Dec 4, 2011

The Yoyo Effect - Body Image and Chronic Illness

After reading a fantastic Q&A with Catherine Deveny on the Mamamia website about feeling fantastic at size 16 (the woman is awesome so check it out if you have a minute), I'm going to jump on the bandwagon and do a post on body image.  (Or maybe trot after the bandwagon as official 'Love Your Body Day' was apparently on October 19.)

Now, I'm just going to come right out and say that "love" is not a term I've used in conjunction with my own body in over 6 years.  On many levels, I feel my body lets me down, being sluggish and foggy and achey with a slow metabolism, crappy circulation, migraines and a tendency to just give up at inconvenient moments.

In fact, over the last 6 years, I've often felt that my body hates me, and that this is very unfair because it has no justification for doing so (I ate veggies and rode my bike growing up!  What does it have to complain about?!).

Frustratingly, I'm not even allowed to hate it right back.  On the contrary, I have to be very nice to my body, giving it healthy food and expensive supplements and lots of rest; protecting it from chemicals and vigilantly watching out for its every want and need.  It's like a demanding infant that always cries and never sleeps.

Yes, I'm aware dissociation from and personification of one's own body are somewhat unhealthy.

The issue of physical appearance, of course, cannot help but get mixed up with these negative feelings.  To me, the body is a combination of how you look and how you feel, and sometimes the two mingle.  No one feels attractive when they have the flu.

All that aside though, for me, as I guess it is for many women, the issue of body image has always revolved around weight.  According to many commentators, I have the media to thank for this.  Personally, I'd also attribute it to the obesity epidemic, parental expectations and being teased in the playground - but let's stick with the media for a moment ...

Ad campaigns, not so subtly telling us to shed kilos here whilst surgically adding them there, are inescapable.  Images of emaciated women are promoted in ads selling everything from cars to clothing.  Apparently, the best way to sell to a man is to stick a scantily clad stick figure in the general vicinity of the product, while the best way to sell to a woman is to attack her self esteem with unattainable ideals.

Backing the advertising industry right up is Hollywood, which certainly does nothing to dispel the idea that protruding hip bones are attractive.  It started with Audrey, continued with Twiggy and now extends to 95% of women on the red carpet at the Oscars whose bodies appear more plastic and paint than actual flesh and bone.

Don't even get me started on the fashion industry.  We all know the deal there.

In my case though, in addition to this universally experienced pressure to look like Keira Knightly (who is, ironically, attacked in the media for the crime of being fine boned with a fast metabolism), I found that once the CFS kicked in, I had much more pressing reasons to desire a waif-like figure.

People with CFS will often tell you that our bodies feel heavier than they really are, as though bricks have been attached to our limbs.  It's not a pleasant feeling, and in the beginning, the idea that loosing a chunk of weight might ease the daily struggle was one that I clung to.  There was also a vague idea that a smaller body would feel less ill, as though nausea was somehow proportional to mass: the less of me there was, the less there'd be to experience the symptoms.

Loosing weight turned out to be relatively easy as my relationship with food was quickly turning sour.  I had yet to work out the sensitivities and ended up cutting out entire food groups in order to avoid cramps and headaches.  Weight loss was basically a side effect.

In a couple of months, I lost 15 kilos, which may not sound like much if you've been watching The Biggest Loser, but when you're 5'8'' and starting at 78kg, it makes a massive difference to your appearance.

For the better?  I certainly felt so at the time.  I was fitting into more clothes, wearing midriff bearing tops without feeling self conscious and, truth be told, I was suddenly getting a hell of a lot more attention from men - strangers felt much more inclined to serve me first at the counter, open doors, make nice comments about what I was wearing and honk at me as I walked down the street.

Too bad I felt too awful to date.  I may have been happier with my appearance, but without a job or the physical ability to do anything for more than an hour at a time, my self esteem had reached all time lows.  And forget sex.  Feeling like that, I just wasn't interested.

Yes, unfortunately, my body still felt like a nauseated tonne of bricks.

