That steep slippery slope of insecure employment

(Originally written August, 2015 for Eric Grollman’s blog https://conditionallyaccepted.com   – with thanks to Eric for suggested changes)

In Australia, we are not called ‘adjunct professors’ – a term commonly used in the United States.  Rather, we are called  ‘sessional’ or ‘casual academics‘.  And, as I understand it, these positions may include research, teaching, planning and coordinating units, supervision, student consultations, marking – yes, all the work of a ‘real’ (tenured) academic without the security.  Of course our CVs will say ‘academic’; our insecure employment status is not how we label ourselves or what we do.

 I am given a ‘contract’ of sorts, that over the 11 week trimester, I will be paid for teaching time, meetings and marking.  We can claim nothing during the 2-5 week ‘break’ when students are off on their placements.  The ‘breaks’ between trimesters means a break in income, unless, as often happens, the marking extends over this ‘break’, but that really is just stretching what we are entitled to.  My annual income can easily fall below what might be considered ‘poverty level’ and I am never sure that I will be granted any work for the next trimester.

Just back from my psychologist – first appointment I’ve had for around a year.  Because I was doing ok.  Or was it because I was doing ok for a while, and then as I sunk down lower and lower into depression, I just couldn’t even pause for a minute to even consider how I was doing?  I have written before about sessional/casual/insecure employment in academia, and links with mental health.  I want to share some of this story while it is fresh, and while I’m feeling better, and the way seems a bit clearer.  Should I use a pseudonym?  I won’t because I want to say it how it is, to make it as real as it is to me, and not pretend we can protect ourselves with some hidden persona – because that is part of the mess I continue to get myself into, by being myself, and by being as absolutely honest as I can, as me, Annabelle.

I realised I needed to seek help (again) because I was so, so angry.  I have worked so hard for so many years, studying, teaching, writing, preparing applications and for (the occasional) interviews granted for those ‘real’ positions that offer some kind of ongoing job security, to do the job(s) I am already doing.  I was working days, nights, and weekends, on preparing, reading, writing, marking, planning.  I was working so damned hard, that my house was an absolute mess, my health was suffering, my diet abominable.  I didn’t eat, I didn’t have time to eat!  I was angry that I was putting in all this work, and yet was still not achieving any recognition (beyond the pay, when I had time to work out and submit my pay claim for each hour worked, in each category – as long as it was within the limits set by my initial contract). And, no matter how much my students appreciated the time and energy I put into teaching, my employer had no clue.

I was angry because I couldn’t remember what it felt like to be simply ‘happy’.  Because I had no ‘holidays’ due – in fact, I couldn’t even work out what to do if I had a true ‘holiday’.  I had lost sight of the difference between ‘work time’ and ‘holiday time’; either I was working, or I was worrying about whether I would get any more work.  I was miserable company, every conversation seemed to come around to how angry I was, and why.  Yes, I knew I had a point, but really, that’s just how things are … suck it up.  There were no ‘answers’ that my friends could give, or that could improve how I was feeling – it’s just the way things are.

As a critical educator, ‘that’s just how it is’ is not good enough.  I want to question why it is this way, how we could improve this, how ‘this way’ is making people feel, and is this how things should be?  I want to help people see that it has only become ‘this way’ in academia because we have let it happen.  Because we feel that we can’t raise these issues (i.e., insecure employment, overwork, power in the workplace, institutional priorities, economics) because of the way things are (i.e., insecure employment, overwork, power in the work place, etc.).

So I found myself sinking deeper into this angry pit of depression, and my marking was due.  And a job had been advertised for which I thought I had a good chance (actually for doing what I already do).  I prioritised the application and preparation for the interview.  I failed to impress – no job.  Dreams of getting a ‘real job’ shelved.  Again.  Marking still due.  Feeling miserable, incapable, and yes, angry.  I managed to devote myself for four days and nights, in silence, laptop on my lap, and I got that marking done, before the administrative cut-off, but after the turnaround for students to receive their feedback.  The story got around, “Annabelle – late for her marking – again.”

And I haven’t even mentioned my children.  My 20 year old son who has spent his whole life with his mother studying and working, saying that I need to do this so that I can get a ‘real’ job.  And him telling me he didn’t want his six-year-old sister having to hear the same story as I sat at the computer, days and nights, working and worrying.  His six-year-old sister now spends the week with her dad, who takes her to school and looks after her everyday needs, so that I can concentrate more on my ‘work‘ and have time for her on the weekends and holidays.

The job I had lined up for the next trimester was suddenly no longer ‘available’.  The students I’d worked with, and who expressly wanted to work with me again, had no say, and neither did I.  I managed to procure two teaching units, both of which I’d taught before, one of which I had chaired the year before.  In an 11 week trimester, students are off on their practicums for between 3 and 5 weeks.  Hence, no pay, no work for me.  No money puts my mortgage, my bills, my bare existence in limbo.

