May 30, 2012

"31 Questions: Low budget TV at its most adequate."

Me in my hard won David M. Green cooking
apron with the real David behind me.
I got a call from from my friend Riyana a few weeks ago:  "Hey Gnomes.  Are you free to be a contestant on 31 Questions tomorrow night?  You get free pizza."

I wasn't sure how free I was, or if I really wanted to be in front of a camera (I'm far more comfortable behind them) but Riyana has put in a lot of volunteer hours for me over the last few years, and there was something very appealing about the opportunity to hang out on a TV set without being in charge.

So that's how I ended up competing on a community television game show, hosted by up and coming comedians and crewed by media students; an experience that was simultaneously heaps on fun, bad for my health and hideously embarrassing.

Arahora - Fergus in Hell

31 Questions is filmed in the same studio where we do No Limits and uses a few of the same people behind the scenes, so it was all familiar territory, and  I was pleasantly surprised to find that the girl doing my makeup had also done the demon makeup on Fergus in Hell (you know you're in good hands when your makeup artist has created masterpieces like this =>>).

My first moment of worry came when we got a little tour of the set and I realised that, as a contestant, I was expected to stand behind a counter for about forty minutes.

I've talked about POTS a few times now, and how ill standing for long periods can make me.  The idea of having questions fired at me in front of an audience whilst feeling that way was a bit distressing.

My second moment of worry came when I realised how hot the studio lights were going to be (heat being another killer for people with orthostatic intolerance).  I have a newfound respect for my No Limits cast who spend whole days under those lights when we shoot in there.

Having had these moments, I quickly decided that I would just have to get on with it and deal with the consequences later.  Hopefully the payback wouldn't be too bad.

The 31 Questions team were shooting two episodes that night and I wasn't in the first one, so after being transformed into someone who looks good on TV, I took a spot in the audience to get a feel for how it went.  It was a pretty straightforward game show format, not taking itself too seriously, and the hosts were genuinely laugh-out-loud funny (always a bonus).

I managed to get myself into that first episode by knowing the name of Inspector Gadget's dog when the contestants didn't and the question was thrown to the audience (you can't see me, but they had microphones on us).

Then it was my turn.

It went okay at first.  I got a few answers in, and hopefully wasn't too lame when David (the host) was trying to joke around with us during the "let's introduce the contestants" part of the show.

The real problems came about halfway through when we got to the round where David described events and we had to buzz in with the year in which they occurred.

Now, I'm going to start off by stating that even before I got ME/CFS, I was a bit crap at remembering dates, so a percentage of my inability to answer these questions can be put down to natural talent.

In addition to that though - and to the POTS which was definitely kicking in by then - this particular round, with facts being shot at us in quick succession, really engaged the working memory, which in people with ME/CFS, is quite impaired.

I had some cognitive testing done a few years ago when I complained to my doctor that I was having trouble reading.  At the time, I was worried that I was loosing IQ points.  Thankfully my intelligence quotient was about where it had always been.  My working memory on the other hand ...

Brain fog. Pic from this page.
When I tried to read, I would read paragraph one, then paragraph two, then paragraph three and I would think: I know this would make sense, if I could just remember what happened in paragraph one ...

Basically, my brain was having trouble holding information whilst also engaged in the task of reading.  Paragraph one was being lost before it could be converted to short term memory.  As a result, I could read the same passage four or five times and still not be able to follow the narrative.

This is what a lot of people with ME/CFS call "brain fog."

So I was having a lot of trouble keeping track of events as David reeled them off; as soon as one was out there the next would follow and soon it was just insensible white noise.  By the time David got to the last facts - the easy ones which should have made the year obvious - my head was in too much of mess to grasp any answers.

Thankfully the next round was movie quotes which is more reliant on long term memory and being a film geek.  I excel at film geekery.

And at the end of the day, I won the game!

