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.

Apr 16, 2012

Reflecting on the Diet after Easter

Easter, the time of the chocolate and the hot cross bun!  And maybe some religious ... stuff.

But what did Easter mean for non-Christians with long lists of food intolerances?

As most people with ME/CFS will know, diet can play a huge role in managing symptoms.  Food sensitivities and even allergies are very common with this illness, and food often needs to be as natural as possible for the body to handle it.

For me, this has meant different things at different stages.  These days I have a few rules I need to follow - mostly going with non-dairy and non-processed food - but when I first became ill, I did a lot of experimenting with food to figure out what was best.

One thing I discovered early was that alcohol was a lot more potent than it had been and my hangovers much more intense, so that was one of the first things to go.  Eight months later, I was on an alcohol free, grain free, sugar free, dairy free, spud free, soy free, legume free, vinegar free, caffeine free diet, as my body was having a great deal of difficulty processing anything not eaten by cavemen.

Meat, eggs, veggies and nuts became my staples and everything had to be prepared and cooked at home.  It was all very simple.  Cheap too, which was good, as I was living on sickness allowance by then.

Eating out was even relatively easy.  Most places serve some sort of steak and veg option.

The problems usually came when eating at other people's houses, because no matter how many times you tell people that you are happy with plain old meat and veggies, most people will feel uncomfortable serving just that to a guest.

But what type of bread can you eat?

You'd have to make it out of almondmeal.

Gluten free bread?

Made with grains.


Only if you home make the stock.

What about dessert?

Fruit's fine.

What about salad dressing?

 Lemon juice and herbs.  Nothing pre-made.

What about mustard?  Soy sauce?  Tomato sauce?  Stir fry sauce?  Garlic marinade?  Sweet chilli?  Hollandaise?  Bolognese?  Chicken tonight?  Mayo?  Miso?  Miso soup is fine, surely!

No!  It's all processed, most of it contains sugar, and miso is made out of soy!

What can I serve you then!?

Just cook a piece of meat and steam some veggies and put them on a plate!

Mpff.  What about coffee?

Herbal tea is fine.

This conversation would happen over and over.  Often with the same people.  I was very easy to cook for, only able to eat about five things, but somehow everyone seemed to find it very frustrating.  People want to do something special when they invite you over, so I became an insurmountable challenge - one people would usually fail by trying to get around it somehow, the biggest pitfall being products labelled 'organic' when that's neither here nor there.

Thankfully, I no longer need that diet.

My options started to open up as my health improved, but I still had restrictions.  Increasingly though, so do a lot of other people, for both health and moral reasons.  I remember going to a home made pizza night with some friends where the pizzas were labelled thus:

  • Meat wheat
  • Veggie wheat
  • Vegan wheat
  • Vegan no wheat
  • No wheat no cheese
  • Veggie no wheat

A bit non traditional, but we were all covered, and making our own pizza dough was fun.

But what about Easter?  Hot cross buns have been one of my favourite foods since I was little and chocolate is something I've never managed to cut out entirely no matter what diet I was trying to adhere to.  Even when I was restricted to the meat and veggie diet, I still made exceptions for these foods from Good Friday to Easter Monday.  The setbacks were just worth it.  And, of course, this year was no exception.

This Easter though, my family gathering had a great menu with a dish to suit any and every dietary need (the guests included one vegetarian, three people with gluten and dairy intolerances and two diabetics).

  • Gluten free veggie pie
  • Dairy free potato salad (honey mustard)
  • Regular potato salad
  • Green salad (dressing on the side)
  • Dark chocolate and/or milk chocolate
  • Gluten/dairy free banana muffins with dairy free frosting
  • Gluten/dairy free orange almond muffins
  • Soy chai rice pudding with meringue (yes, you read that correctly). 

Yum (Though, the diabetics kept the insulin on hand and my heart was beating out worrying rhythms as I went to sleep).  And we had Easter at my place, so I got to keep the leftovers.

Apr 1, 2012

Mind/Body Illness? Give me a break.

Alright.  I've been reading a whole lot of articles about which ME/CFS treatments are best, which treatments are harmful, the political bitchfight over who gets to treat it and the, often grossly ignorant and opinionated, comments that inevitably follow.

I've also had the opportunity to catch the new documentary Voices from the Shadows down at ME/CFS Victoria, which they were nice enough to let me watch in their office, despite it not yet being available to the public for purchase.  (Thanks!)

One thing that has become pretty clear to me, over all this watching and reading, is that the concept of the mind/body illness has got to be kicked to the curb when it comes to ME/CFS.  It's a wishywashy idea that only further muddies the numerous and vague descriptions of what ME/CFS is.  It helps no one.

