Rain, rain, go away!!

Happy Friday everyone!

It's raining in London, been like this for the last few days now. So much for the barbecue summer. I am reluctant to go out in the rain, mostly because my crutch slips and I always end up falling spectacularly. One time I wore white when it rained, I fell and the kind woman who helped me up wore white too! At first I thanked her for her kindness but declined her help because I didn't want to get her top all dirty. But she insisted. Bless her. Just as well I didn't have far to go until I got home as I was covered in mud water, along with a few cuts.

Some people can be so nice. They would literally go out of their way to help you. I would hope that I am one of those people. Manners are so hard to come by these days. I am lucky if I am offered a seat on the tube or the bus. One time I had an elderly woman offering me her seat on a packed bus. Of course I couldn't take the seat off her. Then the woman sat next to her begrudgingly gave me her seat.

A good friend of mine once told me that I should've just asked people for their seats as most of the time they probably just didn't see me. I am not so sure. Yes, some people are that engrossed by their books, music or conversations sometimes that they are blind. But more of these people choose not to see me, as their guilty faces coyly turn away.

Ignorance some may say.

So now, I choose not to go out in the rain. And I definitely avoid rush hours and busy places like a plague.

Long time no see!

Hi there, apologies for the silence. It's been a while since I last wrote anything! No excuses, just been a bit crap.

But have I got lots to tell you!

A lot has happened in two years. I am still standing, and have been MS relapse free for the last three and a half years. The drug natalizumab (Tysabri) that I was put on in Nov 2007 has been working wonders. Not one relapse since, I have to say I have nearly forgotten what it fells like to have a relapse, although I am still living with the disabilities of my previous relapses. Definitely not bad going though considering I was relapsing badly every six months. So no complaints there. I have to walk with a crutch all the time now, balance is still my main problem and I still fall often. Bruises, scrapes and cuts come with the territory, but no broken teeth or stitches like before now. I still get tired easily, I can only really do one main thing in a day before I become non-functional.

Life is so quiet now, sometimes I don't quite know what to do with myself. Bar hospital appointments, I go to the gym now and have lost 10kg in two years and gone down two dress sizes. Great news, I feel better for it but now I just can't afford to buy new clothes and am forever regretting chucking out all my old clothes! Man, did I have some gorgeous tops, handbags and shoes. Well, there's nothing I can do about the shoes, as high heels are still a definite no no. I still have a few kilos more to go before I am back to the weight I was before I got ill.

OK, time to rest now. I promise I will write soon!

A Day in the Life of... Me!!

Sorry haven't written for ages lately, but you know, people to see, things to do, booze to drink and junk to eat!

Tell you what, it's not easy being a lady of leisure, especially if you are like me.  It's not as if I can just jump on the tube and go shopping whenever I feel like it.  People are cruel.  People rushing to get their trains during rush hour are even worse.  I once had a lady who brushed up against me trying to pass.  Not only did I nearly fall over, she had the cheek to look back at me with the dirtiest of looks as if trying to say that I had lost her precious 10 milliseconds and now she was sure she would miss her train.

But anyway, back to my day:  I wake up around 6.30-7am.  Then I take my morning medication (16 little pills that allow me to have some kind of normality), then I pass out from the sedating effect of my anti-spasm drug.  It's now 9-10ish, I would then turn on C4+1 and start watching Frasier, Will and Grace, Brothers and Sisters and Without a Trace.  This then leads me to the one o'clock news, then Neighbours and Diagnosis Murder.  And if I am really sad, I might even watch the Channel5 matinee film.  Then after all this exhausting activity, a nice long nap is surely warranted.  After my nap, I would have dinner and back to the TV life I so cherish until I fall asleep from my evening medication.

I do of course have my busier days: hospital appointments.  There are around 3-4 different appointments I have to content with each week and boy, are they knackering!  For instance, it took me 25 minutes to walk 1K at the physio last week.  I am tired just thinking about it now!!

Well, onwards and upwards!!

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A mini Red Adventure

Clark took me out for a couple of rides last weekend.  

