New Year Resolution 2009

New Year Resolution 2009:

Start living again.

No more negative attitudes towards life.

My life cannot possibly be any worse than 2008. 2008 was a shit year for me, health wise and career wise.
I had to use a walking stick permanently, lost my job, took out ill health retirement.

My only blessing was being able to change fields and start a PhD, but that turned out to be a complete disaster as well.

I am not able to do it. My dreams of being a Dr and an acaedemic is floating far behind me. I lack the energy, the eyes and the determination.
Yes, I am going blind. Thanks to my MS, my optic nerves are damaged. Words are floaty when I read and I can't focus.

I was given a Kurt Cobain book for Christmas. Loved it. I used to love Nirvana. A copy of a hand written note in the book: "I hate myself and I want to die." reflected how I feel. I cried. I want to die but I am too much of a wimp to do it myself.
This is my depression talking, I know this much. But when am I able to snap out of this black hole?

I promised my boyfriend that I will snap out of it. I am not the same girl he met me two years ago. I was an easy go lucky girl, bubbly and fun. I want to be like her again. It pains me that I am so sad now. And I know it hurts my boyfriend too, because there is nothing he can do. He tries, but it's hard for him. I am so thankful that I have him. He keeps me on the straight and narrow, otherwise I am certain that my black hole would be much bigger.

So, 2009, I will try my damn hardest to be happy.

No promises though....

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All I want for Christmas...

I hate Christmas.

Coming from an Asian background, we never really celebrated Christmas when I was a kid. And as I grew up and started not going back to Hong Kong for the holidays, I would spend Christmas with my friends' families, depending on who wouldn't mind being intruded that Christmas. Don't get me wrong, I was always made very welcome and loved, and I always had a great time. But then you always had that niggling feeling in your mind thinking that you didn't really belong there because you are not family.

This year, I chose not to celebrate it at all and be a complete bahumbug. I got numerous cards still though and presents from my boyfriend and one from his parents, which was nice. I hope they are having a lovely time. I chose not to go up to his parents' with him. I just wanted some time on my own. My parents are with my brother and his wife. I was half tempted to go to his yesterday, but a bad fall and twisted ankle made my mind up. I am alone, on Christmas day, with a bloody sore ankle.

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Little Miss Whoops

I always wondered why Mr Bump was my favourite Mr Men character when I was growing up. Now I know. What bloody irony and I can honestly say that I fit the female equivalent, Little Miss Whoops, pretty perfectly.

After numerous falls, some big and many small, two broken front teeth, bruises, scars and bruised ego, I finally realised that I can't fight this anymore. I must learn to live and embrace what I have. The dreaded two words: multiple sclerosis. Or can I...?

I had a massive argument with my mum this evening at dinner. Both of us shouted, cried and shouted some more. My poor dad was stuck in the middle, as always.

Mum and I are two peas in a pod, both stubborn as hell. She asked me why I am in a bad mood all the time, don't listen to her and that we are not close. Out of frustration I simply asked what she had expected when she sent me to boarding school when I was ten and had to grow up quickly and fend for myself all these years and be completely independent. She surely can't expect me to need her now when I hadn't needed her for the last 20 years?

I think this broke her heart. She called me ungrateful. I tried to explain to her that I wasn't ungrateful and that sending me to school in the UK was the best thing they could have done for me. She can't expect me to be her little girl anymore. I had grown up. I am ill and she can't fix that.

But god does she try. She prays to every chinese god possible, cooks me funky chinese food that she thinks may help, fusses over me like there's no tomorrow. She cries at every cut and bruise that I get, but little does she know that her fussing frustrates me, makes me feel useless and needy. And her crying makes me feel doubly worse. Because she can't fix me and I can't fix that. Now I don't tell my parents anything, especially not my mum. And she wonders why we are not close....

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And the drugs don't work...

The number of pills I have to swallow every day just keeps rising. Fifteen of them in the morning at the last count. White, pink, blue, round and rectangular ones. Just as well I don't have a problem swallowing pills; one of my friends would rather have her eye gorged out than swallowing pills, probably why she was never good at hangovers.....

