Thursday, December 7, 2017

Riding for the Great Forest - Bunyip 14.10.17

I’m going to start this piece of writing with this photograph to remind me of what a stunningly beautiful day it was when I rode in Bunyip State Forest, Gembrook. 

On a personal level I was full of anticipation and nerves, having only recently recovered from  having split my knee open requiring 10 stitches and I had only been back on my bike for three weeks. I knew my fitness level wasn’t brilliant and the group that I was riding with were all new faces to me. I had been corresponding with Aidan for some months after seeing some of his #ridingforthegreatforest posts on Facebook, trying to find a day when I could join in with his group and ride in the great forests. That day was finally here. 
On 14 October 2017, I picked Aiden up from Richmond station and we set off for Gembrook. Aidan is passionate about the forests, the ecology of the forests and of the connectedness of all life within the forests. That’s not just a ‘woofley’ hippy-treehugger, saying thing. There is a growing body of science that is able to describe & demonstrate to us the ways in which plants and soil activity interrelate and the way in which plants communicate with each other as well as with other beings in the environment. In my early career I was a horticulturalist, growing plants in commercial organisations and then teaching horticulture in the TAFE system. During those years I began to hear more and more about fungal relationships in soil with plant roots and the ways in which these microbes within the soil could affect plant health. Since those days there is more evidence that this association of fungi and roots and microbial activity is a two_way process not just a one way activity. We have known fora long time that there is true symbiosis between plants and other life, however beyond that, plants also have distinct relationships with their own kind and with other plants. 
On 14 October as we entered the forest trail and rode under those huge tree canopies, I was thinking of all of these things, breathing in the soft forest air and feeling the softness of the soil under my bike tyres. 

After some hard work (for me), climbing a gradual rise we made it to the Four Brothers picnic spot. A massive outcrop of four granite rocks with a spectacular view. Even with all the other riders there and other forest day-trippers, you could still sense the special aura of this place. Four Brothers is a place sacred to the first people and even we interlopers can sense that. Happily, we all parked our bikes and moved out of the rock outcrop, taking in the forest and the surrounding view. 

After lunch, we moved off and to my great joy I found we had a downhill section. Unfortunately for me this is where my story came to an abrupt end. Going a little faster than I should, when I touched the brakes to slow and avoid hitting a rock in the road, my front wheel got the shudders and I was unable to steer. I subsequently hit the rock and performed a rather spectacular crash, breaking my shoulder. 
As in all things of darkness there is always light, and in this case the light is the friendships that became forged at that point in time. Not only did the whole group stop to see what could be done for me, but once it was ascertained that I did need an ambulance, and the ambulance was called, four of the riders stayed with me and supported me in the most gentle and empathic way, whilst the others completed the day trip. 

So, there I was on the floor of the forest surrounded by beautiful floral smells, soft warm air and good company. It could have been way worse. Those four also organised for my bike and my car to be taken to Dandenong hospital and came in to see that I was okay. 
I’m six weeks post operation now and have a new shoulder that will set all the scanners off when I go to the airport. I also have a burning desire to get back into those forest tracks with Aidan and the crew and do it all again, although a little more cautiously.

I hope you enjoy the photos of the forest and the flowers and those wonderful boulders and I hope you feel inspired to join us on future rides to appreciate and save the Great Forest of Victoria.

Friday, May 19, 2017

So it's Friday: End of the working week. It's been a hard gig writing a blog post every night after work. There's 2 days worth of dishes in the sink, but I don't care; the house is a mess, but I don't care; the dining table's covered in bills and junk mail, but I don't care It's my time, time to think and recreate myself.

Today's topic prompt from the Bitter - Sweet blog is: More than Diabetes. 

The prompt says:
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  

There is so much else to what I am. Diabetes does not define me. It does not own me. It does not dictate my sense of self. 
Here are a few of the things that do define, own and dictate my sense of self and who I am.

  • My love of nature and landscape
  • My family and friends
  • My professiuonal life

I am a product of my family and the friendships that have been crafted over years. They are the holder of my memories and substance on this earth. I am the mother of a wonderful, talented, kind, extraordinary human. Born two years after my diagnosis, silent witness to my early struggles to try and 'normalise' my life with diabetes. Keeper of my heart.
I am a forever gardener, a lover of nature and of being in nature, the sea and the bush are the keepers of my soul.
I am workmate, mentor, experienced advisor, producer, leader and designer of my own professional life. My professional persona is intimately connected with my private persona and is the keeper of my sense of self.
I define myself by what I can do for others. I own my actions and decisions. I dictate my path through life. 
I am so much more than that 'Person With Diabetes'. 

