Monday, 31 October 2011

When bad news is good

Today I saw Dr McLovely again, I actually told her that I call her Dr McLovely in my blog and, living up to her name, she blushed!

She had all my test results back and there were some not so nice results.

Quincy MD I'm not, so my grasp of the significance of all these things is tenuous at best but here is the upshot...

Whatever indicates a possible auto-immune disease was elevated.

Something to do with my thyroid was wrong and she said my brain was having to work very hard (no news there) to try and get my thyroid to produce enough of whatever makes my metabolism metabolize.  This makes perfect sense because I have always been what the old cow cockies (beef farmers) would call an "easy keeper".  I don't eat very much but I don't lose weight either.  I'm not the size of a barn or anything but I am generously proportioned.

The thingy (that is a technical term for those of you who are uninitiated) that indicates Celiac Disease was high.  Potentially this could account for the fatigue and what I had presumed to be a touch of IBS.

My sugar levels were elevated on a fast test which could indicate diabetes.  I told her about my weird sugar stuff from when I was pregnant.  I used to go to my pre-natal checkups every month and every month my sugar levels were elevated on the pee test so dutifully I would trot across the road to the path lab for a blood test and every month my blood sugar was fine.  Dr McLovely is an expert at that breeding stuff, pregnancy, family planning etc and she laughed when I told her this and informed me that I had had Gestational Diabetes which apparently makes a woman predisposed to develop real diabetes later in life.

There were few other odds and sods... apparently I have at some time had glandular fever (news to me!)  Naughty cholesterol is high, nice cholesterol is too low (the bad guys are in the lead in the cholesterol Stupidbowl apparently).

NOW - a "normal" person might come out of the surgery reeling from news like this, they might be HORRIFIED or even TERRIFIED!!!  But, as anyone who has dealt with Fibromyalgia symptoms knows - we are far from normal!  When you live your life with a myriad of unpleasant problems that have no known cause and no known cure it does strange things to your mindset.  It makes you sometimes almost wish that you had one of the trendy, clearly defined, conditions.  Something that is easy to explain to other people; something that has a well publicized name; something that can be nailed down with a specific test; something that potentially can be CURED!

I'm not very keen on the idea of having diabetes; I lost a very close family friend (almost a sister) through complications of diabetes earlier this year at the tender age of 52.  I'm not keen on having thyroid issues or Celiac Disease.  I'm particularly not keen on having some kind of auto-immune disease (the idea of my white blood cells attacking some part of me is like a bad B Grade horror movie in my mind).  Still, let's face it Fibromyalgia is not a pic-a-nic with Yogi and Boo Boo either.

In spite of blood tests up the wazoo over the last two years no one has ever seen these results before, maybe Dr McLovely ordered a more comprehensive series of tests, maybe Aussie path labs are better, maybe all these wonderful problems are all new... I don't know.

The possibility is that some of these things might explain some of the fibro symptoms and that some of these things might be manageable with diet or meds, some of them might even be curable...  Of course I have been dancing with chronic pain for most of my life... long before Dr MingDynasty decided to call it Fibromyalgia so I don't really hold out much hope that these things are INSTEAD of the FMS.  Most likely they are in addition to FMS... but still an explanation, however limited, is a welcome piece of news.

Wouldn't it be cool if they could up my thyroid dooverhickey (another technical term - look it up!) and increase my metabolism?  Maybe I could become trim, taught and terrific and all the eligible lesbians in Sydney would suddenly be bashing down my door!

So back for more blood tests in the morning - glucose tolerance etc...  I made an appointment with the Immunologist, I think it is for January 2031 (He is a VERY important person).  They told me they process their cancellations every Friday morning so I have set an alarm to remind myself to annoy them weekly.  They asked if I wanted to see him about chronic fatigue or allergies...  I said I have fatigue and auto-immune irregularities and this stuff is ruining my life and that 2031 is just not soon enough!  Hence the suggestion to call on Friday mornings (silly woman telling me that - she'll rue the day!)

Just a side note - anyone in Sydney or environs there is a rally to Re-Occupy Sydney at Noon this Sat at Town Hall and if I can drag my exhausted arse out of the house I will be there!

NB - My lovely American friends I was only kidding about the Path Labs
The immunologist appt is 2012... ok forgive me, so I exaggerated a little!

Sunday, 30 October 2011

Why doesn't "Acceptance" mean getting presents?

I've been going through some barriers lately... Delusion busting I guess....

I hope I'm not the only one who has successfully perpetrated a fraud against myself.

When I moved home to Australia in the beginning of September I was under some strange illusion that I would be fine when I got here.  Without a magician in sight I had managed to convince myself that a reduction in stress and the sights and smells of my homeland would make everything better (well at least everything manageable).  Maybe it was the high of surviving the packing and moving, I don't know, but for about a week I did feel pretty good.  In pain, slow, tired but not too bad - perhaps I was just very distracted with excitement and with seeing all the changes that have taken place in my absence.  I don't know.  Then I overdid it and crashed - and crashed I have stayed.

For a person with a poor tolerance for stupidity I was really stupid.  I KNOW that this happens, I KNOW that the windows of time when I can feign normal are further apart and shorter all the time, I KNOW that I have been getting steadily worse for several years.  Of course none of that was front of mind when I was spinning my web of self delusion!

My self image is undergoing a redesign and the new decor is not very attractive, brown, grey and gloomy have never been my colours!  (Yes I know gloomy is not a colour - but it should be).  I've been thinking about acceptance.

I remember the first time I used a motorized chair.  It was when I was living in the US and on one very pain filled day I just couldn't face the endless aisles of Walmart.  What a relief it was to use the scooter.  I know people stared at me with my robust appearance of strength and good health, but for once I did not waste my precious energy trying to persuade my friend that we needed to leave!  For once I wasn't desperately looking for somewhere to sit down and eyeing off the changing rooms to see if they were clean enough to take a moment horizontally.  I also remember the intensity of the emotions that surround the renegotiation of self image that using an aid arouses.  In fact I have been dealing with this again lately as I find I need to use a walking stick pretty much any time I am walking anywhere.  I think there is a possibility that I am deluding myself about this too cause I tell myself it is mostly about balance, and yes my balance is appalling, but I think I am also giving my legs a bit of a break and letting my arm and shoulders take some of the strain.  I know people look at me differently when I am using the cane, they move differently around me.  It is a visible sign of the ravages of my invisible condition.  But there are gains too, it kind of explains my pitiful slowness and my twisted grimaces; it gives me permission to let the pain and fatigue show, and that is a relief.  Hiding, faking, pushing, straining and acting are bloody tiring.  Yes "FAKING the thing so many people say fibro diagnosed people are doing... Well naysayers, you are right, we are faking... we are faking that we are ok when we are NOT, we are faking that we are like everyone else when we are NOT!  Faking being normal not faking FMS.

