Wednesday, 29 December 2010

Christmas Time

Christmas was great!!

Xmas eve the boys went out on a pub crawl which started at half 11 with a breakfast in a weatherspoons and then off from there. I met them at 8pm in a bar called Pure for the rest of the night. It was great and I enjoyed myself despite sore feet (I am useless in mini high heels) and the coldness! I got in and went straight to bed ready for Santa :)

Xmas day started wih a phone call from an impatient Scottings wanting me to go up there with his pressies. By half 9, i was there with a massive box and 2 big carrier bags full. He had a main pressie of surrond sound for his bedroom and lots of bits and pieces such as dvd's, clothes.... I always get lovely pressies off his mum and dad too. The doggies loved it and they didnt settle down until all the pressies had been opened. They LOVE wrapping paper so continued to shred it all over the living room. I then went back home at half 11 to wake my bro up as he had been out till early hours of the morning, gave him his pressie (tickets for us all to go and see Usher in concert!!! Wahooo) and then we got to daddys pub at half 12.

The pub shut at 2pm and we all sorted out the tables and got pressies ready. We all opened our pressies together and then ate dinner about 5pm. There was 12 of us!! Me, Scott, Danny, Dad, Lisa (dad's partner), Emma and Dan and Dan's girlfriend (Lisa's children), Lisa's dad and brother, and 2 of the regulars who were on their own for xmas - Tommy and Dennis. After dinner, we went home to see mummy. Unfortunatly her shifts fell on xmas eve, xmas day and boxing day from 7.30am - 4pm. It was a lovely evening opening our pressies with mummy and then watching the television.

The best part of the day: my bro falling over on the ice getting out my car. I swear i stopped breathing at one point through laughing so hard. He didnt even fall on his bum, he justfell straight on his back, banging his hip and laid on the floor for a few minutes. He was holding a chelsea shirt which my dad had just got framed, so that also landed face down on the floor but thankfully, didnt smash!! I laughed all night.

Now to mention some of my pressies: Scott got me a week in Rome!!!! I cant frigging wait...its not until July but im starting to plan already lol. My daddy gave me money, wii dance games, a pink cupcake maker, and other little bits and pieces. I got lots of different bits from Scott's mum and dad including a pink babygro!! My little bro brought me pink, sparkley stud earrings which were prettiful. Mummy brought me lots as usual which included a fur coat, pauls boutique pink hoodie, ipod nano, an epilator, and lots of stuff from my fav shop Lipsy such as a dressing gown, slippers, bag, perfume, and velour tracksuit. Along with lots of other bits and pieces which were lovely. I think i did very well!!!

After boxing day, i got to see family!! My aunties came down to see my dad from Bath and Bristol which was great and then, in the afternoon, I went with my mum to my auntie angelas house to see her and all my cousins. My cousin is pregnant and the baby is due at the end of Jan so good luck Frankie!!! Its a baby boy and she only lives near my hospital so i hope i can go and keep her company once she has him.

x Lots of love x

Wednesday, 22 December 2010

Happy birthday my little port

Its a year ago since I had my first operation under a general and made one of the best moves ever in health terms. If you were reading my blog this time last year, I had just been discharged from hospital after the operation and it was snowing that day aswell!!

I went hospital yesterday and managed to park straight away (obviously alot of disabled people didnt want to venture out). Had my needle out, held my weight at 47kg, my chest sounded pretty clear apparently, and i didnt count my lung function as it went horribly wrong. The lung function man wasnt there and they didnt know how to set it up properly. You do a big blow out for as long and hard as you can and then breathe in....well, i went to breathe in and it stopped me so i had to quickly take it out my mouth so i could actually get some air!! Great one.

I really couldnt wait to finish iv's this time and felt really impatient. Maybe it was because its xmas, maybe because i was feeling really well, or maybe its because of the damn side effects the iv's were causing. This time I had a bellyache for about a week, going to the loo all the time and it turning green...nice!! This is because the iv's can kill certain bacteria in your stomach so i hope that sorts itself out now. I also came out in a rash around my eyes, ear and belly/chest. I have worked out that i am allergic to the alcowipes that sterilise the end of my port line. It hangs by my belly and chest so the rash is there, and because its on my hands i then touch my face and stuff so it spreads the rash there too. My right eye was the worst as it swelled up on saturday and i looked like Will Smith in Hitch when he has the reaction!!

The weekend was crap. Saturday just got worse and worse. It snowed lots and all around my road and area was gridlocked with cars so i couldnt go to see dad at the pub so i sat at home. I was watching the tv then the sky went off so i moaned at that, not that i could see it very well with one eye!! I also missed a party that night too so it wasnt a great day.

The rest of my time has been spent shopping for xmas, doing the decorations and cleaning my room. The last few days before xmas I will be finishing off the shopping, wrapping up pressies and making sure we have lots of food in :) We are off out on a pub crawl on xmas eve and then xmas day with the families.

Hope you all have a lovely day, get lots of pressies and eat lots of food. I know I will.

x Lots of love x

Wednesday, 15 December 2010

Blonde again!!

I have my lovely blonde hair back!! I did like being a brunette but i always missed my blonde and now i love it :) I had it done yesterday and now my energy and appetite is coming back and the cough is less and less, so i feel like the 'old' me again. Yay!!

I had a good weekend but also a sad weekend. Friday night was the JLS concert at the o2 which was great and they are brilliant live too. I took pics and had started to feel abit better by then so was able to dance. However, my best mate Steph had full blown flu (not a cold, but flu) and still isnt able to get up out of bed. She couldnt come so i took my little bro who was excited. It was nice to spend an evening with him as we are very close but I hated that Steph couldnt come. I had her crying down the phone because she couldnt go and because she felt terrible and I hate the fact that I couldnt go and see her. She always comes to see me and up the hospital when im not well so i wanted to return the favour obviously, but we both know that its not an option. If she is that ill with the flu, then god knows what would happen to me. I just text her most days and we will make up for it once shes better. Im always thinking of her though xx

Saturday was supposed to be a CF fundraising day at the pub. Because of the weather the last few weeks it had to be called off so that was abit poo but it will be rescheduled for another day so im looking forward to it as im a mascot :)

As i said earlier, Im feeling alot better now these iv's are doing their job and im counting the days until i finish them. Once i start feeling better, i start really wanting the needle out and it starts getting annoying and such a chore. I have a week to go and i hope it goes fast!!

x Lots of love x

Wednesday, 8 December 2010

Crashing back down :(

Im on iv's :(
Started them yesterday and am already feeling the shitty side effects - which is good as i know they are working but bad because i feel like a little ball of poo!! My cough got worse over the weekend so I was forced to ring Lance and organise iv's. I got the iv's delivered on tuesday then took the first dose up to the hospital with me and Lance put my needle in.

I was on my feed for 2 hours whilst watching some programme on the 50 top bad plastic surgery stories on E4 which was horrendous!! During this, I was hot and cold so was in and out the covers, switching my fan on and off and then as i sat up the sickness started and I made it to the loo before being sick...this scared mummy again, but i brushed my teeth, refilled my water and plugged my feed back in lol. I think its the iv side effects and i hope they go soon!!

I havent really done much else as im trying to rest as i have a busy weekend and want to be better as soon as rather than push myself whilst im ill and take longer to recover.

I dragged myself to the pub on sunday as we started to put the decorations up which was great. Because I coughed so much and was tired anyway, I was shattered afterwards, so went straight home to bed for a nap :) Today Scott gave me the brilliant news that he has finally decided to get his haircut after 6 months, but he cant have it yet because he cut his head open on the scaffold today at work! Div!

Will update you on weekend events which include raising money for CF and going to JLS concert!!! Im overly excited :)

x Lots of love x

Thursday, 2 December 2010

Snow is here!!

Stating the bloody obvious here but....its snowing!!! Yay!! It started on tuesday morning so I drove up to Scotts (he is off work now as he is on a building site, which is not good to lose money before xmas) and it was all main roads so was clear to drive on. We took the dogs to a little park near his house which hardly gets used and we made a snowlady and snowman which took ages but was great!! Scott threw snowballs at me as he cant help himself and the dogs love to eat snow so they were happy too. I was wet so changed into scotts clothes and we sat in his room watching The Walking Dead and 24.

Scott has a Lovefilm account which allows him to rent films, tv series and computer games so since then we have watched lots of things. On our holiday to York, we watched the whole series of Gavin and Stacy which was brilliant but we couldnt get into The Office, even though I love Ricky Gervais. Our new series is 24 - ive never seen it before so we started from the beginning and are so far just over halfway through series 1...each series is 24 hours long and i think there is about 8 series, so it will take awhile but its gripping!!!

Anyway back to snow stories...surprise surprise, i fell over!! I got home from Scotts and was all alone, the street was quiet (thank god) and it was dark. I got out the car and walked up the side of my mums car which is parked on the drive and stood in a big mound of snow which made me fall forward abit, so i put my other foot forward onto the step, which is very slippery and skidded and landed on my poor little knees. I sat there for a while in shock then laughed to myself and eventually got up and wobbled indoors. Scott also fell over which is even funnier!! Last night he was seeing my brother's car out the bottom of the road as he had to reverse down it and as he stepped back, he slipped, smacked the car with his bare hand as he was looking for something to grab, and fell flat on his arse. Im laughing about it even now - poor Scottings xx

On wednesday my daddy had an operation on his sinuses as they have always played him up but over the last few months he has been on constant painkillers and had headaches. I get bad sinuses because of the CF so partly understand how bad the headaches can be but luckly mine dont cause me too many problems, its only when i have a cold i notice it. Its also the first time he has had a general anesthetic and he was only a day case if everything went to plan. Everything went well and I spoke to him once when he came round and once when he was home. He feels better already and got lots of sleep whilst waiting to be discharged so went back to light work at the pub!! He loved the anesthetic and compared notes with me about it and then said he had a cottage pie for dinner before he left and he moaned about the portions lol - i understand totally ;)

Today I tidied my room from top to bottom and i took a few hours - half an hour was spent on trying to clean up the drips from my overnight feed all on the floor and side. It sets like wonder it helps put on weight!! I wrote another list on what more i had to buy for xmas and really wanna go shopping now to finish it. Me and mummy were gonna go shopping today but the weather has stopped us going Lakeside as roads are blocked, too icy, or closed!! Something to look forward to though!

x Lots of love x

Sunday, 28 November 2010

x Still feeling happy...and more shopping! x

Ive been to the cinema twice since my last post: last Sunday we saw Harry Potter which Scott got very excited about as he loves it, and this week we saw London Boulevard. They were both good films!!