Being angry and depressed, my head was full of questions, accusations, frustrations.  What have I done wrong?  I’ve asked questions, I’ve let my frustrations be known, I’ve put myself out there.  I’ve tried hard, but maybe I really am just not good enough?  Why haven’t I published?  I don’t have time!  I don’t have support!  I am a sessionally employed teacher – my university has no support of, or even expectation that sessional teaching staff need to do research and be involved in research groups, conferences or discussions.  My student evaluations sometimes tear my heart out – but I tried so hard!  I have good pedagogical reasons for being a ‘hard marker’, for not giving straightforward answers to questions, and, at times, not responding ‘appropriately’ (an unfair accusation that I am unable to respond to in anonymous evaluations).  And the significant number of  good comments suggest that I’ve helped and/or supported my students more than any other teacher they’ve had, that they appreciated the challenges I presented them with, or asked whether I could teach them again.  And yes, the good comments mean a lot to me; they recognise and appreciate the effort I put in.  So why doesn’t my employer?  And why can’t I be ‘rewarded’ with prior notice about my teaching load for the next trimester?  Why do I have to wait and wonder, and worry, and beg, and plead for enough work to pay my bills and support my family?

Yes, there were moments when I felt as if the world was conspiring against me.  This is part of the downhill misery slope: no  matter how hard I thought about it, the only reason for not being given the work was that I had displeased someone, somewhere along the way, and this was their way of getting rid of the problem – me.  Don’t be so paranoid Annabelle!  This is not about YOU!  This is just the way it is, why it is called “insecure employment”.  There are reasons that have nothing to do with you personally.  Ah yes, perhaps, but they do affect ME personally, and I have no alternative avenue to take – aside from leaving academia?  Sadly, there are many who have taken that path after years of frustration (e.g., http://www.howtoleaveacademia.com/ ).   Leave and go where?  Ah that steep, slippery slope.

My numerous chronic, but invisible health conditions, my children, my mortgage, my advancing age, my single parent status – none of these are reasons to get any special treatment.  But I do find myself at times railing against how much I have to deal with, and yet how little recognition or reward I receive for what I put in to my work.  I know, of course, I’m not alone there.  But to just suck it up?  Not complain?  Not share my story?  Not imagine that something could be different?

Advice to Self:

Don’t ask difficult questions; don’t ‘rock the boat’; don’t bring up the issues that everybody just has to deal with; don’t remind those who manage to work with the system of how they’ve had to compromise their ideals; and just do the job you’re being paid to do.

Of course, my psychologist does not suggest that my ‘issues’ would all be fixed if it wasn’t for the conditions of my employment.  Perhaps my ‘choice’ of employment is a result of the ‘issues’ I have.  Maybe the ‘precariousness’ of my employment is a choice that relates to my inability to commit?  Perhaps my commitment to honesty and asking the difficult questions, and interest in critical consciousness in all that I do is also a precursor (or result) of these ‘issues’?  I have no idea, and will be going back to my psychologist to try to learn how to avoid tripping over into that pit of angry despair again.  But, unfortunately, the issues that I have raised here and elsewhere are unlikely to go away.  And I really hope that others are able to avoid the pit, and maintain a dignified and fulfilling balance in their academic and personal lives.  And to keep on talking about it.

(Advice to Self be damned!) 

 

Later…

I recently completed a course in ‘mental first aid training’, that I thought might help me with better responding to my students’ needs, and situations I seem to find myself in as a confessor and ear to students with various serious issues impacting on their studies and their lives.  As a sessional, I had to battle a bit to get accepted into the course, which was for ‘all those who have direct contact with students’.  Hmm, sounds like something helpful for we casual teaching staff that take on a huge amount of the face to face work with students.

I completed the two day course and enjoyed it.  I didn’t learn a whole lot I didn’t know about mental health issues, but I did learn a whole lot about myself.  I learnt that this is part of my calling, that being an ear and a consoler for those suffering mental health issues, and in helping to support and encourage them through their course, is a large part of why I do what I do.  And why I do it in the way/s that I do.  And why I pine for collaborative and supportive work environments, rather than competitive, dismissive and nasty ones.

As a sessional, I have been told – by union representatives and by sessional, contracted and tenured peers, that I am doing a disservice in spending my time with students when I am not paid for it, not expected to do it, and increasingly, not even entitled to do it.  This role belongs to those for whom it is written into their job descriptions, and no matter that they are overworked, have no prior or working relationship with these individuals, or do not have the personality or desire to take on this role, I should leave it to them.  Somehow this will show that sessionals should be paid for this responsibility if they take it on, that managers and unit chairs are somehow better at this role than sessionals, and administrators are cleared of responsibility because this is made clear to all involved.

