Fabrications

[arkallen]

They are building me a bus shelter! This is big news; but first to other things.

My Favourite Wife and I are blissfully rattling our way south to Melbourne, on a glorious afternoon finally hallmarked Spring after an icy, grey and protracted winter. Generous respite provision for our Little One allows us to make regular forays here and there; and the Southern Capital is slowly growing on us as a new favourite destination. A couple of nights together, some culture, some shopping, some dining out; and then Best Girl heads home while I stay on a few days to have my psychosis probed.

Every few months I seem to return in my weekly essay to a well worn topic: my presumed insanity. I’m compelled to follow that obsessive track once again today, and I ask your patience if my perspective seems a little … fixated.

Here is the current fodder for my paranoia, a regular nose-bag of angst:

· Eight full months of postponement and paper shuffling to achieve a respiratory assessment in a Melbourne Hospital.
· A year since I have seen a physiotherapist, despite requests.
· Four months on the waiting list to gain the much needed advice of an occupational therapist on how to build the ideal accessible bathroom.
· Another eight full months wait for an appointment with a new respiratory specialist an hour closer to our home; recently extended to ten months by the receipt of a new appointment advice card in the mail without a word of explanation.
· Four months of delays in the hospital admission I am about to attend; with three admission dates cancelled (including the ward clerk who rang our home one evening to see why I wasn’t there! She ought to have rung the admitting doctor who neglected to tell me...)
· And to round it all out my local Neurologit’s last words: “Come back in 9 months”. Six of the nine have passed, and it still stings when I recall his dismissive remarks.
​

Is there a pattern in this saga of medical disinterest? Is it the fault of the overstretched public health system? Am I too timid in my myriad exchanges? Is communication by email ineffective in grabbing people’s attention? (It is!)

Or ... could it be that the label ‘Functional Illness’ or ‘Psychogenic Complaint’ or perhaps even ‘Hypochondriasis’ is stamped on my file, and no one takes me seriously anymore? Back when I had a ‘real’ medical problem I never waited more than a month, two at the most, to see anyone or be admitted anywhere. Specialist, hospital, therapist – you name it, I got it. There must be some form of triage in each of these settings to establish priority, and I suspect I no longer attract much notice.

I had sometimes wondered if my fear that the doctors think my problems are ‘all in my head’ was itself ‘all in my head’ until I received the admission letter for this week’s hospital stay. I am not, it seems, scheduled for the Neurology review that my GP requested. Instead I am travelling 300km by train to see a Neuropsychologist. Do they think I am mad? I don’t imagine I will ever know for sure because the medical system is rather impenetrable; there are few avenues of recourse and nowhere much to take your complaint except to the very same Doctors that one slowly begins to mistrust. I have tried this: and they bite!


A wonderful surprise the day before we left home: footings for a new Bus Shelter.

At long last, work on The Coliseum (our grand, accessible bathroom) will commence at about the same moment as the neuropsycological exploration begins on Monday Morning. And, brilliantly, my bus shed will be under construction at the very same instant! More on the bus shelter next week perhaps; but surfice to say that on a day when my psyche is under attack and the bricks of our home are under the hammer; the council (ever the agent of Divine Providence) are expanding my world. They may not know it, but those diligent, energetic council labourers are preparing shade for hot summer days and shelter from driving rain – all for me! It will take more than a dissabled toilet, extra wide doorways, non-slip flooring or even psychoanalysis to keep me down!

Having almost finished my essay, I must apply the remainder of the rail journey to preparation for the awaiting medical horde. I once read the biography of a German Sergeant who had been a guard in the famous Colditz concentration camp during WWII. He described in detail the antics of the captured English officers who were ingenious beyond belief, and devastating in their attempts not only to escape, but to abrade the morale of the German guards. The Sergeant had found a single, powerful defence against the endless, diabolical humiliation he daily received from his enemies, who happened also to be his prisoners. A smile. Always smile. Never, he said, never, ever show anything else to your enemy.

I am preparing my smile right now. A relaxed, confident smile, befitting a man of forty nine and nine tenths. I must not smile too broadly, in case I appear to be enjoying life over much. A broad smile, for people with a disability, is a dangerous mistake around medicos. The expect one to sulk a little, to bear heavily the blows of life. Depression, I have been told by a learned Neurologist, is typical, and its absence is a sign of mental imbalance. I’m looking in the train window, smiling at my reflection, just to make sure I’m not mad. Oops! That was a maniacal leer, I must avoid that.

