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!!

.

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!

.

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! 

.

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......?

.