Tomorrow I am seeing Dr McLovely again.  My test results and xrays will be back.  I need to write myself a list of things I want to mention to her cause I can't trust myself to remember them.  I've been having some trouble with my vision but I think I will leave that for another time if it doesn't resolve, it's really only in the mornings anyway, maybe like morning stiffness for my eyes where they seem to take a while to wake up and pull focus correctly.

Anyway time to sleep - I had a big day today - I changed the sheets!

Saturday, 29 October 2011


Warning - down beat - woe is me - gonna eat worms blog to follow.

Stop reading now unless you take great interest in train wrecks and freeway accidents.

I'm warning you for the last time...

Somehow I have managed to become one of those people almost nobody cares about.

My son is an exception to this sad sack statement. I have a few good friends and I am not in any way belittling their love and kindness, I do feel it and I do appreciate it, but friends are not partners, and friends are not family.  My friends have spouses and kids and busy busy lives and I am not integral to their existence.

It's Saturday night and I am sitting alone with my computer on my lap watching/listening to a terrible little TV, with a "rabbits ears" aerial.  There is an Agatha Christie mystery showing (I think that is what it is) but there is so much snow that I can't really see the features of any of the actors.  I don't care 'cause I don't want to watch it anyway although I the soundtrack in the background fills the void in my room somewhat.  My knees are burning (they've been hurting all day) and my left foot is cramping and in spasm, my left hip is throbbing as usual (there is other crap hurting but I'll only bore you with the more extreme issues).  I'm worried about Christmas.

My family isn't close.  I have two brothers both wrapped up in their own lives/families - my parents are dead.  My relationship with my step-mother and step-sister has always been problematic.  My sister-in-law, for a reason I have never known, has not spoken a single word to me since 1992 (I think it was because I was pregnant too).  My other brother's male partner is a great guy and he and I get along pretty well.  Not one of them is in any way interested in what matters to me. how I feel, what I think, what I blog about or anything else.  They don't seem to place any value on my intelligence, wit, or insight.  You know how you get labeled as a child in a family - "the naughty one", "the clever one", "the sensible one" -- somehow I was tagged as "the serious one" or perhaps "the boring one".  On the rare occasions when a member of my family actually "hears" when I say something funny or witty they look at me like I have suddenly explained the physics of a black hole or sung an aria in Italian, because I am NOT "the funny one".  (Strangely my friends and former coworkers have never had this same perception.)  But I digress...

Recently I returned to Australia after living for 12 years in the US.  Aside from my mother's death and my father's funeral I have pretty much managed to avoid all family gatherings.  Mum and my gay brother used to visit the US and see me pretty often but mum has been dead now three years.

My step-mother is hosting Christmas.  The email invitation came out inviting us all.  Everyone's name was mentioned, in-laws and kids too, except mine but I know that was just an oversight - Freudian maybe, but not deliberate.  My son was named though!  So this motley crew is assembling at her house on Christmas eve, cause everyone except me has lots of other places to be on the actual day.  It will be the first time I have been in the same building as my sister-in-law for over 19 years, the first time I have seen my niece and two nephews in at least 10 years, the first time I have seen my straight brother since my dad died 21/2 years ago, and I think it will be the first time we have ever ALL been in the same place.

None of these people have any idea how much FMS is bothering me, even my son doesn't really know, cause I always push so much harder when he is around, I always want him to see the best of me.  I don't think either of my brothers even knows I have fibro, though I know I have told them somehow I don't think they really heard me.  To be honest I don't think anyone in my family ever hears me.  Except to chastise me for my failures, to dictate to me with advice that is not open to discussion, or to patronize me with superficial interaction I don't think they are interested in me at all.  I am superfluous.

If I wandered off and none of them ever heard from me again would anyone give a shit?  Would anyone look for me if I were kidnapped or wandering lost with amnesia?  Would anyone visit me if I was sick in hospital?  Aside from my son, the answer is no.  I have not fostered or built these relationships, I carry the lions share of the blame,  I have created my own irrelevancy.   My mother was the glue that bound my brothers and I together, she was so happy when she was dying to see the three of us together getting along, but after she died we just went back to our corners of the world.

I feel unloved and unlovable and I don't know how I will endure this gathering and yet I could never bring myself to not go.  I could not deprive myself of even this twisted a gathering of magnified dysfunction. Is it like playing with a sore tooth?  Am I drawn to poke at this bruise that exists where family should be?  Or is it like most things a mixture of good and bad, happy and sad, healthy and sick, understood and misunderstood, happiness and sorrow, pleasure and pain, love and hate...

I guess I will know more on Christmas Day when it is all over and I am sitting alone the same way I am now...

Thursday, 27 October 2011

Adventures of a lesbian agnostic carnivore

The fact that I am an agnostic carnivore did NOT prevent my friend S, in a fit of giggles, from signing me up to join her daughter at the local synagogue for a kosher vegetarian cooking class.  In the process of signing me up my email address was repeatedly auto corrected to read "gentiles" -  it may have been the I Phones way of trying to warn the synagogue that a heathen was soon to be in their midst!

Tonight was the night!

Would it be alarmingly ironic if there were thirteen in the class?  I seriously think there were... (plus the teacher/chef and her partner)

I was being REALLY good until the onions.

There was a fellow there who was asking questions phrased in very odd ways... "Would you like to tell us something about the onions?" he asked.  I'm thinking, 'Like what?  That they were abandoned on a doorstep at birth?  That they cost $3 a kilo?  That they prefer their martini shaken, not stirred?'  Clearly the chef was also wondering what he wanted to know but she bravely launched into an explanation that those were the nicest ones in the store.  Then she leaned across the room with an onion in her outstretched hand and said. "Go on, feel how firm they are."  I watched him hesitate, his hands almost reaching out but pausing tentatively, heading towards the onion but not making much progress, a pregnant pause hung over the room as he seemed to teeter on the horns of this great conundrum...  I couldn't stand the tension...
"Go on mate, it's not every day a woman wants you to feel her onion!" I said.