Me, four years ago.
A friend of mine took some photos of me at that time for a uni project, connecting the theme of CFS to fairytales.

Looking back at this, I think I may have gotten a little too thin; for my frame at least.  I didn't realise it at the time, but I've since been told that friends and family were quite worried.  People have said that they considered me bony.

But did I look like the girls in the ads?  Did I look like the women at the Oscars?  Hell no.  Why?  Let me make a list:
  • My bone structure is big; 
  • My torso is long which makes my legs kinda short; 
  • My figure is pear shaped, so no matter how much my ribs stick out, my butt is always comfortable; 
  • My back is slightly hunched; 
  • My ears stick out; 
  • I have gaps between my not terribly white teeth; and
  • After shedding all the weight, my chest was almost non existent (I got really excited shopping for new clothes, fitting into size 10 and 12 of whatever I tried on, only to have a real "doh!" kinda moment when I got to the bra department).  
Me today.  "Overweight"
according to the BMI index.
But does this matter?  Is it bad?  Does it bother me?  No.   Not anymore.  In fact, it was kind of an eye opener.  I spent a lot of my teenage years imagining that losing weight would make me better looking, when in reality, all it did was make me look different.  The BMI index turned out to be crock, and frankly, who even wants to look like a product that's been mass produced?

Unless you're part of the 1% of women who actually have the genetics to look like a model, you are going to have an equivalent list of features to those above; features that no amount of dieting or exercise will change; features that make you identifiable as an individual.  


Most likely, these features are worth emphasising because they make you you, and isn't it better to stand out than to blend in to a crowd?

I once saw a photo of one of the girls from The Hills after she'd got a lot of work done and was horribly dismayed to see she'd removed everything that was interesting about her.  She'd been very  cute before, in a distinctive way, but after removing parts of her nose, hips and chin, bleaching her hair and enlarging her breasts, she was quite forgettable.  She claimed she had done it for herself.  Apparently it made her more confidant.  It was presented as an empowering thing.  Good for her, I guess, but was it really worth the money to look just like everyone else in her industry?  I'd imagine her original look would be more advantageous at auditions.

In defiance of the ideal of a nipped and tucked hollywood starlet with a fake tan, I would like to present a few photographs of women I know, women without surgical enhancements or three inches of makeup, who I have always believed to be very beautiful:








What do they have in common?  Certainly not their size, shape, complexion, hairstyle, ethnicity or physical ability.  Physical fitness is also not a factor.  In person, some are more confidant and outgoing than others.

From my perspective, the only common factors between these women are ready smiles and a personalised sense of style, which would seem to indicate happiness and individuality as the most important ingredients in the recipe for attractive.  To quote the Dove campaign, a mantra of "love the skin you're in" seems to be what is working for each of these women.

Generic "good" looks are boring and expensive to achieve.  Diversity is far more appealing - an ideal we desperately need to reintroduce into the fashion and film industries if we are ever going to convince teenagers that they are not all ugly as sin.

But does this work for everyone?  Could "love the skin you're in" work for me?  My attitude toward my own body is definitely a complex one, as I imagine it is for everyone with a chronic illness, and as I said earlier, the word "love" is not one I can honestly apply at this point in time.

That said, I certainly like having big blue eyes, thick hair and a young face.  I like having natural curves (the cleavage came back when I regained my ability to digest food).  I've got full lips and cute freckles.  I'm also a bit of a chameleon.  Minor changes to hair, makeup and outfit seem to make me look completely different, and that is fun to play with.

I'm certainly not a person who looks in the mirror convinced that they are horribly flawed and ugly.

Loving the skin I'm in may take time, all things considered, but I am glad to say I have well and truly let go of the standard women's magazine ideal.

Getting back to the interview with Catherine Deveny, there was one thing she said, well, many things she said, but one in particular which I think is important to take to heart:
"Choose love.  Choose satisfaction.  Choose you. You are gorgeous.  Someone out there would KILL to look like you."
 I will leave you with some images to think about:

Katie Halchishick - founder of "Healthy is the new Skinny"







Esther Vergeer - Tennis Player
Dove Campaign
Marilyn
Rosanne Barr
Dove Campaign

Nov 25, 2011

Get in on the Celebration!

