Perceptions of ability within disability...

Today I am going to see a new GP.  Anyone who has read this blog from the beginning (I really don't think you exist) will remember my trepidation and then my joy at my first visit to Dr McLovely, whom I am missing quite a lot!  I have been here nearly a month and I MUST get some prescription renewals.  I'm dreading it. I have to take my copy of 'War and Peace' (my medical file from Dr McLovely).

I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff...  Of course The Nurse and TLOML see me enough to see both my good days and my bad.  They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed.  Others don't.

On Saturday TLOML and I went on the ferry to the bigger city on the mainland.  Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain.  In anticipation I took my cane.  I think it is the first time I have used the cane on the island.  Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it.  Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said.  Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall.  I have to be really honest here, there just aren't all that many things I miss about the US;  I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates...  But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.

Using one of the courtesy scooters was a VERY hard thing to do the first time.  I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist.  I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet.  Saturday I longed for one of those courtesy scooters.  At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML.  I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel.  I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!

So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry.  It's an old problem and one that all of us with invisible conditions experience.  In Sydney when I went to the doctor I always used my cane.  It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible.  I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool!  Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.

It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself.  I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know...  Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.

So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?

Shopping... ugh...

The other day while I was waiting in the pain clinic I saw an advertisement on TV for some shoes.  I need some new shoes.  When I came home from the US I was RUTHLESS, I tell you, I was completely devoid of all RUTH!  Any shoes that were uncomfortable, worn, of just plain ugly were unceremoniously consigned to the Goodwill.  Any jeans or shorts that were too tight, same destiny.  (I still ended up with so much excess baggage to cost me nearly $1000 in baggage fees AND my carry-on bag was over 50 lbs and I couldn't lift it into the over-head locker without some help!)

Unfortunately among the rejects were some very nice semi dressy sandals that had a little heel (maybe an inch and a half), I used to wear them but the leather was a bit hard over my toes and they cut into my feet if I was in them for to long.  I also ditched my crocs (making The Boy happy because he thinks they are the ugliest shoes in the world) and my 'go to' comfy heels.  So anyway, the shoes advertised were very reasonably priced and I thought I might find something suitable there.  There was only one problem...  None of their stores are anywhere near where I live.

So today, after a pitiful night's (I say euphemistically) sleep I decided to head out to the factory outlet stores in the western burbs of Sydney.  In spite of the fact that I arrived only fifteen minutes after the centre opened there  was no handy parking, and there were definitely no disabled parking slots.  I'm not sure why but it seems here in Australia there are more "people with babies in prams" parking spots than disabled ones... I'm not sure why, but if I ever figure it out you will definitely hear from me.  I eventually found a parking spot and made my way into the stores.  The shoe outlet definitely did have lots of potentially suitable shoes but they only had a couple of chairs to sit in while trying on the shoes and working one-handed (as my other hand was busy with my portable banister) I juggled several pairs to try on.  I chose a nice pair of sandals with about a two inch heel and for good measure (and to annoy The Boy) I popped for the $5 for a pair of navy blue imitation Crocs too.  There is a reason I, a butchish lesbian, wear heels...  I know it seems a little incongruous but I have bilateral partial ruptures of my Achilles tendons and flat shoes cause all kinds of pain in that area (unfortunately heels cause all kinds of pain in other areas far to often).  A glance towards the two open registers showed lines of at least ten people each, so seeing as I was already there I decided to check out the jeans.  The good news is that I have lost about three inches around my waist!  (Never fear there is still plenty of me to go around, or should I say to be gone around?)  Anyway I did choose a pair of French blue jeans that I think look a little more flattering than the super baggy over-sized jeans I have been wearing lately.

Queues are NOT my friends.  Not only am I forced to be on my feet for much longer than is actually comfortable but I also have some issues about having strangers in my personal space and so I get a little anxious when I am in any kind of a "crush" of people.  I generally have to practice some self meditation to endure a queue, I picture golden sands, soft breezes, palm trees etc... I waited, for the most part with good grace, I did get a woman behind to hold my place for a moment while I grabbed a shirt for The Boy's Christmas present.  I finally paid and escaped and had a collapse for a few minutes on one of the couches in the middle of the passageway.  I did make one other purchase of a Christmas present from a cooking shop but by the time I was out of there I was seriously dragging my arse (which is ironically the antithesis of "hauling ass").  I was moving very slowly.  Normally my left side is much more painful than my right, for some reason, so I have become accustomed to holding my cane in my right hand but typically today, when I am also carrying shopping bags, my right knee decided to demand my attention.  It was very odd trying to coordinate with my cane in my left hand... it felt wrong.

When I got back to the car I was so relieved to flop into the seat that I just sat there for a while before pulling out, to the irritation of the people waiting for my spot.  I'm very happy to be home and horizontal again.  What an ordeal!

On a lighter note, today it is only six days until TLOML arrives for her first visit.  Things have been progressing very nicely on that front.  I still feel a little strange using her name and I'm not sure how comfortable I will be whispering "Displaced" to her in a tender moment, the idea of beginning a relationship with someone who has my name is kind of odd.  My friend The Mathematician calculated the odds of two people with our specific name becoming a couple and it came out to around one in a billion (based on name stats and population of the US, and a presumption of % of lesbians, and the eye of a frog and the hair of a stegosaurus, add water and stir).  It is entirely possible that we may actually be the ONLY couple in the world who share our particular name, which is really pretty cool I think!