His next comment related to the herbs and he asked her "How long does thyme keep?"  I managed to leave that one alone...  I also managed to resist when the chef was warning us very seriously NOT to let the orange zest  sit in the water in which it was boiled and I successfully refrained from saying "It just isn't kosher".

Seriously though they were really nice people and I had a great time.  The feast at the end of the meal was delicious, fresh and nutritious.  I'd never been to a synagogue before, as chance would have it, but I'm pretty sure by the end of the 5 week course I will have spent more time in the synagogue than in any other house of worship, and that's just fine with me!

BTW thyme keeps for a week if it is in water.

Wednesday, 26 October 2011

I am my mind

I'm scared shitless.

The things going on with my body are (at times) inconvenient, unpleasant, depressing, annoying and disabling... they are not terrifying though.  I am not my ability to move fast or my ability to contort into pretzel -like positions, I'm not my ability to sit still or to walk long distances, I'm not my balance or my tactile sensitivity (well maybe I am that a bit) or the strength of my grip, I'm not my energy level (though I do mourn that one).  Experiencing significant degeneration in these areas doesn't alter the core of 'me' it just makes everything harder.

For the past two years I have abjectly refused to even consider that I might have any kind of cognitive problems caused by Fibromyalgia.  There is a symptom colloquially known as "Fibro Fog" which is present for many FMS diagnosed people.  It manifests as forgetfulness, aphasia (the inability to remember words or communicate effectively), and a general inability to recall the things you are trying to recall.  I have often made the point that experiencing constant pain creates a level of distraction that increases forgetfulness, as does stress, and I have blamed any deficit in myself on these factors.

Last night I could not remember a song that I have known all my life...  I don't mean I couldn't remember the lyrics - I couldn't remember it at all, I had an aching annoying sensation of having it be on the tip of my tongue but out of reach.  I remembered where and when I had sung it on stage.  I knew when it was played at sporting events.  I knew it was stirring.  I knew everyone knows it... everyone but me.  This morning I attempted to remember it again and came up with another similar song... for a little while I thought I had solved the mystery but it didn't exactly feel right.  As the feeling of "not rightness" grew I googled surrounding subjects and found it listed in Wikipedia.  Land of Hope and Glory... not Rule Britiannia (this morning's effort) nor God Save The Queen which was all I could think of last night.  I know everyone has things like this happen to them sometimes, the more stress the worse my recall has been for the last 10 years, but I am beginning to think that this is happening more often than it should.  I walk to the kitchen to get the phone and a plastic bag and return with a plastic bag and the vague feeling of failure.  I write these blogs and reach a point where i am searching for a word and it doesn't want to come... the other day I could not remember the word "ancillary" for some reason my mind kept suggesting "incendiary" and I KNEW that was wrong.  Roget was needed to save me from that one.  Yesterday I kept thinking the gallows were called a galley... When in my adult life have I ever done this????  Anyone who knows me knows that I ALWAYS have the right word on the tip of my tongue.  I'm a walking thesaurus for Pete's sake!

I'm frightened that other aspects of my intelligence might be affected too (though I have not noticed my processing slowing down I think) - what if I don't have the gifts that earned me a slew of High Distinctions last time I was a student?

But I am just totally frightened, scared shitless and witless because I am not my body but I AM my vocabulary.  I AM my quick incisive wit.  I AM my mind! 

Tuesday, 25 October 2011

I hope the light at the end of the tunnel isn't a train.

I can blog lying down.  (No doubt why I post so frequently)
Remembering my addiction to being horizontal I well might ask... 
What else can I do lying down? (Keep your minds out of the gutter!)

Ok let me dial this back a bit to put it in perspective.  Things have not been going well in my life for the last five years or so.  Here is a snapshot - [warning - skip the dot points if you are not in the mood for a dirge and advance to the part that comes after - I won't mind - I would too]

2006 - Life was pretty good...
  • In business with my partner doing well
  • Wrote a business book had it published
  • Making a name as a speaker/presenter (making money doing that too)
  • In a slightly volatile but very productive relationship
  • Living in own home with partner and son
  • Traveling the world
  • Owning 4 rental units that were rapidly appreciating in value
  • Experiencing chronic pain but 95% of the time quite manageable/tolerable 
Mid way through 2006 my partner and I broke up and the business was dissolved.  My son and I moved into one of the rentals and attempts to develop a new business alone achieved very limited success - the economy was starting to slide right about then...

  • Moved to a different state
  • Began a relationship which became physically abusive
  • Working in a fun job for really lousy money
  • Sued by ex who had access to hot and cold running lawyer and lost everything (long story)
  • Dropped all the balls - couldn't spin any more plates - pain increasing
  • Dead broke
  • Abusive relationship gets pretty bad
  • My mother (who I was very close to) died - sad trip home to Australia
  • Relationship gets scary - I get out but I am being stalked
  • Pain increasing
  • Still dead broke and single (living alone with my son)
  • Being stalked by crazy abusive ex
  • Crappy job becomes hostile and no longer fun (leadership revolution)
  • My father died (a trip to Australia for the funeral out and back in less than five days)
  • Body goes into major, can't get away from myself, hyper flare up
  • Diagnosed with Fibromyalgia
  • Move to another state
  • Get well enough to work and take a great (but demanding) job in yet another state 
  • Work like a demon for 3 months with nights and weekends almost totally dedicated to rest and recovery - then laid off due to economic downturn
  • Get another job - get laid off again
  • Can't afford to live where I was working (California) so move to another state
  • Body flares like a new year's eve fireworks display
  • Lose health benefits
  • Can no longer effectively look for work in the US 
  • Need to get some medical care
  • Finally admit defeat
  • Move (a massive undertaking after 12 years in the US) home to Australia
  • Body continues to become increasingly uncooperative
Well here I am...  Now please don't think that there were no good things going on during this period of time because there were, not enough to outweigh the stadiums full of shit, but good stuff nevertheless.  However I am not, at this moment here to tell those stories...  I am telling you that I have been in a pretty bad way for the last few years.  Doctors who aren't helpful haven't helped (lol).