It's that time of year again!

Americans are killing turkeys in celebration of ... killing indigenous people, and we are all about to celebrate the birth of a man who got killed for his religious beliefs.

An upcoming celebration that is less about killing though, is International Day of People with a Disability, which will be taking place on Dec 3.

 This is a day to focus on inclusion, equality, positive thinking in the face of adversity, and all the amazing benefits which come from living in a diverse society.

If you are the owner of a business that is open to the public, this is the time to look at your shop front and ask: "Could I increase my sales by installing a ramp?"  (The answer, by the way, is probably 'yes.')

If you are an Australian citizen, it might be the time to show your support by going to the NDIS website and signing the petition.  The NDIS campaign has been the main focus of pretty much everyone in the Australian disability sector in 2011, and  has the potential to improve the lives of hundreds of thousands of people, currently living in extraordinarily difficult conditions (including many with CFS).

It may also be a good day to check out what is going on in your local community.  If it is anything like Melbourne, chances are there will be public wheelchair basketball games, launch events with free booze, awards ceremonies and diverse fashion shows to check out!

But what does IDPwD mean for people with CFS in particular?  Most of us won't be taking part in the basketball, that's for certain, but I'd say it is definitely a good day to be raising some awareness;  wear a ribbon or T-Shirt; write a blog or make a youtube video; or put a link to your local CFS support society up on facebook.

But, more importantly, I suppose, people with CFS can make this a day to really identify with the wider disability community.

I'll admit that for the first three years that I had CFS, I did not really consider myself to be a person with a disability.  In my mind, people with disabilities were the ones with the much more clearly defined, visible, conditions.  They were the ones in wheelchairs or the ones with guide dogs.  They were the ones who had to fight for access in buildings without lifts, learn sign language or read braille.  They were a them, not an us.  And in many ways I felt excluded by them (an irrational feeling, looking back, but I can't deny it was there).  I had a vague idea that as a person who couldn't walk very far, concentrate for very long or work enough to make a living, I should be included in this group, but always felt that as a person with an invisible chronic illness, I was somehow disqualified.  (A feeling underlined in heavy black texta by the dismissive attitudes of the first few doctors I went to see when I first got sick.)

Then I started working at Grit Media.

I will tell you now, that when a group of people with disabilities, all kinds of disabilities, start working together, you get one of the most accepting groups of people on this planet.  Working at Grit has been an incredible experience for me, opening my world up to a whole new range of experiences and world views, and I know that many other people working there feel the same way.

When you throw your lot in with such a diverse group of people, with such a diverse range of needs, you work out very quickly how best to support each other, and how to accept support without feeling like a burden.

No Limits Cast and Crew promoting the NDIS
You begin to, automatically, look for venues with good access, paying attention to details like low counters and space between tables; grab menus and read aloud for people with low vision without being asked; make things logical for aspies; hold your arm out when the guy with CP gets to the curb; help the girl with SMA back into her jacket; chop up the steak for anyone with limited motor skills; and develop a working relationship with the blind guy's dog.

You do it all without really thinking about it, and in turn, you start to be watched for signs of fatigue or pain (apparently pallor is a warning sign) by the people around you.  People start helping you out with word retrieval by making it a guessing game; waiting patiently if you have to sit or lie down for a bit without making a big deal of it; doing the heavy lifting without expecting you to help; keeping perfumes and chemicals minimal; and adjusting the menu to suit your diet without whinging about it.

When you are hanging out with people with disabilities, everyone has something and everyone has experienced discrimination in some form.  We can't all relate directly to the problems facing the others, but we are all very aware of how much difference an open attitude makes.

I also find the Grit Media volunteers to be incredibly fun.  Extreme circumstances make for extreme personalities, and while it does occasionally feel like an insane asylum (some volunteers literally have the certificates to prove insanity), it is never boring!

It's also much easier to laugh about it all with people who are not scared to acknowledge and accept.

