The dawn of a New Era

First off, I have some good news!

I got my appointment letter through to go down and see the team in London! YAY finally getting somewhere again. Its a week tomorrow, so its really soon (which is a good thing) Now just need to find some cheap transport and accommodation. So excited.

I dont know if I should email the surgeon I emailed originally with some crappy excuse like asking him if there is anything that I need to bring to my first appointment, as just a way to make sure that he definitely knows that I am coming down. I am pretty sure he does, but there is still that slim chance. And I dont want to travel all the way down there and it turn out someone in admin made a mistake and there are only junior doctors their and not who i need to see or something.

I was going to post about getting this appointment when I first received the letter. However as it was only a few hours since my last post, I decided I would wait until the evening when I usually post and things had settled in a bit a more.

But then (another) encounter with my mother put me in an absolutely foul mood. I had to get it out, but I was reluctant to post it on here as all I seem to do is moan on here these days, so instead it ended up typed out on my ipod. This is from my first post on this blog:

Trying to stay positive

I need somewhere I can safely rant and moan.

At the moment I seem to be whining a lot and obviously I dont want others to get bored of me. I dont want to be that person that is constantly complaining. I know i need to make the most of things.

Originally I wanted this to be a place where I would be positive where possible. When my health took a sudden turn for the worst, I felt alone. I was in a ward where all the patients where at least 30 years my senior and I know numbers dont matter, but you know, would talking to someone that much older get it when you said you dont want them to perform this potentially life altering procedure because people might look at you funny? Or would they say you lucky to have the chance ect. Since I was stabbed at 16, my life has been a mass of hospitals and appointments and missing out on things. While my friends where all off to party and get drunk in Ibiza, I was in hospital with pneumonia, when they where all meeting boyfriends and doing day long shopping trips for clothes and make up and I was learning to walk again and having my mum bathe me and my dad carry me up the stairs.


I felt like I had missed out on so much and I guess I just wanted someone who could relate, maybe to speak to someone who had gone through something similar and come out the other side. I was also silently hoping I was going to find someone else who had similar problems as I did and they where marcously going to turn around and say, no your dont have to have any of those surgeries there is a magic cure that will fix everything.

But after searching and making many posts in vain, I didnt find anyone. The closets comparisons I could find where people with CF, but even that was different. People with CF seem to exist in a very tight knit community and dont seem to readily accept people with completely different problems that might still be just as debilitating. And even if they did, can you really compare my problems to theirs? Yes they get sick and have trouble breathing, but in the end it only really goes one of two ways. They either end up with a transplant so things improve for them or they die. I didnt have the prospect of things getting better and couldnt compare my issues with someone dying.

So I started this blog. And it was going to be about my journey through this and what I had found.
But before my health did go downhill, I suffered from depression, when I got ill the depression kind of took a back burner, now things are settling? Well the depression is coming back in.

So I dont feel that this blog is a true record of what is happening to me. I think the depression is dragging things backwards and downwards. Do I really want to potentially have someone struggling like I was to read this and see all this negativity that has nothing really do to with the problems that originally sent them looking for this info?

So I am thinking long and hard about splitting this blog into two. One to deal with physical health and one to deal with mental health.

But are the two really that separate? Would I still be depressed if I didnt have any problems?

And the answer is, that I dont know. I just really dont know anymore. Any views on this are greatly appreciated. Have you had enough of my depressive ramblings? let me know.

Im unsettled. Im pacing, not concentrating on anything. Maybe its time for change? Ive had this blog theme since day one (6 months ago) Is it time to freshen that up? Or has that too become part of me and my blogging.

I get a fair amount of views, yet I cant believe people actually read what I write. I do get some comments, but not loads. So who does read it and what do they really think.

Sorry this is so long. Guess im just *shrugs*... mad as a hatter?

Please

I keep trying to work on this stupid assignment for networking. Not only is it one of my worst areas of computers, but it is taking me twice as long as it should due to having to research everything as I missed the lectures with being stuck in hospital. I dont understand half the concepts and its just becoming annoying. That and the fact that right now I have the concentration of a fish. Im hoping its the steroids that are making me like this. I get to stop them completely on Sunday. So we will see how i feel then and of course if my blood pressure comes down.

Mum went shopping on her way home from work today so I sorted my own dinner. I was in the living room when she came in and I had just finished my yoghurt I was having for desert. I started telling her that we forgot to put the baby tortoise to bed last night as he had dug down in the soil and we forgot to undig him and put him in the bed.

She then proceeded to lecture me on how little I have to do and I still cant manage to do the one thing I was suppossed to do right. That I never do anything for the torts (felt like saying yeah, Ive just been showering the baby twice a day and doing his eye drops, that I have never once seen you do!) Which then lead on to the usual lecture about how lazy I am and how little I do, (all this was while she was loudly unstacking the dishwasher and slamming pots and pans around) How little I did yesterday. I would have washed up, but she had already said she wanted to stack the dishwasher. And during the day I was working on my assignment. Just grrr.

I have really low self esteem as it is, but when mum starts putting me down, what little esteem is there just vanishes. I find myself fighting to hold in my tears. I could never cry in front of her, that would be a sign of weakness, it would let her know that she has won! the last time I lost control and cried in front of her was when we were on holiday and she was being awful to me and bethany. I felt so sorry for Bethany as she had never experienced anything like it before. And I started crying and couldnt stop. It went on for a good few hours, even when i got called out to eat tea. To which she told me I should be ashamed crying in front of Bethany. Gee thanks mum.

This song kinda sums up a lot of how I feel right now.


In more positive news, I went two whole days without using my nebuliser. I had to use it this afternoon after coughing my guts up and I should probably use it again now, but dont want to wake people up. But two days is good. Something must be improving. Even if I still cant breathe. Felt breathless all day today for no real reason. Dont feel blocked up, but just moving around making me feel like im lacking oxygen. Not a nice feeling. And yes I have tried walking slower but it far to hard. I cant physically make myself walk slower.