Again, as a sessional, I want my story to be heard – that is, a huge part of my satisfaction from my job, and recognition that what I do means something to someone, is through my contact with students.  Yes, unpaid time that I put in responding to emails, meeting with students and staying after class, that give me an opportunity to use my skills and to help a student in their time of need.  This is time well spent.  And I can come home to my family and tell them about this, and they feel proud – that their mother/daughter really cares about who she is working with – they see that this is what gives me some feeling of worth, so different to the rest of the frustrations I come home with.

I have been teaching sessionally for a long time now.  I am no longer a poor student trying to support my way through to my PhD.  I am an experienced, thoughtful, critical and reflexive practitioner and I am able to use my life experience to both teach and support my students in their journeys.  I am not looking for more money, simply some recognition and security in continuing the damned good job that I am doing.  But most of all, I do not want my role as mentor, as a willing ear, as a supporter, advisor and voice for my students’ needs and rights to be taken away from me because I am not a ‘real’ or tenured employee.

(2,345 words)

 

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A life that just gets better!

(Post Written for Diabetes Can’t Stop Me  link to post here)

Some Introductory details:

  • I was diagnosed with T1 diabetes in 1977, at the age of 11 years.
  • I was admitted to the Royal Children’s hospital (Melbourne) almost in a coma. I stayed in the hospital and was ‘trained’ to look after my condition over 2 weeks.
  • I was embarrassed and ashamed at that time and didn’t want anyone to know. My older brother (by 9 years) had been diagnosed at age 9 but he never talked about it.
  • My mother took the brunt of my care. She boiled my glass syringes and reusable needles every night, to soak in Methylated spirits until required.  I had to test my urine, using a dropper, test tubes and a magic tablet that was dropped in the tube, changed the colour and then was then measured up against a chart.
  • At the age of 13, more complications for my life after a serious car accident (Anglesea, during a Diabetes camp run by the RCH).
  • Needless to say, my teenage years were a mess, but I survived!

Skipping a few decades, I am now 51, working as a volunteer in Savannakhet, Laos – a little known landlocked country between Thailand, Cambodia, Vietnam, China and Myanmar.  I have two amazing children, a boy aged 21 and a girl aged 7, who still live in Melbourne where I grew up. I did a lot of study over the years, culminating in a PhD (Education) in 2011.  I volunteered in the Solomon Islands in 1994 after spending two crazy years in Kalgoorlie (Western Australia).  I never believed that having diabetes should stop me – and it hasn’t.

Not to say I’ve always been in the best of health, or particularly well-controlled.  My teenage years were a disaster – but having diabetes in a way stopped me from going as far awry as some of my friends did.  I have spent some time in hospital on occasions from DK (Diabetic ketoacidosis) and learnt a lot about my body and control in the process.  I felt close to death on occasions, and this is frightening, but gave me more determination to survive.

My son was born in 1995 (I was 29) – I spent 5 weeks in the RWH (Royal Women’s hospital) before his birth because of my badly controlled diabetes and risk of preeclampsia.  He was induced early, weighed 5lbs at birth and is now a healthy 21 years old.

My daughter was born in 2009 (I was 43) – and that was when I was able to go on pump therapy which has changed my diabetes control incredibly.  Another gorgeous healthy baby, induced but much easier than the first time around.  She is now an incredibly delightful child of 7, so much like me that I’m afraid she will be the next diabetic to join our extended family (currently – 2 siblings, 1 cousin and his child, 1 uncle – and who knows who else draws the next short straw?).

So, at the age of 51, with 40 years of diabetes under my belt, I am proud to say that it has actually incentivised me to conquer the odds, and do the best I can for humanity.  Here in Savannakhet, I am working at a Teacher Training College, with teachers who train young people from rural areas, so that they are able to return to their villages and share their knowledge as a teacher.  I feel appreciated for what I do, and I am so glad to be of help however I can.  Life here is not necessarily easy – complete lack of availability of the medications I need (I had to bring as much with me as I possibly could, and have cut back on blood tests and some medications so they don’t run out), the heat is constant – I’m always sweating, the food is so different to home, there is no suitable medical care locally and I must travel to Thailand or Vientiane for appropriate treatment for any problems that occur.

On the upside, I’m happier and more content than I’ve ever been before in my life.  I have everything I need.  My insulin requirements are much less than when in Australia (yes, even with the dreaded rice as a staple of my diet) and I have had incredible experiences and adventures.  And I appreciate life and every moment so much more.  I really thought, as a young badly controlled diabetic, threatened with blindness, amputations, and kidney disease for all my sins, that I would never get past 34 years.  Well I have, and I’m loving it!