And this is why International day of People with a Disability is important to me.

Nov 14, 2011

One Week

So, it's been a week since the first gym workout and I've now been back three times.  One light workout, one swim, one yoga.  Payback has been full on.  I've figured out that, if I go to the gym, that's pretty much all I can do that day.

But, as it's also been one week since I stopped managing an Incorporated Association, I can actually afford the recovery time.

About a month ago, my doctor, very unimpressed with my lack of attention to my health, gave me a look that would not have been out of place on a School Principal before telling me, in no uncertain terms, to Stop Working Now.  She then stabbed me in the butt with vitamin B and gave me a list of supplements as long as my arm (I swear, I am the one keeping Melbourne's health food shops in business).

It took a few weeks to wrap things up, but I've done the handover now, and though I will miss my job, the free time has been heaven.

I've actually been able to cook my own meals again, which is far better CFSwise with all the food sensitivities.  I've also been able to catch up with a few friends and family I've been fobbing off for some time, due to my need to be sleeping when not at work.

And, after only a week, I've already noticed a health benefit to the exercise I now have time to do! Lowered chemical sensitivity.  At least, I'm assuming this is due to the exercise.  Particularly on days after the light workout or swimming, I've woken up without my usual burst of tachycardia (really fast heart beat) and with lungs that actually feel like they've spent the night breathing.  It's been about two months since I've experienced this, and it's a huge relief.  I was actually beginning to fear that I would be in for another two year long health crash (I've been on the brink for a while, hence my doctor's, no nonsense, orders).

I don't think I'm out of the woods yet, but this has been a good week.  Fingers crossed it continues.

Nov 7, 2011

The Issue of Exercise

Exercise is a funny thing with ME/CFS.  Too much and you're in bed for days.  Too little and you decondition, which only adds to your problems, really.

I have two doctors with very different views on this; Anne Small, currently advising me to get as much rest as possible (she actually looked pained when I asked her about a safe way to get fit - the answer, incidentally, was 'walking'); and Chris O'Callahan, who treats CFS patients with 'Postural Orthostatic Tachycardia', which, in English, means you don't have quite enough blood, and what you do have obeys gravity more than it should, pooling in the legs rather than circulating).

Chris's advice is to get lots of exercise, but keep it as horizontal as possible ... (Did your mind go there?  Sadly, mine did).  What he means is things like swimming or bike riding, and I know a few people who've had success with that.

I also know people who've 'crashed' horribly and haven't been able to get out of bed for months after an attempt to get physically fit.

So which is the right call?

My thought right now is to try the gym.  I found out my local community centre has a massive range of equipment and classes and taylor makes your program for you.  They do swimming, yoga, pilates and water aerobics which all sound relatively CFS friendly.

I went in last week to get an assessment and program.  The girl who set it up for me, was adorably blond (despite being a brunette) and got very flustered when I said I had CFS.  She was very reluctant to let me use anything that might fall on me if I nodded off during a workout!

I kindly explained - not for the first time - that CFS is different to narcolepsy, and that I just wanted to keep the cardio minimal.  Pushups, chinups and anything involving running were out, but other than that I was open to whatever.

I had my first workout today, and honestly, my head now feels like lead.  I'm in and out of bed, but have managed to both cook a casserole and write a blog entry with the energy still available to me.

It's likely the real payback will hit me tomorrow, so I'll have a better idea of the consequences then.

Exercise is a tough one with CFS, but I'm making a commitment to get a better handle on my limits, and hopefully raise them a bit in the next 12 months.

Sep 17, 2011

Stuff That Helps

Since my last two posts have been relatively negative on what was actually intended to be a positive blog, I'm going to do a quick one on stuff that I find helps me deal with CFS.  I've had significant improvement since initially becoming ill, and though I can't guarantee these things will work for everyone, and by no means am I completely well, this is what works for me:

1. Trust what your body is telling you.

If you've woken feeling like you've been hit by a tonne of bricks, it might be a good day to stay in bed and eat healthy food.  Resist the temptation to struggle on through it and eat sugary junk to keep you moving.  Also resist the temptation to drink V, Mother, Red Bull, Monster or Coffee (the effects are short lived and even perfectly healthy people get palpitations from drinking some of these).