I was prescribed a new anti-spasticity drug last week after seeing my neurologist. I started taking it on Monday. I think it's doing the trick as I can bend my knee a bit easier now, but only time will tell. But I tell you the side effects are not something that you'd want. Dry mouth, to the extent that I can't talk (which might actually be a good thing!) and sedation. I passed out all afternoon for the first two days.

My neurologist wanted to prescribe me some other anti-spasticity drug but I refused as it makes you put on weight. You might think me vain. I probably am. I have put on two stone since I became ill. It pains me to look at younger photos of myself. I was thin. Well, not thin thin, but healthy. I used to go to the gym four times a week and I felt good about myself. Now I can barely pick my feet up on a bad day. I missed running on the treadmill and breaking a sweat. Now I break a sweat just by walking out of my front door! The drugs that I take make my body temperature bonkers, I call myself menopausal. I have not worn my winter coat for two years. I miss wearing my nice thick coats and jumpers....

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Ever seen a blind man cross the road?

Something happened to me this morning. I was on the bus on my way back home from the hospital after yet another appointment. It was just like another day, people went to work, and I went to the hospital.

A blind man with his gorgeous black labrador guide dog got on and asked the bus driver if he could let him know when the bus got to Sainsburys so he could get off. He stood, waited patiently as the bus strolled along the roads of South East London.

The bus stop where he was getting off was my stop too, so it just came naturally to me to offer to walk/guide him there. It was about 200 metres out of my way, I wasn't having a very good day, my legs weren't functioning properly, I had already fallen in front of the hospital earlier and I was walking with a crutch. It could have been so easy for me not to say anything and just get off the bus quietly. Afterall, I was just as disabled as him!! But I really wanted to help and it seemed to me that he really needed help. I just wanted to do what little I could.

He was so gratful. I took him there, got a sales assistant to help him so he could get everything that he needed. He said thank you, shook my hand and we parted ways.

The extra 15 minutes of my journey home didn't change my life; but I felt so humbled that I was able to help someone who needed help more than me. I always thought that having multiple sclerosis would be the be all and end all for me and that I was never going to be able to do anything normal again.

And it's right that nothing is normal now, but I realised after today that things can be as normal as can be, I just have to know my limits. What's normal to me may not be normal to anybody else. So what does it matter really?

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And then.... There was something called Multiple Sclerosis.....

Hi there, my name is Jamie and it's my first time ever writing on public space. A bit apprehensive, as I doubt that anybody would have any interest in what I have to say! But, I am kind of in a bad place right now, and this should serve as an outlet for me......

Right, a bit of history about me and then it should soon become clear why I am so sad.... I was diagnosed with relapse-remitting multiple sclerosis four and a half years ago at the age of 25. It was a shock and a blessing at first as the doctor thought I either had Motor Neuron's disease or MS, so having MS would surely be a lot better than having MND....!

But then reality soon hit after the diagnosis of MS was confirmed, I was in hospital for ten days, pumped full of steroids and bloated like a balloon. The steroids made me a lot better, and I was able to walk again and the prospects of having MS didn't seem so bad.

Life pretty soon returned to semi-normal, I was off work for four months but still did stuff on the computer for work at home. Having so much time in my hands at home alone didn't turn out to be the best thing, as your mind starts to go crazy and you ponder on the why and how...

People say facing a life changing trauma is like going through the five stages of grief: Denial and isolation; Anger; Bargaining; Depression; Acceptance. And did I go through them! I think I am still going through these five stages all at once., and I don't know when I will truly reach the acceptance stage. I have definitely come to some kind of acceptance, as it took me 2 years to be able to say the words 'multiple sclerosis', and now I can tell people that I have MS without wanting the world to open up and swallow me whole.

So, four and a half years on, 7 relapses, endless drugs and hospital appountments, I am still here. Allbeit with a lot more struggles in life, but I am still here.

If you are still not bored after reading this, you might want to check my blog out once in a while, as I have lots more to say!! :)

Oh, and P.S. I am a girl, just have a boy's name!