It's no secret I am besotted!  I must say I have been getting a little anxious about our first meeting, the idea of my mental image of her combining with my memories of her from school and amalgamating into the reality of her live and in person sitting in my passenger seat is VERY exciting and a little frightening too!  Still, this experience is the best thing that has swum into my ken (to borrow from Keats) in many long and miserable years and win, lose, or draw I am grateful for every moment.

Rest assured - I will keep you posted!

The line between acceptance and giving up.

I really wish I had answers for this...

Wow there are so many things I want to talk about in this post that I don't know where to begin.  Perhaps with a story...

I once had a friend who was functioning in society fairly well but clearly had some difficulty maintaining a consistent approach to her life.  Then she received her diagnosis and suddenly everything became worse.  She began to embody and experience all the worst symptoms of her illness.  Her attempts to lead a normal life fell by the wayside as she quite tangibly embraced her diagnosis.  I am not judging her.  I know it had always been hard.

Back in 2009 I received a diagnosis of Fibromyalgia and in view of my friend's experience I decided not to research FMS and not to read any kind of list of symptoms.  I was vehemently opposed to "embracing the diagnosis".  So instead of reading the symptoms I listed the things I was experiencing and then investigated to see if they were FMS related.
Pain - Check
Fatigue - Check
Vertigo - Check
Poor balance - Check
Digestion issues - Check
Skin sensitivities - Check
Strange over the top startle/shock response - no check?
Trouble Swallowing - no check?
Clumsiness - Check
I just didn't want to subliminally convince myself to develop more problems than I already had.  I think this was probably a stupid approach but I was quite determined at the time.

Of course time passes, and things started to get worse, and I began to have to accept that I really couldn't ignore these problems.  This led to me wanting to find my community and wanting to relate to other people who really understood what was going on.  Those of you who know me personally know that I am a curious person and that I process and assimilate information very easily and really without trying.  So naturally the idea that I could not be educated about FMS became even more ridiculous when I reached out to others.

Still, as I have mentioned elsewhere, I had some strange delusion that coming home to Australia would make everything better...  somewhere in my mind I saw myself here (in Oz) as the same person I was who left here in 1999.  I'm not.

Please note that this blog is the product of a crappy, exhausted, painful day.  It isn't always like this and I don't always feel this bad.

I think my twisted idea of not learning so as not to embrace etc was just one form of denial, the whole 'healthy when I come home' thing was another...  I also think that my body is demanding that I accept what's going on and I think I am starting to do that.  (All this blogging helps BTW).  But there is a side effect of acceptance.

When I accept that I need help, in any form, I can relax a little from the constant battle to either hide my problems or "tough it out" and I now wonder if that was what I was seeing in my friend all those years ago.  Which makes me wonder if it is a good thing at all?

This morning I drove The Boy to the train station (he is off back up the coast to go to his school formal (the prom for my North American friends)) and I got out of the car and yelped in pain as my back reacted very badly to the change from being seated to standing.  I waited a few moments for the worst of the pain to pass and for the rest of my body to acclimate to standing.  Then carefully and tentatively I started to walk using my walking stick.  By now The Boy was 30 feet away from the car on the way into the train station.  He stopped and waited a bit and teased me about looking like an old grandma (not that I don't have many friends younger than I who have grand children) and then he asked me an interesting question.  He asked if I use the cane so that people don't bump into me.  It made me think about all the reasons I use the cane... sometimes... and I don't always use it... but it also made me think of the visual message that using it sends to others and the fact that it does have a supplementary benefit of making people steer clear.  I don't cope well with being bumped, my balance is terrible, every contact with my body hurts, if I fall it is excruciating (and I do fall too often), and I have anxiety about people, so I have a HUGE personal space.  The walking stick gives me more room and that is a good thing.  But it also allows me to let my weakness show and that is something I have avoided doing for my entire life.  Remember I was raised by a super stoic...

I guess I have rambled on long enough in this blog but I could go on for a long time yet if I let myself...  I guess I am just wondering how closely giving up or giving in is related to acceptance...

I read a really interesting little book last year by Richard Bach, the bloke who wrote Jonathan Livingstone Seagull, it was called 'Illusions: The Adventures of a Reluctant Messiah' and it was non religiously spiritual, full of really amazing messages about life the universe and everything... not the kind of thing I usually read but it had, LITERALLY, thrown itself into my path, it turned up in my car with no known source.  The salient point here is that the book began with a long 'hand written' list about The Master and a parable that related to creatures that lived on the bottom of a crystal river and clung to the rocks as the raging current ran over them until one creature released his/her grip on the bottom and was swept on by the current.  This creature met other creatures whose lives were different and experienced adventures and growth that clinging to the river bottom could never have provided...  It was a great read which unfortunately I left behind in the US.  I am that creature.  I have thrown myself on the mercy of the current.

In spite of this I am still struggling with these issues...  Is letting your pain show because you are becoming more accepting tantamount to giving up the fight?  How much of the fight was really about maintaining my identity as a healthy vital person?  How much of the fight was really about my ego and about what other people think?  How much of the fight was really about trying to cling to the bottom like all the other creatures?

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!

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.

You can see the rows of Riot Police behind the "Cop It Sweet" street theatre group who were doing the very Aussie thing - "taking the piss" out of the coppers.

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!

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.