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INFECTIOUS TALES

(Probably not so appealing to the squeamish – but good lessons to be learned…)

Some Pointers from a non-medical perspective:

  • Keep any open wound clean and covered when outdoors. Use your bottled water, and keep a supply of dressings.
  • Draw a circle (with pen) around any red areas. This is a sign of infection – if it is getting bigger, you have a problem.
  • Get any escalating problem seen to! Check the cleanliness of any medical help you get!
  • Don’t leave it, it is not like something back at home that fixes itself.

After too many tales of wheelchair bound travellers returning to Australia for treatment of infected wounds in the tropics (hey Kyra, hey Nik) I never wanted to get to that stage.  So when I fell over a drain (no I wasn’t drunk… see future post for the state of the footpaths in this region…) and grazed my leg, I made sure to clean it thoroughly and report it to my ICM (in country manager – for ‘just in case’ insurance purposes).

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The graze seemed ok and I covered and kept it clean, although was a raised lump underneath that wouldn’t go away.  After a few weeks I thought I’d better get it seen to.  I happened to walk past a clean looking medical clinic whilst away in Pakse (we’ve been warned not to get treatment for anything serious locally – I’ve visited the local hospital and can vouch for this!)  I went inside and surprisingly the guy at the desk had some English and took me in to see the doctor.  Again, minimal English but he ordered a blood test to check for infection, and sent me off with the nurse (who had no English at all).

She was good, laid me down on the bed and began work.  She cleaned it.  Then she dug a hole in it.  (youch).  She put what looked like a metal scone tray under my leg. Then she squeezed it.  (oooouuuucccchhhh).  Hard.  And harder.  I could feel something running down my leg and sat up to see … (bluuurrrrrgggghhhhh).  Well it was mostly blood.  Coagulated blood.  And clear fluid.  She made me lay back down AND KEPT ON SQUEEZING as hard as she could.  By that time I was biting into my finger and making little yelping sounds.

The big lump under my skin was not quite so big by the time she stopped squeezing, but she hadn’t finished yet…  She kept on saying, encouragingly, what I thought was ‘saep lai’ – which in my limited Lao means ‘It’s very delicious’!  Couldn’t be, surely?  (Later I checked my dictionary, the word for ‘infected/inflamed’ is ak-sayp – I’m guessing this might have been what she was referring to…)  By that time I was saying no, no, that’s enough!  I then watched her as she took off her sterile glove and began cutting a strip off it.  I think I must have been distracted by more pain as she worked away and was utterly relieved when she covered it up and let me go.  The doctor wanted to know how to spell ‘divorced’ and was very happy at learning a new word in the form filling exercise, and sent me off with a warning that it needed to be checked again the next day for more cleaning and signs of spreading of infection.

Back at the hotel the next day, after letting my ICM know, and him putting all resources into immediate action, I was waiting to be picked up by a car that would take me back to Savannakhet to pick up my things before getting to a place with more medical help.  My friend and colleague (working in Pakse TTC) was with me and I thought I’d better check the wound and wash it down, and re-cover it (the nurse’s handiwork with a bandage had actually fallen off as I was walking and it was looking like a right old mess).  So I poured some bottled water over it and wiped around it to make sure it was clean.  I noticed a little bit of white stuff on the sore part, maybe a bit of stray bandage, so I pulled on it.  Poor Debbie was my witness as I pulled out about 10cm strip of plastic sterile glove OUT OF MY WOUND.  (gulp, eeerrrrgggghhhhh)

OK, get over it, driver was getting impatient so cleaned and covered it again and got into the car.  The driver also had no English – he was not the regular driver, and I realised later when we were driving around lost in Savannakhet that he had no idea where to go.  The trip that took the bus 5 hours was done in about 2 ½ hours.  We passed every vehicle (and animal) on the road.  He drove like a mad man.  He refused to stop for anything, even though I was hanging out for a smoko.  When it started getting dark (about 5.30pm) I could see why he was in such a hurry to get on the way.  All those obstacles on and beside the road – bikes with no rear lights (often they ride with no front light on either, and on either side of the road), slow vehicles, cows, goats, dogs … bad enough in the daytime – far worse at night and in a hurry!

Well, made it home ok – forgot to mention the other complication, my phone had broken, being Sunday the shops were closed, my (work) computer is a dud and won’t let me get online, so I was also relying on other people with phones…  Thanks to Debbie in Pakse, and Susan in Savannakhet, and David (ICM) for his initiative, all things were put into motion.  Finally home I packed my bag (medications, passport, clothes for a few days) and managed to make contact with the medical insurance company and send them the latest photo of my wound.  I seemed to remember in the case of an infected abscess a few years ago (another joy of diabetes) that it was useful to draw with pen around any swelling or redness so hence the artwork around the wound in the photos.  Luckily it didn’t seem to be spreading or swelling up further.

