Wednesday, 30 December 2009
Managed to come home on Monday 21st as planned as was looking forward to seeing everyone from home but then the snow decided to show itself!! No-one could move or come down apart from my fabulous boyfriend who walked down here with the doggies!! The run up to xmas day was made as i had to wrap everything, check everything that i had ordered online from hospital and get the last little bits and pieces from shops.
Christmas day was great!! Was spoilt by mummy, daddy, scott and his family. Scott picked me up from my house at 11am (still couldnt drive as i was too sore and stiff) and we went to his and came back to mine by 1pm. We had xmas dinner mmmmmmm.... and then went up to see Daddy and spent xmas evening in the pub!! How great :) By boxing day, i was knackered and did absolutly nothing!!!
Since leaving hospital which is just over a week ago now, i have already been coughing alot and its really got me down. Sometimes you just think 'give me a break!!'. I had clinic yesterday anyway so went along sulking and not looking forward to what they were going to say. Turns out it wasnt too bad - my weight was the same which i was happy with considering how shit i was feeling and i didnt do lung function. The coughing is due to when the top bit of my left lung had collapsed and now it had expanded back, it was still clogged up from before - great!! Got some oral antibiotics to help so am really hoping they work. Lance took the rest of the plasters off from over the stitches and they look fine - im actually pleased!!
Also on a CF matter, I spent most of Sunday night quite teary.... A girl called Jessica Wales, 20 years old, has been waiting for a lung transplant for 4 years. She was taken really ill just before xmas and spent it in hospital. On sunday, it was said that she had taken a turn for the worse and people were really worried she wouldnt make it through the night. Just before i went to bed, i looked at some facebook statuses on my phone and one of them said that she was having a transplant! I went to get the laptop and had a look for myself and it was true. She had been called in the evening to say that there were some lungs for her and it turns out they were a match and she was currently in theatre! As i write this, she is in intensive care but stable. I dont even know her that well but have followed her story but it still made me teary and it just shows you, never give up and miracles can sometimes really happen.
I am looking forward to New Years as me and Scott (and hopefully my best mate Steph and her bf) are off to Canterbury to dance!! Will let you know how it goes!!
x Lots of love x
Sunday, 20 December 2009
Me waking up looking very attractive!
I had an xray as soon as i came back and it showed that i had a numothorax, which is trapped air in my lung as far as i have been told. It is small so i have been put on loads of oxygen to try and blast it out. Highly annoying as its a mask with a big tube so all weekend i have looked quite like a baby elephant, a smelly one at that as it is hard to wash at the moment.The next day was very sore and i slept alot because of the painkillers and the swelling and bruising had began to show. Now it is a few days after the operation and im doing ok. Still sleeping alot which is annoying but ive stopped the painkillers and am trying to manage on just regular paracetamol. Still sore and stiff but thats to be expected for a while. Am going home tomorrow so cannot wait but am NOT looking forward to seeing Lance - he is going to take off the dressings and take the needle out my port and i have already been warned that it will hurt!!
Me with my trunk and port which is covered
Am glad most of it is over now and surely (in the words of D: Ream) things can only get better!! Thanks to everyone for your messages and to some CF people who have given me much needed advice!
Tuesday, 15 December 2009
Not really much to say as im still in hospital and nothing exciting has happened apart from my appetite is back fullblown and i am addicted to nandos (we have been 3 times in a week!!). Bearing in mind i have been eating lots my weight has stayed roughly the same - what more can i do!!! NO i dont need a peg as i am eating and wanting to eat and if i just have feed on top of that it will just make me sick. I personally think it has something to do with the diabetes cause since being diagnosed i have lost weight and the insulin - i was told - is supposed to help with the weight. Im only having it with my main meal but my sugars are up and down so it needs to be sorted. I had a reading of 2.8 the other night so they wouldnt let me sleep until it went up incase i went into a coma. After many jelly babies and nasty glucose tablets, 2 hours later i was allowed to sleep!! Fun times!
On the other hand, my lung function has gone up alittle. To be honest, it wasnt an earthshattering amount but its going in the right direction. Ive been going to the little hospital gym in the afternoons which involves me walking there, doing 7 minutes on the bike and walking back. Yay me!! :) Id just got back from the gym when i did lung function so i reckon it could have been more if i wasnt as tired!!
Next thing is my operation on thursday and im pooping myself....sometimes im fine but then sometimes i panic. Hope it goes well and im not too bad afterwards...keep me in your thoughts please!!! Speak to u all once im home!! xxx
Sunday, 6 December 2009
Without that weekend being hard enough, my chest got worse and i was getting more and more breathless but was due to come into hospital on the 7th anyway. Icouldnt hold on the extra week as it would have been spent just sitting at home anyway so, with alittle pushing from mummy and lance, I came in on Monday. After a week of ivs im starting to feel human again....i havent been online much as its so busy in hospital and the ivs make me sick before i get better but my chest is clearer so its going the right way.
This weekend I managed to meet up with the girlies from work to have our xmas meal. I cant say how nice it was to see them all again and how much i miss them all. Also dragged myself out of bed early this morning (sunday) to complete a 5km walk for Cystic Fibrosis around Greenwich Park. We did it in an hour and a half with the aid of my wheelchair!! It was brilliant and so funny to see hundreds of santas. The weather was terrible when i woke up but by the time we got there it had stopped raining and the sun actually managed to pop out!! Pictures and videos to come soon.
I think thats it for now as im tired and off to find something to eat in this place...just want to send lots of love to some other CF girls who are having a tough time at the moment too...lots of love Gemma, Victoria and Jenni!!!!
Thursday, 26 November 2009
I have got to go into hospital for the usual iv's about 7th December to make sure my chest is clear and then my operation is 17th December at 7.30 in the morning. 'Normal' people may normally be allowed to go home the same day as the operation but because of the CF it will proberly be a few days until im home but as long as everything goes ok and im home for xmas i cant complain. The assessment finished about half 11 and clinic wasnt until 2 so we went into lewisham to get some lunch and have a look around the shops. It was while i was walking around there that i got the horrible news that another friend had lost their life to CF. Joanne was 25 years old and after a battle to put on weight finally got put on the transplant list...but she never got her call and died at 5.30am.
Clinic was poop. I lost a little bit of weight but i was on antibiotics and had been sick the week before so it werent a bloody surprise but i still got moaned at!! I am now 45kg. Lung function was the same which i was happy with because my chest was abit shitty and, by this point, i was knackered and had no blow in me!! I spoke to the doctor who was fine and mum mentioned about my tiredness and motivation...he said that this happens to many people....they finish uni and then have nothing to do and it can be quite depressing...which i believe has happened to me!
I am NOT depressed but if things stay like they are, i can see a possibility of that happening. I am fed up of my days just consisting of CF related stuff and staying indoors until everyone gets home from work. I have nothing to look forward to and when people ask "what are you doing today?" i have nothing much to say, so come up with stupid things like "im doing my room" or "having a shower". I told this to mum and the doctor whilst crying but they both understood.
I understand that i need a break to concentrate on my health and getting better but i need to do something. I have applied for a job at a school doing resource work which is 10 hours a week so that is managable and i sooooo hope i get it. I hated giving up the nursery which was perfect hours for me but not possible because of the germs. I hate not doing anything - I feel useless, bored, and i believe it sometimes makes me feel worse - i have always said i will never let CF take over my life, it will just be a part of it, but now i feel like it IS my life and i dont want that. I am trying my best but if i do have a bad day where i dont want to do as much exercise, then let me have a day off - everyone else has bad days but when i do, i get moaned at.
