I just wanna live while im alive....

The title of this post for the music fans among you is from "its my life" by Bon Jovi. I've become addicted to bon jovi's hits at the moment! It sums up how I'm feeling quite well, although for the record my other 2 favourites "always" and "someday ill be saturday night".

First of all weekly weigh in, it was a rubbish day to go into town to get weighed as it was chock a block with annoyingly slow children, as its half term week. The weigh in was.....disappointing if I'm honest , despite only being a few calories out on last weeks total I had only gained 0.1kg (peanuts really). Im not totally down in the dumps tho, its still moving in the right direction and I have learnt by now that the whole weigh gain issue is in no way an exact science. But its still annoying when you work so hard all week and all you want is to see the weight going up. Hopefully next week will be more rewarding.

On the good news front I handed in the first essay of my new course. I know I said that the new course would be quite easy (ha ha) but I may or may not have struggled a bit with the first essay....possibly had a bit of a strop saying that I wished I hadn't taken on said course....and generally been pretty annoyed with the whole blessed business. However, I got my mark back yesterday and got a B! My tutor told me that out of the 20 or so he had already marked mine was by far the best :) So I was pretty pleased with myself.

I have been feeling a bit rubbish lung wise this week. Im not ill or anything but my chest has been feeling quite tight on and off which is to do with my hormones at the moment. I've also been feeling quite tired and lethargic.

It is a stark reminder of my state of health right now. I am at a stage where my body is very fragile and it is a scary thought. The fact is, its expected that I will have dips like this and also that I can expect to feel more tired, achey, rundown etc as time goes on. Its nearly 16 months from when I was placed on the transplant list and that is also a scary thought. I've waited 16 long months and after all this time I have had ONE call. It leads me to start thinking seriously about the fact that times are desperate and I do need that call to come soon.

This time of year is especially hard when I see everyone making plans for Christams, Halloween and Firework night. I look on, but cant join in because of the risks of catching bugs added to the fact that I'm too tired to get involved much of the time and my health changes on a daily basis. It's also natural for thoughts to turn to the fact that if the call doesn't come I might not be here to celebrate next year.

This has turned into a pretty depressing post, but I want to assure you all that I am ok. Its just nice to be able to get these thoughts out without having to actually say them and to get them out of my head. I only wish that there was something I could do to help myself and the hundreds of others waiting out there...
xxxx

You've got a friend in me!

I can't put in to words how much all your comments, thoughts, love and support mean to me. Even though most of you didn't actually know what my problems were you were still there to pull me through it. Whenever I logged on last week there was another message of support waiting for me and they have definately helped to get me through the tough times. All I can say is a heartfelt thank you, it means the world to me, you are all fantastic,caring, amazing people.

Things have looked up considerably this week. I suppose that I should fill you in on last weeks events and then go from there. Last week my tummy bug lasted for about 3 days, there was only one day when i actually couldnt eat, the rest of the time i was keeping down bits and pieces, more and more as the week went on.

I obviously knew that I would have lost some precious weight but nothing could have prepared me for what actually happened. After clawing my way up in weight for over a month, I dropped it ALL in 3 days. Literally back to my start weight 42.6kg. I was heartbroken after all the struggle and discomfort it had taken to get there. Even though I knew that if I hadnt gained the weight in the first place I would have been in an even worse situation, it was little comfort at the time.

Despite being really upset, I only had to look around to find people worse off then myself going through pain much, much worse than my own. It brought things into perspective.

I looked even closer for support from everyone. My mum was fantastic, as were all my friends and blog readers. Thanks to everyone who left comments, texted,emailed and had chats with me on MSN. I had a lovely card from a cf friend Emmie and a whole treasure chest of presents from another, everything carefully picked in order to make me smile and cheer me up, huge thanks to Rich and Sally my pirate friends! My lovely friend and reflexologist came over at short notice to try and relieve some of my stomach discomfort and thats not mentioning the other cards and pick me ups that people have brought to cheer me up. It just shows what wonderfully kind people there are in the world.