In health news: Im still doing ok, my chest seems fine and my weight seems to be holding. Over the last week, I have been finding eating difficult...i am hungry but just dont know what i feel like having! I hope I find something soon as im annoying myself!! My little lungs DO NOT like this weather. Everytime I go outside, the sudden cold air and change in temperature makes me cough and sends my lungs into a little hissy fit. I still want it to snow sounds like every part of the UK has snow except us in London but it is promised for this week - yay!

I also had a family outing to the doctors for a flu jab (fun times) which i didnt even feel this year, didnt get a dead arm and didnt have any side effects...i personally think i didnt feel it as i am fatter this year so have more meat on my arms lol :) I went back down the doctors for an appointment to sort out my prescription as there are things missing off of it that should be on it and it was driving me mad. He sorted it in 5 minutes so now i have a prescription with 22 different items on it. He finally did my referral letter to get me on a fitness scheme at my gym so that I can go for cheaper because I need to go for health reasons. It means i can go whenever I want so dont have to worry too much about money as its only £11 a month. Now just have to ring the gym tomorrow to say i have the referral and will hopefully be able to start it in the new year.

Ive done all my online xmas shopping now and still have a few things to be delivered but the things that I have got, ive wrapped up all neatly. Im off to the shops next week with my friend Steph to get more pressies, cards and bits and pieces. I love buying people pressies and try to put alot of thought into them. Im so excited...its only a month away now!!!

Today was a year today since my friend Anna lost her battle with CF. It seems like ages ago and I miss talking to her everyday. We used to have such a giggle online and she was an amazing person to know.

I have a busy start to the week ahead so will update once I sit down!!

x Lots of love x

Monday, 22 November 2010

x Diabetes clinic x

I had an appointment at the diabetes clinic with Jen my dietician to have a talk about what the hell my body is doing with the insulin and we still dont really know!! As far as i can make out....I definatly have CF related diabetes because my sugars are not in the 'normal' ranges of 4-7. However, when I have been testing them they havent been drastically high - i think the highest was about 10, however, its more a case of them being low. This is not because i havent been eating...for example, after a meal at the carvery with a glass of coke, 2 hours after my sugars were only 2.7, and the other night at the start of my feed my sugars were 9.6 (after a bowl of cereal and mars bar before bed) and after my feed finished at 3am, they went down to 8.5. Even CF patients without diabetes sometimes have to take insulin with feeds but mine went down after having it?? Why is my body so bloody complicated lol!!

The result of this is an appointment in January to fit a constant blood glucose monitor. This is a small tube (like a cannula/venflon) thats put into my belly (my poor little belly is taking alot of trauma this last year lol) and will stay there for about 4 days. It has a memory in it so that it can see what my blood sugar levels are doing for 24 hours a day. I really didnt want it but it is the only way we can see a true picture of whats happening and hopefully get some answers. If diabetes is not treated, it can cause issues with putting on weight and increased chest infections - both of which i am trying to improve!!

Tuesday night was brilliant. Me and Scott went for a meal with our other couple mates Sirin and Carlton. We havent seen them in a while and ended up staying out for about 4 hours in the pub/restaurant talking about old times and really laughing. I have done alot of my shopping online these last few days and have got alot more ideas for stuff and have planned a big shopping day to Lakeside with Steph in a few weeks to get pressies and bits and bobs so cant wait!!

Friday I had a bad day - just feeling tired and coughing with a sore chest. These days always worry me but i try and think that everyone has bad days so if i just allow myself to rest and sort myself out the next day. I stayed at home all day and mum had the day off so we made my high calorie muffins. The 1st attempt went wrong and i made some mixture that strongly looked like scrambled egg so mummy chucked it in the sink...the 2nd attempt went well and even though it took me 2 and half hours from start to finish, i finaly have something that resembles muffins :D
After, I was so tired so fell asleep and then loaded up on KFC to boost my calories as i didnt do well with eating that day either. Hopefully the weekend will be a good one.

x Lots of love x

Monday, 15 November 2010

Too much going on in my head!!!

Im surronded by lists yet usual to-do list, ideas for xmas pressie list, pressies that i have brought list, what i want for xmas list....argh!!! I keep having to tell myself that i dont have to rush about for xmas as i have plenty of time, but i never know what is gonna happen in my life and i dont want to have to worry about pressies incase i do get a chest infection or anything. I know thats abit of a negative way to think but im just being realistic!! I offically started my xmas shopping on saturday evening as that was my first online purchase done - yay!! Im not going to mention what pressies i have brought people on here as i know certain people read this and i like people to be surprised :) However, any ideas as for what to buy Scott would be welcomed (just email me on facebook or something) as all he keeps going on about is a damn 3d television which is abit out of my price range thank you very much lol!!

Also sitting next to my lists is court papers. This was what greeted me when i got back from York. Im not going to go on about it as im too angry to even start speaking about it again but basically i appealled their decision to put me in the 'back to work' group as i dont need help getting work, its a case of me not being well enough to work. They are now saying that i have to go to court to take my case furthur because they believe that i am well enough to attend the meetings for the 'back to work' group. They sent me the criteria information as to who qualifys to be in the other group, and to put it bluntly, you have to be practically a vegetable! But can you tell me what the point is, of going to these meetings to help me back to work if im not well enough to go to work. They totally agree that im not well enough to work but their claim is that i am well enough to attend the meetings....please tell me what the point is in that?? Isnt that wasting mine and their time??

Tuesday i went clinic and my lung function had increased upto 24% and it WILL continue to increase!! My weight increased by 0.1kgs but we were all happy with that as i had done lots of exercise on holiday and not had too many feeds but, in the words of Tesco - every little helps :D We are still trying to sort out my diabetes as sometimes i have high blood sugars and sometimes they plummet so its too dangerous for me to have insulin at the moment until its sorted out as i dont want to end up in a diabetic coma!! Ive got to monitor my blood sugars all through-out the day until my appointment on tuesday...this results in me attempting to prick my finger about 3am when my feed finishes...great one!!

I have also now made up my mind that i strongly dislike one of my doctors even more after this clinic. When i had all the probs with my peg, she did nothing and didnt listen to me in any way, just kept throwing anti-sickness and heartburn medicine at me...and we all know now that the sickness and burn was because the tube was lodged in my bowel...anyway, i havent seen her properly since, until this clinic. She knows how nervous i am about anything to do with my peg (for obvious reasons), although i am getting better and dont check every few hours anymore to see if its still there!! She felt my stomach and was pushing over my scars, which im funny about people touching and then without warning just turned my peg all the way round really fast which pissed me off bigtime!! Then she was checking all my tablets and asked if i was still getting heartburn and if i was still on anti-sickness....erm no!!! I havent been on them since may and it wasnt fucking heartburn or reflux, it was the bastard peg many more times!!!

I also have a reciepe for muffins...not normal muffins...1000 calorie muffins!! I went out and brought all the ingredients before the weekend and then decided to make them today but realised i didnt have a muffin tin...and i still dont have a muffin tin, because i brought a yorkshire pudding tin instead. I thought they were the same but apparently not (the muffin tins are deeper) so im sulking and refusing to go out again so will now make them tomorrow afternoon instead.

God...this was a long post wasnt it!! That will teach me to leave it a week to update!

x Lots of love x

Thursday, 28 October 2010

Sally Morgan is truely amazing x

Me and me best mate Steph went on a little trip to Tunbridge Wells on Friday night to go and see Sally Morgans show. She is one of the top psychics and I have seen her programmes on sky over the past year. Before her, I had been very weary of psychic stuff but she says things that no-one could possibly guess or know. The show started at 7.30pm and lasted for 2 hours but it went sooooo quick and i could have sat there all day listening to her.
I didnt get a message from anyone which was a shame but im not disappointed. We are looking to go again as it was a great night out. We laughed, cried and got chinese on the way home :)

Tuesday was hospital clinic. Since i only finished my iv's on thursday, i didnt expect my lung function to be amazing, and it wasnt, it was down. I know this sounds strange as I had just finished iv's but its normal for me. It takes me about a week after iv's to start feeling 'normal' and thats when my lung function picks up as i am able to get out and about more. My weight was up to 47.7kg so i am so pleased as it means im only about 2kg away from my target!! My feeds are going well since the peg change (they were fine before and will be fine after but i just worried that they wouldnt be!!). Ive also started some garlic tablets that I brought from Boots. I have heard alot about garlic and that it can help pseudo (a CF bug), so thought it was worth a try!

This week i have been so busy, ive only just managed to fit in writing this blog! We are finally off on holiday on Saturday - me, Scott and the doggies - to Yorkshire. We are staying 2 miles away from York city centre. I have been rushing around - well as fast as i can possibly go lol - sorting things out like the sat nav which i havent updated since i got it 3 years ago...i didnt even realise you had to update it which is highly stupid of me as roads and places are changing all the time!! Ive made space on the camera and camcorder, had to wait in for deliveries, and had to sort buster out some travel pills as he gets bad car sickness - bless him. I got my suitcase down last night and have just started sorting out my medication...i am surronded by tablets, feed and nebs...its like a walking pharmacy! Im off now to do the fun bit which is sorting out my clothes, alhough I hope i dont have to do too much ironing!!

Will be away for a week but will have my phone on me so may update the blog halfway through the week from our lodge!! :)

x Lots of love x

Friday, 22 October 2010

Changing my PEG button

For those not medically minded let me explain a few things about a peg button. My peg tub is 3cm long inside and then finishes with a balloon filled with water on the end. This water balloon is what holds it in my stomach and if anything happens to it and the balloon goes down, it has the potential to fall out of your stomach. If this happened to me, i promise you, i would be on the floor with it!! You have to check the water levels every week and the maximum it can be is 5ml. When i checked it on monday, it was only 1ml, so i filled it back up again. Soon after, I felt water in the hole of my stomach and my belly was damp around it. It bothered me all night so tuesday morning, i checked it again and it had gone back down to 2ml.