Infact there was a study done by one hospital which was written about in the CF Trust magazine which challenged the staff that worked with CF patients to live 6 weeks as a CF patient and do all the treatments, physio, tablets, diet that is involved. It showed that by the end of 6 weeks, only 50% of the CF stuff was complyed with and thats without them having the dodgy lungs, stomach problems and tiredness that comes with CF. So if professionals cant do it 24/7, please dont expect us to - we are only human!!
X Lots of love x
Sunday, 22 November 2009
Saturday we went out to a 21st birthday which was good even though i had to put up with watching a stripper (did i mention she was 75 years old and her boobs touched the floor) but i was just thankful she didnt get her fanny out lol!!! By sunday night my throat felt like i had swallowed tablets and that they were stuck and this feeling continued until wednesday night. I was still able to eat and drink but i had a constant 'sicky' feeling but wasnt actually sick.
Wednesday night i had to come home from Scotts as i couldnt sleep due to girly pains and the sicky feeling so went home. Mum brought up painkillers and hot water bottle and then i promptly threw up everywhere!! Turns out the antibiotics had made me feel ill and the sicky feeling was caused by ulcers in my throat also caused by the antibiotics. Lance got me some different ones so lets hope they work!!
Last night was really good...went out for my mate Sirin's birthday at the cactus pit in blackheath which is a restaurant and then has a club underneath. I had a cheeseburger and chips and then walked downstairs and couldnt dance straight away as i knew i would cough and then throw it all back up again! The music was great and a few people left early but a few of us stayed and i havent danced that much in ages!! I think i managed to do well considering i was wearing high heels for the first time in ages too but did have to stop every now and then as i was struggling for breath. Very tired today and have done nothing but sit in pjs, read the paper and eat but it was worth it....i will continue to keep dancing as it always cheers me up and obviously helps strengthen my lungs which bloody hurts but is doing good things (i hope) :)
x Lots of love x
Tuesday, 17 November 2009
I got a letter through today telling me i had my pre-assessment for my surgery next tuesday! Eeeek!! This involves having a chat about what will happen and asking any questions, and lots of tests to see if you 'fit' for surgery. Mummy is coming with me as I know i will be scared and wont be able to take in all the information - plus its at half nine in the morning so we will have to leave early and i will still be half asleep. After this, i have clinic so a looooong day at the hospital - yay!!
We have applied to take part in a Santa Run in Greenwich Park on 6th December for Cystic Fibrosis. I dont know if this is a good idea for me as my lung function is not great (in the 20% range) and it will be cold - oh and its 5km!! I will have people doing it with me and you have to be dressed as santa so i think it will be fun!! If anyone could add anything to my sponsership then it would be great: http://www.justgiving.com/Sophie-Gannon
I did start to become quite clogged up in my chest in the week so started on orals to help get rid of it - they have started to work (i think) so hope it improves things! Meanwhile, mummy has a cold so is avoiding me around the house and continues to tell me that she cant breathe!! She then looks at me and i give her evil looks and this sets us off laughing - the cheek!!
x Lots of love x
Monday, 9 November 2009
The cake - nomnomnom!!
Hannah, Lance and Me
Sunday, me and Scott got up and went to McDonalds for breakfast and got there at 10.45am and was told that it now finished at half 10 so i was NOT happy!! Had to settle for cornflakes and chocolate when i got home :( Am pleased to announce that Chelsea beat Man U and I was eating my roast at the time of the goal so nearly chocked!!
Forgot to say that last week, I popped in to the nursery to see everyone and give them some flowers to say thank you for putting up with me! They got all the kids in one room to say goodbye to me and gave me flowers, chocolates and a card...I cried all the way home!! Also got a letter in the post from the owner of the nursery to say thank you for my help and that i am welcome back if i get my health any better and she gave me a £25 gift token to Bluewater. I really miss work but i am going to the xmas party and will still go out and about with the girls.
Clinic today was alot to take in...I had my ultrasound so they could look for veins for putting in my portacath...am now feeling horrible as I was covered with that jelly stuff all down my arms, chest and neck! The results will be sent to the surgeon and i just have to wait to hear from him now :( Lung function stayed the same and so did weight so that was abit poop....have to keep a closer eye on my sugars so that means more daily finger pricks and i have to keep a food diary to show what i am eating so that the insulin can match the food. All very complicated!!
Dont really know what to feel at the moment as nothing has gone down but nothing has gone up...im nervous and NOT looking forward to the port operation but then i do want it as it will be easier (hopefully) and the regular iv's may help the lung function....cant think about this anymore or my head will explode or i will just carry jabbering on!!
x Lots of love x
Friday, 6 November 2009
Monday, 2 November 2009
I have offically started my xmas shopping and picking up bits and pieces that i see while shopping as i know that i will have to go into hospital again before xmas (for iv's and possibily my port operation) so i dont want to be in a rush - not that i can rush much anyway!!
Other than shopping i havent done much apart from bits and pieces round the house.
I have made a miraculous recovery though!! 2 days in a row i was up and awake at 8am which is NOT like me and if anyone knows CF'ers, we dont usually do mornings!! I suddenly had energy and could be bothered to do stuff and my cough had cleared itself up!! At clinic on Tuesday they did give me orals as i was still coughing but i havent started them as i dont feel i need them now! I do have a theory as to what i think may have helped.....insulin!! I started on it at the weekend as i said before, but i was told it takes a while to get fully into your system and have longer term effects. I believe this has helped my body so I suppose it was abit of a blessing that I was finally diagnosed with diabetes. See how it goes...
Havent got anything planned for this week yet but am looking forward to the weekend which sounds like it may be busy! Friday i should be going out with Stephie, saturday is my CF nurse Lance birthday party - the big 40 may i add ;) - and sunday i am up the pub for the football which is Chelsea and Man u....good times...will let you know how it goes!!
Am now off to hoover my car as its full of crumbs and leaves and then started cooking a big fry-up dinner nomnomnom :)
x Lots of love x
Wednesday, 28 October 2009
My weight had gone down a kg to 45.5kg and my lung function went down a little to 24% so i am not happy! I wasnt moaned at so at least that was something!! Got given some more oral antibiotics as this cough is still hanging on but getting abit better - dare i say that!! Im doing well with my insulin and blood sugar monitoring but they cant change anything yet as they need to see more results over a longer period of time. A letter was also sent to the surgeon last week in regards to me having a port fitted which i hope will be done before xmas but on the other hand i dont want it!!!!!
Woke up early this morning (for me) at 8am and have no idea why....mum heard me cough so poked her head round the door and nearly died of shock as i was wide awake waving at her lol. She came and sat on the bed and told me about her dream...r u ready....
She had a boy about 10 years old who had CF. He had a bad cough and mum met up with a nurse who said that to make him better he needs to drink a full sink bowl of washing-up liquid. Mum went upstairs to be by herself and then the nurse came up and said he had managed to drink half of it...Mum went downstairs as she wanted to be with him and he was lying down on his own...she went over and he opened his eyes, smiled and said how great he feels and he didnt have a cough anymore.
So there u have it everyone...my mum has offically found a cure for CF...never mind all this research and expensive drugs...pop down to the corner shop and by some....WASHING-UP LIQUID!!! :)
If only it was that easy, ay!!
