Saturday, 31 July 2010

Feeling sorry for myself!

Been feeling very sorry for myself for the last few days. I know I should't but I just can't help myself.
I feel like this has changed my life, and in no way has it been for the better. So I either have the option of being in pain for ever, or to have a massive, and painful operation. And I really want the operation, so being informed I need to wait until October to see my neurosurgeon, has made me feel rubbish.
I can't help but worry about work, If I go back then I don't feel I will be able to do my job well, and I think it will make me MUCH worse. If I don't go back and wait for the operation then my sick pay will run out and then I will be screwed as well. So do I worry about myself, or my money.
It almost feels like people have forgotten I am unwell. And I don't for a moment want people to always be reminding me of it, but I dunno I just wish people would understand what's going on, walk some time in my shoes.
Try and imagine what happens to me all day, every day.
If I stand up my head hurts, if I sit down my head hurts.
If I turn my head then my head spins, my eyes fight to focus, making me feel sick. I feel like I am going to pass out. And this doesn't happen every so often, its all the time, every time I change position, or move slightly.
Every time I cough my head hurts.
Every time I stretch my head hurts.
Every time I laugh my head hurts.
Every time I cry my head hurts.
Every time I shout my head hurts.
Every time I bend down my head hurts.
Every time I lift something my head hurts.
When I walk, I feel like I am walking on bumpy ground. This isn't too bad, but if I am tired then I walk like I am pissed. This embarrass me massively. I hate people seeing me sway and walk funny. A lady was staring at me today. I was walking to my car and was wobbly, stumbling over my feet. She clearly thought I was drink driving. Makes me sad, if I was older then that probably wouldn't be her first thought. So clearly she felt staring at me was okay. =[

I know this just sounds like I am sounding off about how horrid things are. I appreciate that things could be worse, and it makes me sad =[
For everything a reason, so this is only going to make me stronger, but right now, stuck in the centre, I don't know how and it doesn't feel like it will ever happen!

I guess I have to realise that only others with Chiari can accept what is happening. If I had been asked to imagine, last year, the pain and isolation that I am feeling, I wouldn't have been able to do it. I may have thought someone with my condition was laying it on thick. No matter how close I am to someone, if they don't have Chiari they don't understand. As one of my closest friends said to me today "I am fed up of you being ill" Sorry!

Thursday, 22 July 2010


Thought I would update this.
Nothing happened for weeks, which is the reason for the lack of posts.
I have had good days and bad days, I just take each as it comes.
On Monday I received the news that I have been assigned a neurosurgeon, Mr Sepahi at Southampton General Hospital.
I should get an appointment to see him, then an operation date, the pre op, then surgery. Can't wait till I can tick off each on of those. I am getting excited about the prospect of having my skull sliced open, sicko lol!