It took me an hour and a half to pluck up the courage to ring Lance and Jen as I knew what they would say. I had to come in to have my peg changed as they believed there may have been a leak somewhere. I was going up to the hospital on thursday to finish iv's anyway so we agreed to do it then. Until thursday, I put tape over my peg incase more water leaked out the balloon and tried not to think about it.

Thursday I just sat there all morning not talking, i could hardly eat and had a dodgy stomach - all of these were nerves. Me and mum went up the hospital for 3pm . I was a mess. I cried like a baby, was shaking lots and had to fight hard to control my breathing as i had what only can be described as a mini panic attack and found my breathing going way too fast that i nearly passed out. I wasnt allowed anything to calm me down. Other people can be given entinox (laughing gas) but because i had a partly collapsed lung when i had my port put in, entinox can make it more likely to happen again. Lance took down the balloon, took it out, put the other new one in and then filled the balloon up. Was done quickly but it did sting. I dont know if that is because its the first time ive had it changed?? It bled alittle afterwards but nothing drastic and when he took it out, belly juice came out too...ewwww!!

I fell asleep as soon as i got home and went to bed early as i was shattered. Am up bright and early today but am staying indoors to do jobs and then its the weekend!! woohoo!!

x Lots of love x

Monday, 18 October 2010

Dehydration....we think!

I think the mystery of the headaches has been solved thanks to my amazing friend Gemma :) She mentioned that it could be dehydration, as you can get more dehydrated whilst on iv's, which sounded like a good theory as it was only headaches in the morning. I have been making sure i drink more water during the day, take lots of water to bed with me and i havent been too bad so it must of been that! Thanks mate! Cant wait for these iv's to finish on thursday...soooo bloody annoying and tiring keep having to do them.

Had a tiring weekend. Friday was a trip to Rainham to see one of my friends as I havent seen her since we went on holiday in June. There was 6 of us. We all went out for a chinese and then back to Debbie's flat after stopping at the shop for alcohol (for the boys) and snacks (for me!!). We stuck a films on and everyone started to fall asleep one by one until it was me, Jack and Carlton still awake. I enjoyed watching them sit there chatting rubbish as they continued to get more and more drunk...good times :) Saturday morning everyone was up for mcdonalds breakfast and then we left by half 12 in the afternoon. I went to see my dad up the pub and watch the footie. Sunday was another early morning as I went to watch Scott play football which i enjoy but its starting to get pretty cold!

Today I did nothing as i was so tired from the weekend. It was quite a busy weekend but it was made more tiring because it involved late nights and early starts. Today i have done little jobs and made millions of 'to-do' lists as we go on our holiday in 11 days.

x Lots of love x

Thursday, 14 October 2010

What are my headaches??

So since starting my iv's thursday i have woken up everyday with immense headaches. I have a few theories but none really make sense. I did think it may be 'lack of oxygen' headaches. However, i am not breathless at all and am breathing well actually. When im sitting up or standing up, my head is ok but when i lie my head down, it hurts so i dont think its my chest. This means ive been tired most of the day and been having naps early afternoon. When i have these naps, my headaches dont happen, its just in the mornings, so i really dont understand it. I did think it may be the iv's as it started when they did, but i have them 3 times a day and im fine for the rest of the day. Hmmmmm.....

Tuesday was a visit to the cemetery as it should have been Vickys 22nd birthday. I always think about her anyway but she has been on my mind alot lately.

Since switching back to my old feed at the start of the week, things have been fine and i used my portable bit of the pump and my backpack to stay at scotts last night. It was great and Scott seemed highly amused at how excited i was about using it for the first time - i am easily amused ;)

I just weighed myself at home and have hit 48kg and i think the scales are roughly the same as the hospital so im soooooo pleased! It is the heaviest i have been since losing all my weight nearly 3 years ago now. I am on my own tonight and so shed a little tear of happiness. Im nearly at my target!!!

x Lots of love x

Sunday, 10 October 2010

Feed tastes rather horrid!

How do I know this? Because I had my first full 1000ml overnight on friday night and woke up in the morning feeling dreadful and promptly threw it all back up again! Nice! We have come to the conclusion that this type of feed is too rich for me and doesnt agree so Im switching back to my old feed.

In feeding pump news (because i know how funny you all think my pump situation is!) I have another new one! I had a lady come over on Friday to train me for a new type of pump which is smaller and you can take a section of it off to make it portable which will be great for me. You also can have a little backpack with the pump so you can move about wearing it and dont have to stay stuck in bed or in the chair whilst having it - im so excited and will clearly be the height of fashion in my backpack lol :) The lady took my old pump which actually broke the night before (i dont know if this is fate or just another thing sent to annoy me!) so I am now on my 4th pump since February. It may possibly be a record.

In other health news, Im tired alot at the moment and still eating but not massive amounts as normal. My iv's are having the usual side effects by making my balance off and I keep swaying and getting little bits of dizziness. Now I am constantly falling over anyway so add these iv's into the mix, and i am constantly walking around like a pissed person much to the amusement of Scott and mummy. Oh and I got my diabetes result over the phone on Friday too. The results should be between 3-7 but mine were 15 - so yeah, im diabetic. However, i need to check my blood sugars closly for a while before they give me anymore insulin as CF-related diabetes is complicated so I will be monitored for a while.

All in all not a great past few days - too much CF stuff and too much feeling like absolute poop so I forced myself to go out last night to a 21st birthday party with loads of Scotts mates and their girlfriends. I was feeling abit better by the evening but really had to make the effort to get ready and keep smiling. I am so glad I went thou, it was a brilliant and really funny night - i got to talk to some of my good mates, laughed alot at drunken dancing, saw a few arguements, danced (and i thought i danced quite well even in my 'pissed' state) and then finished it off with stop off on the way home (in my car with a full load of hammered boys) at the chicken shop! Good times :)

x lots of love x

Thursday, 7 October 2010

x My m.o.t x

My m.o.t aka annual review day was today. Lots of different things are done today and i will try and remember them all so bear with me!!

I wasnt allowed to eat from midnight last night for 2 reasons - the ultrasound and glucose test. I was up early for me at 7am and had to be at the hospital for half 8. I had my port needle put in and dressing put on as it was agreed that i would have 2 weeks of iv's as my cough has got worse, my appetite was starting to go, and was getting more tired easily. See - im being a good girl and not leaving iv's until the last minute as i dont want all my hard work to slip back.

I had loads of blood taken from my port which filled about 15 different tubes and then i had to drink a glucose drink. The drink is to check for diabetes as i am borderline diabetic. Over the past year, i have only had high blood sugars when i get ill so im not fully diabetic yet and just take insulin when needed. The test involves taking blood after fasting, then drinking the glucose drink (which is so sickly)all in one go, waiting 2 hours and then taking blood again. If the results are higher than 7, then its positive for diabetes and i should get results tomorrow.

I also had a chest xray and ultrasound. I was rushed through to both as i saw one of the memebers of staff that i knew and they took me straight in :) I was nervous about the ultrasound as they look at all the organs and i still dont like people touching my scars yet but the woman was really good and avoided them. Also had the usual weight, lung function tests which were down from last week alittle but it was early in the morning and im not well so im not fussed. I did get out of my physio test though as i just started iv's and they only do it when you feeling ok.

We got out of there by half 12 and headed straight for asda to pick up some sandwiches. This is my new food faze - cheese and onion sandwiches from asda or marks and spencer. I got home and ate that with a big glass of coke and then promptly fell asleep for just over an hour.

I also met a girl called Lauren today. My friend spoke to me and told me about her and i have been speaking to her most of the night. Her best friend passed away a year ago aged 17 from CF, and so she is now raising money for the CF trust by treking for 9 days across the great wall of china!! Im so jealous as i would love to do it, however my body hates me so wouldnt let me and i dont like flying so wouldnt even make it to china!! haha xx You have plenty of time to donate money or support to her as its not until May 2011 but that will give you time to save your pennies and give them to her :) Will keep you all updated nearer the time!!
>>> <<< THE LINK

x Lots of love x

Tuesday, 5 October 2010

No more drink for me!

So thursday and friday was fairly busy as I had loads of little errands and jobs to do and one of these involved picking up Scotts fifa 11 playstation game. So all weekend I was abandoned for football on the computer - thanks Scott, love u too ;)
Saturday was my daddys birthday so saturday night they hired a dj up my dads pub and we spent the night up there. Me and my bro brought him his usual shortbread biscuit tin and toblerone chocolate and also got him the new ireland rugby top which he loved. Also that night I decided (because for once in my life I didn't have to drive and wasn't on ivs or oral antibiotics) to have a drink. Now let's look at a few factors:
1-i haven't had an alcoholic drink since last year sometime
2-i am very small and thin
3-i drink magners cider
These three things meant that after 2 and 1/2 magners I was gone and then promptly needed my bed. It was a great night though and everyone said I looked well but by half 2 in the morning me and my bro got home. Mum was on nights and wanted to make sure I wasn't home on my own. Now this sounds silly I know, I'm 22 years old and should be able to spend the night on my own but I think I know why she hates it. I had that bad allergic reaction to iv's one night when she was working (this was all in an older blog post in about june I think) and I was rushed in an ambulance to hosp and also the nightmare time I had with my peg tube and being sick through the night. All this has lead to her panicing about me and things seem to hit her hard after the event has happened, which is now.

Sunday I woke up late on the sofa still fully dressed. I felt horrid! I didn't have a hangover but I was knackered and my mouth was like sandpaper. This is why I don't drink! I feel ill a lot of the time anyway so why put myself through the pain and tiredness the next day!! Lol. I coped well the rest of the day though and managed to get back up the pub to watch the football at 4. Everyone else had massive hangovers so we all ordered dominos and chinese to the pub but everyone agreed it was a great weekend.