I'm not saying I'm against the holistic approach to good health and well being.  When used appropriately, it's amazing what nutrition, exercise, massage, supportive counselling and meditation do for the body; especially if the body's ills are initially caused by stress or bad eating habits (and let's face it, most of us have ills caused by both).

For people with ME/CFS the holistic approach can aid in the management of symptoms.  When your body becomes highly sensitised to any form of stress and your digestive system decides to stop accepting processed food, the holistic approach can actually be a bit of a lifesaver.

This does not mean, however, that the term "mind/body illness" has any place in discussions regarding ME/CFS research or treatment trials.

ME was classified as a neurological illness by the WHO in 1969.  Mind/body strategies help people with ME/CFS the same way they help people with MS, Cancer or Heart Disease (just to pick out a few); they keep the body as strong as it can be under the circumstances and the mind thinking positively, but they are not curative.  And they can be harmful if the practitioner doesn't have a good understanding of ME/CFS and its effects on the body's limits.

So let's acknowledge all that, drop the label of "mind/body illness", and get real about finding the bio-medical explanation for why we all got ill in the first place, because right now, this scientifically meaningless label is being used politically to justify the psychiatric model of treatment for ME/CFS, and the negative impact on the direction of new research is massive.

Despite ME/CFS being officially designated a neurological illness, funding for ME/CFS research is current being directed toward a particular school of psychiatrists; the best funded ME/CFS trials so far being the Pace Trials, testing the effectiveness of Cognitive Behavioural Therapy and Graded Exercise as treatments.

To those people sitting back and scratching their heads as to why ME/CFS advocacy groups are protesting so vehemently against these trials when researchers are "just trying to find effective treatments," what you need to understand is that these treatments have already been in use since the 80s with very mixed and sometimes disastrous results for patients.

The researchers conducting these trials have long taken the attitude that there is no bio-medical cause for the symptoms of ME/CFS and so focus on correcting "false" illness beliefs.  Their view is that the illness is an irrational fear of activity which has manifested physically.  It's a bizarre attitude to take with a condition officially designated as neurological (WHO classification code G93.3) and neglects whole areas of study which have yet to be properly explored.  

The Pace Trials were not conducted to find new information on how to treat a largely mysterious illness; they were conducted to justify work already being done and long criticised by patient advocates as inappropriate and potentially harmful.

It's also important to note that the Pace Trials used the Oxford definition of CFS as their selection criteria; the most open and vague criteria available, allowing people with pretty much any fatiguing illness into the group, including clinical depression.  They then systematically removed anyone with genuine neurological symptoms from the trial (you don't need to have them with Oxford defined CFS).

This basically means that anyone with genuine ME, as defined by the WHO in 1969 and the Canadian Clinical Guidelines (now officially accepted world wide), was excluded from this particular trial.

As a result of this, all the Pace Trials prove is that when you use CBT and GET on subjects with a range of illnesses, a good percentage will experience some benefit.

The medical community already knew this.  The trial was a massive waste of money (over 5 million pounds).

And that's what people are really upset about.  Funding.

If the psychiatrists involved were simply using a small percentage of research funding available to look into one of many potentially beneficial treatments for people with ME/CFS, I doubt anyone would object too much. Unfortunately, by adamantly claiming ME/CFS to be a mental, or now "mind/body", illness, they are actively directing funds away from bio-medical research.

Imagine all the money for MS research being diverted away from neurologists and immunologists so that psychiatrists could attempt to prove that positive thinking and exercise was the best medicine.  It's ludicrous.

Money for bio-medical research for ME/CFS generally comes from patients and the fundraising efforts of advocates.  As a result, there is not much of it.

Despite this, over 4000 studies have been done on potential bio-medical causes of ME/CFS, showing irrefutably that there is a biological basis for this illness.  Evidence for a bio-medical cause of ME/CFS is on par with that for MS.  Neither have a single diagnostic test, but there are definite signs to look for in SPECT scans, EEGs, Thyroid Function, MRIs, Heart Rate, etc, etc, etc.

Here's a good page to look at if you want to see the comparison between ME/CFS and MS in detail: The Hummingbirds Guide.

Unfortunately, the ideology promoted by the psychiatrists involved has become very deeply ingrained in the medical, social and governmental approaches to ME/CFS over the last 30 years, and bio-medical findings are being largely ignored at the expense of millions of people suffering world wide.

Dr Nancy Klimas summed the situation up fairly well in an interview with the New York Times in 2009: 

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V."