Thursday, May 18, 2017

Throwback Thursday: What Brings Me Down?

Living with a chronic condition or illness is not easy. 

Each and any day can bring issues with illness, medication, technology. Often the effects of unforseen swings in glucose levels can leave me weak, tired, nauseous, light headed, headachy. Finding myself caught out by failed technology or unpredicted highs or lows while at work, can bring an unwanted level of anxiety, especially if I am dealing with colleagues or external clients. At times I can feel as if I don't want to deal with any more issues. Associated auto-immune conditions each contribute their burden, the pain and restricted mobility of osteo-arthritis, the lethargy of Hashimoto's. Each condition makes day to day living a little difficult. Do they make me depressed? No. Frustrated, anxious, awkward, pissed off, tired? Yes.
There's a lot of talk about 'Diabetes Burn-out'. When I read the stories of parents who are managing children with Type 1, my heart bleeds for them. Yes, I think they definitely get 'Burn-out' and depression, and I think many other T1's do too. It's not easy and if there are other issues going on a person's life, that burden of chronic disease can be a tipping point.
Depression is something different. Depression is when you don't want to get out of bed. Depression is when each day goes by in a grey blur. Depression is when you can't be bothered showering, cleaning your teeth, eating. It's when your emotions shut down and there is no joy.
I've been depressed, but it wan't because of my chronic conditions. It was more to do with extreme stress and a loss of self-worth when I was severely bullied at work, whilst going through an extended period of family tragedy with the illness and loss of four family members over a period of 6 years, and earlier in my life when I left my marriage of 16 years. Having chronic illnesses compounded that, but they weren't the cause of it.

On reflection, living with chronic illness means there is a greater need to maintain general balance in life. Steady employment and income, a safe domestic environment, healthy relationships, access to good food, recreational activity and social engagement all help us keep an even keel when our physical health is being difficult. 

Wednesday, May 17, 2017

The Blame Game - Blog #3

My own mother said, when I was diagnosed 35 years ago,
"Ah well; fair, fat and... (forty).

I was twenty five at the time, 172 cms and 68k. I soon set her right, but it was ten years later, after I'd married, had a baby, gained my bachelor degree as a teacher and moved to a regional town in north Queensland, that the visiting Endocrinologist really floored me when he said the same thing. By then I was a little heavier, about 72k, but by no means heavily overweight.
This throwaway line of "fair, fat and forty", has so many things wrong with it, whether someone is Type 1 or Type 2. At the time I just said to him, "I have juvenile diabetes, not the other sort. I'm insulin dependent!" and he looked at his notes studiously and didn't make any more remarks. I decided that he wasn't much good as an Endocrinologist and decided not to listen to anything else he had to say. Unfortunately he was the only specialist available in that regional centre and I had no support group nearby as my family were all in another state. Fortunately, the two things I had going for me were that I was a member of Diabetes Australia, Victoria and received their magazines every month and I had a great GP who understood Type 1 (though we didn't call it that then, it was still 'Juvenile Diabetes'). I made it my business to be in charge of my own health, to read the research and keep myself informed.
If I could go back now and put words in that north Queensland Endocrinologist's mouth, this is what I would have heard on that first visit to see him.
"I've been looking at your notes and I see you have Juvenile Diabetes. What sort of information have you been given about self-management? ... Is there anything that is worrying you at the moment, regarding your treatment and your health? .... I can see from your notes that you have been doing very well so far, you've had a baby and you're working full time. Let's have a look at your record book and see if there's anything we need to fine tune." 
This is how my current Endo communicates, and he's wonderful. We actually hugged at my last appt. after a particularly good HbA1C.

Doctor Tan, if you're still alive and listening, I hope you have improved your attention to patient detail and communication!
On the whole, after 35 years of it, I'm pretty immune to ignorant remarks. If the timing is right, I use it as an opportunity to educate and get people thinking a little more deeply about how those with chronic illness deal with life, if I strike someone particularly ignorant, I just say "This is how it works. If I go without insulin for 24 hours I will be in a coma, and if I don't have insulin for a couple of weeks, I will die. If I have too much insulin and can't get food to balance it, I will be in a coma and if the reaction is severe enough I will die. That's it, end of story." It usually shuts them up.