In health news I'm not feeling great at the moment. I have been coughing more and then I woke up monday and it felt like someone had been sitting on my chest while I slept. It took me until about just after lunchtime to get moving after I had done nebs, meds and taken painkillers. Managed to do my room and stay at scotts and today I'm not as bad but my cough is still there and my apettite is getting less and less so I'm starting oral antibiotics tomorrow so I hope they help or it will be iv's before holiday. I've been doing really well so don't want it to slip!! Got my hospital m.o.t on thursday so will post about that with lots of info but it will be a tiring day which starts bright and early at the hosp for half 8 - great one!!

X Lots of love x

Thursday, 30 September 2010


The title will explain itself in a minute!!

Monday was a write-off because of the immense bellyache which lasted all day...i even had a bath as the warm water helps the pain but i hate baths...i get bored after 10 mins! I went to set up my feed pump at 11pm that night and set the rate (to tell it how fast to go) and then set it to run so the feed would reach the end of the tube. It didnt run. I went to turn it off to start again and even when it was off it showed the rate on screen - it had frozen. I got the book out and as i was trying to find out what to do, the pump started flashing and beeping even though it was off!! There was nothing about it in the book so i rang the emergency helpline and they said i would need a new pump. The fault is apparently very rare and she had only heard it happen to one other woman - oh surprise surprise!!

I said i wasnt waiting up for a emergency overnight delivery and that missing one feed wouldnt hurt so i scheduled it for 9am. We had to wrap up the pump in a duvet and stash it in the cupboard so we couldnt hear the beeping. The battery only lasts a few hours so it would die during the night - however, not in my bloody case!! Mum got it out in the morning ready for them to pick it up and it was STILL beeping - how is this happening???? Anyway they didnt come until 1pm so by this time i was ready to throw it out the door and the driver had the cheek to say "that will annoy me".

Later that day i had hospital clinic and it was another success!! 2 good clinics in a row - im not used to that! My weight had gone from 46kg to 47.1kg (3kg to my target!!) and my lung function had stayed stable at 26% which i was happy with as it meant it wasnt a fluke! I had to have a trial for a new nebuliser which is called Bramitob and they had to check my lung function before, 15 mins after and then 30 mins after. After i was bloody knackered, 8 lung functions!! Fun times. The nebuliser didnt give me a reaction so its ok for me to have but i have to get used to the taste - its horrid and tastes like feet :( and like im inhaling hairspray! Me and mum celebrated by going Lakeside shopping and i brought a hat lol x

x Lots of love x

Monday, 27 September 2010

I CAN NOT work!!!!

How many more times does this fucking job centre need to be told!! As i said before, i was put into the 'back to work' group for employment and support benefit when i should have been put in the support group - which means i can not work. I sent in my appeal at the beginning of August and was told to wait and hear from them....then a few days ago i get a letter telling me to attend a interview at 10am in the morning to start my plan on getting back to work! I am quite capable of getting a job and know full well the benefits of work so I dont need to be sat down and told that thanks!!

I rang them up and said i was appealling so surely i shouldnt have to go to anything until a verdict had been decided but apparently i do and if i dont go they will reduce or even stop my money which i am not going through again. Thats it you stop my benefit and give it to some foreigner who has just come to England or some lazy wankstain who cant be arsed to get a job so fakes a bad back....genuine claims are not easy!

So that was 2 days spent on the phone and i didnt end up going and asked them to change the time as it was too early and i wasnt feeling great (which was true) and they never got back to me, so thats not my problem! Had a good weekend up the pub with my dad on saturday and football on sunday which took me hours to defrost from after getting home.

Today my stomach is soooo bad and i have come to the conclusion that it was because of a dodgy hotdog i ate at the football ground - i am also blaming the food poisoning on Scott as he didnt take me mcdonalds breakfast like i asked, so i resorted to buying a hotdog from a little man in a hut! This is great news the day before clinic!!

x Lots of love x

Monday, 20 September 2010

x Just plodding along x

Erm....not really much to write i dont think.

Ive been having my feeds, doing my physio (but am going to attempt to do more!!) and taking my tablets like a good little CF patient. Actually a few little things have happened while i think back over last week lol... car went in for its 1st service. and scott went to the pictures twice this week - once on wednesday to see Grown Ups and then on friday with a few of the boys to see The Other Guys. Both were funny films so they were fun nights out.

3...I woke up on wednesday with no energy and only just started to feel my 'normal' self again on sunday. I dont know where it went and i was starting to worry but i seem to be back on track. I have a bit of a cough so it may have been linked to that but ive tried to get rid of all the crap in my chest and its seems to be not too bad at the moment.

I was supposed to go hospital checkup tomorrow but its really packed so they have changed it to next week which i dont mind. Another week to keep trying to get fat and fit!!! We are starting to decorate downstairs so im off to start stripping wallpaper while mummy is at work! Busy day ahead!!

x Lots of love x

Monday, 13 September 2010

I did NOT say that....

Thursday turned into madness and i had calls, emails, texts and facebook messages from loads of people and am still getting some now. I just want to say thank you to everyone for your nice words they really mean alot. I was pleased with the article but feel it could have been written abit better...i certainly did not say "make me a woman" lol how gay is that!!! I prob said to the woman that i look about 12 (which i do) and that has been translated into that title and i also 'said' "my child-like frame" - cheek :) I also laughed at the bit where they said that "i pour fluid down my tube" as if i just find any old liquid and bloat myself out!! I wasnt well when i had the pictures done and was on iv's but they werent too bad - thank god for make up aye!!

I didnt do it for me though, i did it to raise awareness of CF. I definatly did this as most of the messages i got said that they didnt realise what CF was, how bad it was or that i even had it :) Many people have said how brave i am and that i am inspiration but im really not - im used to this way of life and it would be strange for me not to have to do treatment, tablets or go hospital. Although i obviously wouldnt wish it on anyone, i have met and lost some wonderful people with CF and i look up to some of them in how they deal with worse things than i have dealt with. They are my inspiration.

The weekend was a normal weekend which involved the pub and football. The boys won. The only bad thing about the weekend was the bad stomach cramps - yes its girly week and yes - it bloody hurts!!

x Lots of love x

Thursday, 9 September 2010

So much happiness and nervousness this week

My emotions are all over the place this week!! Dont worry though, its mostly good emotions for a change!!

Tuesday was hospital clinic and mummy had the day off so came with me. I was nervous at what my weight would be (as i had a bellyache for the past few days) and what the lung function would be as im worried about it being only 20%. My weight was up to 46kg so I was pleased but that wasnt even the best bit - my lung function had gone up to 26% and thats the best its been since last November!!!! :D :D
I came out of the room and cried which I think was shock and relief. Now I know that my lung function is still low and I still have to work my little (but getting increasingly bigger) arse off to keep it there or even get it up some more....but the fact that it was able to go up is nice to know. I was so worried that after the last few months and all the problems, that it had damaged my lungs and that they may not be able to I wonder if I could push my luck and reach 30%....that would be amazing!!

I also asked the physio about different physio on the waiting list for the acapella which is another device to strengthen your breathing and getting up the crap on your chest and she was going to teach me the breathing techniques but i can not huff properly we decided to leave it!! My cough tends to be tickly so can last for bloody ages and this has something to do with my sinuses. I started a nose spray about 2 weeks ago but had also heard about a nose wash called sinus rinse from neilmed. The physio said she was just given a prototype and that i could have it so i have that to try too.

Wednesday was a good day too. I went yoga with mummy for the 1st time...i couldnt do all of the moves (??? is that what you call them lol) because of my PEG and my inability to bend certain ways but i am pleased with myself. The class was an hour and a half and i had to stop throughout because of tiredness or coughing. I also couldnt keep up with the breathing - asking me to hold my breath and breathing when told to is not comfortable and i thought the lady was trying to kill me at first but i did what i sure it will get easier and i will be able to do more as i keep going. We came straight home, i headed for the fridge, had a mars bar and then headed for the sofa and slept for a hour!! :) far is absolute madness!! My article in 'Love It' magazine came out today and i was woken up by my little bro, Danny at 8am waving the magazine in my face. He had gone out early to buy it, bless him :) I am pleased with the article and am happy that it highlighted CF and gave a link to the trust. The pics are ok - i didnt see them before and i was on iv's at the time so wasnt well - the joys of make-up!! xx Will write more on it later xx

x Lots of love x

Monday, 6 September 2010

x Looking good (apparently)!! x

I have actually had a great weekend even though I havent done anything spectacular.

I have been really cheered up and now feel positive that things are moving in the right direction because.....6 different people have commented on how well i look over the past few days....result!!

The first 2 were at the pub when i went on Saturday. 1 of them was a regular who i hadnt seen since last week and the 2nd was my daddy (even though i had seen him the day before lol). The best bit about these comments was...that i had no make-up on and my hair was scraped back as i had a wedding to go to that evening so hadnt bothered to get fully ready as i was saving it until that evening.

The next one was at the wedding reception that night. One of Scotts family members said I looked well. I havent seen him in months so i prob did look different but it was still nice of him to say so! It was Scott's cousins wedding and was a lovely evening and was really nice to see his family again. We left abit earlier then I wanted to as we had to be up early for football and I was hungry so stopped of for chippys!

The 4th person was Scotts mate. We got back from the wedding and 2 of his mates were staying over as they were all going footie the next day and we walked in from the wedding and he looked at me a few times. I saw him 2 weeks ago and since then he said that I had put on weight...he also said i was the only girl he could say that to without getting a punch in the face that made me laugh.

The last 2 people were family friends who live near me. I only saw them about a week ago but they still said i looked more like 'the old Soph' so that was nice to hear too! So a good weekend all round and its things like this that make me want to continue doing everything i can and more...i dont respond to shouting and people pushing me as i shut off and tend to go the opposite way!

Sunday is normally a chill out day but it was Scotts first match of the season so I dragged myself out of my pit early to go and watch. It was the furthest pitch away so that was my physio for the day!! It was a good match and I enjoy football but even though it wasnt bad weather, I was still cold so have brought myself a coat this morning which I love :)

x lots of love x

Thursday, 2 September 2010

x What do you do all day? x

I frigging hate this question!! Just because i dont work doesnt mean i sit in the chair and watch tv all day...the day goes so quick and most of it is spent doing CF stuff to be honest.