In 2012 things are improving slowly.  There are studies going on in Norway looking into a drug suppressing immune responses which are getting some decent support.  The XMRV retrovirus theory seems to have been a bust, but at least the publicity around it convinced a lot of punters to take ME/CFS a bit more seriously as a physical condition.

There has also been publicity around a number of deaths caused by ME/CFS, helping people to see how very serious the condition can become, several of which were also the focus of Voices from the Shadows which you can now watch here.

Mar 23, 2012

Defined Through Disability

Just got home from a "kegger" (a type of event that, until recently, I thought only took place in America) where I had a particularly intense discussion with a friend about how people with disabilities define themselves, and it got me thinking.

(left to right) Leanne, Me, Dr. Don Lewis and Stella,
talking about ME/CFS on No Limits in 2009.
A few years ago, before an interview, Stella Young asked me if I wanted a cure for CFS: a question I was completely blown away by.  Did I want a cure?  Of course I wanted a cure!  No one likes having CFS!  The question was absurd to my ears, and I may even have laughed out loud when it was asked.

A few minutes later I had a better idea of where she was coming from.  Stella is one of many people who do not see disability as a bad thing.  Rather, it is simply a part of them.  Part of a whole that no person should ever feel ashamed of.  A whole that has a right to be accepted, and should not be expected to change in order to fit in with someone else's ideal of 'normal.'  Stella herself would never accept a 'cure.'  She is happy and confidant, despite the inconveniences of needing a wheelchair and having brittle bones.  She was born this way, and feels proud of who and what she is.

This conversation prompted me, a few months later, to sit with the No Limits cast and ask them to "raise your hand if you want a cure for your disability."  I raised my own.  All eight people responded quickly, then stared at each other in surprise.  An animated discussion followed where we eventually concluded that, for this group at least, the common factor in those desiring a cure was not severity, level of physical pain or access problems; it was that our disabilities were acquired.

No Limits Cast 2010 (left to right):
Phin, Carly, Louis, Elvira and Carrie
Louis and Carrie had both become very adept at fundraising in their quests to be cured, Louis raising funds for trips to India where he receives stem cell treatment for paraplegia, Carrie for research into Friedreichs Ataxia.  Both have lived most of their lives without a disability and want to go back to the way things were, paving the way for others to do the same, much in the style of Christopher Reeve.

Elvira, Brian and Gary were much more relaxed about it.  "It's just how I am, I don't need to change."  I found this particularly interesting in Elvira's case, as SMA is degenerative.  "It would be nice to stay as I am now and not get worse," she qualified, "but I'm fine like this.  I don't need to be made 'better.'"

Akash had the most intense response, arguing that asperges is not an illness and that a 'cure' for it would be a terrible thing; a way of wiping out a 'race' of people simply because they are different.  Five minutes of research says there are many with asperges who feel this way.

Back to me and my friend at the kegger.

The topic of how we define ourselves came up when my friend mused that he could not understand why people with paraplegia would fight for a cure.  Were they not just denying a part of themselves?  Isn't it better to accept yourself for who you are?

For me, this raised an interesting question.  Is your disability a part of who you are?  My first knee jerk response was 'hell no.'  I don't think anyone should be defined by their disability.  But then, thinking about it, I realised that ME/CFS has fundamentally changed who I am as a person.

Having ME/CFS has given me new perspectives and a career path I did not plan for.  It's increased my capacity for empathy and my passion for human rights.  It's also brought a lot of frustration and depression into my life, both of which impact upon the way I deal with the world.  It's altered my hormone balance, making me more likely to cry and have panic attacks.  I also experience 'irritability' (yes, it's a symptom) when particularly unwell, and I've never been sure if this is a result of altered brain chemistry or just impatience with other people when I have my own problems to deal with.

But does any of this make CFS itself a part of who I am?  Is it now a fundamental part of what makes me me, or is it an external factor which has played a part in defining me?

I've talked a bit about acceptance of disability before, or at least, acceptance of level of ability.  In the case of ME/CFS, I think it's vitally important that family and friends accept your physical weaknesses without applying pressure to get better, because despite there being no cure, there is still an underlying cultural belief that healthy living will fix people with CFS.  It's a terrible assumption as it places blame on the ME/CFS sufferer when recovery does not occur.

Acceptance for my friend at the kegger is a different animal entirely.  The erroneous cultural assumption he faces is that people with cerebral palsy are helpless and incapable.  With CP, fighting for acceptance usually means fighting to make people acknowledge your capabilities, and to provide an accessible landscape on which equal opportunity may be achieved.

In keeping with our conclusions in the No Limits cast meeting, the loudest voices in ME/CFS advocacy tend to fight for medical recognition and research funding, while people with CP (at least in my experience) are more about social inclusion and assistive technology.