Right - im off to get ready as i am off shopping with Steph but before we begin, we must fuel up on steaks and coke :)
x Lots of love x
Sunday, 25 October 2009
The feelings of diabetes is horrible though and i didnt really realise before how scary it really is. If my sugars go too low then I start to feel slightly drunk and my head is all light, and i have no energy to even get up. If they go too high, I get more breathless but i dont really notice the signs of high sugars at the moment. I have been constantly drinking, and therefore weeing, alot more and its driving me mad!! Hopefully this insulin helps with my weight and my chest infections :)
Wednesday was my graduation and we had to leave the house by 8am so i was not happy!! It rained all day but I had my family there and it was a lovely morning. I looked so little in the cap and gown and they were heavy!! The ceremony went ok and i didnt cough so was pleased. Was very tired that night and didnt do anything on thursday as I was really tired and worn out.
Over the weekend I have been so tired and having coughing fits still. Its taking me ages to do things like get ready so will ask about other antibiotics or steriods to help give me a boost as i cant have i.v's again - its too soon!! Ive got hospital tomorrow so will let you know how it goes but im not very optimistic - so im warning you all now that it may be a 'moaning' post!!!
x Lots of love x
Sunday, 18 October 2009
This weekend has been a nice relaxing weekend i suppose. Saturday was spent at the pub watching Chelsea and eating cheese rolls with Daddy and then me and Scott had a takeaway and a night infront of the tele and today (Sunday) I have sat on my arse in my pjs, had a shower and getting ready to go cinema tonight with Scott to watch couples retreat which is a funny film so will try and hold back the coughing!!!
Am slightly nervous about next week as tomorrow i have to go hospital to start my insulin for my diabetes - argh - and on wednesday is my graduation and im too nervous!!!
x Lots of love x
Monday, 12 October 2009
Was not allowed to eat anything until after the tests were finished and had to be up the hospital by 9am. For those people that really know me...this is not a good day already as i am a moody minge when i am tired and hungry so not a good mix lol. Had my first blood test for my sugar levels then had to drink the horrid glucose drink and wait 2 hours. Meanwhile, I went off to x-ray and ultrasound, got my nebuliser serviced, spoke to physios and dietician and then had the second blood test which didnt go brilliantly as Lance couldnt get a vein - another reason why i need a port now. Anyway as i found out this week, the results of blood sugars should be inbetween 3-7 to be 'normal' and mine came back at 13!! Oppps. Finally got home about 12.30 and ate then went to sleep :)
Friday afternoon I went to take the dogs for a walk with Scott and he had brought them a new big ball which they loved so we played abit of football with them - well i stood there and when the ball came to me i kicked it lol - i cant bloody run!! That night was great as I went out with the girls from work for a meal but I still couldnt eat as much as i normally do because i was so clogged up in my chest that i started to feel sick if i kept eating!!
Saturday I felt like shit but still made it to my dads but did go upstairs for a sleep in the pub at one point which made me feel abit better :) but by Sunday I perked up a little and me and Scott went to a big outlet shopping centre in Ashford which was a nice day out but I did not know how big it was and it was a circle format so once you started walking round you had to carry on to get back round to where you had parked!! Came home and ate and had a sleep - knackered!!!!
Monday should have been my mate Vickys 21st so I went to visit her at the cemetery. Her family and 2 of my other CF mates were there and we all had a laugh about memories of her. It was nice seeing her family again and i really hope to keep in touch with them. Im not too worried about her up there though as she is with some of the others so she will be having her own party in the sky. Love you mate xxx
Now for the biggest news of the week - the 'secret' from my last post is that i have had to give up work at the nursery. I really didnt want it to come to this but i know that it has to be done. I keep catching everything from the kids and am not getting the chance to build myself up before i catch something and get knocked back down again :( I am going to miss it and really miss the people who work there but i will still keep in touch with them and still go on nights out with them when i can!! Now I am going to give myself a break until after xmas - i think i deserve it!!
x Lots of love x
Wednesday, 7 October 2009
Last week I went back to work for a couple of days and it was lovely to see everyone!! Didnt do much else that I can think of at this moment in time!! Oh i do have some news - I got all my results and i ended up with a 2:1 degree which im so happy about!! Although one of the results is still wrong - (a looooong story) - so I emailed my course leader and asked if he could just change it on the system and he sent an email back saying "I can not prioritse this now. Email me in a week" How frigging rude!!! My mum went mad and so did I. Ive had nothing but trouble with that uni and they have not been supportive and are still not being so complaints are being made. I graduate on the 21st October and they emailed me with the times and the ceremony starts at 10.30am but we have to be there an hour and a half before then!! God i got to get up so early lol xx
This weekend was good but tiring!! My daddys birthday was on Friday and we went up to his pub as he had a mini party..he was already partly drunk by the time we arrived but it was fun and he loved his pressies which were a few motorbike tshirts, a book and a game you put on the bar :) Saturday I recovered from the late night but then was invited to go out with some of the girls from work. Scott offered to take me and pick me up which I said ok to but only if he could use my car lol - typical!! The night was funny even if some random, very strange bloke decided to talk to us!! Sunday I was up the pub again in the afternoon to watch Chelsea beat liverpool and have a roast dinner, then it was quiz night in the evening!!
Great weekend and then woke up monday with a full blown cough and cold :( Demanded oral antibiotics from the hospital and went up to clinic on tuesday. Lung function and weight had stayed the same - 46kg and 26% - but I ended up crying as i am so fed up. Been out of hospital 2 weeks and have a cold again...i have been trying so hard since coming out of hospital and I havent had the chance to build up any strength or lung function before I get knocked back again. I think I know part of the problem and my Dr and a few other people have told me the same so I think I know what I have to do but I dont really want to...will let u know more in my next post.
x Lots of love x
Sunday, 27 September 2009
3 weeks in hospital altogether but im feeling back to my 'normal' self again! Had to have another line put in after my last post but it had to be a small line as it was a small vein!! I kind of said yes to having a port - really dont want one but i dont have a choice anymore - its gotta be done!! Im nervous already and its not going to be fitted until about november!! My weight stayed stable while i was in and my lung function went up a little to 28% but i am determined to get it in the 30's!!
Since getting home on Tuesday to a lovely dinner of spagetti and meatballs (yumyumyum) I have been quite busy actually even though I should have been resting - typical me!! Wednesday I had another bloody appointment at the hospital so was back there for a bone scan and will get results in 3 weeks but my bones feel fine thanks lol...and had to arrange to have a few b12 injections at the doctors as they started me on them in hospital so i had to finish the course...and then came thursday....drumrole....
I got my new car finally!!! WWWWoooooohooooo!! I love it and want to live in it and drive around all day - so if anyone wants a lift :) Its a black ford fiesta. Went to halfords aswell to customise the inside with pinkness obviously!! Apparently i am not allowed to go too over the top as Scott is on the insurance and he doesnt appreciate the lovely colour as much as me :(
Finally got my car sorted on Friday as i needed it done before i went into hospital was feeling too ill and looked like a scarecrow for most of my admission lol...i am now pleased to say i look human again :) Oooooo - results are not final yet but i checked on the uni website and my results are in and i did really well and 2 of my results were only 2 marks away from a 1st!! I feel quite proud of myself (if i do say so) as I got no help from the tutors because I had extra time and when i emailed them i got 1 sentance replys and they were too busy to see me, and alot of the work was done whilst in hospital or ill....so its a big achievement (and relief) for me too!! Just waiting for them to add up all the results to see what my final degree will be...argh!!
Am now looking forward to my first weekend and 1st full week out of hosp...what will i do??? hmm
x Lots of love x
Thursday, 17 September 2009
Home is scheduled for tuesday and from then on the hard work to strengthen my lungs begins...i need to get my lung function up as its getting frustrating and slightly scary now!!!
