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.

Saturday, September 19, 2015

Set Changes

Living with T1 Technology

After yet another sleepless night responding to alarms from my insulin pump and sensor, I thought I’d better get it all written down to show the endocrinologist. If I wind the clock back to last Thursday the 10th of September, I’d had 3 or 4 days of continuously high BGL’s sitting around 10 and nothing I did would make them drop any lower, finally that day, I decided to change the site. When I took the old insertion out, I felt it rip and blood poured out, nasty black thick blood as if it was old and contaminated. I put a new set in and my BGL’s came down over that night back to a respectable 7. On the morning of Friday 11th, I was wandering around in my pj’s and dressing gown with my pump in the pocket of the dressing gown and the infusion line looping out and back to the insertion site. I caught the line on a door handle as I walked into my bedroom and it gave the insertion site a little tug. I didn’t think much of it and got dressed & went about my daily business. During the day my BGL’s started to climb again. By 4 in the evening I was in the city seeing the researcher that I’m undertaking the Optimal Health program with and my BGL’s were up at 18 and wouldn’t come down and I was feeling really sick. I didn’t even think that it could be the insertion cannula again. I went home and gave myself an injection of insulin to top up & went out to a friends place for dinner. My BGL’s came down a little and by the time I’d relaxed and thought things through I decided I’d better change the site again. When I got home and actually looked at the site I found it was / or had been, bleeding. I changed the site and my BGL’s returned to normal. I reasoned that I must have damaged it when I hooked the line on the door that morning. I had 4 days of normal levels and then changed the site again on Tuesday 15th. From then, it went bad again, my levels kept rising, I couldn’t get them down. so on Thursday 17th, I changed it again and this time I found that the insulin had been leaking from the top of the connection and not getting into me. Once again my BGL’s started to come down and were good overnight on Thursday night, I woke with a 7 on Friday morning. On Friday morning I had to go into the city for a job interview. I did my usual routine of breakfast and walking the dog and just before I left to catch the train I did a BGL check. I was 20! I tried to think whether I had missed my breakfast bolus, I could remember dealing it up, perhaps I hadn’t hit the ACT button? So I re-bolussed and headed out. By the time I got to the city my BGL’s were 24. I sat on the station at Southern Cross and injected 6 units. After the interview I was down to 18 and I rode my bike (which I’d taken in with me so that I could get some exercise by riding home), to Newport station and came home. I was down to 9.8. I did another set change. Again it worked fine during the day and throughout the evening, at 8:30 pm I was 6.8. I had a pre-bedtime snack and bloused for it and went to bed. During the night my BGL’S started rising again, I kept getting High alarms and responded with extra boluses. I re-checked levels with finger pricks, the sensor was accurate. I did boluses for non-existent carbohydrate intake, just trying to get the insulin to push through. By 6am the alarms were screaming 14.4. I decided I needed to do ANOTHER set change. Here’s how it looks on a time line.
10th - Set change, ripped vein
11th - Set change, damaged site
15th - Set change, normal
17th - Set change, leaking from connection
18th - Set change, no idea why
19th - Set change - I’m OVER it!

Thursday, September 4, 2014

An Artificial Life

Uncomfortable reality. 

One of the things that really worries me is that I live an artificial life.  I think all of us T1’s think about this from time to time. Scenario: We’re on a ship, the ship sinks, we are; in a lifeboat/on an island/clinging to wreckage…. with very limited supply of insulin. How long until we die?

A Dying Economy 

The issues of Climate Change, of Fuel Descent and a dying economy (as in the paper that I read yesterday,, are becoming my personal reality.  I'm only alive because I have access to insulin and the moment that access stops, my life stops. So the realities of our economic model crashing, the difficulties that might mean for manufacture of medicines and medical aid, the difficulties of transporting things around the world in a fuel descent scenario, the difficulty of getting supply are becoming a critical factor in my thinking. On a deeply personal level, I ask, “Will I survive?”

A Window in Time

Someone said to me the other day, when I commented on what a privileged life we lead in the ‘Western’ world, “It’s just a window of time, in history, it can’t last”. I think about the work of Insulin For Life, IFL is supporting many people who don’t live in this golden window, who face my reality check EVERY day of their lives. Will my life end like theirs? Will I have a few years where I scratch around eking out supplies of insulin, as and where I can get my hands on it, gradually becoming sicker, weaker, until I no longer have the strength to fight to get supplies? What’s happening to T1’s in Syria, Afghanistan, Iraq? Did they get out? Are they scratching around for an ever less stable supply of insulin? Are they all dead?

What do you think?

Are you a T1, reading this? What do you think, does this ugly fear raise itself in your conscious thinking from time to time? How do you rationalise it? Have you thought about Climate Change and the descent of the fossil rule economy as affecting your supply of insulin? I'd love to hear your thoughts.