I get up at the latest half 9, cough because laying down all night means all the crap sits on my chest and then go downstairs. I have my tablets and morning nebuliser and then have breakfast. I then have another nebuliser (Dnase) which i have an hour before physio as it thins out the mucus so i can cough it out easier. While Im waiting for that hour I get dressed and ready (which if im not well or tired is a big effort in itself). Then comes the physio and lasts as long as it takes to bring up however much shit is on my chest. This kills me and tires me out so i have a rest for a while and then its lunchtime!!

I normally have 2 cooked meals a day so by the time i have cooked and eaten my lunch an hour has gone. Then i have a couple of hours in the afternoon to actually get 'normal' jobs done such as ironing, cleaning, shopping....and then everyone finishes work!! I have to have dinner by at least 7 otherwise i still feel really full up when i start my overnight feed. Normally start my feed by 11pm and this can finish by about 3 or 4 in the morning depending on how fast i have it running through. I never have a full, uninterrupted nights sleep.

So THAT's what I do all day....but i admit that when i do have a bad day or feel ill, i will take ages to do things and may spend longer sitting in a chair or in bed than i should because i physically have no energy to get up and that is not laziness!! That was not a rant though, its just people have asked me that question alot lately and make it sound like i do nothing when it takes alot to look after myself.

I got my new feed delivered on Tuesday and there is frigging loads of it!! I have a pretty new pink 4 drawer plastic storage system to put it in but it still doesnt all fit! Because the homecare people want to make things as difficult as possible, I get 200ml bottles of feed but need 1000ml overnight so I have been given 1000ml empty bottles and have to pour in 5 of the little bottles and then connect the tubes and hang it up. Why it cant come in 1 litre bottles already, i dont know! I had the first lot that same night, did it a bit slower than normal so i get used to it and it all went fine :) so i now get 2000 calories overnight...greedy bitch ;)

Yesterday I stopped in at my old work at the nursery and its all been decorated and moved round and looks lovely. I spent ages in there catching up with everyone and sooooo want to go back - i miss them all! We are hopefully all going to go out again soon which I really hope happens.

Scotts mummy and daddy have gone on holiday for a week to Eygpt so he has the house to hisself. I am attempting my feed at his for the first time as i was abit scared before because of the doggies but we have worked out a solution!! I packed up all my stuff last night (i had so much stuff it looked like i was moving) and went to his...i had everything...pump, tubes, syringes, pjs BUT not the actual feed! What a complete pleb! Definatly need to go back to being blonde ;)

x Lots of love x

Saturday, 28 August 2010

Im gonna be in a magazine!!

Im going to be in 'Love it' magazine!!

I was put forward to the mgazine because they were looking for someone who had had a tough time recently and they wanted to talk about weight issues. I had a car pick me and mummy up to take us up London to Holburn studios which was lovely and we was looking at all the pics of celebrities that had been there!! I had a hair and make up stylist and a clothes stylist. The photographer was also there and so was Kerry, the lady who was writing the article. I ended up wearing 4 different outfits - 2 daytime and 2 evening. The best one was the glamour one which was a gold sequin dress and they made my hair big so i felt like Tina Turner lol.

Had lots of pictures taken which i will get to keep on a disc once the magazine comes out - i couldnt have them yet because of damn copyright. I then sat down and spoke to Kerry. She asked all about my CF, how it has affected me and then spoke about the recent problems with my PEG. I had to have my iv's while there too so that shocked them abit i think!! We got home by 4 so it was a long day but fun...then came the task of removing the make-up. They have to put on loads so the camera picks it up, so 3 face wipes, 2 eye makeup remover wipes and countless amounts of washing my face later, most of the makeup was off!

Kerry rang me on Friday to read back the article and i think it sounded good as far as i can remember. It said what CF was but it was mainly focused on weight, diet and body image because it is a womans magazine!! It was a paragraph about what went wrong with my peg and then the rest was about what happened on the day of the shoot. I am so nervous about it coming out as i have never done anything like this before and i just hope i have promoted CF in a way that pleases most people. I tried my best!! Ive been told its out on September 9th xx

Finally finished iv's on friday too!! Had a amazing 'end of iv's' shower lol xx

x Lots of love x

Tuesday, 24 August 2010

In loving memory x

Just a short blog this time. Both to do with CF and passing away unfortunatly.

Firstly Monday 23rd marked a year ago that my close friend Vicky passed away. It seems like yesterday that Lance turned up on my doorstep early in the morning and gave me the news that broke my heart. Even as i write this i can feel myself getting teary. I miss her more and more everyday and still sleep with her picture looking over me on my bedroom wall. I wrote a special blog for her when she passed away so I said everything about how much i loved her then. Will love you always x

Tuesday was my other friend James' funeral. I regret not going to his funeral and I kind of knew i would...its just at the time I couldnt face it. I really hope that doesnt make me sound selfish but i honestly didnt think i could cope and didnt want to turn up on my own as I dont know his family or friends as i only spoke to him at the hospital or over emails.

I went to the cemetery later on that day and took some flowers to Vicky and to James as they are both at the same cemetery. I had pink roses for Vicky and white roses for James. I got absolutly soaked as it poured with rain but i needed to go...i proberly looked like a right wally with my hood up on my own in the rain but i dont care.

So a horrible few days of sadness but great memories keep the smile and the fight going. Im also very nervous for tomorrow but that is a blog post of its own and i dont want to let anyone know until its over.

x Lots of love x

Friday, 20 August 2010

Extra iv's and no pilates

How shit is pilates!! It was soooo boring and all the woman kept going on about was making sure my alignment was in neutral and for most of the session, i was lying on my back (which i dont like as its harder to breathe) and this is not my idea of exercise as it just made me sleepy!! A friend mentioned yoga instead and i was interested in it so me and mummy are looking at doing a class next week. I have found a boxfit video from years ago which is done by a boxer and we watched it first and it is ok to do. I did 10 minutes of it today and was quite tired so aim to do more and more as time goes on. Its quite fun actually :)

I have to have another week of iv's as my cough hasnt totally gone and i didnt want to risk coming off them and my cough getting worse...scott also has a cold so want to make sure i dont get that too so he is staying away from me as much as possible lol. I had my needle changed today as you can not have the port needle in for longer than 2 weeks due to risk of infection. While i was up the hospital we went on the ward to check my weight and i had put on even though i was on iv's so i now weigh 45.4kg thats up from 44.2kg 2 weeks ago :)

Me and Jen (the dietician) have decided to try changing my feed so i get more calories per bottle. At the moment i have 1500 calories per bottle but you can get 2000 calories bottles so i have said why not have the maximum amount if i can tolerate it!! I really want to reach my target weight by xmas which is 50kg...if i havent i am putting myself on 24 hour feed and staying in the chair on it until i am a blob ;)

Oh I have added a few new pages to my blog so take a look and any fellow CFer's feel free to send me any other traits that distingush us from the 'normal' person lol xx

x Lots of love x

Tuesday, 17 August 2010

Jobcentre fights :)

Im still on my iv's and they will finish on friday - woohoo!!

Last week i felt sick for a few days (so didnt have my feed) and had really bad headaches aswell...eventually i got a blocked nose so realised the headaches were due to that as it is sinus related and really hurts!! My nose is better now so need to make sure it stays off my chest. Im coughing alot less but there is still a cough there but its moving about so i need to focus on getting it out!

I have been busy doing lots of little jobs everyday and i do not just sit on my arse like many people think i do everyday. Really annoys me when people say that (even in a jokey way) as the people that really know me, know how hard it was for me to admit defeat and give up work...i have tried many avenues into part-time work but its not going to happen at the moment and its hard for me to accept so for people to comment doesnt help my feelings or the situation. Thank you very much!

This matter was not helped by the fact that I got a result from my medical assessment which put me in the 'work-related group' which means i have to attend meetings in order to get me back to work...if i dont attend them they will stop my money. I now have to appeal this decision in order to get put into the 'support group' which means i definatly can not work at this time which means more form filling. Which reminds me....

Last week mum dropped me off at the jobcentre to pick up the appeal leaflet. I had to go to the 2nd floor so i got in the lift. As the doors opened, a big fat chav woman was standing there with her buggy and practically tried to get in the lift before i had even got out, so i had to step over the buggy and she tutted. I heard her say to another man that was nearby "i dont know why some people just cant take the bloody stairs". Normally i would ignore it or just give a dirty look and moan to everyone about it later but i was in a bad mood anyway so turned back round and told her why i didnt flipping take the stairs. The security guard who was nearby shut the lift on her and then gave me the leaflet and walked me back to the lift to go out. Mummy found it really funny outside as its her company that watch over that jobcentre in CCTV so her work buddies may have heard about me on the radio :) Well people shouldnt be so ignorant should they...and even if she didnt have the buggy i bet she wouldnt have walked up the stairs, fat bitch. and mummy have signed ourselves up to some pilates based exercise classes and the first one is tomorrow morning. Im in a state of panic but will do my very best...will let you know how it goes!!

x Lots of love x

Tuesday, 10 August 2010

x Loving Lego x

Lets get the horrible bit out the way first....

I went up London with mummy to the medical assessment on thursday. I knew i would hate it as it makes me feel useless and depressed at having to admit that im not well and cant work even though i would love to. I just had to talk to the man and go through the form that i had filled out for them. He asked me to walk across the room and touch my toes but didnt make me do lung function as i was coughing lots. It was a tiring day after travelling there and back and now I have to wait to hear the result which will be in about 3 weeks.

Friday I had to wait for my iv delivery and then take my first dose with me up the hospital to start my iv's. Lance put the needle in my port and i got weighed and stayed the same. I wasnt happy but considering i had an infection and hadnt lost weight i suppose that was a good sign. Then came the news that one of my friends, James had died the previous day. I was shocked and didnt know what to do or say. I spoke to him alot about things and my mum also knew him from the gym. He died quite suddenly of an infection that he just couldnt fight back from....i cried all the way home :( will miss you James xx

So a very depressing 2 days in a row being swamped down with hospitals and CF so needed to get away from it all. A cuddle from Scott helped friday night and then saturday we decided to still go Legoland. I was going to pull out as I was tired from the busy days and just starting iv's makes you feel rubbish before you get better but I needed the day out to take my mind off things.