2. Stay as hydrated as possible.

When I first got sick, I would be desperately drinking about five litres of water a day.  I would wake every morning with the equivalent of a hangover, simply because I'd gone a whole eight hours without a drink.  I've found the best way to battle this (other than drinking inordinate amounts of water) is sports drinks, like gatorade, and making sure you get enough salt (it's actually the salt in the gatorade that helps you retain what you drink).

3. Getting rid of as much chemical/scented stuff as you can, especially from the bedroom.

Organic sheets and pillows are a good start (can't recommend organic mattresses though as I've yet to find a brand that doesn't stink to high heaven with whatever "natural" products they've treated it with).

Avoid perfumes, incense, spray/scented deodorant or chemical cleaning products of any kind.  I find 100% natural oils are pretty okay if you really want a scented house.  Some unscented, roll on deodorants are alright.  Crystal deodorant is safest.

Don't make the mistake of thinking that just because something is advertised as "organic" it must be safe.  Test out shampoos, laundry liquid, soap, make-up, moisturisers, etc to see what effects you the least.

Be careful when buying furniture.  Treated wood is quite toxic.   I tend to leave new bedroom furniture in another room for a month or two before using it.  It allows the chemicals to fade.


4. Avoid mould, mildew and mustyness.

Harder to do than it sounds.

About a year after getting sick, I realised my worst 'crash' periods were correlating to which set of sheets I had on my bed.  One was an old set that had spent a few years in a chest of draws before I grabbed them out when I moved back in with Dad.  The other was fairly new.  Whenever I used the older sheets I found that fatigue, lung capacity, headaches and particularly the heart related symptoms - like palpitations and tachycardia - were a lot worse.

If you find that something in your environment makes you feel awful, toss it.

5. Fresh Air.

No matter how much you try to remove the chemical and musty stuff from your house, the home environment is never going to be completely free of things that make it harder to breathe.  I find the air outside to be infinitely better (except in the dead of winter when one of my neighbours uses a wood heater and open windows let the smoke in).

I find I wake up feeling a lot better if the skylight on a window is left open at night.

6. Food.

Everyone I know with CFS has food sensitivities.  Take the time to work out what they are and avoid the bad foods.  For me it's dairy and a lot of processed things (I haven't been able to nail down what exactly, but raw foods are always better than the mysterious list of chemicals on most things packaged).

I've also found there are foods I can eat on a good day, but not on a 'crash' day.

It's also good to eat food which is easy to digest.  Fruit, veggies, fresh meat and eggs are a lot easier to digest than complex carbs.  I find the caveman diet is usually the way to go on a bad day.



As I said before, these kinds of sensitivities differ from person to person with CFS and this is just what I find works for me.  I'd encourage people with CFS to play around though, and really try to figure out what environmental changes can help.  For me at least it's made a massive difference.  

Sep 15, 2011

Death threats against Wessely? Why am I not surprised?

Living in Australia I managed to miss that this whole media campaign was going on in the UK.  Apparently there were a number of articles in reputable papers along the lines of this:

Chronic fatigue syndrome researchers face death threats

Wessely now feels safer in Iraq than he does in Britain!

I'd be lying if I said that my first reaction to reading this was not a gleeful laugh.  The man is frankly one of the more evil people alive today, and I hope that history eventually vilifies him for the suffering he's caused.

That said, I certainly don't wish the man dead.  I also could never condone the way some patients have responded to the XMRV research trials.  Scaring off the legit researchers does no one any favours.  Scientists unfamiliar with the dodgy research and mistreatment of patients which has given rise to such extreme emotions are understandably a bit shocked by the hate mail they receive when their findings don't back the preferred theory.

I think it's important to point out though, that no actual violence has been reported in these articles.  It's all just talk.  Inappropriately aggressive talk, but talk just the same.