Friday, August 8, 2014

Challenging the Experts

This weekend, I'm at the inaugural AMSL Diabetes Sports and Exercise Weekend at the Australian Institute of Sports, Canberra.
I'm here because I was offered a sponsored spot, and I'm extremely grateful to Australian Medical and Scientific Ltd., for the opportunity.
As I look around the crowd, I note that the majority of attendees are in their 20's - 30's, but there is a good handful of people in their 50's. I note this, because I have an agenda. I'm not just here to learn more about the physiology of Diabetes and exercise, I'm going to ask some hard questions about ageing and exercise. I'm going to ask where the support for the psychological effort that you need to make as you get older, to keep yourself motivated, is. I'm going to ask, "Who is doing research into Chronic conditions and motivation?" I know there is research into the physiology of exercise and it's effects upon glucose levels, that's part of what we are doing here this weekend. But what happens when you can't workout as hard as you used to, when old injuries, arthritis, hypothyroidism, and general ageing combine to thwart your motivation and reduce your ability? Is anyone researching the effects of ageing with Diabetes?
What's Next?
I've decided I need three things to keep me exercising:
1. Good company, and preferably the company of other T1's who 'understand'.
2. Psychological support. Tools to help motivate me.
2. Better medical support - physio, pain management, energy supplementation. The drugs for the hypothyroidism have helped, but I want more!
I've spent most of the past 27 years, working quite hard at managing my health. Unfortunately it doesn't get easier. Over the past two years I have stepped back from a high stress work life and started to work for myself, so that I would have more time to look after my health, however this has meant heavy financial penalties as I'm single and don't have a supporting partner. I'm trying to balance the physical and mental health demands of T1 with my ability to earn income and maintain a roof over my head. I need better support from our health providers to make the most of what I put in. The efforts that I have put in consistently over the past 27 years have reduced and delayed the likelihood of onset of long-term complications and thus reduce my cost to the public health system. I'd like to continue to maximise my options for long term health as much as possible.

Sunday, August 3, 2014

Ageing Gracefully NOT

I've been meaning to start writing about how it feels to be getting older while living with a chronic illness. How it feels to be finding that I don't bounce quite as well as I used to, that I'm tireder, more stiff, more sore, less able, more unsure than I used to be and that I don't like it.

We've just added yet another of the insidious auto-immune diseases to my collection, this time it is an under-active Thyroid, caused by a disease called 'Hashimoto's Disease', fairly common and more common in women with Type 1.
I like to tell myself that I'm immune to the long term effects of Type 1. That because I didn't 'get it' until I was 25, (oh my goodness, I've had T1 now for longer than I didn't have it!), I thought that the creeping long term effects wouldn't impact on me. No heart disease, no eye problems, no neuropathy, yeah all good... or is it?
A long time ago, soon after I was diagnosed, someone told me, or I read it somewhere, that having T1 means that you will age about 15 years faster.
I went into early menopause at 42. 10 years earlier than my older sisters and my mother. Luckily I had an alert GP at the time and she put me straight onto HRT, carrying me along for another 10 years. Menopause does lots of weird things to your metabolism, all of which have lots of long term effects such as loss of calcium from bones leading to low bone density and increased risk of breaks, loss of concentration, loss of muscle density and elasticity. The HRT helps slow the impact of the hormonal changes. I didn't really notice any changes until a couple of years after coming off the HRT.

Now, as I approach 60, I'm feeling less energetic, less able to cope. Going up ladders on my own is scary, I worry about my capacity to work and keep earning money to pay my mortgage.
I am full of aches and pains, during the night, when I wake to go to the toilet or to check my bgl, my hands hurt so much from the arthritis. When I get up in the morning my hips hurt and I'm stiff all up my thighs and my spine. No real cause, just ageing.

But really, I'm not that bad, just getting slower. I do worry more about what is around the corner, but I know that bad things can happen to anyone as they age, not just T1's. But I worry about what life will be like when I'm 70, 75, 80? Will I be able to manage my own insulin routines? Will it all become confusing? What if the endocrinologist wants me to change insulins to something newer, different?
Will I feel much like I do now? Will I be able to make myself keep going out for walks, keep gardening and bending from the waist down to see if I can still touch my toes? I used to be able to put the palms of my hands flat on the floor, fingers nicely spread and walk them back between my legs. Legs that were straight as a rod, no buckling at the knees, no complaining hips.
Today I am feeling every bone, every tendon, every muscle after two days gardening.
What about my cycling? I love long day rides with stops for coffee and the changes of road and wind. Lately I've been suffering from something no-one talks about. For us post-menopausal women, vaginal dryness can equal discomfort on the bike. When I was in NZ last year, I met some delightful  Septuagenarians, travelling around in motorhomes, with bikes attached to the back of the vans. We talked about trails and 'must do' rides, then out of the blue one of them said to me, "You're a woman, we can ask you this. What do you do about, you know, feeling uncomfortable on the bike seat? Sometimes it feels like there's a dry stick up there!" Indeed I knew exactly what they were talking about, "K-Y gel!" I said brightly and quickly, but you know, that is not the total answer.
Sometimes I think, there must be better solutions to ageing than this.