Legoland was great and we had a really good time. Yes we prob looked sad and maybe slightly peodophile-ish as we were there without a young child (well...i look like a young child so we may have got away with it lol) but it was worth it. Our new favourite thing is lego now and we spent saturday night building houses, cars and a fire engine - how exciting and sad are we?? Our plan is to buy a big lego set for when we go on holiday to York - possibly the Taj Mahal which is 6000 pieces and looks amazing!!

Sunday I had a well deserved day in and yesterday, i had to go hospital for blood tests on my tobi levels to make sure they werent too high. Normally Lance comes to the house to do them but he has decided to have 2 weeks holiday which i told him is just rude as its inconvient ;) My iv's are working as i spent most of yesterday sounding like a train and coughing up loads of crap so although its nasty, its a good sign!!

x Lots of love x

Wednesday, 4 August 2010

x Stubborn chest x

I have a cough. Bummer. Started some oral antibiotics on Friday and they still havent really helped so rang Lance to moan. Apparently i am now resistant to all oral antibiotics that treat the types of bugs that my chest grows so ivs are really the only option - so i start them Friday - which is shit :(

Had a great day out up London with my friend Steph and we ended up at Madame Tussauds which was really funny. I got barged by so many foreigners so decided to stick my elbows out and join in....when we got back to the car i had a parking fine for £120!!! I was parked on a yellow line which was infront of some bays. I had my disabled badge in the window and was only in there 2 hours (you are allowed to park on yellow lines with a disabled badge for 3 hours). I am now as I speak writing to contest it - bastards!! Then whilst driving home we spotted a man dressed as a clown on Regents Street so I told Steph to take a picture...then some man got in the way and the clown saw we was trying to take a picture so he ran at the car whilst we were stuck at traffic lights....I screamed my head off (which meant a massive coughing fit of course) and made everyone laugh and stare at times :)

I have also been abandoned by my boyfriend!! He has started a football team with his friends - in a proper league and everything and Scott is the manager so I didnt see him alot last week and at the start of this week as he had meetings and then a few training I sulked and he brought me mcdonalds breakfast and we are going Legoland on Saturday :)

Im pooping myself about tomorrow as I have a medical assessment for my Employment and Support benefit. I dont know why im nervous as im obviously too ill to work and am not claiming anything i shouldnt be but i hate the fact that im going to have to go into a room with some random doctor person who is going to judge me and state whether i am fit to work. Trust me if I had the choice between feeling ill everyday or working full-time, then I know what I would choose - no question!

Will let you know how I get on x

x Lots of love x

Wednesday, 28 July 2010

x Clinic news x

So I had a pretty successful clinic i suppose...well I didnt get moaned at so thats a good start ;)

The best news was my weight is up from 42.2kg to 44.2kg. Thats 2kg in 2 weeks wooohoooo!! I also missed a few feeds last week due to eating my main meals too late so feeling too sick and full up to start a feed so Im just going to have to plan times abit better for the next 2 weeks. My lung function stayed the same which is ok seeing as I am abit coughy so am going to work on this!

I was given a perscription for 2 nebulisers to try. I had spoken to Lance before about alternating my nebulised antibiotics so that it would help and be more effective at attacking different bugs in my chest...i tried tobi before and didnt like it so there is a weaker version called Bramitol (think thats it). I will have this for a month and then switch to Colomycin nebs for the next month. It should be next week that I go to have my first dose in hospital incase of any reactions. The other nebuliser i normally just have when im ill in hospital but they have given me some to keep at home. I only have it if im feeling wheezy as it opens your airways and is called Salbutomol.

Hope you all like my new blog layout too...took me bloody ages and involved lots of shouting and swearing at the computer and many moaning emails to a couple of other blog users for help...thank you for your help Megan and Tori :) I think it turned out quite well.

x Lots of love x

Sunday, 25 July 2010

X Another busy week and another holiday x

First off with the good news (there is some!! Shock horror lol): I have finally, after 6 months, been paid money for my Employment and Support Allowance. Bloody ridiculous how hard and how much proof i had to send them in order to get any money!! The next step is a medical assessment all the way up london for them to assess my illness...god knows how they are going to do nervous even though it is a genuine claim!!

Other good news is that we have booked another holiday. Scott paid for it for my birthday and we booked it on friday. We are off up north to York for a week at the end of October. We are staying in a lodge which is surronded by a big lake and the doggies are coming too :) The only thing we have to sort out for them is travel pills for Buster as he gets bad travel sickness - bless him. I cant bloody wait!!

Im still reasonably well too. Am still eating fine and doing my feed so I better have put on weight on Tuesday at clinic. Mum mentioned that she thinks I have as u cant see the portacath tube in my neck as much now (this is our weight loss judge lol). I am on a 5 day course of steriods as I have a bit of a cough but its more wheezy than anything. I havent been sleeping hardly these last few days so I think it may be linked to the steriods.

I am pissed off that I didnt make it to the gym last week :(
I was suffering with 'girly' week at the start of the week which is really painful and heavy so I sulked at home, then I have been so busy sorting lots of things out, and then I was going to go after my feed was delivered but it didnt come until 3pm and its normally here by 11am so that was a wasted day! I WILL go this week!!

Nothing else to report I dont think. Will let you know how clinic goes on tuesday.

x Lots of love x

Sunday, 18 July 2010

x More shopping and a trip to the gym x

I took a big step for me and went to the gym for the first time in years on Thursday!! I went in the day by myself and was so nervous before that I stood outside for 5 minutes and felt ill with panic. I used to enjoy the gym with my ipod on but was so worried about breathing and coughing but I need to start somewhere! Adding up all the time spent on the machines it came to 30 minutes which I was pleased with. It doesnt sound like much to some people reading this, but under the circumstances I am pleased and so was my mummy and Scott so thats all I care about.

My breathing actually wasnt too bad and I may have been able to do more if it wasnt for my useless arms and legs which gave up on me! My limbs seized up straight away and I didnt think I would be able to drive home. Scott was home from work so I stopped off there to see him and he was watching a film upstairs. He had to push me up the stairs to help me get up there - how lovely lol :)

I plan on going twice next week - hopefully tuesday and friday - and I have made a list of what I did and hopefully I can do more and more each time and track my progress. Watch this space!!

Friday was another shopping day with mummy to get some other bits and pieces that we couldnt get in Lakeside on my birthday. It was mostly successful so I was happy and then I gave myself a night off my overnight feed so I could stay at Scotts. In the morning, we went to Scott's bosses house as he has 6 miniture sheep and they each had a baby just before we went on holiday (2 of the babies died though) so we went to see them. He lives in a expensive area where the houses are massive and little country villages. It was a hot day aswell so it was a nice trip out.

Off to write a list of more things I have to do starting tomorrow - nothing that exciting and alot of them are bloody phonecalls!!

x Lots of love x

Wednesday, 14 July 2010

x Happy birthday to me x

I made it to 22!!

Sorry for saying that but its true - after the last few months I really didnt think I would make it at certain points! Anyway....

I had a great day. Didnt do alot as its not a big birthday or anything and no-one has any money lol...i got a few little pressies to open (one was scar serum lol) but I had asked for money for my 'main' pressie. So Dad gave me money and so did mummy. Scott is taking me on holiday up to Yorkshire in October with the doggies for my birthday. Its to stay in these lovely modern log cabins which have outside, heated jacuzzi things - cant wait!!

Me and mummy spent the day shopping as I havent been properly for months and havent brought any new clothes either (for obvious reasons - see previous blogs). This resulted in a 7 hour shop in Lakeside!! We got there at 1 and left at 8pm only stopping for abit of dinner for 20 minutes. I was really proud of myself and so was mummy as I wouldnt have been able to do it weeks ago. I was absolutly shattered though but i got some great clothes and other goodies :)

Tuesday was hospital check-up and everything went well, I think! My lung function and weight was the same ( 20% and 42.5kg). Now I dont need telling that both of these aint great but now that all the problems are out the way (i hope) I can work really hard on improving both of these. My chest is abit crackly but other than that doctor seemed pleased with how I have coped. I had mild panic attack when Lance and my dietician Jen turned my PEG button round. I know its not a big thing and no it didnt hurt but things like that freak me out and I was worried there would be something wrong. Lance also showed me how to check the water in the PEG balloon. He had shown me when I had it changed to the button but I was so high on sedation I dont remember!! For those who dont know - the PEG button is held in place by a balloon filled with water. Its filled with 5ml and you check it weekly to make sure its still filled up. If its not, then you put more water in. Just make sure the balloon hasnt burst (which can happen due to wear and tear or stomach acid) or the PEG tube can just fall out. I am terrified of this happening - surprise, surprise!!

Tuesday night I went out for a birthday meal with Daddy, his partner Lisa and Scott which was lovely and filling.

The hard work starts over the next few days in starting my fitness going. It is soooo hard at first to get going as it can be painful, makes me tired and breathless and cough up crap but hopefully after a while it will start to get easier, i will be able to do more and more and of course hope to see the benefits! Wish me luck as i will need it - im nervous!!

x Lots of love x

Wednesday, 7 July 2010

x Holiday in Malaga x

Im home and only slightly suntanned :( I dont tan - i try my best but, because I am fair, it means i go a slightly darker version of pale or i just burn!!

The holiday was great - lovely to relax around the villa and pool with friends. In the days, we didnt really do much other than spend it in the villa. We had the tv, music, the pool, my book, card games, sunbathing and eating :) Most of the nights, we stayed in but me and Scott joined the 'single' boys on 2 of their nights out which was good!! We went out for dinner most nights except for a bbq we had so I have done well with eating!

I am finally starting to feel more normal again. Its sooooo nice not to have the tube hanging out of me, being able to wear most of my clothes, even though I am not completely happy with how I look as im still underweight. No worries though, my appetite is good and I have started doing my overnight feeds since being home, so onwards and upwards. I am nervous about what my lung function will be at the next clinic though. I havent done it since before my operation in April and im worried all the problems ive had have affected it. However, I am now in a good position to start hitting the exercise again and WILL go to the gym next week!!