I also think the people writing the articles need to do a little more background research.  Wessely comes off in this article as the innocent victim.  Nothing is said of the controversial nature of his research methods and selection criteria, nor of the claims by medical professionals and former patients (and families of deceased patients) that his treatments are unethical and even dangerous.

Here's a very well written and researched article by Professor Malcolm Hooper in response to the Guardian article.  Hooper is a Pharmacist, Medical Advisor and Advocate for CFS patients.

Jul 16, 2011

The Case of the Runaway Body Parts

So, I went down to Federation Square to catch up with John McKenna; a former Committee Member of Grit Media, where I work.  John was one of the original cast of No Limits - Grit Media's flagship program on community television in Australia - and he was very keen to tell me all about his new disability news blog which you can find here.

While John and I were discussing all things community and social media related, a very odd thing began to occur behind us on the walkway; every ten minutes or so, a bunch of people would walk past, quite purposefully toting body parts the size of Orcas.

It began with a hand, then a foot, then an eye.

At first, John and I did not mention this rather curious turn of events as we were engrossed in our conversation, and hey, we were in Fed Square; weird, arty things get carted through there all the time.

Eventually though, as a giant mouth, complete with full set of teeth and huge rolling tongue, trotted past, John motioned up a tad gleefully and said: "Have you noticed this?"

"Yeah," I said.  "I wonder if they're building a giant human sculpture back there."

As it turned out, they were not building a giant sculpture.

Fifteen minutes later, the screams of children began to echo through the cafe area, and we looked out to witness a large group of kids being chased around by a team of gargantuan body bits, lurching eerily about the walkway as everyone in the vicinity simultaneously ran for their lives and reached for their video phones, including myself and John.

"This is going on my blog," said John as we walked away, laughing.  "I'll have to relate it to disability somehow though.  Amputees!"


Jun 28, 2011

MCS should not be underestimated

"A woman in her 30s, living in the Pacific Northwest, was severely disabled by MCS [Multiple Chemical Sensitivity]. Everyone in her community knew it, but as is usually the case with MCS, most didn’t believe she was really sick; they thought she was “crazy.” So, one of her neighbors sprayed the vacant lot he owned, next to her house, to prove she wasn’t sick — over the pleas of her husband and her best friend, another neighbor. She died of organ failure the next day."
I found the above quote on this blog.  That neighbour should be locked away for life.

As someone with MCS I'm all too familiar with the attitude you get when asking people not to wear or use chemical products.  It's as though you're impeding on their basic human rights by suggesting they not wear perfume or burn scented oil in your shared foyer.  It's the sort of illness where people are sympathetic in theory, but if it actually effects them in any way they are more inclined to believe you've made it up just to inconvenience them.

I know what it feels like when your heart starts racing out of control because you used the wrong laundry detergent, or someone down the road is using a wood heater and the smoke got into your house. I know what the migraines feel like when I've slept in a room cleaned with the wrong products.  I know what it's like to feel nauseated every time you eat because you've had to wear sunscreen two days in a row and now your body is reacting badly to any foreign substance.

Trust me, no one makes this stuff up to inconvenience other people.

I can't relate directly to the woman in this blog because I don't believe my MCS has ever been close to this serious (though I honestly dread to think what would happen if a vindictive neighbour decided to spray my yard with pesticides).  I do hope however, that her story serves to underline how serious a condition MCS actually is.  It's rare, but people do die of it, and its impact on day to day living should not be underestimated.



Jun 22, 2011

Visible vs. Invisible

"As I was walking up the stair,
I saw a man who wasn't there,
He wasn't there again today,
I wish that man would go away."

So, if you had to have a disability of some description, and the impact on your physical ability would be the same regardless, would you choose to have one that people could see; e.g. anything requiring an obvious aid like a scooter or a labrador, or would you prefer an invisible disability; one where no one need even know that anything was different?

For a long time, I was jealous of people with visible disabilities.  My biggest problem was getting people to take CFS seriously.  Doctors would look at me in blank surprise when I said I needed to stop working, friends would have hurt feelings when I couldn't go out and everyone kept assuming that I'd be better soon.  I spent a huge amount of my non-existent energy explaining that I had a serious, unpredictable, life altering health condition, only to be met with that polite nod that says "I hear what you're saying, but I don't comprehend".