Does ageing mean spending more time attending to the diet and exercise routine. Stretching feels so good, maybe I need to add a yoga routine to my daily schedule? The day begins to look like this:
7am Rise, Blood test, breakfast, dress
8am Take the dog for a walk
9am Stretches/Yoga Get changed into bike gear, & check tyres etc
10am ride the bike for an hour,
11am home & shower
12 Noon - heck it's lunchtime already.

Hang on a minute, aren't I supposed to be at my desk by 9am?
I am still trying to earn a living after all.

Sunday, July 6, 2014

Closed Loop, The Achilles Heel.

In the wash-up, I need to split my reflections on the trial into two, the first being about the intensity of being a trial participant, the ‘LabRat’ experience, and the second being about the technology itself. I have written quite a lot about my feelings about being a 'LabRat' and I'd like to make some comment about the technology itself.

The technology is extraordinary, the ‘algorithm’ that runs all the calculations, the engineering of the components needed to translate radio signals to bluetooth and back again. But there is an achilles heel that I discovered on that final night. I was shocked on waking to do my calibration check, to find that I HAD dropped to 2.9 and the pump alarm and and smart phone alarms had NOT woken me. The  thing that woke me was the fact that I had set a 3am alarm on my phone to wake and do the calibration test. My night watcher phoned to see if I was OK, as I was busily drinking the orange juice and contemplating whether it would wreck the trial if I stuffed my face with glucose tabs. My night watcher insisted that I should eat and kept talking to me until he was satisfied that I was alert and in control of the situation. He had been watching the downward trend and systems were in place  to call in the troops if my safety was in any way at risk.
Does this mean the technology failed? Or was I so fast asleep that I just didn’t hear the alarms? The algorithm did what it was supposed to do. The screen graph showed that my basal insulin had been shut down for two hours already. I think I had a delayed reaction to insulin overload from the day before, when I had a massive high BGL after eating a Chinese meal at a business lunch (I suspect it was laced with MSG). I’d had to make a number of corrections throughout the afternoon and even at dinner time my levels were still at 15 and I ate a very low carb dinner. The BGL's had flattened out at about 10 by bedtime, but it appears that the insulin load continued acting throughout the night. So - Yes the algorithms worked as they had been set up to do, calculating how to react to the current state from the data history,  but the algorithms can’t know or respond to the fact that you’ve done something radically different the day before, which is having a tailing effect. In retrospect, this is why the trials of systems with a form of glucagon solution as well as the insulin are so important.
Health and Social Equity
I’m massively impressed by the technology, but also realise that this is just in it’s infancy, theres a lot of fine tuning to do, components need to be miniaturised and communication systems between sensors and pumps further improved. There’s also big questions around who is going to have access to this technology. The system will ultimately comprise of a next generation insulin pump combining insulin and some form of glucose, and a very refined sensor. At the moment, in Australia, the Health system sponsors pumps for children under 18, but if you are an adult you must have private medical health insurance to cover a pump. So, Pumps are already off the radar for low income earners. If you’re lucky enough to be able to maintain your Private Health cover, you can access a pump, however the reality is that pumps will need to work in combination with Sensors, and Sensors cost approximately $75.00 each and last for 6 days, and are not covered by PBS or Health insurance. That's an annual cost of approximately $4,500. So if you are already paying about $2000 a year for Health Cover, plus your 1.5% income tax Medicare Levy, plus about $1000 p/a on pump consumables, test strips and insulin, you are now paying around $8000 p/a to stay alive. Oh, you can also add on the fact that the Transmitter units for the sensors only last about 2 years and need to be replaced and are not covered by private or public health care systems. Most T 1’s have a range of health issues including other autoimmune system conditions such as Arthritis and Thyroid problems, so don’t forget to add the medications and treatments on, for them too.
I and thousands of other Type 1 Diabetics, work extremely hard EVERY day to maintain our health and reduce our cost to the public health system. We eat well, exercise all the time, do painful finger prick blood tests, calculate our insulin doses, look after our eye, nerve, kidney, liver and heart health, consult with our medical teams, support each other and welcome and support newly diagnosed T1’s.
I want a Cure!
This coming technology is not what we want. What we want is a total cure, but in the meantime, this next generation technology will give hugely improved health outcomes, reduce the cost of complications from long term T1 treatment in the health system and ensure that over 140,000 Australians can contribute to their communities, and the greater society in full, including paying taxes to contribute to the general social wealth. Personally I work hard contributing to research and fundraising for further research. I appreciate the fact that I am lucky enough to live in Australia, but…  if we as a society, are going to create this great research fund, (through sacrificing other areas and through personal effort to fundraise for specific causes,) then ALL Australians MUST benefit from it. Medical research outcomes that have been funded through the public purse and public fundraising efforts, should not be only for those that can afford them, and must not be used for political leverage, as Mr. Hockey has recently done.