I am a positive little person at the moment and just really hope that the last few shitty months are behind me and the 2nd half of the year is a better one. This will start tomorrow with me taking a trip to the hairdressers with mummy and planning my birthday celebrations - yay!!

x Lots of love x

Thursday, 24 June 2010

x Dramas!! x

Last tuesday i went to clinic and had put on weight so am now nearly 43kg :) I had my iv needle changed as i was having an extra week of ivs. The next few days after i started getting temperatures, feeling tired and just generally shitty! Saturday night I got back from Scotts to do my night time ivs and mum went on night work. 5 minutes after doing them i felt breathless and was struggling....i left it (as usual) for a few hours but it got worse and i couldnt breathe. My dad came down and we rang an ambulance. At the hospital I was given some medicine stuff (dont ask what it was as i wasnt paying attention) and given lots of oxygen. Normally if im in hospital with a chest infection they put me on 2 litres of oxygen, well at that point i was on 10!! They kept me in for a few hours to make sure i was back to normal and then got home at 6am. Turns out i had an allergic reaction to one of my ivs that i was on - wont be having that again - scary stuff!

On the thursday before this me and Steph went on a tour of the Chelsea football stadium which i brought her for xmas. It was a lovely day and we had a good time but i cant tell you how bloody knackered i was when i got home. There were soooooo many stairs and I was struggling alot but i did it.

The biggest news came yesterday when I went to the hospital with daddy to have my tube taken out and my new button put in. I no longer have a willy!! I was so nervous after everything that had happened previously so i hadnt eaten much. When i got there, lance gave me some oral sedation and by the time he got the stuff ready he said i was out of it lol...i dont remember any of it thank god. Now im off to start packing as im off on holiday tomorrow :D Spain - here we come!! See you all in a week

x Lots of love x

Sunday, 13 June 2010

x Stronger and stronger x

Im getting better...i think!

I have been on iv's for 1 and half weeks now as my chest was bad. Proberly after all the goings-on from the last month and i couldnt do hardly any be honest just getting up the stairs when i needed the loo was physio! My cough is dry now and much better and i no longer sound like a train :) I havent had oxygen for the past few days either!! My appetite has come back big time and i am eating everything in sight and my feeds are going well and im having the whole bottle overnight which is 1500 calories. I will be a fat blob before i know it (hopefully). The only thing now is this bastard tube hanging out of my stomach which needs to be changed to a button sooooooon! Its driving me mad - it hurts every now and then, leaks, and i cant wear certain things as it shows up and i have to tuck it into my trousers. Im hoping its changed this week coming but im soooo nervous.

I havent done much to really talk about to be honest. Last week I went shopping twice with mummy as it was my little brothers 18th birthday on friday. I stayed round Scotts for the first time in ages last night and it was lovely to wake up together and have mcdonalds breakfast :) Today i have alot more energy so plan to sort out most of my room and actually do some ironing as i have no clothes to wear!!

Oh and im starting to get excited about my holiday which is in 2 weeks!! The only thing is travel insurance which i may have to risk skipping as its ridiculous amounts of money which i cant afford. The cheapest so far is £429 for a week in Spain - am i not allowed on holiday without being punished for having an illness??

x Lots of love x

Sunday, 6 June 2010

x A VERY bad month x

Im going to try and keep this post as short as possible as im still tired but need to tell you all whats been happening as it has been over a month now!

I went down to have my PEG taken out and swapped over on tuesday 27th april. This was supposed to be a quick 30 minute procedure - however - i woke up in intensive care the next day. Turns out, they tried to remove my peg button but they couldnt find it as my stomach had grown over it so much it was embedded in my abdomenal wall. I had to be rushed to theatre where they cut open my belly to get it out, had to close up the peg hole and make a new hole a couple of inches higher. I couldnt have a button put in straight away as it is a different type they are using so i have a long tube hanging out instead.

Now to wake up in intensive care the next day on a ventilator scared the shit out of me and i had to spell out on a word board what i wanted to say as i couldnt talk because of the tubes down my throat. I got them to take the tubes out within an hour and promptly broke down in panic. I also had 2 big lines on my hands and a line going into my artery on my wrist...oh and a catheter as i couldnt get up to go to the toilet. I managed to get back up to my usual ward the next day and was home after about a week i think.

Since the operation, i have had a sicky feeling. Its nausea but with my heart beating really fast all the time...sounds silly and is hard to explain but it meant that i couldnt really eat meals or have lots of feed as i felt sick. It seemed to get worse and worse until i started actually being sick about once a day and the sicky feeling got worse and lasted allday. I went in through A+E and spent another week in hospital but no one could understand what was making me sick...i had a bit of an infection in my PEG site as it was healing so had oral antibiotics and they just kept throwing loads of antisickness tablets at me. This got me more frustrated as I wanted to sort out why i was feeling sick and not just hide the feling. I went home but after a few days I was really bad. I wasnt hardly eating at all, had the sick feeling all the time and was being sick more regularly. The final straw for me and mum was on a thursday night i was sick 3 times and the last time was brown sludge. My PEG site had also soaked my top and had brown stains.

I was rushed in on friday morning by Lance and mum and dad came with me. I went in my pjs and was wheelchaired up to the ward as i was too weak and tired to walk. Lance had arranged for me to see the top man in the gastro team (stomach doctors lol) at 2pm so I had my port needle put in, bloods taken and then waited. The gastro man said they would need to have a look into my stomach with a camera down my throat (which i had asked for in the week that i was in hospital) but because it was an emergency, i could only be sedated. Previously i had always been under a general anasthetic when having anything done so I panicked. As soon as the sedation wore off i felt fine - the sick feeling had gone and i havent had antisickness tablets since. Turns out my tube had gone through my stomach and into my bowel so they had to deflate the balloon inside and pull it out of my bowel and into the correct position in my stomach so now my tube is even longer!! I went home the next day.

This month has pushed me to my limits emotionally and I am going to be honest, I have never wanted to die more than several times during the last month. I hope its all behind me now and will try to remain positive but it has not been easy and so i hope you will all forgive me if i havent been around much but that was why.

x Lots of love x

Monday, 19 April 2010

x Im still here!!! x

God i havent been on here in ages....last week was a 'nothing' week really as my PEG is hurting so i basically sat there and moaned alot while swallowing painkillers and bothering the hospital about sorting something out!! It worked and i am on the surgery list for 27th April which is still another few weeks away bt at least something is happening!! My chest is still ok and im eating ok still.

Not really much more has happened to me that i can think off. Last week was my doggies 2nd birthday :) and Scott managed to get through on the phone to the PCSO recruitment line and he has an application form to join up. I really hope he gets past the first stage and eventually gets it as he wants it so much...i think he is perfect for the job, but i suppose i am biased!!

I havent really wrote much in this blog or 2 reasons:
1 - because my laptop has decided to break so i have nicked my brothers one while he is at college but its annoying me
2 - i have to go out to do some errands!! I have to go put a prescription in at the doctors, take my laptop to a man in a shop and cry until he fixes it, and then book tickets for the train to Malaga for our holiday in June :) Yes, we are getting a train because i DONT fly....i am petrified and refuse to put myself through the stress!

x Lots of love x

Monday, 5 April 2010

x What a difference a day makes!! x

I wish i could scream my head off...but my useless lungs will not let me!!

I have come to the conclusion that I am cursed or someone up there really hates me!! If you're wondering why I am moaning (yet again) then i will kindly explain...Tuesday night (after writing my last blog entry) I went upstairs to go to bed and start feed. My PEG had been turned in clinic that day and was abit sore before then and was being pulled inwards every time I stood up. Anyway I connected the tube and went to flush it through with water. It was a bit stiff so i pushed it more and it gave way and the water all came out the sides of my PEG from the hole in my belly...panic!! Lots of crying then followed along with cuddles from mummy and my brother danny.

The next day I spoke to Lance and Jen and they said it sounds like my stomach has grown over the inside of my PEG and it will have to be taken out and replaced with one with a water balloon basically...its blocked and fucked!! I will go under a general again so they can look down inside my stomach to check what is going on, then cut away the other PEG and replace the new one. It wont hurt much as it is using the same hole as before so hopefully, if everything goes ok, i will only have to be in hospital for a few days. Luckily I am still feeling 'well' and am eating fine. The PEG is pulling from the inside so it hurts and i am back to walking like an old lady, all bent over which is giving me backache!!

I have had a good few days though and am still happy. On thursday, me and mummy went shopping at Lakeside and brought lots of things :) and had a great time. All weekend was spent with Scott apart from when I went to Daddys pub on saturday to watch Chelsea beat Man united...was a great day!! Last night (Sunday), me, mummy, danny and scott went to see Clash of the Titans in 3d. It was a good film actually although I got told off for being immature the film, the city they lived in was called Argos and when they talked about it, it sounded like they were off shopping in Argos, so I laughed and Scott told me to shut up...well...i found it amusing :)

Today, I have an amazing bellyache! Part is a typical CF bellyache, part is the PEG and part is because it is girl week!! Will find out tomorrow when my PEG will be changed and they are hoping to do it this week, so my next blog may be from hospital!! Fun times!!

x Lots of love x

Tuesday, 30 March 2010

x Hopefully on the up?? x

Last week i didnt do too much to shout about really...just the usual treatments, physio...blah,blah,blah...i did go shopping as it was my mate's birthday so she needed lots of presents and i also popped into the nursery to see looks lovely as they have done it all up...i got upset when i left as i miss it so much (the job and the people).

Monday I went for lunch with steph and then had an appointment at the jobcentre for a interview about applying for ESA - employment and support benefit. That was a waste of time as i just basically repeated what i had wrote on the form and told them that i sent of the medical questionnaire last week. I have to get a letter from the hospital saying why i cant work and then wait to hear from the jobcentre again. How the hell to people cheat the benefit people when i have to fight this hard for a geniuine claim!!

