Thursday, 26 November 2009

x Having a rant.... x

Right where do i start....erm.....

Tuesday was a looooooong day and we was up the hospital for an appointment at half 9 to see the pre-assessment people to talk about my portacath operation. I was asked all the usual questions about my health and told about the procedure which i feel not too bad about but that doesnt mean i want it lol. I am pleased to say that i didnt have to have the blood tests as i had my annual review bloods and lots of tests done when i was in hospital in September and they are still ok to use so yay!! Had to have MRSA swabs and an ECG monitor as my heart was racing and mummy took a picture.

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

x Dancing is the best physio!! x

Well, as stated in my last post i went on antibiotics and they made me a very ill little girl :(
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

x Pre-assessment appointment is here :( x

Havent really had much to write about i dont think as i havent done anything that interesting!! If you want me to write about tidying up or ironing or sitting on my bum quite alot then fair enough but i wanted to wait till i had abit of news which i know do!!

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:

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

x Covered in jelly!! x

The weekend was a good one!! Lance's birthday was good and I had such laughs with mummy, jen (my dieticain) and Hannah - my mate who also has CF - cross infection - blah blah blah :) It was in a hall/bar which is based in the hospital so i can offically say i went for a night out at the hospital ;)

A few pics from the night - check out the newly blonde hair!!
Me and Jen - my dietician who drinks like a fish!!

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 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 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

x Blonde-ness and Ebaying x

My hair is VERY blonde and i am still getting used to it but i do like it!! Went out after getting it done for a meal with Daddy, my bro, Scott and many others for Lisa (my dads girlfriend) was a late meal so i was bloody starving by the time it came so felt sick when i got in but it was worth it and very yummy!!

I got a letter from the vascular - i hate that word - department about going for a scan of my arteries ready to have my port put in and i cried when i opened it...dont ask why...i dont know myself but i think its just because its actually happening and im nervous anyway. The appointment is for next tuesday and i have clinic that day too so will be up the hosp most of that afternoon but Daddy is coming with me so i should be ok.

I have decided to make some money on Ebay. We have a shed full of stuff and keep meaning to do a bootsale but its winter now and most of them start too early so i figured this was an easier way. I have sold a few things on Ebay before so it should go well and means the house will be clutter-free in time for xmas, and then we will refill it again lol :) I have put 3 things up so far and went to go to the shed today to make a start and couldnt find the backdoor key - i have looked everywhere and mum has now looked to and its still missing so thats my Ebay plans on hold for a while!!

Nothing really to report health-wise. I am still off of antibiotics and it has been 1 and half weeks since finishing the oral course so im pleased. Cough is not too bad so today I have had thoughts about attempting the gym next week. I hope to try for monday in the day as there will hopefully be less people and then i have something good to report at clinic on tuesday :)

Am staying in tonight as Stephie is not too well so we are not going out as planned- GET WELL SOON! Scotts mum and dad are away so we are going to have a nice night in with the doggies, a takeaway and a film....oh that reminds you like my creation?? Me and Scott were highly bored the other night.

Monday, 2 November 2009

x Seriously need to stop shopping! x

God!! Was just thinking what I have been doing all week and the answer is shopping!! Now this is obviously good, as I am a girl and love to shop but bearing in mind i am now unemployed, this means the money is not being replaced!!! I went shopping with Stephie on wednesday to lakeside which was so funny - i was trying not to laugh too much due to coughing fits and we ate so much at harvester im surprised we made it round the shops!! I have also been shopping at bexleyheath 3 times and bluewater on saturday night with mummy!!
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