 

[laurel]

Good luck Roderick. EEK a neuro-psychologist! I am a retired RN and worked in psychiatry for many years. The neuro-psychologists that I worked with were an odd bunch. They didn't seem to fit well into the medical system. We had the psychiatrists who ruled like kings and who had disdain and mistrust of psychologists--didn't want them treading on their territory. Then we had the neurologists who were socially inadequate nerds who had no people skills at all and rarely interacted appropriately with any of us <g>. I was on the hospital soft ball team named the "Mad Hatters" (we were not politically correct back in the old days) and we played against the neuro-psychology department on many occasions. Still remember the inappropriate bat throwing from the head neuro-psychologist when his team lost--he hucked a bat once and it broke a car windshield. I would suggest no smiling at all Roderick. You will be a the mercy of a dept. that will use subjective observations versus objective ones--just my cynical point of view. No attacks of verbal diarrhea please or you will be up the creek without the paddle!
Laurel

 

[arkallen]

Well, all went smoothly and I think I might be sane. Maybe even officially.

 

[chriss]

Hi Roderick,

What you wrote struck a chord with me as I was unfairly labelled. Some people called me a very good advocate for Shane but some called me "a very difficult woman" or worse. I had to really push for services in some cases. I am in the process now that Shane has passed in following formal complaint processes.
When we first met the respiratory Dr from the Austin we already had a "probable" diagnosis of MND from the RMH. A letter had been sent from the specialist at RMH stating chest wall weakness etc. We had had a consultation with the neurolgist who had outlined the course of MND/ALS. Then we went into the respiratory dr from the Austin who said "why are you here today". My response "to get a Bipap as Shane is already having problems" His response was well the RFT from 3 months earlier was fine and why didn't he try losing weight. Took all my strength to stay calm. Long story short we waited and waited for the report on the ensuing sleep study and could not get the Bipap without it. The clinic totally unconcerned and would not progress it. Shane was having major breathing problems. Shane complained to the patient advocate/representative for the Austin and the report was done that day! Following week we went in for a RFT and the result was 41%. Don't know what would have happened if we had waited for them to do something. So perhaps try the hospital patient advocate/representative.

When we didn't get physio I found out the name of the manager for allied health at the community centre and wrote to her for an explanation. Next thing out came a physio.

Also if you have not had results from taking your concerns to a patient advocate or the service manager, the next step is to put them in writing to the Health Services Commissioner who must investigate. There is a website which gives information.
You have the right to apply for copies of your medical record or to view your medical record and select which sections you want copies of. The relevant legislation is the Freedom of information act and more importantly the Health Records act (which cover private practitioners also). A small fee may be charged. I helped Shane obtain a copy of his medical record from The Royal Melbourne and it was handy as we had copies of tests etc to produce when other practitioners could not find their copies. Often you make the application through the Health Information Service for most tertiary teaching hospitals.

Good luck with everything

Chris

 

[olly]

roderick,it may seem like in past posts that i have given you a hard time which honestly has never been my intention.
it seems to me that its not just your outlook to your disabilities that your neuro is questioning but the fact that there seems to be no pathological reason for your disabilities.
from your posts ect i presume they have found no pathological reason why you have lost your voice.
if there was pathological evidence then your bright and cheery outlook would not be questioned.
i know from 7yrs of experience and others that to be undiagnosed is a miserable place to find yourself .

after 2yrs of normal mri's when i first got ill my neuro sent me to a ms neuro for a second opinion,he had no answers but what he did say was that over the years he had patients who were in wheelchairs but they could not find anything pathologically wrong.
for some it could be conversion disorder which does not mean they are putting it on or can overcome it........the disabilities are just as real as if they had a pathological reason and there may not be any obvious psycological reason.
then again like my neuro said even the knowledge they have today they still know very little,there could be many neurological disorders they have not discovered yet.

i think at your next neuro appointment you should ask for a bulbar emg and i think theres a test that rose had to see if you have atrophy of the vocal cords.
i honestly dont think it is pls as you would not totally loose your voice.
umn=dysfunction and lmn=loss.

i sincerely hope you eventually get some answers and a diagnosis.