that she would be ok but i'm so gutted that she didn't. she was a brillant friend to me and lot's of other people. wheneva i was feeling angry or upset about CF she'd always say something to cheer me up. I was readin all the messages she sent me today and they made me laugh and smile and cry. She always had a great way of putting things. I remember the night i took her and oli (also has CF) Clubbing it was a really good night we had a laugh and toria looked really pretty that night. I just wish i had taken some pictures of that night. She was one of the people who talked me into getting a port fitted. She tried to talk me into a feeding tube but she knew she'd never get me to have one lol she told me to many horror stories about hers hehe. I also remember the first time i found out she was pregnant i was so shocked she had posted it on her facebook status it said toria' going to be a mummy in 3 weeks i was like are you joking lol and she was like nope i'm going to be a mummy. And then she had beautiful edward she told me she wanted to call him something fabulous like tarquin lol she was so funny. she always saw the best in people. I'm going to miss her updating her profile with pictures of her luke and edward every month as she loved taking pics of them all. It hurts when i think how such an amazing woman could be taken from this world who had her whole life ahead of her and had so much to live for it's just so unfair and i never thought this day would ever come. I hate so much that it has. I know toria wouldn't want me to be upset she'd want me to smile at memories of things she's said and done and also she'd be rooting for me to gain those extra 4kgs. as i know she was proud of me for how well i had done so fair. I'm always going to remember toria and will keep every message she has ever sent me. i will miss you so much toria you were so brave and fought so hard. Rest and breathe easy now and watch over us all. love you lot's From Jo xxxxxx

I added this picture of toria as it is one of my faves of her and was so proud of her when she done it.

Toria crossland 13/02/1985 - 22/10/2008 Forever in my thoughts R.I.P sweetie xxxx

Tuesday, 21 October 2008

having a break

Am spending a few days with my mum as i've been really ill and it's taken alot out of me. So she's going to take care of me till i get my self back to my normal strength if i can. Been conctsntly thinking bout toria and i'm so upset bout the recent news that the docs can do nomore for her but make her comfortable. she's done so well to get as far as she has i just hope she keeps fighting for her friends and families sake. she got the teddy i sent her which made me a happy it's sitting on the end of her bed which is nice. i'm just hoping for a miracle now she's been a good friend of mine since we met 5 years a go at the chruchill and i couldn't stand the thought of losing such a fab person. xx hang in there hun love you lot's xxx

Thursday, 16 October 2008

postive thoughts!

After a few bad days of feeling really pants and down. I'm beggining to feel more positive. I sat down with my dad and told him how i'm feeling and how hard everyday is for me he said he understands and is going to speak to my brother about being more helpful.I think my dad finds it really hard to deal with as he said i'm his little baby and children aren't supposed to die first they should out live thier parents and he said it's his goal in life to get me through all of this and get me healhty with some nice new lungs. which was sweet and made me cry i think he nearly cried too lol. so now i'm just trying to get myself on track and chillout and take my time with things and not rush. :) I sent toria a get well bear today hopefully she will receieve it tomoz. I read on her wall on facebook that she had a visit from little baby edward which is fab she was aware enough to see him and ask for him. which i am taking as a good sign. Luke has been at her side constantly which is so sweet of him .

Monday, 13 October 2008

who am i?

I feel so totally alone and lost i just wanna stay in bed and sleep and never get up again i've actually never felt this low before in my life and i hate it. I'm wishing i never went harefield as it's since then i've gone totally down hill with my mental state. I'm trying so hard to gain these last 4 kgs and i'm just getting so wound up and upset by it all. I'm contantsly waking up with headaches in the middle of the night at the and in the mornings that only go away after 15-20 mins of oxygen. So i'm starting to feel like i'm getting even worse and that i'm going to be relying on my oxygen alot more very soon. my appetite is not great at the moment. even withthe megace i'm struggling maybe it's cos my bodys readjusting to coming off the iv's maybe it's all stress dunno.