One was to a meeting at Bar Italia in Soho for scooter enthusiasts, scooterists apparently as Clark just rightly corrected me.  It was really nice to see so many classic scooters.  We then went for a ride up to North London, it was like being in Quadrophenia, was definitely a bit of a mod thing as lots of the scooters had Union Jacks on them and of course the riders had the appropriate mod haircuts.  I of course wore my red helemet and red coat.  We drew quite a lot of attention on the roads as you can imagine since so many scooters revved up quite a bit of noise.  We then went for pie and mash, very mod indeed.

A very nice day out, what an adventure!

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I love my red helmet!!! :-)

Just came back from my first ride, was so much fun!!

It was even better riding in the sun, felt so free, although I was a little bit anxious about falling off at first, but it was fine. 

Will need to get a protective jacket soon though just in case I do come off, which hopefully will not happen, as Clark is a very good rider, he even got a minor fault for driving too cautiously during his test!!  So I am sure I am in very good hands.....

Cool rider

Woo hoo, Clark has finally passed his bike test!!  I can finally break into my brand new bright red helmet, given lovingly as an anniversary present; allbeit two months too late!

Live life dangerously, and why not?!

Can't wait! 

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How to lose friends and alienate people...

My boyfriend and I watched the film last night. It was alright, the storyline was irrelevant to the title really. Let me tell you how to lose friends and alienate people properly: I am doing it first hand right now.

Ever since my diagnosis nearly five years ago, I have turned from a happy, energetic, fun-loving girl into a miserable old git who don't do anything. It's like what Cheryl Cole said about her trek up Mount Kilimanjaro for Comic Relief: She moaned so bloody much the first three days that she got so sick of hearing her own voice, and that was when she realised she had to just get on with it!

I am tired of moaning and being miserable too. I guess I just have to get on with it and try to be happy again too. I know it can happen, but my perception of happiness is so distorted, because I want to be happy as a normal, healthy person, but I can never be happy like this, because I am not normal and healthy.
I have to do things within my limits and be content with that. This I have to learn.
I have been trying so hard to be normal, failing miserably, hating myself for not being able to do it, getting more and more depressed, and shutting myself off from everything, especially all my friends.

I don't think I have lost my friends yet, but I sure have alienated myself from them. I don't talk or see them anymore, not through not wanting to and definitely not through them not trying. But it's hard. I am not the type to open my heart, I hate talking about myself and my feelings, because I hate feeling weak and vulnerable. I have had to be strong and independent for so long when I was growing up that having to depend on people feels wrong. It makes me feel like a failure. I know I am talking absolute crap, enough years of therapy have told me that. But change is never easy, especially not for someone as stubborn as me.

My boyfriend gave me a good talking to last night. Told me to my face what I was doing and how crap I am being, how I should stop feeling sorry for myself and just get on with it. And right he was too. He tries so hard, god bless his heart, and I love him to bits for that. And I know I am just not the person he met two years ago. But shit just keeps coming my way - I was made redundant, then lost my funding for my PhD, suffered various relapses, can hardly walk now and going blind. I am a tiny shadow of my old self, I sometimes wonder why he is still with me, he's a saint for doing so. I don't know what I would do without him.
So I forgive him for making me cry myself to sleep last night......
But will my friends forgive me......?

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When it's over, it's over.....

A quick update before my drugs take effect and I pass out.....

My new year's resolution is not going well at all, and it's only March!!

My PhD funding got terminated at the end of January, due to my lack of progress, so they said. Lack of progress - surely they knew why I was lacking in progress?!!  The university had covered their tracks so well that I don't think I am able to sue for discrimination, and it was blantant discrimination.  My ex-supervisor has been a complete bastard and a coward.  He didn't even have the guts to tell me face to face or by phone.  Instead he just wrote a pathetic letter.  

They knew I had MS.  They knew I was suffering from depression, when there are days I can hardly get out of bed.  They knew I have suicidal thoughts.  They knew I was going blind and can't read very well.  They knew I have memory and concentration problems.  They knew I suffer from severe fatigue.  They knew it all, because I had told them right from the start.

My dream of being a PhD is no more.  This was my second chance of doing a PhD.  Right before I was diagnosed nearly five years ago, I was applying to do one.  Obviously that ended.  I thought I could finally fulfill my ambition with this PhD, but that ended also.

Is this the price I have to pay for having MS....?

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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!