At the time, I knew a few people, including a paralympian, who were far more physically capable than me, but had no issue finding support where they needed it because people would take one look and say "Ah, I get it.  What can I do to help/compensate?".  When people can see your disability they are all sympathy and "Sweetie, how are you?" and "Can I get you anything?".

Of course, for people with visible disabilities there's a flip side to this, which is that everyone is all sympathy and "Sweetie, how are you?" and "Can I get you anything?".  The assumption that you are helpless and dependent often goes hand in hand with open stares and condescension from douchebags assuming that a disability of any kind denotes the mental capacity of a two year old.  The same people  tend to assume you can't hear them when they make charming comments such as: "Kill me if I ever end up like that".

A visible disability can be very dehumanising as strangers, and people without the patience or inclination to know you better, have a tendency to assume you are a summary of your most obvious physical traits; the same mindset, in fact, that makes invisible illness so difficult to explain.

I went to a restaurant once with Elvira, who uses a wheelchair, and Riki, who is legally blind.  The waiter passed menus to me and Riki (who had no chance of reading the fine print), then hesitated as he looked at El.  "I'll have one too" she said kindly, assuring him that yes, people in wheelchairs eat too.

The problem is heavily compounded if the disability in question has any effect on your speech.  Difficulty communicating is assumed to be difficulty thinking by a lot of people and the social consequences of this are dramatic.  I once had to convince a hotel receptionist that a 19 year old with cerebral palsy was legally entitled to book his own hotel room.  I failed.  She actually made me wait on the phone while she called his Mum.

And then, of course, there are people with both visible and invisible disabilities.  My friend Kevin is blind due to a brain injury which also effects his short term memory.  People see Spike the guide dog, think they know the deal and get quite put out when he still can't remember their name after five meetings.  Sometimes I think Kevin has more trouble explaining the invisible aspect of his disability than I do with mine because people are distracted by the problem they can actually see.

Likewise, there are a lot of disabilities that cause extreme fatigue, shortened lifespan, easily broken bones, etc., as well as taking something more apparent such as your ability to walk.  People see a wheelchair and understand that you need ramps, but can be less patient with you when you try to explain that you can't figure out the train timetable because you have brain fog.

So ... up, down and sideways aspects to both.

If anyone is actually reading, I'd love to know what you think.

Mar 16, 2011

Going Organic

So, I've just spent a small fortune on organic bedding in the hope that it will improve the symptoms I've come to associate with MCS (Multiple Chemical Sensitivities).

It's a fairly big investment but I wanted to do it sooner rather than later just in case it works.  I mean, what if I waited six years until I could really afford it and realised I'd wasted my late twenties/early thirties feeling far more ill than I had to?

Of course, you could say that about all the expensive ME/CFS "cures" on the market - most of which I will not be testing out - but I have a good feeling about this one.

The two biggest health improvements I've had since being diagnosed occurred;

a) when I realised my old, musty doona cover made me feel far more like a hungover marathon runner who forgot to stretch than the new one; and

b) when I moved into my current apartment, which doesn't have the old house smell of my previous homes.

Also, as anyone reading this with CFS will know, chemicals found in perfumes, deodorants, air fresheners, incense, aftershave, scented candles and cleaning products tend to make us nauseous and dizzy.  The "Lynx Effect" is not a positive thing on people with CFS.

The fact that I can still smell the fire retardant chemicals in my two year old mattress on a bad fatigue day is a fairly sure sign that the effects of sleeping on it aren't the best.

The following is from an article in the Alternative Health Times:
"According to the Consumer Product Safety Commission, the average 5 year old sleeping on a fire proof mattress will absorb .5 mg of antimony every night, which is 63 times the amount the EPA says is safe. Antimony is very chemically similar to arsenic, and long term exposure has been shown to contribute to heart, liver and lung problems, miscarriages, and cancer.