I'm middle aged, overweight (not ginormous but still more than I should be), I look hagged, prematurely grey, I'm having soooo much fun with FMS, and my self esteem is totally heading through the S bend to the sewage treatment works.  So I say to myself. "Displaced," I say, "You need to have a win!"

When I think back over the things that I have done in my life that have made me feel good about myself (aside from raising a wonderful kid) the first one is working. I have been really good at my job in a lot of different capacities.  At least for the moment that is off the table.  Secondly, I have had success writing - voila - for your edification and enjoyment I have started this blog.  Finally, I have had success as a student.

SOOOOO a couple of weeks ago I ambled my wobbly way into the University and I applied to do a Master of Dispute Resolution.  It is offered through the Law Faculty but is open to non-lawyers.

This evening I received an email telling me that my application has been accepted and I have been offered a place in the program.  It doesn't start until February.  I am really excited about it.  I figure if my body starts to cooperate better it would be a wonderful field (a growing field) in which I could make pretty good money while only working part time, I figure if I like law I might keep going and get a law degree when this one is done, I figure if I still like studying I might do a PhD, I figure I will meet interesting smart people (maybe even a lesbian woman - you never know your luck in the big city!), I figure I have everything to gain and nothing to lose... but best of all ...


Monday, 24 October 2011

Becoming more patient.

This blog has been written specifically for the Patients For A Moment blog carnival.

My father was a doctor and listening to people being referred to as his "patient" was as ordinary and mundane as talk of the people who were referred to as his "friends".  Although we lived in a suburb in Sydney, there was still a small town village feel to the area and his "patients" were his "friends" and for that matter they were also my friends, schoolmates, neighbours, team-mates and their families.  Dad's patients were everywhere!  In my formative years when language and perception is developing the term patient was omnipresent.

Throughout most of my life I have been pretty healthy and to be honest I am still pretty healthy.  Maybe it is a little trip down DeNile that is making me disconnect being healthy from having a chronic condition (note the use of the word "condition" instead of "illness" which allows me to maintain the image of myself as healthy).  I'm not "unhealthy" I ache, I'm tired/dizzy/hurting/anxious/sore/hurting/aching/tired/itching/hurting (did I mention that before?) but I am not unhealthy.

Words are like little signposts with secret, private perceptions hanging on them; they never mean exactly the same thing to any two people and I have to be honest and admit that "patient" is not a trigger word or a sensitive word to me at all.  Yes, I am the "patient" of my health care professionals as I am the "client" of my accountant and the "customer" of my favourite stores.  That said, I do wonder if my view on being a "patient" might be different if I were an "Inpatient" rather than an "Outpatient", being a person who is "Out" in all things a prolonged "Inpatient" experience might be disturbing to my psyche.  Let me admit it here and now, I am an OutandProudPatient!

I love words and I especially love words with multiple meanings where the double entendre lies waiting for a humourous twist or an absurd, unique perception.  Patient, I am not, never have been.  I'm not part of the instant gratification generation but I still want things done yesterday.  Learning to live with a chronic condition has tap danced on my patience and forced me to reevaluate my approach to everything and in very real and concrete ways it has forced me to make significant adjustments to the pace of my life.  I can no longer leap from my seat into action I have to wait for my body to be ready to participate, wait for pain to recede, wait to get where I am going because my progress is often slow, wait for appointments, wait for test results, wait wait wait...  It's bloody hard for an impatient person to have patience forced upon them.  Breathe, relax, philosophize, chillax, in short be patient.

When good days are good for different reasons

I'm hopeful.

That is a vast improvement.

It isn't that I'm hopeful this wretched thing will go away, or even that some wonderful treatment will alleviate it.  I'm not hopeful that I will get my youthful healthy body back or that I will get to live the way I used to.  I am pretty resigned to having to go on dealing with this giant dump truck of ... well you know what's in the truck...

Today I tried a new doctor.

My opening line was, "I'm not sure if you can help me but I'm looking for a doctor who understands Fibromyalgia and I haven't had much luck."  Oh what shall I call this doctor...  Dr McDelicious might be a little too familiar, and Dr McNotBadConsideringYou'reAPom is a bit too long, Dr McReallyListening is a tad too sincere, and Dr McFocused is a smidgin too brusque... how about DrMcLovely... that works.. Because she was lovely but they are all true.  She gave me 45 minutes of her time.

An Englishwoman she has moved to Australia in the last 6 months (I think she might have married an Aussie bloke but I am only guessing).  I checked her out on the web before the appointment and she already had a couple of bonus points with me cause she also works for Family Planning (kind of the Aussie version of Planned Parenthood).  FMS isn't her specialty (I have yet to find a specialist for it) but she seemed to know what she was talking about and best of all, BEST OF ALL, she did not treat me like I was either whining, lying, exaggerating, faking, crazy or stupid.  She has a plan.  She sent me for a series of spinal X-Rays (to find out if a pinched nerve is causing my numb toes and foot), tomorrow I have a complete set of blood tests done, and when she gets that back she wants to refer me to an immunologist who specializes in CFS. (Yay!)

I wish I had a picture of the look on her face when I told her what the Rheumatologist (Professor McAwfullyCute) had told me I have.  She made me repeat it (AUSRRIWCP) slowly so she could type it into her notes, all the while with a decidedly McLovely skeptical raised brow.

On the downside my blood pressure was quite elevated and that is NOT normal for me, I told Dr McLovely that I was quite anxious about the visit and maybe that sent it up and she told me to not be frightened next time and to remember she isn't scary, (if that doesn't deserve the McLovely title what does?)  I also was having a bout of vertigo (unfortunately it is more than a Hitchcock movie) and my balance was totally shot.  The body wasn't working all that well today and it was all quite a slog but it was still an UBER GOOD DAY!!!

NB for my North American mates a POM is an Aussie slang term for someone from England...  I have been told it's derived from the letters on the back of the convict's clothing P.O.M.E. (Property of Mother England)

Saturday, 22 October 2011

Occupy Sydney - yesterday's blog at last

While I was thinking about what to write here about the Occupy movement I am VERY sad to say that this Sydney Protesters Forcibly Removed happened.