Tuesday, May 16, 2017

The Cost of Diabetes

Since the Trump election, I have watched with growing concern, my American friends comments and fears (on Social Media) about the cost of their basic needs for living with Type 1 Diabetes.
I am appalled that people have to beg the manufacturers to get insulin, I am appalled that insurance companies can dictate which 'brand/s' of insulin and other supplies, they will cover. I feel humbled by the knowledge that our system here in Australia, whilst far from perfect, ensures that everyone can afford their basic life-saving medication, and no-one, even the unemployed have to go without access to insulin. I guess you will see lots of posts that detail the actual expenditure to access supplies here in Australia, I'm not sure you will see many that explain how the system works.
We have a system which affords every Australian two things, basic treatment and basic drugs.
The system is made up of the following parts.
1: Cover under the Medicare legislation.
This cover guarantees treatment for basic health at General Practicioners and Hospitals.
People who are employed pay a 1.5% levy on their tax to help fund this. This levy will increase soon, but not by much, considering the benefit it gives.
2: Pharmaceutical Benefits Scheme (PBS)
PBS is like a government funded insurance scheme for supply of Prescribed drugs, ie; drugs that are registered by NHS and Prescribed by a registered Doctor. A prescription or 'script' for drugs may cost $15 or more (depending on the drug). When I get a script for insulin, my doctor will write a script for about 3 months supply and it will cost me about $15.
3: Private Health Insurance, (PHI)
PHI offers higher levels of health cover - private hospital, physio, dental, prosthetics, etc. I think that most PHI costs between $1500 and $3000 per annum. They don't usually cover supply of drugs, but may offer 'gap' insurance to cover out of pocket expenses.
4: Social Security Health Care Card 
The Health Care Card is available if you are unemployed or on a very low income. It allows you to purchase prescribed PBS drugs at an extremely low cost - about $6 per prescription. So if you are unemployed and need Insulin, your doctor will write a script for about 3 months supply of insulin and you will pay $6 for that supply.
5: Extra Medicare benefits for the chronically ill
Type 1 diabetes is recognised as a chronic illness here in Australia. GP's are allowed to refer us for other treatments at a reduced cost, mental health care plans, podiatry, optometrist, dietician advice and other allied health care needs that will enhance health care for us.

All the government funded schemes only cover basic needs, insulin, syringes or pens, glucometers & strips. Insulin pumps and cgms are not subsidised (for adults) and you need PHI to be able to access them. This is slowly changing. Some years ago insulin pump consumables, (sets and reservoirs) were added to PBS and now cost me about $80 for 3 months supply. CGMs are not covered for either sensors or transmitters. Some PHI's will cover the transmitter. This situation is evolving with our government committing to supply insulin pumps for under 18yr olds, and more recently, CGMS on a limited basis (for about 4000 children, there are 15,000 T1 children under 18 in Australia).
I think that the technology is improving so rapidly, that they are taking a cautious approach to funding.

On a personal level, I believe that access to insulin is a basic human right, as should be access to any life-saving drug, including proven cancer treatments. I am also well aware that hundreds of thousands of people globally, are completely denied any access to this drug at all.

In the balance, we need to convince governments that every dollar spent on supporting our access to
premium health care, will be returned and multiplied by the reduction of the need for support for associated long term complications and by the ability of the person with Type 1 to live a full and productive life including paying taxes.

Thursday, March 2, 2017

Being Type 1

I get a bit fed up with all the whingeing on social media. You know the ones, "no one sees
the invisible illness, the scars I bear, the depression and the feeling sick, the feeling tired after overnight hypos" etc etc.
Yes, that is part of it, but I always feel there is so much worse.

  • Watch someone die of cancer and tell me you'd rather have that, than Type 1.
  • Watch an interview with a refugee talking about what they have endured.
  • Watch a parent loose a child.

Just to put some context around this, I was diagnosed 35 years ago. I've gone from beef insulin to synthetic insulin, from needles to pens to pump, from 4 - 10 finger pricks a day to a CGMS.
I count myself lucky that I didn't have to live with sharpening my own needles and boiling them or with only urine tests to track the state of my bgls.

I count myself lucky that having this condition has strengthened me, demanding resilience, problem solving and self management skills. I count myself lucky that because of Type 1, I have been a little more disciplined in my life and not just drifted through it. I count myself lucky that having this condition means that for every day of the last 35 and a half years, I have understood very clearly that I was given a second chance at life, that I should have been dead at the age of 25 years.
I count myself lucky that through Type 1, I have met some amazing and exemplary individuals, who light the way and form a wonderful community.

