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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