Tuesday, 27 March 2012

Life in a goldfish bowl

My flatmate has a new fish tank. He still has the bio-orb, or fishbowl as I like to call it. He claims it’s nothing like a bowl but I differ – what do you think? 

Okay yes, it’s more of an orb than a bowl but still… The goldfish bowl used to belong to Him (or strictly speaking His son) when he was still MyMan. It never had goldfish in it being for more pesky tropical pisces.  MyMan wanted to get rid of it and my flatmate wanted a fish tank – perfect synchronism.

My flatmate has recently upgraded to this new (bigger capacity) tank. It looks really sleek and modern. I like it a lot. Along with populating the tank with fish from the bowl, my flatmate bought a couple of new red platys, white sand and stylish plants.

There has been much activity, not all of it good. One of the new fish died, two young’uns disappeared, new ones were born. I feel like I’ve been a (not-so roving) fish tank reporter posting updates on Twitter. 

However, I neglected reporting duties to go to the cinema a couple of times in the last few days and, in further synchronism, I watched films that I feel draw upon modern day concepts of living in a fish bowl – observed and to some extent manipulated by those who watch.

I saw The Hunger Games on Sunday without having read any of the books. Although I vaguely knew what to expect, I was intrigued and engaged by the film and its story and characters. I recommend you see it no matter how old/young you are.

Then last night I had a free ticket to a preview screening of The Cabin in the Woods. Again there was the Truman Show-esque directing with constant manipulation, surveillance and broadcasting of people’s lives but this time I felt laughter was forced, deliberate clich├ęs became unnatural constraints. I am so glad I hadn’t paid. I may be in a minority as many people are responding very positively to The Cabin in the Woods and its horror laced with humour.

Perhaps it is too close to the manipulations of reality TV for me.  Although you would think that was more the case with The Hunger Games (if you’ve read or seen it) which doesn’t lead to wholescale Armageddon.  I will say no more for fear of being accused of spoilers in both films.

I’m not keen on the increase in so-called reality TV with its programmes that I feel are exploitative of human emotion and failure rather than celebratory despite often purporting to be the latter. I am wary of how much we are watched with CCTV almost everywhere. I don’t want to live my life in a goldfish bowl even though I contribute to this by involvement in social media such as Twitter, Facebook… even this blog. At least there may be someone watching if I die.

"Good morning, and in case I don't see ya, good afternoon, good evening and good night!"

Friday, 23 March 2012

Busy busy busy

I've not been a good blogger recently. In fact, I've been very bad.
I have often thought of things to say then forgotten to write them down.
Ideas come and go in the blink of an eyelid or snag of Jemima on a pesky kerb.
I have been very busy - this is not an excuse, a boast or a plea for help. Or perhaps it is all three. I have lost count of how many miles I have driven since my last blog post but I've been to London, Leeds, Oxford, London, Oxford, Nottingham, Oxford, London, Oxford.... yes, I live in Oxford!

Somewhere along the way I have been involved in radio interviews on behalf of the MS Society UK about the not 100% nice NICE decision on Gilenya. It's nice for me that they have agreed to prescribe the Wonder Drug but there are criteria to be met and I don't know if I will fall through a loophole. I am hoping not as I have been taking it for a year and have no intention of ever self-injecting again. That would not be nice.
I would rather not be on any DMD than go through the half hour hell of injecting three times a week. Apologies if Copaxone, Rebif etc etc work for you. I think my tummy has only recently recovered from the Rebif injection site side effects and I stopped using it a year ago!

So NICE have made their decision. As arranged by the press office of the MS Society, I recorded an interview for local radio (from my mobile phone outside a jolly* London pub**) saying what it means to me and how the Wonder Drug has changed my life, which it has. I can come and go without thinking about autoinjector, needles, freezer for cool bag, let alone the time it took to actually do the injection.

Some MSers may not take any meds but I do and my morning cocktail is easily supplemented by an additional capsule of Gilenya.