Since my last post i have managed to come off my oxygen after 2 weeks and got rid of all the crap from my lungs which took lots of coughing, pain and alot of painkillers!!! Had to have a new line put in as my vein blocked up and died on me, took a few painful trys to find another vein but i now have one in....thank goodness....hope it lasts till the i.vs finish!!
Because of the failing veins and the fact that I am running out, talk of having a portacath has begun and I am actually pooping myself :( I am facing up to the fact that I need one and i do believe it will be easier and less stressful but its just the fact of having an operation and knowing how sore it will be after!! Anyway i dont wanna speak too much about that now as its making me feel sick already!
Just also want to mention a little about Vickys funeral which was on friday 11th september. Well its easy to say that it was one of the most heartbreaking days of my life so far. Not just because i was upset but it was so horrible seeing people that are normally strong, be just as upset as me. I wouldnt have missed it for the world so I was there with tubes and my oxygen and millions of tissues. The actual thing was lovely and a fitting tribute to an amazing girl but i cried from beginning to end. There was actaully one point in the day where i let a certain thought creep into my head but managed to quickly push it out again...just looking at everyone looking at me with the oxygen and stuff i started to think...am i next?? Silly thing i know but i couldnt help it.
Hopefully by my next post i will be home sleeping in my own bed and getting ready to work as hard as i can to make myself better...lets hope it works!!
x Lots of love x
Saturday, 5 September 2009
Back in hospital again since tuesday...cant even be bothered to write much as i have no energy and am sleeping alot of time. Tuesday night I didnt sleep at all and then at 4am i called for a nurse as i was fed up of struggling and my sats had dropped to 85% and my heart was racing. They put me on oxygen and kept the sats monitor on me but then by 7am my temp was up to 38.5 and i cant even remember what was happening. The next day i slept most of the day and mum stayed with me...i was put on a fluid drip which helped my temp go down and then Lance took LOADS of blood and then I went back to sleep. Since then, I have been so sore and on painkillers cause of coughing allday and there is so much crap on my chest but its really thick so is hard to bring up.
Friday i had a blood gas done which frigging hurts!! They put deep heat cream on your earlobe and leave it so all the blood comes to the surface then she cut my ear with something that looked like a razorblade and stuck some little straw in the opening and filled it up with blood...how fun!! It showed the oxygen in my blood was low so i have to keep the oxygen on for now :(
Everyone keeps telling me to rest but i find it hard - i just hate being ill and having to admit that i am ill - stubborn moo lol. Today (sunday) is the first day i have felt a little better and ordered some pink GHD straighteners for myself YAY!!
Will update with more next week with hopefully better news and a clearer chest :)
x Lots of love x
Thursday, 27 August 2009
x Me (looking highly rough) and Vicky visiting me in hospital x
Lance my CF nurse came round to tell me the news first thing on Monday morning so that I didnt find out another way, which I thank him for soooo much. It was horrible seeing him so upset too.
I just want to remember some of the great times we have had together which I will never forget. Vicky, who is going to help me cause havoc on Mulberry ward now and wind up Lance, Jen (the dietitian) and all the nurses...you used to get me in trouble when I came to your room and then we heard the high heels of Dr Baker and I had to attempt to hide or walk quickly back to my room so we didnt get shouted at for cross-infection :) At night-time, it was like having a sleep-over, I would bring down my snacks and magazines and drip and wheel everything down to see you and the nurses often joined us if it was quiet. What am I going to do now when Im admitted - im dreading it so much.
Always trying not to laugh with each other or the coughing fits would start. From the moment I met u, I knew you were special, you were loved by everyone, even though your mouth would many times get you in trouble :) Such a strong little girl who never gave up until you really could take no more. That was so hard for me to see you in such a state but I had to stay strong for you and keep you smiling but inside I was crying. We never did get to do the day trip to Southend or go out in our police fancy dress outfits (still cant look at your facebook picture).
I cant tell you how much I will miss you but I will keep your spirit and memory alive on Mulberry, I owe you that much. The one thing I am glad of is that you are finally out of pain. I know you were scared at the end, I still have the emails, all your texts, cards and letters. I know you have been reunited with Aaron, Lewis and many of the other friends that you lost and missed so much. I dont know what else I can say as there is too much to write but you know how much I love you and always will - just wish we had that bit more time.
x Always in my heart x Love you forever x Gone too soon x
Sunday, 23 August 2009
My lovely friend Anna has been admitted to hospital yet again and is now in intensive care and been ventilated. She is struggling alot even though she is on the highest amount of oxygen possible. She has had a few fits and her heart has stopped and now has septacemia but she is a fighter and will get through this like she did before. Im not going to lie though as im sooooo worried as its hard to bring CF sufferers round from being ventilated due to the strain on their lungs. Shes such a brave and strong person so im just taking it day by day and waiting for her to send me that little text message saying 'hello' again.
My chest and cough has been abit better which is good and im due to start the steriods tomorrow (should have started already but the shitty pharmacy always cause problems!!) so hopefully it will help blast my chest better!!
Sorry my post is not brilliant but I needed to update. The only good bit of news is that I got my application form for my graduation which is on the 21st October and i dont want to go - im toooo scared and embarrassed!! Ive got to order my cap and gown which has a hood and everything -because im so small, im going to look like something out of Harry Potter!!
x Lots of love x
Tuesday, 18 August 2009
The first bit of news is that after 3 months of waiting I finally got my disability letter on monday and they had granted me the high rate again (which was obvious) but that meant I could order my new car!! I rang straight up and booked an appointment for today (tuesday) and have just got home and it will be here by the end of september....not quick enough for an impatient moo like me but I will have to deal with it. I have gone for the new ford fiesta in black...luvly!!
This spured me on yesterday to clean out my car which took bloody ages as it was a mess and I had to keep sitting down cause I was knackered....anyway, 2 coughing fits and 1 banged head later and I had finished and went for a nap lol :)
The second good bit of news is my weight is up to 47.3kg!! Yay!! Really pleased with how I look now - I no longer look 'ill' or skinny but still got to get upto 50kg.
Now for the shitty news:
My lung function went back down to 25% - however I have been on the cipro for nearly a week because of these coughing fits (which have got abit better) and now I have a course of steriods to take as my breathing is poo basically.
Im also really worried about my 2 girls - anna and Vicky (both have CF too). Both are in HDU (high dependancy unit) but I found out today that hopefully Vicky will move back to the ward soon but anna was fitted with a chest drain today after being rushed back in last night....both are really scared, which is to be expected, but im also scared for them...both have been through soooo much...nearly 10 months since Vicky has slept in her own bed and anna has had to deal with soooo much over this last year....sending all my love and hugs to them both xxx
Will updated with more ramblings soon but nothing is planned for the next few days other than more eating and exercise...fun fun fun
x Lots of love x
Thursday, 13 August 2009
Saturday was lovely weather so we spent the day at the beach including going in every bloody arcade along the beach front and playing mini-golf and going on the go-karts!! We had to get home for 5 so the boys could watch the football and I had a nap!! We went for dinner and then into the clubhouse after as they had a stand-up comedian on - he was funny actually!! Sunday was another lovely day - we had booked to go roller skating at 12 which was very funny and then went back to the caravan and sat on the grass outside playing cricket, football and reading. At 3pm we went down to the sports bar to watch the chelsea v man u match and am pleased to say chelsea won :) :) That night there was not much on the clubhouse so we had dinner then went back to the caravan and played cards all night which was nice. Got home on monday at lunchtime and wanted to go back!!