Had a huge row with my dad and brother last night again. I had gone upstairs to bed and forgot to remind my dad that my oxygen cylinder needed to be brought up by this time it was to late and he was in bed. So i asked my brother to get it for me and what happens i get shouted at as usual for asking for help. He was moaning about his foot cos last sunday he dropped a 40kg box on it and it's really swollen and he was going your such a annoying cow i've broken my bloody foot so this should be fun getting this stupid oxygen thing up the stairs. He won't go doctors about his foot so therefore i don't feel sorry for him and he doesn't even know if he's broken it my dad just said you should get it looked at incase it's broken my dad ain't a bloody doctor i swear my brother is a total useless moron.!!! anyway he brought it up and just dumped it in my room didn't bother putting it down and making sure it was safe and wouldn't fall over. Then what happens oh it falls over cos the idiot hadn't put it on the carpet properly. So my dad heard all the noise and got up and decided to have a go at me saying why do i alwasy do this? Do what? ask for my oxygen cylinder to be brought up? see when i get tired from tidying up or doing my washing i then get moaned at for tiring myself out and not asking for HELP!!! but again when i do ask for help i get shouted at then by my arsehole brother! I just feel like giving up i really do. I feel like i'm such a burden on everyone cos i need help every now and then. i kept trying to lift my oxygen cylinder up but guess what it's to heavy for me and cos i was getting all worked up abaout the fact that i couldn't get it up i started finding it hard to breath so there i am crying my eyes out struggling to breath not being able to get my oxygen cylinder up to have some oxygen and my dad and my brother just left me there. that really hurt the most. I ended up laying on the floor with my oxygen cylinder and managed to get it turned on so i could breath. after about 20mins i had calmed down and then spent half an hour trying to left it off the floor i dunno how the hell i done it but evenutally it managed to get it up and hurt my arm with my picc line in oh joy that's probably buggered now as it hurts like hell so thanks dad and my kind caring brother for being total twats!!!!

Friday, 10 October 2008

things can only get better right?

Haven't written for a little while been away with the fairys and had loads on my mind. Had hospital yesterday as it was end of iv's thank god! they really knocked me for six it was a drug i hadn't had for ages so it's understandable why my body didn't like it. My lung function is upto 0.8 which i'm pleased about as it has been ages since it was that. My weight is upto 46kgs so only need 4 more to get to 50 and then i can ring harefield and go to the next stage of transplant assesement. My mum has been taking more time to help me now she came round wednesday and helped me tidy my room and hoovered it for me as it was taking me so long to do. i did all my washing but it really did tire me out! it's amzing the simplest things are such hard work! I need to try and calm down abit though as i'm stressing myself out by trying to do to much.
I'm feeling alot better in myself but keep waking up with these awful headaches that take ages to go or if i use my oxygen they go.
Cause i gained so much weight i decided to treat myself and buy a new phone. :)

I've been thinking alot about toria she's putting up such a strong fight and i'm so proud of her. she has so much to live for.

Had a good night monday i stayed at my bf's sorry he's now my ex again! he told me he wanted to be with me and see how things go. and then after monday he went all funny and quiet. then last night he decided to say he doesn't want a relationship but wants to be there for me. i just said why say you want a relationship to my face then. then he said cause i knew you wouldn't talk to me again if i told you the truth ARGH!!!!! last thing i needed was him messing with my head. But i'm gonna be strong and not let it phase me cause i'm doing so bloody well.

Saturday, 4 October 2008

thinking of toria

My friend toria who also has CF is very very ill at the moment and i am very very upset there is a good cance she won't make it but i'm so hoping she does. everytime something crap happens with my health she always tries to pick me up with her great comforting words. I have decided that to show her how much i'm thinking of her that i'm going to write on her facebook wall everyday till she is well enough to reply. I' sending all my positive vibes her way she'll get through this she's strong and a fighter. love you toria and thinking of you my sweet. big hugs and kisses to you and that goreause little boy of yours and big hugs to luke who i know is being such a great guy and staying by your side xxx

Thursday, 2 October 2008

harefield yesteday and hospital today...

Ok had harefield yesterday which was just basically the first meet and greet about transplant. It was a very long day which was to be expected lot's of tests and blood taken. met with the people there. I took my wheelchair thinking it was going to be all spread out but it's very close together all the departments which is good but it was still best as it was a long day. Anyway I did all tests by about half then me my mum and dad went and had some lunch my mum moaned the whole dy as everything was taking so long she wound me up and annoyed me but can't be bothered to write about that anymore cos it will just annoy me again let's just say i'm not talking to her at this moment in time! anyway so after lunch we went back to the clinic area and had to wait to see the registar who was very nice lol He asked bout my medication and just basic history then he dissapeared to talk to mr clarby He was also very nice and didn't sugar coat anythig was just very honest . My dad asked him if i could continue on these lungs for another 5 years and then have the transplant as you may not live after it or five years down the line but we'll see anyway he turned to me and said do you really wanna hear this and i said yes and he said there is over 50% chance of me not being hear in 2 years time. big shock my dad welled up but didn't cry i cried in the car on the way home but am ok bout it all now.

Had my mid iv's checkup today all is ok lost a little weight but that's cos i have been sick from them but i'll gain it back. had blood gases down to as i have been having headaches in the morning. and gotta go back next week for end of iv's YAY lol xx