In both cases, we still have a long way to go.

For anyone familiar with disability politics, the ME/CFS approach to advocacy represents the medical model of disability, while the CP approach is more inherent in the social model.  In the Australian disability sector there has been a real push toward the social model over the last decade or so, and it's been exciting to see the progressive changes finally taking place as a result.  Tired of being told that they are 'wrong' and need to be 'fixed', people with all kinds of disabilities are now proclaiming that they are what they are and communal acceptance of this is paramount to achieving true equality.  If there is nothing wrong with the person with the disability then it is society that needs to change; to step up and make itself accessible to all people.  This way of thinking increases self esteem, quality of life and access to opportunity for many.

But do we need to subscribe to the idea that disability is part of who we are in order to support the social model?  It's complicated because creating a philosophy that rejects medical intervention and embraces disability pride has given ideological support to the push for social justice.  Seeing disability as a 'culture' rather than a situation makes equal rights easier to campaign for.

But is disability a culture?  Is it something to be proud of, the way we take pride in our ethnicity, for example?  A disability, by definition, is the inability to do things that the majority of other people can do, whether that is physical, intellectual or social in nature.  Certainly it's nothing to be ashamed of and makes you no less valuable as a person, but it makes me a bit uncomfortable to think that people are defining themselves on this measure and counting it a positive thing.  To me, it's a circumstance, nothing more, and circumstances can be changed without rejecting your identity.

On the other hand, would changing people so they are no longer classified 'person with a disability' threaten their sense of belonging to a community?  Would it decrease diversity in our society?  Certainly the collective experience of our community would become less varied.  Is rejecting a hypothetical 'cure' on this basis justified then?  Life is boring without diversity and 'normal' is a silly concept, so I see the merit in this way of thinking.  I would hope though, that anyone actively rejecting a 'cure' on this basis, would also be willing to reject government financial support based on being a person with a disability.  I'm all for self sufficient people of all kinds of abilities if that's what makes you happy.  I'm also all for the NDIS, pensions and ISPs going to people who need them (and there are people who need a lot more than they currently have) rather than people choosing to remain dependant on principle.

If the cure for ME/CFS was discovered tomorrow and I was offered the magic pill, I would take it without hesitation.  So would anyone else I know who lives with CFS.  Unfortunately, due to bad press and lack of a single diagnostic test, we are often falsely accused of wanting to have a disability, or of having a psychological desire to identify ourselves through illness.  It's a common assumption that can lead to derision from medical professionals, maltreatment and, in a few recorded cases such as that of Sophia Mirza, death.  This, perhaps, is the reason I don't have a lot of patience with the idea of disability as part of personal identity.

But what if a cure has yet to be found?   Should we spend all our energy trying new pills and untested treatments?  Should we travel the world hunting for the magic bullet, the panacea that will make us feel whole again?  This is the inclination of many people with acquired disabilities.

My personal view is that while the efforts of those who devote themselves to fundraising and research are admirable, there is always the risk of letting the quest for recovery become an obsession.  I remember thinking, over and over again, for the first eight months that I was ill: "When I get get better, I will ... "  I spent a lot of time obsessively searching google for anything that might help me and was presented with a myriad of expensive and unproven options.

Looking back, I was in denial: the first stage of grief.  The last stage, of course, was acceptance, and accepting that I would probably not recover helped me to live a fuller life in the moment.  In the immortal words of John Lennon: "Life is what happens while you are making other plans."

But do we need to reject the medical model entirely in order to achieve positive social change?  Personally, I think not.  We don't lose our identities by using diet and exercise to increase our abilities, so why should medical procedures doing the same be any different?  We can commit to making our society fair and accessible for all whilst still aiming to meet our full potential.  The models don't have to be mutually exclusive.

Of course, there is still the issue of mind altering drugs used in cases of autism or mental illness (coming back to Akash's comments).  Psychiatric drugs are not necessarily a bad thing in my opinion (I've had too many friends benefit from them to take that stance), but I do agree that the issue of what comprises 'self' is a lot more murky in these waters.

When it comes down to it, I think the identity issue really stems from the fact that we have drawn an arbitrary line in the sand between people with disabilities and people without.  We picked a point on the scale of 'ability' and said "you are all on that side, and we are all on this side."  We did this to identify people who needed support, but it is divisive, creating an us and them.  A 'normal' and 'abnormal.'   And once you've identified as one of us, it's hard to imagine becoming one of them.  Whether it's by acquiring a disability or being 'cured' of one, you feel that something is being compromised by crossing to the other side.