Today I went to the uni to talk to someone about what I can do with my degree as at the moment I can only work part-time because of my shitty health. Mum dont want me to work at all but I will go mad if I dont do something!!! Stubborn moo aint I!! Got lots of websites to look at and the lady is going to keep in touch and help me have a look at possible options so Im feeling alot happier and more positive.
Am going to start on some oral antibiotics tonight though as these coughing fits are driving me mad!! Its annoying though as the weather is nice and I wont be able to sunbathe now :(
x Lots of love x
Tuesday, 4 August 2009
I am sooooo proud and pleased to say that i am no longer a uni student and all my essays are finished and handed in!!! Just want to get my results now but i think i will get them in about september so will attempt to wait patiently!! I have no idea what im going to do now - i still have my bank staff job at the nursery which i will carry on with as i love it but i dont want to waste my degree but i can only work part-time at the moment so im hoping to go and see someone at the uni for advice on what i can do next!!
Im soooo looking forward to this weekend as me, mum, danny and scott are off for a long weekend to hastings. Not a massive holiday but it will be nice to all spend some time together and do fun things and have a laugh!! Will let you know how we all get on lol xx
Saturday, 25 July 2009
Last Sunday I went to see Ne-yo in concert and he was brilliant!! He done all of his songs and even included a tribute to Michael Jackson and he did the thriller dance and everything. I was still feeling abit shitty but i did my best and was looked after by Steph and her mum so it was great!! Sunday was also abit of a 'thinky' day for me which i hate cause they make me upset and angry. It started because it was a year ago that someone i knew lost their battle with Cystic Fibrosis and i was just thinking how unfair things are at times. I have tried so hard over the past few months with finishing my uni work off, doing exercise more often and making sure i concentrate on my weight but then my lung function goes and drops like that...what more can i do?? Then i was thinking about certain people in my hospital that smoke who have CF and actually go out for a fag while on ivs for a chest infection - im sorry but absolutly no sympathy is coming from me for them!! Anyway...moan and rant over lol x
Mummy broke up from school this week so she has six weeks off...YAY!! Not done alot this week but im starting to feel alot better being on the cipro antibiotics and today i have only really coughed once when i woke up this morning...finish the course on tuesday so hopefully i will be ok by then if i dont catch swine flu from somewhere!! Its everywhere and some family friends have been bedridden for a few weeks with it and they are healthy so god help me if i get it....i have not been too bothered about it but now it seems to be increasing and quite close to home im starting to worry. Thats why i have been banished from work for 3 weeks as quite a few people have been ill!!
Not up to much this weekend either but i suppose i should try and slow things down abit as it has been a busy few weeks.
x Lots of love x
Friday, 17 July 2009
Went to clinic on tuesday for check-up and was feeling ok if not abit tired after my bday weekend. Weight was up to 46kg which is the highest it has been in 1 and half years so was pleased :) my lung function was the shocking bit...i tried really hard and it had dropped by alot from 32% to 23%....what the hell is going on there!!! I nearly cried due to shock. So because of this i am now back on cipro antibiotics to see if that will help and i will focus on my exercise for the next week or so. I got that new wii active thing for my bday so will attempt to start that soon.
Wednesday, me and Scott took the dogs for their yearly booster jabs and was told that bella has a chronic skin condition which will prob be with her forever...i thought this was quite funny that the 2 girls in Scotts life always have something wrong with them :)
Thursday i felt rubbish....had no energy and was feeling sickly so slept for alot of the day...everyones theory on this was because i have been busy all week so it all caught up with me...by about 3pm i was feeling ok...just needed a day to rest!!
We have been decorating Scotts room all week and have finished painting today...although most of it is on me!! Had a good day though and am now looking forward to tonight to see a family friend and Stephie is coming round for a catch up :) Tonight we was supposed to be going Ivory Lounge for more bday celebrations but alot of the girls from work arent feeling great and are abit short of cash so we will have to re-shedule...I dont mind really but it is a shame!!
Off for a shower to attempt to clean myself of paint!!
x Lots of love x
Tuesday, 14 July 2009
On saturday, I chilled out at my daddys and we had an early dinner as i had to go and get ready for another night out!! It is also one of the girls from works bday on wednesday so we went bowling for her bday and the theme was neon!! We finished bowling about half 10 so ran round the corner in the rain to the ivory lounge. Now, the ivory lounge is over 21s and my bday is on sunday so we got to the door and begged them to let me in as i would be leaving the ivory lounge as a 21 year old lol....the bouncer was great and let me in!! Ivory lounge shuts at 12 so i got home about 1am and, again, went straight to bed!!
Sunday was my bday!!!! I had to get up at half 6 as my mum and dad had planned a surprise day out. I opened all my pressies which were lovely...the usual stuff...jewellery, 21 keys, choccie, drink and then i opened a pink handheld video camera!! Its soooo cute but my bro took it off me and plugged it into the tv.....OH MY GOD!!! My mum had gone round to my old primary school, old secondary school, my work, my mates houses, family friends houses and up to the hospital and there were video messages from everyone!! I cried and laughed at the same time!! Then i opened the last pressie which was a big booklet and certificate which said we was going on a VIP tour to Woburn safari park and going on safari with a ranger!!
The day was brilliant - me, mummy, daddy, danny and Scott (he came home early from holiday on sunday morning) all went. The safari was brilliant and i was soooo scared when we pulled up next to a pride of 16 lions and the ranger turned the engine off!! We got to feed the giraffes some cabbage as it was my bday and i got covered in slobber!! We got home at 6pm and i slept for an hour until we had to go out for dinner.
We arrived for dinner and i had 2 balloons tied to my chair (a 2 and a 1) but because my friend had said its for little soph they thought i was 12 lol...i do look 12 though so everyone thought that was very amusing!! We ordered dinner and mine never came out!! We waited for a while and then had to ask where it was and they had deleted the order!! GREAT!! No dinner for me on my bday!! So we re-ordered it and i ate it on my own :( My cake was brought out and there were only a few candles on it which made a 21 shape and it took me 4 attempts to blow them all out lol.
Overall, I had a great weekend but am absolutly shattered so am off for a relax and to sort out all my goodies - all the pics will be up on facebook as soon as possible as it wouldnt let me upload any more here for some reason!! xxx
x Lots of love x
Friday, 10 July 2009
Not much has happened since my last post...I have been concentrating on my uni work and ironing...how bloody exciting!!! Well it has all paid off as I have finished my main essay which ended up being 25 pages altogether and I had to hand in 2 copies so alot of printer ink was used!! I handed it in today and feel less stressed already (until I get the results that is!!). Ironing has paid off too as now I actually have stuff to wear!!
I havent been to work all week...not cause im a lazy moo but because there is swine flu at the nursery!! I was advised not to go in for a while for obvious reasons....Swine flu was also confirmed at the school where my mum works...its trying to get me!!! I have a perscription on standby at the doctors incase I start to see symptoms. Joy!!
I missing Scott soooooooooo much. He is back in the early hours of Sunday morning so I have requested he come and wake me up on my birthday with lots of presents in hand lol. I have seen my doggies a few times this week and they go absolutly mad when I come in the door...god knows how they are going to act when they get to see their daddy after 10 days away!!
I am off to start getting ready....my next post will be as a 21 year old!!! How scary!!
x Lots of love x
Saturday, 4 July 2009
I popped in to see Vicky and she was doing ok but i couldnt stay long as I had to get back to wave Scott off on holiday....yep he has left me to go to Malia!!! :( I miss him already!!!