My second interview was for BBCRadio5 Live. That one I did live from a local radio station. Bizarrely, a friend heard it and emailed me: 

"Put my car radio on as I set off about mind ago (sic) .Heard a distinctive voice and thought that's our [Toots]. Missed the beginning of your interview, but caught most of it. You argued your case coherently and eloquently. Thought you would like to know"

Another friend has donated to (one of) my fundraising ventures. His comment is: "You are SO the female John Noakes. All power to you." - how lovely of therm both. (If you don't know who John Noakes is you probably didn't watch Blue Peter on BBC1 in the same era as me)
All the comments and affirmations are truly heart warming and as I carry my mantle of campaigner, fundraiser and idiot - whoops, daredevil - I am glad to be appreciated.

It is spring.  Time for things to blossom.

I have posted pictures to the MS Trust I also have MS project

I am forging ahead and if you want to sit in despair then please don't bother me - I'm too busy!

*busy
** Urban Bar in Tower Hamlets


Sunday, 11 March 2012

Talking to Myself

I’ve been feeling a bit sorry for myself. What a waste of a sunny day. I used to sing this Carpenters song at castings (when asked for a song not just for the hell of it because that would be stupid):

Now, of course, I can’t run and find the one who loves me, because He doesn’t. Funny that. Not. Especially when I look back at my blog post from September last year: Maybe MS Truth: I cain't say No

And it’s not raining or Monday today. However, I often talk to myself. And I sometimes feel old. I talk to objects and animals too. Sometimes I talk to them to disguise that I’m really talking to myself. Oh dear, perhaps I have really gone mad. Except I think I’ve always done that talking to myself/objects/animals thing.

I don’t think it’s particularly self-motivational though that can be a side effect. I was trying to describe some of my MS symptoms to a friend recently and I kept confusing the words ‘symptoms’ and ‘side effects’. Sometimes it’s hard to know which is which when you take lots of drugs. Perhaps this blog, this form of talking to myself, is a symptom of my MS. I didn’t write it before. Perhaps it’s a side effect of the condition as without MS it would have no rhyme nor reason.

Sometimes I talk to myself in public. I probably shouldn't. Sometimes I do it in public on social networking sites even though people wouldn't necessarily know. Sometimes I forget it's effectively myself I'm talking to when I retweet or comment on status update posts - a by-product of having more than one Twitter and Facebook identity. I'll try not to comment on this blog post or re-tweet the post announcing it on Twitter using one of my other Twitter identities although, of course, you are welcome to do so. Confused? Think how I feel!

Just to be clear – when Talking to Myself, I do not think of this Eminem song even though some of the lyrics might seem apt: Eminem Feat. Kobe - Talkin' 2 Myself lyrics
You’re lying to yourself, you’re slowly dying, you’re denying
Your health is declining with your self esteem, you’re crying out for help

Right enough of this – the sun is shining and I need to get out. Yesterday I watched The Artist at the cinema. It was beautiful and moving. Today I might go to see The Best Exotic Marigold Hotel. Or Rubber Gloves as I’ve come to think of it. Get those marigolds on.

Tuesday, 6 March 2012

Losing it

I lost one of my pills dockets the other day. I also lost the ribbons which denote which is the front and not the back of my bag. I’ve lost so many things.

I did not lose my parents. My mum died. My dad died. That’s not the same as losing but it is a loss. A loss that I grieve for. Particularly on my youngest nephew’s birthday which is the same date as the anniversary of my dad’s death – 17 February.

It took a long time for me to be able to say my mum or my dad is dead. It sounded so final. People would offer condolences for my loss but I always thought – she/he’s not lost. I know exactly where she/he is, or rather I know exactly where both my mum and my dad are buried. Where they are now is perhaps different. They remain in my heart and in my thoughts. Especially when I lose things or things seem to disappear or mechanical/electrical things go wrong. I think my mum or dad are playing tricks on me. They’re reminding me to think of them. And I do.

What else have I lost? Well, I’ve lost my ability to remember things. My ability to remember my diary. I used to be able to keep a whole tour schedule in my brain as well as having it written down.  I’ve lost my sense of spatial awareness and geographical awareness so I don’t remember routes. I will arrive somewhere and, when I come to leave, I can’t remember whether I turned left or right to get in and therefore whether I should turn right or left to get out.

I hate losing things but I’m not losing my sense of humour. I’m still remembering that there’s more to life than little things and I’m just going to carry on as long as I can. I’ve not totally lost the plot. Now, which way do I go from here?