My prizes were a box of lindts and a novelty apron with David's happy face on it (apparently other winners are now the cheerful owners of a David M. Green snow globe, a David M. Green puzzle, and a David M. Green board game).

By the time is was done, I was very relieved to be out of there, but also really glad I'd agreed to be part of it.

May 12, 2012

Chocolate and Perfume

Last weekend, my friend Lou and I attended the ME/CFS 20th International Awareness Week Seminar at the Darrebin Arts Centre.  Lou's had ME/CFS longer than me and was one of the most supportive people close to me when I was first diagnosed.  We hadn't caught up in a while, so we decided to have lunch in the city beforehand.

Lunch in the city became churros from the station when Lou's V/Line train arrived late.  We ate them on the train to Darrebin and managed to get chocolate dipping sauce all over the floor, the seat and ourselves (you really can't take us anywhere).

First order of business when we got to the Arts Centre was to get cleaned up in the bathroom.

While Lou had her jeans under the dryer and I was realising that the chocolate had spread to the inside of my tote bag, a professional looking older woman in a bright red jacket came in.  She smiled and laughed with us as we explained our odd state.

The woman in red was later introduced to the attendees as Dr. Kathy Rowe from the Royal Children's Hospital.  There'd been a fair amount of talk about genetic predisposition by that point in the day, so Kathy's work with kids had become of particular interest to Lou (two of her kids have food intolerances which was identified as a warning sign).

From what she was saying, Kathy spends a decent amount of time getting schools up to speed with the concept of pacing.  Having gone through high school with unsympathetic teachers, Lou was very appreciative of this work.  "Well," she said, "At least if I've passed this on to my kids, I know I can send them to the Children's Hospital for help."

Two of the other speakers I'd met before; Dr. Don Lewis who appeared on No Limits with me two years ago, and Dr. Chris O'Callahan who diagnosed me with POTS.  Don's talk was really aimed at educating the GPs in the room, which was good, and Chris was all about explaining Orthostatic Intolerance.

The main thing I got out of Chris's presentation was that Neurally Mediated Hypertension, Postural Orthostatic Tachycardia Syndrome, Orthostatic Intolerance and Neurally Mediated Syncope are all basically the same thing medically speaking.  I'll stick to calling it POTS.

The speaker that really got my attention though was Associate Professor Sonya Marshall-Gradisnik, a Neuroimmunologist who's been studying NK cells in people with ME/CFS.  A lot of the science went over my head, but she's basically found pretty solid evidence that our immune systems really are stuffed.  This research, combined with the Rituximab trials in Norway, means that evidence for ME/CFS being an autoimmune disease is mounting up in a big way. 

Sonya is apparently now getting bigger and better research grants for the work she is doing, which was very encouraging to hear.

A side note on human stubbornness: Even at an event clearly stated to be "chemical free" on the invite, people still wore a vast variety of scented deodorants and perfumes.  

The concept of Multiple Chemical Sensitivity is not that complicated.  This makes the people who turned up all sprayed and dabbed either stupid or cruel.  I saw one girl who had clearly made an enormous effort just to get out of bed to be at the seminar.  If the chemicals were making Lou and me nauseous, that girl was probably down for a migraine later in the day.

On a more positive note, after hearing it repeatedly throughout the day, I now know how to say "Myalgic Encephalomyelitis".  I've only had it for six and a half years; it really was high time I learned to pronounce it!

May 2, 2012

The Problem with Public Transport

National Wool Museum
I caught the train out to Geelong a couple of days ago (a small, cityish area about an hour out of Melbourne).  Geelong is well known for it's beach and its AFL team and lesser known for its Wool Museum.  Seriously.  There's a Wool Museum.  I'd tell you what's in there but they charge entry to that thing, so I went to the beach after checking out the gift shop.

The train ride was dominated, not by Wool Museum patrons, but by hardcore Geelong Cats supporters on their way home from the G or Etihad or wherever the game was.  The carriage was so crowded I barely got a seat.