Thursday i had work which was good and then I went up to Scotts to see his mum and dad and my doggies. Since thursday I have had such a bad stomach and dont know what is going on in there!! Its a constan bellyache but then I get bad cramps and pains aswell which leaves me bent over in pain...Its nothing to do with creon as i have been double checking i am having enough so will see what happens and will just keep taking painkillers - best invention ever, along with emula cream :)
Friday my mate Stephie came round for a chat which was nice...we have planned to go shopping up lakeside next week for shoes...and im sure other things will fall into my arms lol!! I am VERY excited about my birthday now...only 1 week away and im going to be sooooo busy and worn out but it will be worth it....wooooohooooo!!!
How frigging hot is it??? Cor its lovely but i do keep getting covered in salt (CF sufferers produce salt in their sweat) so basically i feel like a chip and do keep rubbing my eyes which hurts!!! I have lost energy a few times this week and think its because of the weather so am going to ask for salt tablets at next clinic...hope i can last that long!!
Right im going to get ready to go up the pub with Daddy and im not on antibiotics for once....nearly a month now!! Check me out lol....might slip in a magners with lots of ice but only 1 as im driving!!
Speak to u all soon xxx
Saturday, 27 June 2009
On wednesday, I went to the uni and handed in my finished essay and reflective journal. On Thursday, we had Sky installed woohoo but I was having a bad day healthwise - I dont know what was wrong with me!! I had a very bad stomach and felt really tired allday. I was still eating though lol!! Friday my belly was still playing up alittle but it had gone by the time me and Scott went to the pictures. I didnt really want to go but I have to admit the film Transformers was good although it was very long!!
Scott found out that Harry Potter tickets were availiable to book so he had alittle scream and went straight on the internet to book tickets for the opening night lol....its at the imax....i dont actually know what this means....is it 3D?? Do u get to wear those funny glasses???
Today I nearly crashed!!! It was a nice day allday and then it suddenly got dark, rained really heavily and then we had hailstones the size of malteasers just as I went to leave my Dads!! I attempted to run to the car and once I was in it, it sounded like my car was being shot at!! Very scary...I proberly shouldnt have drove in it but i am impatient lol! I hope its nice tomorrow as me and Scott are planning to take the dogs out. Not long till he goes away :( and i have clinic the same day too so will have to go early and rush home to see him off.
Off to bed now, Im knackered and need to clean my neb!!
x Lots of love x
Monday, 22 June 2009
Wednesday, thursday and friday I tried really hard and it paid off as it is all ready to hand in so I thought I deserved a break so didnt do anything uni related over the weekend, oh apart from making notes out of a book. Now I am half way through one of my essays and halfway through the other one so not long to go I hope!!
On friday night, Scott went out with the boys to the pictures so I thought I would have a nice relaxing night in but I was so bored - really didnt feel like watching tv or reading so me and my friend Steph decided to go out. Im soooooo glad we did because we had such a funny, random night and I have not laughed that much for ages....my cheeks and stomach was actually hurting!! I was home by half 11 though because I had to get up because me and Scott went shopping up London to Oxford Street. I really enjoyed the day even though I feel straight asleep when I got in as I was knackered, I didnt realise how looooooong Oxford Street was lol. We had millions of bags because of the huge primark - i did get lost a few times in the shop and was being pushed about everywhere...madness!!
Sunday was Daddys day so I got up early and went to daddys house to cook him breakfast and give him his pressies. We sat down and ate and read the papers and then I went home at lunchtime...Scott came down and we relaxed allday and just watched tv and films which was really nice. Today I went back to work (1st time since my ivs finished) and had a good time even though I was really tired...Im even more excited about my birthday now as all the girls from work are coming out on the 17th to Ivory Lounge...woohoo..and its also one of the other girls from works birthday on the 15th so its a double celebration!! Its mummys birthday tomorrow so have been getting little bits and pieces together!!
On the health front - ive been feeling ok actually. Still eating like a horse and doing exercise on most days so I am proud of myself. Talking of food, Im going to find some now!!
x Lots of love x
Tuesday, 16 June 2009
I cant tell everyone how happy i am!! Its very rare lately that a hospital appointment has made me smile but today i am!! I have got my line out and my lung function was up alittle bit but the best news was my weight - i was 43kg when i left hospital on thursday and today i was 45.5kg!!! I was shocked!! My CF nurse said he was proud of me which was really nice to hear but i know i still have to get upto that 50kg mark!!
I went up to the ward to pay a visit to Vicky and see the nurses and got lots of hugs but Vicky wasnt there!! She escaped for a few hours to go and have her hair done :) I got a text from her monday to say that her bowels were no longer blocked and i was told by Lance today that she was alot better. What a relief!! I am soooo pleased and took up everyones messages for her from the CF forum. She text me when she got back to the ward and said sorry for missing me but i am just so happy that she got out - she deserves it - i will see her next week proberly!!
I got to see my friend Steph today too - we went for a meal and then she came with me to hospital so i wanted to say thank u. She kept talking about my birthday which is only a few weeks away so i was getting really excited!
Over the weekend, I couldnt do much anyway as i was still on ivs but i took the dogs out for a walk everyday since being out of hospital and i also walked round to my mums school to meet her at lunch (about a 10 minute walk). I also have hit the uni work and done really well with it ovr the weekend. I am abit pissed off with the uni though - they have given me extra time because of being in hospital alot but i have asked to see some lecturers for advice on certain bits of work but they say they are busy and if i could email them instead... i dont think this is fair as i have obviously got extra time due to a stressful situation and they are making me stress even more by making me worry...i really feel like im doing it on my own :(
For the rest of the week i am going to do uni work and make sure i keep up the exercise and eating and then have said i can go back to work next week if they need me! I have missed it!! At the weekend, Scott is not working on saturday so we are planning to go up london to the big primark as he needs holiday clothes and i just need to shop - i dont really need a reason do i??? I also need to buy a few things for people - fathers day is sunday and mums birthday is tuesday!! i have no idea what to buy!!
x Lots of love x
Friday, 12 June 2009
Me on my oxygen ------>>
I have to say how much I love my CF team - although they can be a pain in the arse, they make me smile and really do help alot. This admission was less stressful because we are now allowed microwaves so i didnt have to fight to be fed!! I had another nutter on the ward this time too - he came to my room twice within the 10 days while i was asleep and one time he even came to my room with no trousers on - nice!!
The hardest part of being in there this time was seeing and not seeing my girl Vicky. She has CF too and has been through such a bad time lately. I wasnt able to go to see her as I was on oxygen but the last few days i was in there i made it down to her room. I do agree with the cross infection rules and try to follow them as much as i can - however, when i can hear her crying in pain on her own in her room i could not just walk past and leave her - no-one would be able to and i certainly couldnt. i am her friend first - the CF comes second to that. I worry about her so much and it breaks my heart to see her like that and not be able to do anything to help. Thankfully as i was leaving she was starting to pick up but i am always thinking about u Vicky and will always be there for u xxx
Some good news now!!
Num 1 - I am home (even though i am still on ivs until Tuesday).
Num 2 - I am eating everything in sight!! I think it is because of the megace but i am also feeling better so that helps too...i am going to get this weight on!!!
Num 3 - I got my result back from the uni essay i have handed in and i passed it- i got 62!! woohoo.
Num 4 - My lovely mate Anna, who has been through a bad time with CF lately and been in hosp for nearly 8 months now is coming home tomorrow!! I cant even describe how happy i am for her - she has done so well and im so proud of her!! Love u xx
I had a nice day night tonight with Scott and my doggies - we went to the park and i managed to do a little jog as i was throwing the balls for the dogs! Check me out!! I am really going to try and do physio more often - i do get REALLY demotivated sometimes though and it is really tiring and, knowing it is going to make me cough and sore is such a horrible feeling but i will try and keep you all updated. I dont know what my lung function is at the moment but will find out on Tuesday at my next clinic visit.