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The next day the medical insurance people were still umming and ahhing about whether or not they’d cover me for a trip to a decent medical facility.  They decided yes at about 3pm and I headed straight off to airport for the ‘4pm flight’.  By that time the last plane was fully booked and I was put on standby – first they just said no, then after talking with David on my new phone (I’d been busy that morning – new phone but almost completely broke) said they would know by 6pm if there were any ‘no-shows’, and hence a seat available.

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The Airport Viewing Lounge
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The beer Lao – locked away.

At 6pm, after hovering around the sales office for 20mins, they asked me in, took my passport, looked at the computer and I got the ‘computer says noooooooo’.  Sorry?  No!  Look, I need to get to the hospital (big sad face).  Some more tap tap tapping on the computer and it seemed that one seat had appeared out of nowhere, and it had my name on it!  Phew.  Flew out on the 4pm plane at 6.30pm, surrounded by empty seats.  Huh?  But then we flew south to Pakse and got off the plane to pick up the rest of the passengers and sure enough, it was full to brimming!  Onwards bound, north to Vientiane, and taxi to good old familiar Alie and Hotel Lao.  And my Korean friends at the nearby restaurant who still remembered me from 6 weeks ago and invited me to join them.

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Set off to Australian Embassy Clinic the next day.  Dr Michelle is a breath of Australian speaking fresh air.  I love her!  And she speaks the Aussie Lingo!  Even if she does make babies cry (the previous patient was there for her jabs).  She congratulated me for coming in and having it seen to, and commented that the Pakse Clinic had actually done all the right things – blood test, cleaning out the wound and keeping the wound open – hence the rubber glove trick.  Put me on antibiotics (Augmentin Duo), took a swab to check what the infection was – ie what antibiotics would work – cleaned and covered it, and asked me to come back so she could check it the next day, and then for reassessment on Friday.

It is now Wednesday, and she is pleased with progress.  Still oozing, still red and inflamed, but getting better!  So fingers crossed that the wheelchair will not be needed in my case!

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After a number of checkups and some good times in Vientiane (luckily I only had a sore leg, no other symptoms) I was declared fit and ready to travel on Tuesday.  Unfortunately no flights to Savannakhet until Saturday so this little trip for good medical intervention turned into quite a long stay away from my home and workplace.  I have learnt some more lessons along the way and had rather an eventful two weeks.  Left work on Wednesday October …. Headed for Pakse  (see Pakse and Beyond post) and returned to work itching to get going on November …….  Wouldn’t want to be in a hurry!  (Luckily I’m not…)  Bor Pen Nyung (it’s ok…)

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Personal Health & Wellbeing – surely it takes precedence?

Today I was sitting in my Lao language class and I realised that I’d forgotten to reload my pump (insulin supply) and it had run out.  I was running on empty.  I mentioned this to my colleague Susan, who has been fully briefed on potential issues for a diabetic and she said – you must go now and fix it up.  Thank you Susan.

Wow.  I thought about how many times I’ve sat in classes, meetings, doing busy work or whatever situation – even socially with friends, colleagues etc., and put my own (diabetic) needs last.  No I can’t let my diabetes be an inconvenience to others, I must keep going and then when I do get the chance to fix things up, I deal with the consequences on my own.  The soaring out-of-control blood sugar levels, the ‘hypo hangover’, the difficulties in getting the body into catch up mode.  The panic and distraction of trying to work out where I might get a syringe from, how I might get my levels back under control, how I might get home myself to access my supplies.  And I’ve done all this on the quiet because I never wanted to bother anyone!  I didn’t want my ‘problems’ to become other people’s problem.

So after 40 years of having diabetes, for virtually the first time I have been given the permission to prioritise my health and wellbeing over everything else.  I have a whole action contingency plan (under medical insurance) so that if I need to get specialised help, I will.  Other people who might be able to get me over the boarder to Thailand or to better health care have been briefed.  I have a whole team that is actually at the ready to take care of my health needs if it became necessary.

After a life of ‘looking after myself’, and not wanting to bother anyone with my condition(s), and never wanting to appear to be any more helpless than anyone else (when in actual fact I have virtually never taken time off work due to my chronic condition(s) – no work/no pay being partly the reason!), I have finally found my self in a position where I feel entitled to put my health and well-being needs first.  And this is as a volunteer in a developing country.  What is wrong with our ‘first world/Western’ mentality that it has taken me this long to feel that I can?