I believe that T1 is the root cause of many of my personal achievements throughout my life.
I remember very clearly taking a decision about how I was going to live my life after my diagnosis and initial education about Type 1.
I decided very clearly that diabetes was not going to define my life. This became a prompt and a goad to never allow myself to make any excuses about participating, based on having Type 1.
So just to llustrate that you can live a 'normal' life with Type 1 Diabetes, here's what I've done since diagnosis:
  • I got married
  • I had a baby (there's another blog to be written there, about what the medical advice was like at the time!)
  • I continued my work career in horticulture
  • I rode horses on long distance rides and camping weekends and eventually bred, trained and showed horses all over Queensland - at times towing horse floats over 1000 klms.
  • I took on a teaching degree and career, progressed to top level management and completed a MBA.
  • I rode a motorbike from Townsville, north Queensland through central Australia to Adelaide, then across Victoria to Melbourne, then up the east coast back to Townsville, camping all the way. 
  • I took up cycling in my late 40's and cycled and camped all over Victoria.
  • I travelled to the USA, the UK, France, Spain, Morocco and New Zealand.
  • I hiked the High Atlas in Morocco, cycle toured for a month in France, and off-road cycle toured in New Zealand.

For most of the past 16 years I have chosen to live alone. I travel with friends or my daughter when I can, however I do not expect anyone to carry any share of managing my Type 1 routine, apart from knowing that I have it and knowing what to do if I need help, (when to call an ambulance and what to tell the ambulance / medical team).

I strongly believe that if I hadn't developed T1, I would probably have drifted more, been less determined to get as much as possible out of life and been more quiescent about what came my way, less likely to decide that if I wanted something it was up to me to make it happen.
The Type 1 community grows eveer more connected. New communications technology (social media) has created opportunities to connect and share, reducing the burden of feeling that we are alone and not understood. More frequently now, I get positive reactions from people when I talk about living with Type 1 and comments that show that they understand the difference between T1 andf T2.

I have concerns about ageing and how my needs will be managed in later years, but for now, my arthritis gives me more problems than my insulin dependancy!

Monday, November 28, 2016

I'm not sure where to start with this piece. There are so many threads to the centre of my thinking. Maybe I start in the centre. I want to write about cycling and what it means to be an ageing cyclist. An ageing me. But when I think about cycling I have to think about what it is that I like about it. And then I have to remember all the lovely rides I've done and remember my brother and those wet rides, those tough, testing rides and strange places we'd get to. The first time I got saturated out on a ride, stopping under a tree with him, and he in his typical way shrugging and saying, "it will be over soon" And it was and we rode on down Beach Rd and home again. Then the black, wet winter night when we first attended an Audax Club meeting, in Bells Hotel, South Melbourne and were caught up in the imagination of maybe doing a Paris-Brest-Paris, Randonee. The rides around regional Victoria, north, south, east and west, the Alpine Classic, those sad last years as he became ill and we clipped our wings, cut our cloth to suit the situation. Going up to the Alpine Classic that time he was dying and feeling guilty the whole time, that he wasn't there, and then within 12 months going once again as my next brother lay, desperately ill, waiting for a liver transplant. You see, these cycling stories became tainted by pain and illness. I lost a thread, I had injuries, not just of the body, but in my heart and soul. And so, year by year, I lost fitness, I accumulated physical injuries, a bulging disc, a knee out of alignment, arthritis in my hands, eventually in my hips and feet. In the intervening years, I've lost my mother and a sister, and shortly I will lose another brother.
I ride. I look for ways to motivate myself and I get back on the bike. I've taken my bike to France and to New Zealand (twice). I look for adventure trails, not quite MTB, but nearly. I know I'm not so fast now. I know it's unlikely I'll be as fast as I was in 2007 ever again. Now, there are so many rides I want to do. I read magazines and explore websites and live others experiences vicariously. I get a kick out of reading about racing cyclists, I love watching crazy people flying down insane mountain ridges on You Tube, and tracking people doing the Great Divide (USA) or the Tour de Aetoroa (NZ), or people bike-packing in remote corners of the earth. I want to be born again and do it all.
Yesterday I rode a personal time trial of 20 kilometres. I rode my fat-tyred, flat bar bike on our local bike path, slowing through the off leash dog park and though the centre of the local village. Not much you say. I posted a PB (of the last 3 years) of 22.4 kph. Today I could barely move. My hips and hands were locked up and the pain in my hips was a misery. Eventually I took painkillers and by mid-afternoon, I could move again. 20 kilometres! I shake my head. I used to have to do 200k to feel like this.