In addition, the chemicals being used as flame retardants can combine with a common fungus (that frequently lives in mattresses) to produce toxic "nerve gases" which can have devastating effects on infants. In some cases, the gas produced is toxic enough to shut down an infant’s breathing within minutes, leading to Sudden Infant Death Syndrome (SIDS)."
If this is the effect regular mattresses are having on healthy people, I'd say MCS sufferers should be staying the hell away!

Most of my cool, new stuff will arrive on Monday.

So my question now becomes; would anyone like to buy an apparently poisonous, second hand mattress? Only been rained on two ... maybe three times due to my inability to keep the skylight closed when I leave the house.

Mar 5, 2011

Cool Foods We Miss

Most people with ME/CFS have food sensitivities.  At one point I was pretty much on a diet of meat and veggies because everything else was problematic in one way or another.

These days I just avoid dairy ... most of the time.

(I am a fan of icecream and chocolate and am willing to suffer for it!)

Yesterday though, as we browsed the shelves of the local servo, I had a conversation with my housemate Karen which got me thinking; people with ME/CFS are not the only ones who have to give up foods that they love.  Due to discontinuation or lower distribution, we've all at some point had to give up an addictive taste sensation.

Here's a few of mine and Karen's:

  • Diet Vanilla Coke,
  • The Choc Honey Malt and Jaffa Big Ms,
  • Raspberry Sunny Boys,
  • The McDonalds Kahuna Burger and their Jaffa and Choc Mint range of Sundaes and Thickshakes,
  • Karen misses Dr Pepper (even if no one else does),
  • 20 cent lollie bags from the milk bar,
  • Giant Sherbert straws,
  • Cadbury's Top Deck chocolate bars (my Dad is a chocoholic and he particularly missed this one),
  • The cheesy bread they used to serve at sizzler,
  • The old KFC buns (why on earth did they change those?),


... looking at this list, I'm thinking maybe, just maybe, it might have been a good thing that most of this stuff was discontinued.  I'm sure Jamie Oliver would love it if no one ever ate any of this stuff again.

Sigh. 

Mar 3, 2011

The Party Trick


With my first post I really want to identify something positive about ME/CFS.  I'll be doing this periodically on this blog  and first up I've chosen: Hyperflexibility.

Hyperflexibility isn't officially listed in the symptoms of ME/CFS anywhere that I'm aware of, but in 2002 Dr. Peter Rowe, a professor of pediatrics at Johns Hopkins, accidently discovered his CFS patients comparing all the cool things they could do with their freak joints.

Consequent testing has shown that 75% of kids and teens with CFS have multiple hyperflexible joints compared with 20% of the general population who only have one.

Dr. Chris O'Callahan at the Alfred Hospital has unofficially been studying this phenomenon in adults with  CFS/POTS for a number of years.  I went to see him on a recommendation from a friend and found that he was building up a pretty funny looking evidence base of photographs, some of which had to be twisted around a few times before you could work out which ways the joints were facing.

I think I was the first patient to contribute a video to the collection.  I discovered my own hyperflexibility in 1996 - 9 years before my CFS symptoms developed - when I first succeeded in holding my hands behind my back and pulling them over my head.  When I showed this trick to Dr. O'Callahan, he got very excited about taping it for a conference he was soon to be attending.

O'Callahan has linked the hyperflexibility to abnormally high heart rates upon standing (Postural Orthostatic Tachycardia Syndrome or POTS) in CFS patients.

I can't express how validated I felt when I first saw the line graph representing my heart rate results and the comparison to a normal control.  My heart has been all over the shop for years, and I've brought it up with pretty much every doctor I've seen since 2005, but the tachycardia (fast heart beat) isn't predictable and doesn't come up in the standard tests GPs do when they check your blood pressure.

As far as I know, Dr. O'Callahan is the only doctor to test for tachycardia in CFS patients with a 24 hour heart monitor and I think the findings are very exciting.

It all strongly supports the 'ME/CFS has a genetic component' theory.

Medical findings aside though, when it comes down to it, hyperflexibility is a really cool party trick.
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