#T1D : Diabetes+ is a persistent pain!

type 1 diabetes  link to info – diabetes australia
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Renza writes a chatty and informative blog about living with Type one Diabetes and this post entitled Confusion succinctly describes the tussle of living with vs suffering from this ‘condition/disease’.    During my young adult years, the only people with diabetes that I met (not many) seemed to be super heroes with their management, unlike me who felt as if I was constantly fighting a losing battle with blood sugar levels, and hence, a very bad diabetic who deserved every complication that would inevitably catch up with me.  Social networking and the internet has changed this – yes the good stories, and the bad stories, and every story in between is out there to share.  Finally I began to feel like I was no better or worse than others in the way I ‘managed my condition’ (there we go again with that language).

I was diagnosed close to 40 years ago and was ‘educated’ about what would happen if I didn’t control my blood sugar levels.  The big ones were always:

  • blindness (retinopathy)
  • kidney (renal) failure
  • neuropathy (leading to amputation of feet etc)

So I was most grateful to get to my age with full function of each of these things.  However, the shock was/is finding the number of other ‘conditions’ that those with diabetes just happen to be more susceptible to.  For me, these have included:

  • Hypothyroidism – Hashimotos (another autoimmune condition);
  • Tendon problems – including Carpal Tunnel, Trigger finger (stenosing tenosynovitis), and now months of shoulder pain;
  • Cysts that may become seriously infected – and the risk that any infection is slower to heal with diabetes (10 days in hospital and home visits for a week after that)
  • Retinopathy that has required painful laser treatments to prevent blindness
  • Pre-eclampsia necessitating 3 months in hospital before my son was born
  • As for ‘diabetes and mental health/depression‘, let’s not even go there.

This is not a ‘woe is me’ post, but I’m not sure I really want to hear the same refrain “Oh yes, it is common with diabetics” too much more.  Like today when I went to the opthamologist for my eyes and he tells me I must come back due to some changes that may indicate ‘neovascular glaucoma’:

The less-common neovascular glaucoma that tends to be associated with diabetes occurs when new, abnormal blood vessels grow on the iris, the colored part of the eye.

So there are times that I just don’t want to know any more.  I can get this information if I search for it (thank you internet) but today I just want to forget about it.  That ‘living with diabetes’ is persistent pain in the arse and all the effort put into managing it will never make up for all of those moments that could have been better spent on other things.

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#T1D – medical supplies for a year?

(I’m now up to update number 5 on this post … and off to see my member of parliament – this is despicable!)  

Final Update!  see final post… and come visit me in hospital if that’s what it comes to…

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Over the 365 days I will be out of Australia, I require:

  • Blood glucose testing strips x 1,850= 37 containers
  • Tubing and insertion devices for pump x 124 = 13 boxes (x2)
  • Insulin @ ~40 units/day = 14600/yr = 146 1ml bottles = ~30 boxes
  • Additional ‘spare’ supplies (pens & needles) for any malfunctions

and then of course there is all the other medication I have to take daily (currently 5 different tablets)  x 365.  Aside from the fact that all of this is pretty damned expensive, it is very difficult to get ‘permission’ to get subsidised medication and supplies to take out of the country in such large quantities.  (Strangely enough, I have never had problems with customs in any country I’ve been to – often my hand luggage is actually a cool pack full of medication!)
ndssNDSS – After have no success or helpful information from any source, I sent the following message to NDSS (all diabetes ‘comsumables’ are subsidised and need to be ordered through them) :

I am  volunteering overseas for 12 months in Laos and require 12 months worth of supplies (pump and blood testing strips) to take with me. However, both the pharmacy and the phone line have informed me that I cannot take more than 6 months worth. This is a huge problem for me. I thought that I could get a letter from my doctor to enable me to get extra supplies but nobody can tell me if this is correct. My sister (also a diabetic) is visiting in 6 months time, but apparently she cannot request supplies for me, or on my behalf. Financially, this is also very difficult to pay the subsidised cost in full, but clearly necessary to maintain my health.
Could you please tell me what my options might be?
Thank you, Annabelle Leve

Looking more closely at their website  I see that :

The NDSS gives you access to a large range of subsidised products that help you to affordably self-manage your diabetes. …
There are limits to the nuliving withmber of products you may purchase on the NDSS. These limits are:
  • 900 strips …
  • 90 cannulae and/or
  • 90 reservoirs/cartridges
per 180 day period. …
Access to the NDSS is only available while you’re living in Australia.
If you’re travelling or living overseas, the NDSS is not permitted to send products to you. Before travelling, please review your product requirements. You can buy up to 6 months’ worth of products to take with you, but is also advisable to have a letter from your doctor to ensure you get through customs.

There is also an additional page with some useful information for travelling – but not for 12 month trips obviously!

OK … I’ll be patient – no response yet, to either phone call or emailed message.  I’m still WAITING!!!  I’m getting CONCERNED!!!  I need to get this SORTED!!!