I went to the rally yesterday and it was respectful, peaceful and well organized in spite of rows of riot police lining each end of the area and preparing to 'kettle' the protesters.  Kettling is the term applied to the act of police forming cordons across the paths out of an area and thus either containing the people within it or forcing the use of a particular (police chosen) exit.

Now for those of you who may not know this I used to be a Constable in the NSW Police Force.  I went all the way through the Police Academy, including running obstacle courses and hill sprints in the snow during two nasty Goulburn winters and spit polishing my shoes.  I spent three years working in General Duties at the lively inner city station, Newtown (ironically now the lesbian hub of Sydney).
I really understand the importance of doing your job regardless of your personal beliefs and attitudes.  I took a very low key approach when I was dealing with people, even when I knew I was going to arrest them, I reasoned with people when I could and requested compliance before demanding it 99% of the time (the other 1% was too urgent.)  I was only ever assaulted twice, once by a 10 yr old boy I caught prying the change boxes out of public phones and the other time by an old crazy woman, and wow is that ever another story.  The HUGE blokes I hauled out of pub brawls always stepped meekly into the back of the truck.  Anyway, I digress...  I get it.  I understand both sides and I can't appreciate either police who use unnecessary force OR protesters who get in the faces of cops and stir up trouble.

I went to Occupy Sydney yesterday because I strongly believe that there is too much disparity between rich and poor; I believe Wall St in particular, and corporate America in general, directly caused the recession in the US and the collapse of the housing industry; and I believe that the 1% has continued to rape and pillage like pigs at a trough while EVERYONE ELSE (yes EVERYONE, the other 99%) has struggled to tighten their belts!  Furthermore, I believe that if you don't show your face and get yourself counted (if you possibly can) then you deserve what you get.

On the way into the downtown area I met a lovely young man (my god I sound like my grandmother!), Andrew is 17 and he has no idea what the Occupy movement was about, but he was interested.  He sat with me on the bus and then waited while I got my ticket at the train station so that he could wait with me for the train and then sat with me there too.  He had been refereeing basketball all morning and was on his way home.  I tried to explain it to him but to say it is a protest against corporate greed is just scraping the surface.  I would have had better words on my way home (except on the way home I was really tired and might not have struck up the conversation in the first place.)

The best speaker was a bloke from the MUA (Maritime Union of Australia) whose name I unfortunately didn't catch.  The MUA was there with a portable cafe making free sausage sandwiches for all comers.  They took a vote and approved a resolution of solidarity with the Occupy Sydney movement and they have been on board and helping since day one.  Their speaker was interesting, informative and passionate he talked about Shell Oil whose profits amount to $35,000 a minute, yes A MINUTE.  How the MUA is struggling with Shell for tiny pay raises and improved safety and conditions on the Shell tankers when Shell earns more than the most highly paid seafarer on their ships every three minutes.  He talked about another CEO who was getting a 71% pay increase (to over five million dollars a year) when the same company was fighting against a 5% pay increase for employees, unfortunately I couldn't hear the details in this case.  It is JUST WRONG!!!

The Occupy Movement is rather esoteric which makes it hard to clearly define the objectives and even to elucidate a desired solution.  In a masculine, goal focused, society this makes it a bit hard to understand.  My old friend, who met me there, tells me this is an integral part of the ideal, in that by not having specific demands the movement is open to evolve and morph into whatever it needs to be without the confines or structure of an imposed objective.  (I hope I got that right mate - please correct me with a comment if I screwed up).  Ergo the system is broken but the fix may not have revealed itself yet.  Oh and BTW my old friend was great, it made me smile to think how unchanged she really is after 30 years of not seeing each other.  Yet again I am reminded of what terrific friends I picked all those years ago!

Just an update, I did take a cane/walking stick with me.  I never really realized before that it is like having a private portable banister or handrail whenever you want it, which is kind of cool.  (I have been a huge handrail user for years since a few falls down stairs, due to crappy balance, drummed it into my thick head.)  I was feeling pretty damn good yesterday and I really didn't need the cane though I must confess to giving it a lot more use on the way home when I was starting to get seriously tired.  Last night was one of those nights when the need to be horizontal overwhelmed hunger and thirst and was only trumped by the need to pee!

Whoops, I Overdid it Again (sans Britney)

I want to write and I did manage a cute heading but I am crying tired and aching all over and the need to be horizontal is completely dominating my thoughts.  It was a good day too, but maybe they are the danger days, they are the days I push too hard, ask too much, and forget Professor McAwfullyCute's 66% guide.

Friday, 21 October 2011

Storytime and Occupy Sydney

About seventeen years ago when I finally decided that constant pain was really worth mentioning to my GP he put me on an anti-inflammatory drug called Orudis (Ketoprofen) which is a Non-Steroidal Anti-Inflammatory (NSAID).  One pill a day which suits a busy slacker like me (my son was about 1 at the time).  He also said, "Welcome to middle age" which I thought was a bit rough seeing as I was only around 32 and most women live well past 64!  The first few days this drug was like a miracle for me, for the first time I was pretty much pain free.  Then, on about the third day, I got depressed... flat lined... no joy (even with my wonderful absence of pain) and started to cry... and cry... like a willow I wept!  On around day five I went back to the doctor who rapidly consulted his MIMS and found that in some infinitesimal percentage of people depression is a side effect.  Of course we immediately discontinued.  This was the real eye opener - the depression lifted and the PAIN came back, it came back in spades, with friends (whole tour buses of painful friends tap danced on my joints and muscles).   I was astounded by the level of pain that I had been living with... acclimated to...  Unfortunately, as an aside, further attempts at NSAIDS revealed that I have a reasonably serious allergy to them and because for some reason the doctors are worried about anaphylactic shock I am not allowed to take anything from an aspirin on up.  It's a real pain in the arse (and elsewhere in this case!).  So I am left with over the counter paracetamol/acetaminophen or narcotics and one is useless and the other twists my head.  I think the only reason I am dribbling on about this is that I had to fill out the questionnaire for the pain clinic today and it was a pain of its own kind.