Right im off now - my little bro has just set me up on my 1st drip off the night (Dr Danny lol) and i need something to munch before beddie byes!!
x Lots of love x
Monday, 1 June 2009
My bloody chest is terrible at the moment and has been since thursday. It is soooo clogged up and I am coughing quite a bit. Its really thick and when i do do anything it is taking me ages and getting me really out of breath...not looking good is it :(
My week has been good and I have been 'happy'. Mum was off for half-term so it was nice to have someone else around the house in the daytime. Tuesday I went to clinic and was prescibed megace but because it can mess about with blood sugars I had to bring home a blood testing kit and do random sugar tests each day. I now have the hang of it but stabbing myself everyday bloody hurts lol...im such a baby!! Wednesday i had work which was good as usual and then thursday i went to pick up my megace and cipro from the hospital and started taking them both that night.
Friday i was feeling quite icky so rested in the day as i was going out that night. i met up with scott after work and took the doggies out and then we went for a quick snack stock up in morrisons which was soooo packed!! Friday night was great...went for a meal for my mate charlotte's birthday at frankie and bennys. There was supposed to be more of us than there was but it didnt really matter as we all had a good time anyway!! It was a good laugh although i was trying very hard not to laugh as my cough would then be set off!! CF ruins bloody everything lol.
Saturday was the FA cup final and chelsea won...woooohoooo!! I still cant believe how much the manager (now ex manager :( ) looks like my doctor lol. saturday night was my brothers football presentation which i really didnt feel up to but it went ok...didnt dance or anything but was nice to catch up with everyone from down the club.
Because it was such a nice day on sunday, me and scott planned a nice day out. We left about 11am and drove to his bosses house who lives in halstead which is out in the countryside. the houses there are huge and i was so jealous!! Warrens house is lovely and we explored his garden which had chickens in and his 2 dalmatian dogs, pepper and abby. He is getting sheep next week so that he doesnt have to cut the grass lol...after that we went to a nature reserve where we had coke and doughnuts and then walked round looking at the animals although i couldnt walk too far as my breathing was shit!! We were both very tired afterwards so on the way home we stopped of at the harvester and had something to eat and then headed home at 4pm. I was knackered but really enjoyed the day!!
Lance is coming round tomorrow now to check me over as im getting worried about my cough and chest...hopefully i can report back with good news but i am scared :s
p.s....as for the megace...its not working at the moment...im only on 40mg twice a day so dont know if this is strong enough yet but they did say they will increase it soon...hopefully VERY soon xx
Sunday, 24 May 2009
I have still been feeling really happy since my last post and just been trying to get this uni stuff done. But I have had a busy and tiring week so need to slow down abit. On wednesday, I went bluewater for lunch and shopping with Steph which was sooooo funny and we brought clothes for friday and then thursday I went to get my hair done in the afternoon as it was looking a mess!! It now looks lovely :) Thursday was also a very special day as it was mine and Scotts 3 year anniversary (even though it feels like forever lol). We just spent a nice night together and had dinner together. He brought me a big bouquet of pink flowers which were gorgeous!!
Friday I had work for a few hours which was good and then of the night time was clubbing time!! We went to zens and it was ok but I prefer going to the clubs and bars at the o2 as they play the sort of music i like all night. It was a good night thou and i got in at about 2am and slept on the sofa lol. I didnt sleep well as i had a bellyache and the beginnings of a snotty nose....so over the weekend i did nothing but cough, blow my nose and moan!!
Today i feel ok...my nose aint causing the tickly cough much but still clogged up so will hit the wii-fit later on today...im still planning on resting abit today but will sit here and do uni work and eat!! I dont want my chest to start to get bad again as i have been doing quite well so fingers crossed it wont!!
Am actually quite hungry today even though i've been snacking and had breakfast n stuff already but im not complaining! Going to find some more food and waiting for mummy to get back with another supply of jelly babies...mmmmmm...she is off all week as its half term so i have some company!!!
Speak to u all soon xxx
Wednesday, 13 May 2009
It was also my lovely boyfriend Scott's birthday yesterday and he came down after work, i cooked him dinner and he opened his pressies...i secretly brought him an ipod touch 32gb and he loved it..he was surprised as i said i would give him some money to put towards it but i got a good deal so brought it anyway lol...mummy got him lots of different bits and pieces which included a cup with an electric spinner on the bottom so you press a button and it mixes up your drink for you...scott has an obsession with chocolate milk (not any chocolate milk, it has to be the nesquick powder and then milk mixed together). So for the rest of the night he was playing with the ipod touch and listening to the songs on it and dancing round the room while holding his chocolate milk cup!!! I love him xx
Im happy at the moment and have been feeling quite alright over the past week or so....the only thing that is hindering the happiness is this bloody uni work and my weight but we will sort them out soon.
I have always liked going to work at the nursery but over the past couple of times i have gone into work i have loved it and thats due to getting along with everyone that wors there. They have all been great and im now really looking forward to a few nights out we have all got booked up!! wooohoooo!!
Even though I have had a good week...i have had 2 things wrong with me which are quite funny according to scott and mummy....1st thing: we went to the funfair on friday night and it was great...mum came and worried about me all the way round because it was abit cold and the rides did make me have coughing fits because i scream all the way round and laugh so that was great physio. however, the last ride was sooooo fast and spun round and round and i came off and said my back hurt...mum had a look and screamed as i had bruises all up my spine...its only just going down now so i can just about sit back properly...it was worth it thou...i love funfairs!! the 2nd problem was after work on monday...at work we went outside with the kids as it was sunny and we was out there for about an hour...well when i got home i had a red nose, cheek and forehead..i was sunburnt!!! i had been joking about it because i was on antibiotics they make you burn easier but i was only in it for an hour - that takes this piss lol xx
Anyway...i must be off now...i have to go to uni to hand in some work and then carry on with the rest of it! I cant wait to finish all these essays i am starting to go slowly insane!!
x Lots of love x
Friday, 1 May 2009
Im back on oral antibiotics as I have a cough again but at the moment im still able to do things and have energy but the cough is just constant and annoying!!! Scared a few people at work but i just laugh it off lol xx they should be used to me by now - i just like them to know im still at work lol x
Been doing my uni work alot but its still taking a while and sometimes I give up but im nearly there and my daddy keeps saying he cant wait until I graduate in October which i always think of to keep me going. ive finished 1 essay so far and done other learning logs and observations and lots of research for other essays but when i think about what more i have to do it is alot!!! - 3 essays - one is 1500 words, one is 5000 words and one is 7000 words!!!
Last week I felt on the verge of a breakdown!! What with all the uni work and then not feeling great after only just coming out of hospital a week before...but i am due on now so that cant have helped my emotions!! I was waking up in the mornings and doing all my tablets, nebs, food then exercise, then getting dressed and making my self look better so that i felt better but i still didnt so i started to think "whats the f***ing point???" I cried all last weekend and in front of my dad which i try not to do as he doesnt like it at all and cant handle it well - so i shocked myself!! it was a nice day on saturday with him thou!!
Oh and it has been such nice weather aswell and i aint been able to go and sunbathe because of being on these damn antibiotics!!!