As for the prescribed medication, I’ve been told different things (again) by pharmacist and doctor about “Regulation 24″ which apparently entitles me to 6 months worth – pharmacist advises me to get doctor to write TWO regulation 24 scripts – doctor unaware of such a thing … still on hold for next appointment.  

Oh, did find out that the 2 prescriptions should NOT be dated the same day – the next day is fine, just not the same day (der??) – advice from Pharmacist, but she wasn’t sure either…

UPDATE (12 days later)

Aside from having my arms jabbed at least 12 times over the previous month, and collecting a bag of 12months of malaria prophylaxis, I am in fact none the wiser about how to get my 12 months worth of everything else.  I’ve asked more people, but nobody seems to know!  The doctors don’t know, NDSS won’t respond except for a big NO, where to next????  Can anyone help /advise me here?  I have two more appointments, one with Diabetes Clinic (and no, the diabetes educator doesn’t know either) and one with my GP, over the next two weeks or so – hopefully it will get sorted!

Perhaps, on either the 31st August, or six months later, I’ll just have to say oh, sorry, I’ve got to go home now because I’ve run out of my life-saving medications.

UPDATE 2 (29th July – one month pre-departure)

Finally got through on the phone line and was once again told only 6 months worth… Yes, I know that, so what options do I have?  Well she says, all I know is that you can only have 6 months … ah, yes, so what happens when I run out?  Well to give her credit, Angela went away to find out, and came back to tell me I could get 20% extra.  Hmmm, ok … and then?  Apparently when most people go overseas they find out about supplies available in-country, I somehow don’t think there would be many diabetics in Laos on insulin pump therapy – maybe I’m wrong but …

So now I have an email address and contact name to write to with my request.  Clearly my other email got lost somewhere along the line.  Again, wish me luck?

Email sent 29/7/16:

Att: Geeta

NDSS Membership No: 00xxxxx
I understand that NDSS supplies are limited to 6 months worth, however I have particular circumstances that necessitate a 12 month supply as follows:
  1. CONTOUR NEXT – Blood glucose testing strips x 5/day= 1,850= 19 boxes (x100/box)
  2. MiniMed Sure-T Paradigm 60cm, 8mm:  10per box: 1 every 3 days = total 122 = 13 boxes
  3. Medtronic Reservoir Paradigm 10per box: 1 every 3 days = total 122 = 13 boxes
My local NDSS pharmacy is: Chemmart

Some additional information in support of this request:

Annabelle Leve  is a volunteer who will be travelling overseas as part of the XXX program managed by XXX.

The XXX Program aims to strengthen the mutual understanding between Australia and countries in Asia and the Pacific, as well as make a positive contribution to development as part of the XXX program.

I would appreciate your consideration of this request, being mindful of my departure date on 31 August.

Thank you and regards, Annabelle

Later… A very quick response this time… as follows:
(not once have I been given an alternative – even if it means paying full price…)

Geeta Srinivasan <GSrinivasan@diabetesvic.org.au>

16:19 (2 hours ago)
to Mark, Angela, me

Hi Annabelle,

With regards to your request of products for 12 months;

The Commonwealth limits are a maximum 6 month supply, this equivalent to PBS regulation 24, which allows a script and 5 repeats as a maximum supply. There is NO provision under Commonwealth guidance for supply greater than 6 months for any registrant, regardless of circumstance

Any further enquiries need to be directed to Diabetes Australia on ndss@diabetesaustralia.com.au

Kind regards,

Geeta

Primary Care Engagement Officer

Diabetes Victoria

570 Elizabeth Street

Melbourne Vic 3000

Mobile:  0477 102 099

Fax: (03) 9667 1779

gsrinivasan@diabetesvic.org.au

Update 3 (5 August)

I have sent an email explaining my situation to the company that supplies the product, Medtronic Australasia – they responded on 1st August as follows:

Thank you for your email. It has been forwarded onto the Diabetes department and a representative will be in contact with you.

No news yet.

Tried making a complaint to the Commonwealth Ombudsman – they suggested diabetes Australia, NDSS, or maybe the health department?  Nicole said she would call back … but no.

Just wrote and sent the following email to Diabetes Australia:

To whom it may concern
I have copied below, an email I sent to NDSS and the response I was given.  I have been trying to resolve this issue for awhile now due to the circumstances described below.  I have received no assistance or advice as to what my options might be.  I am not in a position to return to Australia within 12 months from departure (31st August) but remain an Australian citizen with diabetes management requirements.  I’d appreciate some help/advice on this matter as soon as possible please.
(copy of email to NDSS Vic as advised after a number of phone calls, and their response)
So… I guess I’ll just have to keep waiting…

Update 4 (8 August)

A slightly more informative response from Diabetes Australia, but still a blanket no, unless: “if you were overseas as an employee of the Commonwealth, where product can be delivered to a consul or commission”

Good Morning Annabelle

Thank you for your email. Diabetes Australia administers the NDSS on behalf of the Australian Government. This includes oversight of product supply and implementation of limitations that apply to the provision of NDSS products as a Commonwealth program.