I want to go to the Occupy Sydney rally tomorrow, even if I have to go alone I want to go.  I might even meet a friend there who I have not seen for 30 years (another story no doubt) which would be really cool!  Naturally there is a but...  I'm stressing out about walking too far and standing too long.  I think back to the anti-uranium rallies I attended as a girl in the 70's and I remember an aching back and sore feet from standing for so long (and I was a pretty fit athletic kid!).  I'm stressing out.  I tried to write a sentence on facebook chat to tell my old friend and I wrote and erased four times before deciding not to mention it.  I don't have any mobility aids (I used to have a cane in the US but it hurt my hand/elbow/shoulder too much to use it so I never used it, not even once) and I look resoundingly healthy (which makes my GP question my veracity when I tell him it hurts everywhere) but I am scared, I feel very vulnerable.  This is a VERY unusual state of affairs for me.  I am actually thinking of buying a walking stick before going in the morning.  In truth I have been thinking about getting one for a while but I have been resistant, very resistant...  I must say I was using the putter when I got exhausted on the golf course, the other day, and it did help.  My balance is not all that flash, I lurch along like an old drunk even on the rare occasions when I am sober! (just kidding).  Over half of the severe pain I get is such that it impacts my walking until it passes, at those times a cane would really help...  Why am I so resistant?  Why is this causing me such anxiety and concern?

Is it my ego or concern for my image?  It never bothered me when friends and former lovers used aids, am I that shallow?

Am I concerned people will think it is unnecessary or attention seeking?  Because after all I can get by without it most of the time.

Is it just plan stubborn cussedness that makes me not want to let go?  This is hard, it is another step of acceptance, one I may not be ready to take...

Am I going to let something like this stop me from contributing to a cause I believe in?

I really don't know what I am going to do about this but I am not going to decide tonight.  I will think about it , and if I am so lucky as to hear your opinions I will think about those too... I will make up my mind in the morning.

Wednesday, 19 October 2011

Confession time!

They say confession is good for the soul but mostly I think it is good for your stress level.

I have never been very good at accepting any limitations and it remains a challenge.  Asking more of my body and my mind has always been a component of my way of life.  The last five or so years have really knocked me around, in every way, and I must confess, for the first time in my life, my confidence is pretty badly dented (though hopefully not totaled!).  Yet, accepting limits is not my strong suit.  

Professor McAwfullyCute (the doc who came up with the nifty 'Undampened Stress Response Resulting In Widespread Chronic Pain' tagline (hereafter referred to as AUSRRIWCP)) said if I felt comfortable walking for half an hour I should walk for twenty minutes.  At that moment, though clearly I heard him, I think he was talking in rectangles and I was only understanding in triangles because that whole concept really didn't sink in.  He actually told me that pushing the envelope makes things worse not better - again I didn't grasp the real meaning of that, it seems so counter-intuitive not to be able to build fitness by gradually pushing harder.

I know I have talked about pain and the AUSRRIWCP (where are those catchy anagrams by the way???) before, but I'm not sure if I made it clear that this is an immensely variable condition.  I can't ever say there is NO pain at all but sometimes it is both tolerable and manageable, these are the GOOD days!

Yesterday was a GOOD day, after a couple of not too heavy pain pills I was feeling about as good as I ever do and as I mentioned in my blog yesterday it was a glorious day here in the most beautiful city on earth (and no, I have not seen them all but I have seen more than most people ever will and the only one that comes even close to Sydney is Cape Town - so there)! [deep breath]

Forgive me, body, for I have sinned.

Yesterday I was overcome with the urge to play golf and I failed to fight the temptation.  

The view to Rose Bay from Woollahara Golf Course (3rd Tee)

Here is my conscious mind's version of limitations - "don't take too many practice swings, move slowly, only play 9 - or less if it hurts too much... yadda yadda..."

The reality was that even by the second hole it was starting to hurt, but I pushed on...  I should have listened... I didn't.

Here is my body's attitude to my limitations - "SCREW YOU - tomorrow you will PAY!"  (My body is more vengeful that the most vicious tyrant in history - than even Caligula at his worst!)

Alas, tomorrow is now today...

On a lighter note a few days ago Diane J Standiford in her excellent blog A Stellarlife blogged about a childhood confession and asked her readers to tell their stories too... this was my comment.  (Please don't let my brother actually read this!)

I guess I was about 7. we had a huge, battered old table in the basement/rumpus room of our house and my mother had left some ghastly mauve paint lying around down there...  My oldest brother was very naughty and I was a pretty easy kid most of the time but I was angry with him...  I wrote HIS initials on the table in mauve paint.  It was just the sort of thing he would have done!  What was the difference between my mother and a nuclear bomb?  The bomb only explodes once!  No one has ever known to this day that it was me...

So I invite your confession - good for the soul remember!

PS - Seattle might be nearly as beautiful as Sydney if the sun ever shone and Auckland is pretty too.

Tuesday, 18 October 2011

Should I write this? (and the sequel Should I Post This?)

I'm not sure if I want this going out into the galaxy of infinite internet information...  it might be resigned to life as a draft... (not that very many people read my blog anyway)...  BUT...

I had an unusual experience this morning.  I woke from a dream in which I had found a woman attractive.  This probably doesn't sound too extraordinary but it is for me.

The dream was hazy, as they are; it didn't make very much sense, as they don't; and it disappeared all too quickly from my mind, as they do.  I had watched a woman in jeans and a western shirt (she could have been any of those very cute cowgirls at the gay rodeo in Denver) run back across a corral towards me.  She sat down beside me - I don't know who she was and she isn't familiar to my conscious mind, but in the dream I knew her, slightly - she turned towards me, very close - her face no more than 8 inches from mine - and she smiled and her eyes twinkled.  I said, "you have beautiful eyes".  For a moment something electric flashed between us, something that felt strangely like attraction, and she looked down, bashfully and mumbled "Thank you".  Then I woke up.  (I bet you thought we were going to kiss - my dreams aren't that raunchy!)

It isn't very noteworthy I know.  I suppose other people have lots of dreams like this.  I don't.  I don't dream about finding people attractive and I don't dream about falling in love, well not subconsciously anyway.  Attraction, for me, is so rarely visually stimulated.  It always (OK there was one exception back in my mid 20's and you know who you are!) begins with some kind of mental and emotional "CLICK".  I don't lust after attractive strangers or faces on a screen.  The physical attraction needs to support the emotional and intellectual - but it doesn't lead.