Everyones kindness has definately paid off. I have worked as hard as possible this week to gain some ground (a massive 17,158 calories for the whole week!) and have put on a kilo in 7 days, which is brilliant and suprising! A real boost to my confidence. I'm now weighing in at 43.6kg so not far to go in order to reach my previous weight. It has been bloody hard but defintely worth it.
Thank you again for your help. Those positive thoughts are being sent right back out to you all. I'm a very lucky girl.
Have a fantastic week my lovely friends xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Low point

I'm not going to write a proper blog today. I now seem to be over my sickness bug but have had a very rough week culminating in a bloody awful day yesterday. I'm going to get more upset if I go in to detail so will leave it there for now. Suffice to say I need all the prayers, and positive vibes going at the moment, as I am feeling depressed, let down and generally so miserable its hard to see the way forward at the moment. Please do your stuff lovely blog readers as you have done before, its very appreciated. xxxxxxx

Uh Oh.........

Ok, I know I said in my last blog that I would update soon, but better late than never eh?! Thanks for all your comments as usual, but in particular to Laura for pointing out I hadn't updated, plus I liked her idea about me being too busy showing off my shoes as the reason for not blogging :)

Anyway, first things first, the exam. It already seems like it was weeks and weeks ago. The examiner came to invigilate and we got started on time, I was quite nervous and a little daunted about 3 hours writing with no break but it wasn't actually a problem in the end. I was very disappointed to open the question paper and see there were no questions on the 2 subjects I knew best and had been hoping would come up, (I may or may not have wanted to let out a strangled whine at this point) but I pulled myself together and tried my best with it. I honestly can't say how I've done, I wouldn't say it was the best exam in the world but it wasn't the worst either. I won't be getting the results for a couple of months yet so I will let you know when I do.
Nothing very exciting has happened this week. I had weekly weigh in on Friday, which I was really scared about in case I had dropped any further. Thankfully it was up 0.4kg which I was very pleased (and greatly relieved) about. I'm now up to 44.2kg which is great.
However, I have had a bit of a problem. I was slightly sick when I woke up yesterday which I wasn't too worried about as its not unusaul for me, but unfortunately after lunch I was repeatedly sick and couldn't keep anything down all day. Even water was difficult. Last night I managed to have some crackers and a small bowl of cereal, I am having to take things very slowly, which is obviously not good news for project get fat. I am hoping that the worst is over and today is better. My guess would be that this is either some sort of bug or the result of an overload to my system. I am feeling tired today because I haven't eaten much and am quite achey from dehydration and the constant wrenching of being sick.
Thankfully my chest has stayed ok *touch wood* and I'm hoping it will stay that way.
Any positive thoughts would be welcome to help kick whatever this is.
Hope your all well and having a good week. I promise to update sooner next time xxx

when the going gets tough, the tough buy shoes

I was a bit disappointed at weekly weigh in yesterday as instead of gaining i had in fact lost 0.2kg. I'm not pleased about it but there are a few reasons that this could be, last week I weighed myself in a different place so it could simply be the difference between scales, It could be down to water retention or flutuating weigh generally and I have still gained 1.3kg in one month,which is a huge achievement that I mustn't lose sight of.

However it does remind me just how fragile the weight gain is. I have been trying hard and even though I have been hoping to let myself eat slightly less the difference in calories from last week when i gained 0.8 and this week when i appear to have lost 0.2 is only 400 cals over the whole week. Obviously this shouldn't make such a huge difference and it doesn't really add up. I have been having awful stomach aches and nausea this week which makes it even harder to force food down but I have been doing it, to get no result is hard to take and leaves me at a loss for what to aim for calorie wise this week. This is why me and so many other CF people hate the topic of weight gain. Please keep those prayers and thoughts coming, I really do appreciate them.

One good point that came out of the day was that I bought some very pretty shoes. I got them to cheer myself up and as a reward for trying so hard this last month. They are very lovely and quite impractical considering the gail force winds and heavy rain but that just means they are perfect "pick me up shoes".

On Monday I have my exam which should be ok but I'm still a little bit nervous! I need to do well to pass and have been revising for weeks, which is saying something seeing as i am terrible at revision. Being the responsible home learning student that i am ( hmmmm...) I have got the magic markers out and made revision sheets with infomation,researchers, theories, and everything! Its probably the most revision I've ever done but thats not saying much. I should point out that I usually do ok in exams but just never revise for them much. There was also the infamous day when I actually forgot I had an exam and completely missed it! I walked in to my 6th form block to have a small crowd rush up asking why I hadn't turned up....?! Ooopps!

Anyway there is no chance of that this time as I am having a home examination. Its 3 hours long so quite a wrench for someone who hasn't had a proper exam for about three years. I'll let you know how it goes.

Hope you're all ok and enjoying the lovely Autumn days.
xxxx