As you have outlined below,  you will be leaving Australia for a period of 12 months from the close of August and will be required to exit Australian territories with the medications and consumables to manage your diabetes.

All Australian citizens are able to exit Australian territories with a maximum of 6 months’ supply of medication or consumables as provided by a Commonwealth program, such as the NDSS or Pharmaceutical Benefits Scheme (PBS). Once you leave Australian territories, you are unable to access the NDSS or PBS whilst overseas. The only exception that would apply is if you were overseas as an employee of the Commonwealth, where product can be delivered to a consul or commission.

In your circumstance you are able to exit Australia with the maximum 6 month supply of NDSS items as outlined by the Australian Government.

There is no provision or allowance for a greater supply of NDSS items. This will equate to the following maximums:

  • Blood Glucose Test strips –  900 strips (9 x 100 pack)
  • Insulin Pump Infusion Sets – 9 boxes (90 units)
  • Reservoirs – 9 boxes (90 units)

If you have any further questions, please contact myself or my team directly.

Regards

Darren

Update 5 (10 August)

Well, it’s about time this saga came to a close!  I had a most informative talk today with Dr Bob Cass, my sending organisation’s chief medical adviser.  Apparently he has been fighting for such cases for years and the government bureaucracy stymies any efforts to make any changes to the system, for any (legitimate) reason.  So now I know, that our government will not allow more than 6 months medical supplies to be obtained by any Australian citizen/taxpayer, which has the following potential impacts:

  1. Anyone with a chronic condition that requires ongoing medical intervention/treatment is effectively prevented from volunteering/working/travelling overseas for more than 6 months at a time;
  2. Is put in a position where they may cut/alter/change/stop medication because it is either unavailable or unaffordable to obtain;
  3. Risk their long term health outcomes and potential need for emergency care or evacuation back to Australian Health care providers;
  4. Break the law by ‘doctor shopping’ and filling prescriptions in different locations;
  5. Stockpile medications in any way possible;

Next stop, my local Member of Parliament….

Final Update  (19 August)

Best advice?  Stockpile.  Eke it out.  Get as much as you can to take with you.  Use as much of the insulin as you can get out of the vial.  With the pump, extend to 4 days per change if possible.  Other meds – maybe I can halve my dose to last double the time.  Maybe I can buy some things in Thailand.  Maybe I can get any visitors to bring some supplies with them.  Or hey, self fund a return trip to pick up my next entitlement in 6 months time – an expensive and really quite unnecessary option.

But overall, none of this is ideal.  I am forced to play with my health in order to ‘serve the country’, as per Australia’s overseas aid contribution, for 12 months overseas because our health system will not allow for any reason to obtain more than 6 month’s supply of medication (or pump supplies).   In the long run, I suppose Medicare will pick up the bill for any long term health consequences.  Doesn’t make a whole lot of sense to me.

Living with diabetes type 1

Do you want to know something?  Living with diabetes is a pain in the arse.  I’ve had 40 years of it – it is one of those ‘hidden’ disabilities, it is just there, always there, always impacting on how I feel, what I can do, even how I think and behave.  It is not just a physical thing, it affects my brain – I can’t ever ‘forget’, it affects my moods, my competence, my confidence and even the words that come out of my mouth.  I fill out a form – do you have any disabilities?  No!  I am as competent as anyone.  More so in fact, because I have a hidden disability that I have to deal with every day.

At the age of 11 I got this damned thing.  I went through my teenage years denying it – don’t treat me any different!  But if you were told, at the age of 11, that if you don’t follow the rules and look after yourself, you are likely to end up blind, lose your feet, on kidney dialysis, would that suddenly make you ‘behave yourself?’  Or perhaps goddamned it, I’m going to live my life to the fullest and fuck living for a long time, I’m going to live for a good time?  And then you get caught up in a car accident at the age of 13 and your life is fucked anyway, and if you live until you’re 30 then you’re doing damned well?

Jeez, and people wonder how I turned out the way I did.  I am.  And I’m 50 now.  And I’m off again to challenge the naysayers of 1977.  I have my sight, I have my feet, my kidneys are doing fine.  I’m in the process of trying to get enough medical supplies to last me the year I’m away.  Anybody would think I’m the first and only person ever to have asked!  I know I will have a massive supply of medication to take with me, yes, diabetes and all its complications are a pain in the arse!  But it will not stop me from doing what I want to … need to do.

diabetes-type-1-and-2-differences
Know the Difference!