This story could go two ways here, I am sorely tempted to start down the "poor me" track (my self esteem is in the toilet, overweight, not very interesting, I walk like a 90 year old) - think I'm gonna eat worms! OR I could swing into "Positive Thinking" mode, which I myself seriously questioned in a blog the other day, and hypocritically decide to put my wishes "out into the universe".

So what do I want?  I would like to meet a woman who makes me laugh and who laughs at my half-witticisms, she MUST be bright, she doesn't need to be beautiful but it is important that something in her look appeals to me, sparkling eyes are a good start!  Not too screwed up is a learned requirement (but that's another story).  It doesn't seem too much to ask, does it?  Oh yeah, one last thing, I want her to think I am fabulous - (some degree of disassociation from reality might be an asset with this).

I guess she isn't going to turn up inside the house so I better go out and do something.  It is a glorious day in Sydney the options are limitless!

I am really bad at making social things happen, just a dash of social anxiety makes it stressful.  So any thoughts would be gratefully appreciated.

Sunday, 16 October 2011

It's a pain in the arse!

No, I mean it... it really is a pain in the arse!

Just a little background on the way Fibromyalgia (or AUSRRIWCP as it will forthwith be known (NOT)) affects me from a pain perspective.  I ache, everywhere from the tips of my toes to my hair follicles, it's a base line low to middle level pain that is OMNIPRESENT!  Things hurt all the time and they hurt more when they are moved, flexed, stressed, touched, pushed, pulled, caressed and generally whenever there is any kind of stimulus  either from the interior (me asking my body to do something) or from the exterior.  If you know what it feels like when you have the flu and you ache all over and your skin hurts then you have some idea of the constant baseline of pain.  Then there are the floating sharper more insistent pains and these ones wander around my body with no rhyme or reason.  It might be one hip flames up and walking becomes excruciating (I would use a cane but that hurts my hands wrists and shoulders), it could be a shoulder (can't lift my arm), neck (can't turn my head), back (let's not go there) etc.  The regular offenders in this area for me are hips, ankles, back, shoulders, knees, wrists and hands.  Right at this moment, in spite of the fact that I am relaxed and as comfortable as I ever get (and have taken pain medication), my left hip, my right shoulder and MY ARSE are in substantial pain.  Yes my arse... Not like haemorrhoids (I have given birth and I fully appreciate the epee up the butt joy of that kind of pain - but that isn't it) no it is my coccyx - lucky me!  This insignificant, ignored little joint, that has the range of motion of a steel girder at rest, has decided to assert its need for attention.  It's been extra insistent for the last few days and I know it was not helped by waiting over two hours to see the doctor this morning.  So if you see me walking even more strangely than usual or sitting delicately sideways on a chair you know it's just my resident pain in the arse!

Now the doctor .... hmmmm....what a frustrating morning...  I need the doctor to fill in a form for the government - he won't fill it in until I am assessed by a pain clinic - the pain clinic has a twelve month waiting period.  I can feel a catch 22 coming on here...  My alternatives:-

  • Get another doctor
  • Get the current doctor (please don't make me wait another 2 1/2 hours!!!) to give me a referral to a different pain clinic and hope their wait list is shorter, OR
  • Give up.
Now anyone with Fibromyalgia knows how immensely appealing it is to just give up.  Lots of people who have Fibro suffer from chronic fatigue syndrome and I'm not sure if I do or I don't.  Certainly I don't have much energy and my vim (whatever that is) and vigour are probably rating about 20 % or what they were even five years ago - so maybe I do...  What I do know is that being in pain is really tiring, it wears you out. I could spin that in a more exciting way and suggest I am constantly on an adventurous quest for a more comfortable position and it is exhausting - no that didn't work... looks like my marketing skills are abandoning me.  But if I give up... well, that will cause other, perhaps more serious, problems.

I've decided to try and get the doctor to give me an alternative referral and in the mean time - if I can summon up the energy I will look for a better and more helpful doctor.  

All in all - the whole thing is just a giant pain in the arse!

Friday, 14 October 2011

The Pessimistic Optimist Erupts

This little image appeared (originally from someone called Stevie Kidd) in my facebook feed today...

The accompanying text indicated that we need to take this step out of our comfort zones TODAY!

Well I looked at the diagram and considered my personal steps out of my comfort zone (that were MANY and varied) and how many of them actually landed in that enormous circle "where the magic happens" and I figured the diagram should look a little more like this...

I just listened to an interview on the radio with a woman called Barbara Ehrenreich who has written a book called Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America.  You can listen to the interesting interview here-

We have been completely swamped in the last few years by movements like "The Secret" and "Think and Grow Rich" and it makes me wonder if it has created a culture of ostrich-ism (no not ostracism though that is evident too).  It seems everyone was doing the ostrich thing while the mortgage industry collapsed into chaos.  Ms Ehrenreich suggests that it may have been viewed as negative if someone had said to their bank something like, "I'm concerned about our exposure to subprime mortages".

Could it be that this relentless dedication to positive thinking is really a way to tell people who have a problem to "Just shut up!"?  Is it the great ameliorate of all ills that it is purported to be or is it simply an unrealistic superficial way of chucking a Scarlet O'Hara and deciding to "think about that tomorrow"?

I have always deeply resented the "heartwarming" stories I see on TV of people who through positivity, grit and determination overcome a disease or a disability.  The partial paraplegic who is lauded for learning to walk again, to me, is a not so subtle put down of the person whose physical condition is unable to be overcome.  Positivity and determination WILL NOT allow someone with a severed spinal cord to walk, it doesn't allow someone with MS to halt the degeneration of their body, and it doesn't make my aches, pains and fatigue disappear.  I resent this slight against the people, of whom I am one, who have real constant issues that won't go away.

Getting fired or laid off is a REAL problem and is not as easily surmounted as those who have job security might think.  Studies about stress and satisfaction have indicated that seeing the final outcome of your labours is intrinsic to having less stress, a better self image, and a sense of accomplishment.  Is there anything more dissatisfying than sending resume after resume into the ether and receiving NO response?  Having a positive attitude becomes like a drug that requires a regular "fix".  You write a cover letter and send it off with high hopes and visions of success... you never hear back... you write another and hope again... etc etc....  There is a point at which pasting on the smile and imagining yourself in the position becomes kind of sad and desperate, and where you could easily fit into that classic definition of insanity - doing the same thing and expecting different results.  Sure if you get an interview and have a chance to actually meet someone THAT is the time for pumping yourself up like an East German female weight lifter and being UBER POSTIVE TO THE POWER OF 10!