Today was hospital. Lets start with the good lung function has gone up....yyyaaaaaayyyyy!!!! Only a small increase from 20 - 24% but still in the right direction and this makes me want to work even harder. Weight stayed the same but they were happy with that and i did have an amazing bellyache yesterday so dont think that helped. The only worrying part was my PEG. It has to be turned once a week so when Lance turned it, it turned all the way round but then hurt abit and sprung back. Apparantly this means that there is an obstruction and that may mean my stomach has started to grow over the peg. If this totally happens, then the peg will have to be changed. Joy! Therefore, panic has started to set trying hard not to think about it but watch this space :(

All in all, i am happy though! Have more energy and am up and about everyday wanting to do stuff, even if it is just cleaning the house lol. Not much planned for this week except more exercise!! Go me!!

x Lots of love x

Sunday, 21 March 2010

x Our little holiday x

Me and Scott got a cheap holiday away to Dymchurch and have just got back so I will tell you about it!

The holiday was from Monday to Friday but Scotts dad paid for us to stay in a Premier Inn in Hastings for the weekend. We got there at about 6pm saturday and went straight out to dinner and then had move the whole room around (dunno if that was allowed lol) because i had to be near a plug socket so i could have my overnight feed. Scott also had to get up at 6am to go out to reception to get my iv's out of the fridge - he is great :) Sunday we went into Hastings and looked around the shops and arcade then came back. We then read the papers, watched television, went out for dinner and then settled down for the night to watch 'Snakes on a plane'....this film is definatly not reccommended as its highly poop!

Monday we had to be out the room by midday and couldnt get in the caravan until 4pm so we headed off to a town nearby the site and found a Tescos and stocked up on food for the caravan. There was a river running past the back of Tescos so we took some bread and feed the ducks but got chased by seagulls too (now, i say chased, but i dont run so what i really did was sit there and scream lol).

Tuesday we went to Port Lymphe which is a big wildlife park. We got a safari bus to take us round to see most of the animals or i wouldnt have managed it and then they told us the gorillas were being fed. We walked down a big hill to the bottom of the park, watched the gorillas and then i realised i had to get back up the hill to go home. Oh dear!! God knows what other people must of thought of me and Scott...1st Scott was pulling me up the hill, then we walked up it sideways so it didnt feel like you was walking up a hill, and finally Scott went behind me and pushed me up...hahaha! Needless to say, I was absolutly shattered but was proud of myself! That night, my bloody feed machine kept beeping for no reason and nothing was wrong. I rang the helpline and they said it must be the pump and that they would send another one out, to which, i had to reply that i wasnt at home and that i was in a caravan in Dymchurch. The pump got delivered the next morning to reception and worked fine after that, but how bloody embarassing!!!

Wednesday was rest day! We ate lots, watched dvds and read books and magazines and then that night, we drove to the cinema to watch 'The Bounty Hunter' which was good :) For our last day, Thursday, we went into Ashford to a shopping centre and had a nice time around there and then spent the night watching tv and packing. Friday we left by 10am and got breakfast on the way home and before I went home, I had to go hospital.

All was well at the hospital. My sats were back to my normal of 92/93, and i had put on 2kg in a week so now weigh 45.2kg :) My lung function hadnt gone up which i wasnt happy with but it WILL go up...just wait and see!

So after the toughness of the last month, it was a great break away and me and Scott didnt kill each other so thats a good sign! I wouldnt go back to that caravan site, but it was nice to have experienced it, and it just shows that if you love someone that much, it doesnt matter where you are, you can still laugh and have a good time.

x Lots of love x

Friday, 19 March 2010

x A month later.... x

Finally, after just over a month, I am home!!

I was not allowed home for ages!!! Bloody trapped air!! I felt fine but my sats were saying another thing. A 'normal' persons sats are about 97-100. Mine, when feeling well sit at about 92. The machine beeps at you telling you that oxygen is needed at 89. Mine was ranging from 85 and even dropped to 74 when waking up!!! How ridiculous and scary - no-one could understand it or give me any answers which made it more frustrating. The last week, I cried alot and felt so fed up. I tried really hard but thankfully, the air started to show signs of going down and by my discharge, my sats were, at their lowest 88.

I went home with oxygen (just incase)and ready to start weight gain and keep exercising!! Got home and went straight to bed as it was 10pm and went to set up the feed and they had sent the wrong tubes. The tubes i got were for a different pump so we had to ring the emergency helpline who eventually delivered at 3am!! What a great 1st night home!!

As soon as i got up, i booked my hair in and also unpacked my hospital bags and then packed them again because me and Scott managed to get a cheap holiday and we were leaving in a few days!!

Monday, 1 March 2010

x Still here x

3 weeks has gone and today I should be packing up my stuff and going home...that is not happening :(

Im fed up, still in mild pain, lonely and want to go home. I cant be bothered to write a full blog so will just pinpoint the main goings on. Well I did it and i had my peg fitted which is a tube into your stomach so that you can be fed overnight inorder to boost the amount of calories i have. Everything went to plan and after 2 days i finally plucked up the courage to look at it and touch it :)

There was a problem because my body inbetween my bottom of my lungs and stomach, lots of air had been trapped and they were worried that it was a leak from somewhere but it turns out it was just trapped from where they put the peg in so no more worries. The pain is still there after a week and dont even get me started on having to cough - it feels like someone is knifing me in the stomach each time. Bring on the painkillers!!

Because of the trapped air and i had a small lot of crap stuck in my lungs, my sats were dropping to 84 off the oxygen but the air is going down and i managed to shift some cap and today, i came off the oxygen :) yay!!! These are the reasons why i havent been allowed to go home yet. Even worse, is that the hospital is locked down with the norovirus so all visitors are banned, so im highly bored, lonely and fed up. Hopefully i will make it home in the next few days and will write to you all again soon and include pics of my new wound :)

If you're reading this, i just want to say thanks to my CF mates who helped put my mind at ease about having this done as i was terrified and just hope i manage to cope when i get home xx

x Lots of love x

Monday, 15 February 2010

x Nice trip to A+E x

God...Havent been on in ages and wont bore you with another miserable blog so will keep it as short as possible!!

Came to A+E on saturday lunchtime as I hadnt been able to move off the chair since getting up friday morning. Was not hungry at all and literally force feeding myself, coughing up lots of gunk and had no energy to even go upstairs to the toilet or my room - thats why me and scott slept on the living room floor friday night :)
Was in A+E for hours and then transferred up to my usual ward. All week, I didnt eat a full meal even though i have really tried, so this has affected my weight, and i wasnt able to get up out of bed until friday. Felt quite scared as it is a bad infection and my breathing was shit.

This weekend was much better and I have picked up quite abit and even got to go home with portable oxygen to spend a few hours with Scott and the doggies on valentines day but was knackered by the time i got back. We made our own valentines day cards which was lovely and meant alot. Obviously nothing else much has happened. Its a week until my PEG operation and im starting to poop myself but will hopeully fill you in before then.

x Lots of love x

Thursday, 4 February 2010

x Ouchy!! x

Ouch, ouch ouch!!!
I am in pain so am pissed off really!

Friday night I suddenly developed a full blown blocked nose when I came home from the theatre so didnt sleep at all. Saturday morning I came down and slept on the sofa and just sat around in a bit of a daze really watching tv and reading. Saturday night I made a big effort to have a shower and go for a meal and to the pictures with Scott and his friend Danny and girlfriend Debbie. We went nandos and I had a arguement as they had ran out of butter for my corn on the cob - knobs! - and then we saw MEl Gibsons new film Edge of Darkness which was good but made me jump a few times!! It was a nice relaxing night but just wish i didnt feel like death!! Sunday was the same - just resting and went up dads pub and nearly fell asleep so had to go home :)

Monday morning I woke up with a very bad pain at the bottom of my left lung. Normally if i have been coughing alot, this is where i would pull a muscle so thats what I thought it was. However, by the night, it felt different, because when i coughed, the bottom of the lung was rattling and was really sore so i had trouble sleeping again. Tuesday morning, it was worse and i was close to tears, so spoke to Lance and he told me to come hospital for xrays and check-up.

Anyway, turns out i have pleurisy!! I am abit relieved as both me and Lance admitted we were worried it was a collapsed lung but god does this hurt!! I am now dosed up on strong painkillers, an anti-inflamitry, and oral antibiotics just in case. My cough is terrible as i havent been able to cough properly and clear my chest as it was too painful so now i sound like a train :)

In happier news - Legally blonde was great and really funny. The dogs in it were sooo cute and i so need a bulldog!! I have always loved them but this has just made me love them even more! Me and Scott arent going to buy pressies for valentines day as its so hard to buy for boys :/ so we are making each other cards!! Haha! Wish me luck (and wish Scott luck - he is not exactly the arts and crafts type lol)!!

x Lots of love x

Tuesday, 26 January 2010

x My date is set! x

23rd February is my PEG date so 3 weeks of worrying will now start! However, I am kind of glad its been set but i just want to worrying to be over and the road to recovery and fatness to begin!

Clinic was poop - I wasnt nervous about it as i am feeling ok chestwise although I have had a few bad bellyaches over the past couple of weeks. My weight was down to 44kg even though ive been eating *screams* and dont even get me started on my lung function!! I did 2 blows and they both didnt read on the machine for some reason...the 3rd one registered and i did a 4th one for luck but that didnt read either. So i had one result which read 21% but it was my 3rd blow and i was knackered so im not believing it :) Doctor said my chest sounded fine - yay - and then we spoke more about the PEG.

I HATE diabetes!!! I havent been told much about it so dont know how to manage it that well and im a complicated case at the moment apparantly - fantastic!! So, I have a appointment next week with the diabetes team and have to do loads of blood sugar tests everyday and write down everything I eat and the portions.

In everyday news, I have applied for Employment support which is the new benefit instead of income support, which took an hour on the phone and now waiting for them to send me stuff through the post. I really didnt want to apply as it makes me feel worse - im 21 years old and applying for benefits because im too ill to work - thats crap! Hope im only on it for a little while!!

The rest of my week has consisted of eating, lots of ironing (as my ironing draw collapsed under the weight of clothes - opps), de-cluttering my room, and sorting out my medicine cupboard. Now, as other CF sufferers know - this job took bloody hours!! Cant think of anything else to say at the moment except im excited about friday as me and my best friend Steph are off to see Legally Blonde at the theatre :) Thats twice in 1 month that ive been to the theatre now - im getting posh ;)

x Lots of love x