I'm very glad I did get a seat though, because as a person with POTS (a symptom of ME/CFS), standing for an entire hour on a moving train would have been a special kind of hell.

Before anyone starts asking if saucepans or kettles are also listed amongst the symptoms of ME/CFS, I should explain that POTS stands for Postural Orthostatic Tachycardia Syndrome.  When people with POTS stand still or sit upright, blood pools in our legs rather than circulating to our organs. The heart then speeds up in an effort to keep everything functioning with the low volume it now has to work with.

Some people faint when this happens.  I don't.  Apparently my fainting threshold is high.  Instead of keeling over I just get headachy, dizzy and nauseous as my heart rate rises to stupid levels.  It's my body's way of telling me that I need to lie down now, and it's pretty unpleasant.  The feeling can generally be avoided by sitting with my feet elevated and lying down when the signs tell me to do so.  The longer I stay vertical the longer I need to spend horizontal later on.

If the train to Geelong had had no seats ... I'd have stayed in Melbourne rather than risk the journey.

But there was a seat.  The last seat as it turned out.  Everyone who got on the train after me spent a few minutes wandering up and down the slim isle before settling on finding somewhere to lean.  My favourite of these was an old Essendon supporter who chucked his bag next to mine and proceeded to cheerfully chat footy with friends and strangers alike whilst standing in the middle of the train.

Unfortunately, this was where it got a bit unpleasant for me, because as the youngest looking adult in the general vicinity, I was getting looks from the people around me; it's bad form to leave the old guy standing if you're sitting whilst under thirty.

It's not the same in every city, but in Melbourne there is very definite public transport protocol.  Generally it's first in best dressed when it comes to seats, but if old age pensioners, people with visible disabilities or pregnant women board, the closest young person should offer their seat.  Those who don't stand are to be given the evil eye.

I once had to wear a cast for a month after getting hairline fracture on my wrist and was pleasantly surprised at how much easier navigating public transport became.  I didn't particularly need to be seated as this was pre-ME/CFS and it's not hard to stay standing with a fractured wrist, but the courtesy was appreciated.

Funnily enough, now that my need to be seated is more intense than that of many pensioners and pregnant women, no one ever offers anything.

I have a few options when faced with crowded carriages:

  • Hop on and hope someone will vacate a seat relatively quickly; 
  • Sit on the floor;
  • Explain POTS to skeptical PT patrons when asking them to forfeit their coveted seats;
  • Wait for the next tram/train and arrive late.

I sit on tram floors a lot.  It's a great way to be accidentally kicked or hit in the head with peoples' bags.  It's also a great way to get your clothes dirty at the beginning of the day.

One time, when I had a seat, a pregnant lady got on the tram.  No one got up immediately so the forty-something woman sitting next to me gave me a dirty look, nudged my arm and said "Up!  Get up!"

I didn't have the energy to argue so I reluctantly stood.  As there was no floor space, I remained standing.  By the time we reached my stop I was gripping the closest pole with both hands for support, leaning against the cool metal to ease the pounding in my head.  I was also breathing pretty hard to keep the nausea at bay.  Basically, I looked like crap.  Not crap enough to encourage anyone else to give up their seat though.  For that you need a cast on your arm.

I know people with chronic illness or pain who carry unneeded walking sticks so they don't have to deal with this sort of situation.  It's not a road I've been willing to go down yet, but it certainly has its appeal.

I had no walking stick or cast when travelling to Geelong so I got the obligatory death glares from the people around me.  Not from the old Essendon supporter though.  He didn't mind.  I know this because when it became clear that I really wasn't going to give up my seat, a young mother across the isle offered hers (young mothers are exempt from the standing rule if there is another young person on the carriage, but are obligated to stand before the over forty crowd).  The guy laughed, all good natured and cried "I might look old, but I'm not decrepit yet!"  He waved the woman back to her seat and remained standing all the way to Geelong.

I kind of loved him.
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