I have stepped out of my comfort zone in this life more than almost anyone I know - almost every time I have seen an opportunity I have reached for it - and quite a few of those chances have failed and damaged me financially, physically and emotionally.  The simple act of leaping into the unknown wrapped in your positive attitude is DANGEROUS!  I took what at the time I described as "calculated risks" - I should have realized that I wasn't good at maths and that my calculations might be flawed!  Don't get me wrong, I have no regrets and I wouldn't give back the depth of experience I have gained through taking chances.  I have busted my comfort zone over and over and I will bust out of it again very soon I am sure - just as soon as I lick my wounds and try to heal a little from the damage caused last time.

My mother used to say "Hope for the best and prepare for the worst."  Mum was a child during The Great Depression and was one of the most positive and genuinely upbeat people I have ever known.  Her zest for life and rollicking enthusiasm were evident to anyone who had the privilege to meet her and I hope that I have inherited some of that spark.  She was right in her pessimistic optimism and I really believe the world would be a better place if BIG business and BIG government took a leaf from her book.

Tuesday, 11 October 2011

Being "other" - Other than what?

I think my self image is symbolized by a series of interwoven and overlapping bell curves and spectrums which contrasts with the equally interesting series of interwoven and overlapping bell curves and spectrums that depict the way others view me.  Like two fabrics with the same pattern in different colours.

Maybe this is not making sense... but imagine that nearly everything could be measured on a bell curve...  How tall are you?  8 foot is on the extreme right - 3 foot is on the extreme left and my 5 foot 6 inches is in that amalgamous clump in the middle.  So it is with sexuality and also with disability (in its many layers).  Curves, spectrums and methods of measuring people and ranking them against one another.

Don't go screaming out that people are people and we are all individuals - I know we are... in fact that is the very topic of this discussion!

The girlwiththecane made an interesting comment on my last blog that got me thinking...  She was referring to my parallel of butch being "visible lesbian" like certain physical disabilities are "visible disability" and mentioned the universality of being "other".   But is it "universal" and what is "other"?  Does a brunette cheer leader feel some sense of "differentness" (aka "otherness") because she is not blonde?  Does being overweight elicit the same feelings of "otherness" even though there are so many people who share that situation?  I know that one can feel an "otherness" when overseas or when culturally displaced... In fact my very name "Displaced" derives from this feeling of not belonging.  Is there anyone who doesn't feel a sense of "otherness"?

Even in our own families, where surely we have more commonalities than with strangers, most of us feel some sense of "otherness" of being "the black sheep" or of having been born into the wrong family.

Really is it only the narcissist (clearly the extreme edge of the bell curve or spectrum of self assuredness and ergo "other") who, in his or her delusions of perfection, sees themselves as belonging?

I must speak only for myself... I don't fit, I never did and I never really knew why.  I wasn't like other kids and I wasn't like my family.  When I finally understood that I was a lesbian in my very early 20's I attributed this sense of "otherness" to my previously misunderstood sexual preference... I guess I figured that others had felt or sensed something in me that I had not accepted or recognized yet.  Then I learned that I am also not like other lesbians and I don't really fit in with that crowd either.  Now I have this annoying issue with my invisible semi-disability and I feel like I don't quite fit with either the fully healthy, the sick or the disabled.

The people who I connect with are few and far between - they shine like gemstones catching a flicker of light  on the sands of an endless beach, when I catch that glimmer I set my course in that direction and hope to see the flash again because I know how truly rare those gemstones are.  I seem to find one, or if I am lucky two, per decade.  Even then it is not that we are so similar, or that we have any sense of "sameness", it is more that we value and appreciate our particular versions of individual "otherness".

My life in a nutshell;

I am NONE OF THE ABOVE  (and to be quite frank - nor are you.)

Sunday, 9 October 2011

To be seen or not to be seen? - That is the question

Is it better to have a visible disability and suffer the stigma of everyone who glances your way gawking and pre-judging you?  Or is it better to have an invisible disability that allows you to "pass" as "normal" (whatever the hell that is) but have to deal with the lack of acceptance of your condition by the people you meet?

One of my best friends has no arms - well, let me correct myself and honour her partial arms, she has a couple of inches below the armpit - hard to find a more visible disability without the flashing neon of a wheelchair.  I on the other hand have an invisible problem, until recently it was diagnosed as Fibromyalgia but now my new doctor tells me it is "an undampened stress response resulting in widespread chronic pain"...  (Please use those letters AUSRRIWCP to come up with a catchy acronym for me! I am SCRABBLE challenged.)  Anyhoo... back to the matter at hand.  We, my armless friend and I, have discussed this issue and we can both see the other side of the coin. I can only imagine what it is like to be stared at everywhere you go (mind you she is beautiful and would be stared at anyway) and she can only imagine dealing with people who discount your situation because they can't see it.

Interestingly I think there are parallels in the lesbian community... Butch women are often quite obviously lesbians and would need to abandon their authentic selves to "pass" as straight and femme women go through life only ever having to tell the people they want to tell.  Yet I have heard many femme women express annoyance at having to make that revelation and even greater irritation at having to deal with the denials of people who insist that they could be straight if they felt like it because they look just like a straight woman.

If, and I know this is unlikely, anyone is out there reading this post - I would love to hear your thoughts.

It might be funny if...

You know the "self-made man"?  Well I am the "self-unmade woman".  Given plenty of opportunities I have squandered them all.

You know the joke about playing the country song backwards - get your truck back, get your girlfriend back etc etc.  Sometimes I wish I could play my life backwards.

Loves and fortunes have been lost, health is questionable, security... what is that?

And yet...

Things are pretty good.  I'm a decent person and I have friends with whom I have been friends for a very long time.  I have fun and can find entertainment and amusement in the things around me.  Best of all - I see beauty and I appreciate it.

Still there are things I want to rant about and things I need to vocalize which are unfit for human consumption and so --- here is their forum.  The place where even the unforgivable is acceptable, where nothing is taboo.  As a general rule I tend towards sadness before anger but if you decide to read this rambling rant you are going to see the angry side of a not very angry person.

So if there is ever anyone who reads this... welcome to my world.