For this reason, I am a fan of the Australian Aboriginal approach to disability, because in traditional languages there is not even a word for 'disability.'  No one can self identify through the concept and no one is 'othered' by it.  Some people can do some things, some people can do other things, we all acknowledge each others' strengths and weaknesses and work together to get on with our lives.  It gets more complex than that of course, and I encourage people to learn more about it, but it's the most inclusive approach I have ever encountered, and I think we can all learn a lot from it.

I'm really interested in hearing people's thoughts on this.

Friend from the kegger?  :)

Feb 28, 2012

I Get By With a Little Help From My Friends

Asking for help is never easy.  We all have to do it from time to time of course, but for those of us with a chronic illness, it can feel like we do it all the time.

I have friends with clinical depression who need support on occasion; someone to unload on, someone to make sure they get to hospital if they need to.  I have friends with vision impairments who need help with navigation and reading menus aloud, and friends with limited motor function who ask me to cut up food and help them into coats and scarves when we go out.

I don't know if they feel the same anxiety I do when asking for practical favours.  I suspect some do.  Others seem not to.  I do know that I generally don't mind being the one to help out.  Who doesn't like to feel needed?

It's when the situation is reversed that I start to struggle.

Lately, I've been depending on my sister and friends to get me to the supermarket (I can't use my Coles-Myer gift cards online and I can no longer walk from the tram stop to my house whilst carrying things).  They've been good about it, but I can't help feeling like an annoying burden when calling.

I got a talking to the other day for not leaving messages.  My friend Erin was quite upset when she realised the missed call on her mobile was there because I'd run out of food, and that I'd hung up without asking her to call back.

While I'm certainly glad I have wonderful friends like Erin in my life, who will go out of their way to make sure I know they are there for me, the truth is, I felt very uncomfortable calling at all, and certainly didn't want the plea to be recorded, because honestly, this is what I hate most about having ME/CFS.  The dependency.  The lack of capability.  The lack of control and the resulting lack of freedom.

I've come to accept that many things - competitive sports, hiking, video games with complex graphics and loud concerts involving strobe lights - are now out of my reach, but independence is something that has been slipping tortuously in and out of my grasp for the last six years.  One minute I'm well enough to support myself, the next I'm back at Centrelink begging the bored girl at the desk to approve yet another claim for sickness allowance.  Faced again with unspecified-term unemployment and physical weakness, I find myself forced to depend on friends, family, medical professionals and, least comfortingly, the government, to get me by.

To make things slightly more awkward, I apparently give off the vibe of a woman perfectly capable of looking after herself.  For two years, I did little more than lie in bed, and even then, people close to me would give me a mild look of surprise when I suggested I might never be in a position to really take care of myself again.  It was a concept which took me a long while to come to terms with personally - I even went through the seven stages of grief over my own self sufficiency - but for others it never quite seemed to sink in.  On the few occasions I really broke into tears over the whole thing, I was met, not with comforting support, but with overwhelmed expressions of panic.  I'd spent so much time appearing to be fine that the distress was just plain unexpected.  On one occasion I actually ended up comforting the person I'd cried to.

Then, of course, I got well enough to go back to work, which made everyone around me feel better about it all, but it also took away the comfort I'd gained from accepting my own dependance.  Independence was infinitely preferable, but hope, even tentative hope, can be a dangerous thing when your health is still so fragile.  It led to three years of me desperately trying to stay in work to avoid feeling helpless again, hoping the new state of affairs could continue indefinitely.  I would regularly go into the office on days when I felt like I was dying of the flu because I really enjoyed being the one others could depend on.  The one who didn't need to ask for help.

It just wasn't sustainable though, and led to my current situation as well as a solid reprimand from my doctor.  I also went through a second, if condensed, version of the seven stages of grief.  (I'm hoping this blog entry represents stage seven: acceptance).

A friend recently told me she was not worried about my mental state, despite my situation.  It was a compliment.  She was telling me she thought me emotionally strong and I agreed with a flippant "yeah, yeah, I'm fine."  Inwardly I was concerned that I really may not be.  The desire to be fine and not to worry her had taken over though, so I said nothing.

But that's really not helpful to anyone, I suppose.  Friends need to know when you need them, and nine times out of ten they will be happier you spoke up.

One of my friends with clinical depression decided on a strategy a while back, to spread the calls for help around.  She is determined not to put too much pressure on any one person.  She has made sure she has a good support network, and she, in turn, is part of other people's networks.  It's an approach that works well.

I now have a housemate, two family members living close by and a large group of friends who I know will be supportive if I just ask.

The trick is to know that asking is okay.

Can't honestly say I've mastered that one yet, but here's to working on it.
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