Ive been ok the past few days and feeling happy even with this cough and loved being back at work and seeing all the girls again - i was trying so hard not too laugh as it would bring on a coughing fit but it didnt really work!!! Today though, i have been thinking about people being there for u and that when i was having a hard time last week, there was only a few people i could really talk too. I think some people either dont know what to do when im ill or just dont realise how hard it is in hospital (its not just lying in bed having a rest for 2 weeks - its actually very stressful and depressing) or being ill constantly. I always try and look happy when i see people so maybe i should truely tell them how i feel and how scared i am but i dont because that would be like admitting defeat. I try so hard to be a good friend and dont expect much in return even if it is only 1 visit every hosp admission or a text asking how i am!!! its not that hard is it??
Anyway, i dont want to waste my breath on people (i need as much breath as i can get lol)....im now looking on the internet for coach holidays to spain for me and scott as i am terrified of flying!! I want to go now!!! Hopefully by the end of august though, i will be healthier chest-wise and alot fatter!!!
Lots of love x
Tuesday, 21 April 2009
Haven't wrote on here for a month because I really couldnt be arsed to be honest!! I was really fed up as I was taken back into hospital after only 3 weeks of being out - i didnt understand why either as I wasnt bringing up alot of stuff but was coughing all day and my chest was so sore i couldnt move and didnt want to anyway as i had no energy. Went to clinic and it turns out the infection hadnt completely gone from before so it just got worse again...oh and i also fell asleep waiting for Lance to do a blood test (how embarrassing lol) and they sent me home with oral antibiotics and painkillers. I tried these but over the weekend nothing had changed so Monday I was taken in. Thankfully this time, my line went in first time and I went straight to sleep afterwards.
My mum makes things worse as when things get bad we both set each other off laughing!! This happened the second night in hospital when i attempted to walk to the restaurant and back. Well...it took half an hour to walk to the restaurant as i couldnt breathe lol and then on the way back, after sausages, chips and beans, and an icecream in my hand, i tried to walk back but only made it outside the restaurant doors when I was sick through coughing and still trying to keep hold of my icecream lol...mum ran to get tissues from a nearby toilet and nicked a wheelchair from the corridor so i could get back!! When we did get back, i was knackered!!
This hospital stay went ok i suppose and I managed to escape on bank holiday monday. For the rest of that week I just chilled out, sorted stuff out and began hitting my uni work!! Had a visit from Steph who was loaded with KFC...mmmmmm...so that was a really nice day.
Today I had a check up at the hospital and it was mostly good news...my lung function has gone up from 29% to 35% and that is thanks to me taking the dogs for a walk a few times with Scott and playing the wii and the wii-fit!! My weight has gone up (as i lost some while being in hospital but thats no surprise considering what the food is like!!) to 44.4kg. Oh and i also found out that when i was really ill last January (mentioned at the start of my blog) that was pheumonia!!! no wonder i lost all the weight!!
So I will leave it there for now as its quite a positive time...im going to try and keep doing what i should be and get on with some uni work...argh!!
Lots of love xx
Monday, 16 March 2009
Text from Lance to say I am clear of MRSA!! Thank god for that! Have been so nervous since hospital on tuesday so am sooooo relieved!!
Things are finally looking up at the moment for me - i shouldnt say that because as soon as i do things take a turn for the worse!
Im still doing my physio and am just about to go for a walk round to meet mummy for lunch at the school as its a sunny day :) but starting back on my nebs after the i.vs has given me a husky voice!! Making me cough alittle and Scott was not impressed the other night as he just changed the duvet as the puppy had decided to wee on it, and then i was sick on it through too much coughing!! Oh well - dont know who's worse - me or the dogs!!
Wednesday was good - uni was boring but the meal and film were great and had a big catch up with Sirin. Was soooooo looking forward to friday and going out with the girls from work but it didnt happen as everyone was busy....that was a shame but its hopefully going to go ahead in april. Saturday I went to a family friends 60th which was ok - it was nice to catch up with people i hadnt seen in ages - they said i looked well - even better!!
Oh....Im soooooo excited this week im getting things sorted out. Last week, I couldnt even look at uni work - i wasnt in the mood and needed a rest after the past few weeks so am getting back into that, but even better news is that im going to look at some cars this week - a peugeot 206cc - one of them is black and one is silver!! Hope they are as good as they look - im sure i will let u all know if i do get one!
Right im off now to sort out my room - it looks like my ironing has exploded and ended up all over my room so better do some so that i actually have some clothes to wear!!
x Lots of love x
Wednesday, 11 March 2009
I was suffering as I couldn't take my anti-histimine for the rash as I was driving and it makes me drowsy so when I got there, I showed the Dr that it was still flaring up even though I stopped the Vancamicin last wednesday...she didnt know why it was still happening and we couldn't link it to anything else so I got a bit worried....she said if it continues then I will be reffered to a dermatoligist.
Lung function weren't up but I will focus on this and do exercise everyday to get it up (hopefully!!) - its still at 38%. :(
As for the MRSA, well I was angry, as when I was in hospital and they found it in my sputum, they then did a skin test to see if it was on my skin....I didnt hear anything back so forgot about it but my Dr looked up the results and told me it was positive on my skin too!! Why didn't they tell me?? I asked if that could be the rash and whether anyone can catch it but she said no to both so at least I don't have to be locked away!!! I gave them another sputum and they did another skin test and I will have to wait until monday when Lance (my CF nurse) rings with the results....I will worry until then.
Other than that, Im feeling ok and just trying to get back to normal....popped into work before hospital and it was lovely to see everyone!! Im going back to uni today and then going to the pictures with Sirin to see Confessions of a Shopaholic, so that will be nice to see her again!!
Will let you know about the results as soon as I know.
x Lots of Love x
Monday, 9 March 2009
<<<---My rash got so itchy, I stuck my feet in a bucket of water!!
Thursday, 5 March 2009
Until January 2008, I had managed my CF quite well only having to have iv's and come into hospital about every 2 years. However, I must have caught a bad infection and left it for too long as after 3 weeks of being ill, I couldn't avoid it anymore and went into hospital. When I got there, I was rushed straight to the ward, they stuck a line in my arm and shoved oxygen up my nose!! It all happened soooo fast but I eventually found out my sats were only 79 (normally should be about 94 and they put you on oxygen at 93) and my weight had dropped from 50kg to 37kg (in stone I think thats about 8 stone to 5 and a half) in 2 weeks!!
Since then, I have struggled to put on weight even though I eat all bloody day, and have been admitted 4 times in 2008, 3 times for iv's cause of chest infections and 1 for a ng tube to be put down (the worst thing ever!!). For those that dont know - its a tube that is put down your nose and into your stomach so that they can feed you extra calories overnight...well that lasted 2 weeks and then got blocked. We were advised to put coke or lucozade down the tube, because its fizzy, it will hopefully unblock it. Well that didnt bloody work! There was too much pressure so wouldn't go through, it backfired and I got covered in coke and the tube got taken out.
<<<---- the bloody plasters could have blended in abit more!!
So overall, a shitty year and alot of tears and hard work...not just me feeling sorry for myself but because it affected so many other people and it makes me feel guilty (even though I know its not my fault)...also things like letting work down and missing my mates birthday made it harder.
But that was last year and the year ended on a kind of good note...my weight was up to 44kg and I had a good appetite...although the first thing I opened on xmas day was my steriods (I had an infection and wanted to avoid hospital over xmas!!!). I got a wii for xmas from my lovely boyfriend, Scott and the wii-fit which told me I was underweight and weak...yeah thanks!!!
So, that was the worst year so far but im determined to get my weight back up so I can stop being harassed by doctors and dieticians about having a PEG, (a feeding tube which goes into my stomach) and fitness abit better as lung function is in the 30-40% range.
x Lots of Love x