Sunday, 12 February 2017

"I can't"

It was only by doing something out of my comfort zone that I realised how often I say "I can't".

Getting up and walking to a sunrise before eating? 
I can't, I'll go low.

Walking to see the sunset just after eating? 
I can't, I'll go low.

Doing a challenging day hike on an island without reception let alone a hospital? 
You've got to be kidding me. 

Turns out, I can.

Having a chronic illness naturally adds a layer of caution to your decisions. After all, there's more to think about. But I think I crossed the line when I started thinking I couldn't do things because of my diabetes. I gave up scouts when I was diagnosed, so I hadn't camped or hiked in years. Active things became frightening things. 

Low blood sugars are scary. They're uncomfortable, they're draining and they do have the capacity to kill you. I found that exercise sets them off more than anything else, so I made the decision to avoid exercise that lasted more than an hour or so. I'd carefully time it, and set temporary basal rates so I'd have less insulin. I'd carb load before leaving and I'd make sure someone knew where I was going. I wrote myself off as too unfit or fragile to do bush walks, or any walk that wasn't on flat road. I wouldn't do any unexpected activity especially around meal times because that would inevitably lead to a low sugar as I hadn't prepared.

Well, I suppose you can't prepare for everything, and in trying to do that I was missing out on a lot. Sure, things went wrong. I had multiple hypos on the day hike. I'm not certain I would have attempted that hike without the CGM. It took a really long time, lots of juice, pump alarms, very supportive friends and a few tears (I'm not very fond of climbing up and down unstable rocks in high places). But I did it.

Climb a mountain? I most certainly can.

Wednesday, 25 January 2017

Entering the world of continuous glucose monitoring

I never thought I'd be able to use a continuous glucose monitor (CGM). Never. In Australia, CGMs are not yet subsidised by the government or covered on Private Health Insurance. This kept vital technology out of my reach because frankly, I had no chance in hell of affording it.

That changed when my 21st and Christmas rolled around and I asked for CGM funding from my family as a gift. I was tired of spending every waking moment stressing more and more about what my sugars were doing. I ran through test strips like water on some days. When I was given the opportunity for a trial I went for it and despite problems with the device, when it worked I experienced this incredible peace. My brain just shut the hell up. 6 years of constant thinking and analysing and worrying just stopped because I had a device that would alarm at me if I was at risk of going low. It can alarm on highs too but I'm not as fussed on that. Lows have always been my fear.

Thanks to my family funding half of it I decided to sign up for a 12 month subscription. I was excited, but also a little conflicted about it. I worried whether it would work well, the trials had issues after all. I worried about having something else on my body as well as the pump. How would I sleep comfortably? Would it hurt to inject? Would it make my diabetes more visible? Did I feel okay about that?

Plus I felt a little bit of guilt. Silly, maybe. But I have been, and still am, so passionate about equal access to healthcare and health related technology. I felt like a sell out in a way, because I was now accessing the best of the best when it's just not an option for a lot of people. For me the solution is to remain actively involved in raising awareness of the benefits of CGM and lobbying for equal access.

On to the device itself!
I hated the thing on the first 2 days I had it. I wanted to throw it off a very high cliff. That did not help the guilt complex which expanded to "oh my god what a waste of SO much money". It read dead wrong, bled, and died on day 1. I was horrified. Another sensor kept reading as "below 2.2" when my sugar was 10. Turned out that one had retracted or not been built with the actual sensor bit that sits under the skin. So it was measuring nothing and had to be removed.

But things turned around.

One amazing thing about Medtronic is their customer service. Any issues and they replace it. No fee for the phone call, no fee for the item, no fee for the delivery. If their product is faulty they will replace it. I've had 2 sensors fail out of 5 and they have replaced both (which have worked). For me it was a placement issue. For some reason my stomach just will not cooperate with the sensors. It bleeds instead of sitting in the interstitial fluid. Now I know that I have to place it on my hip and lower back for it to work and voila- magic.

This CGM has stopped MANY overnight lows. Overnight lows I wasn't going to wake up to. My liver normally dealt with them in the past by giving out glucose, but you just can't rely on that. Now I've been able to change my insulin rates to avoid that. I've been able to go on holidays where I do long walks. It's even made my eating easier. I don't have the greatest relationship with food and forget to eat a lot. I consider it fuel, and would eat to avoid hypos. I'd use insulin stacking (taking insulin within 2 hrs of your last bolus) and high sugars as excuses not to eat.

Now? The CGM shows me where my sugar is trending, and I eat anyway. In the future I'll start again with tighter sugar control, but right now the focus is on increasing my intake and if the CGM lets me do that, then that's awesome.

I can sleep, I can eat and I can actually enjoy exercise instead of waiting for the bad hypo to follow. Yes, it's not perfect. But it's relatively painless, doesn't get in my way and has improved my quality of life so much. Which if anything, makes me want to fight even harder for equal access.

Wednesday, 11 January 2017

6 years on the pump

Today marks day 2193 on the pump. Pretty fitting considering I'm starting a CGM full time tomorrow.

My change to the pump happened when I was 15. I'd not yet had T1 for a full year but I'd decided that injecting in public was just too embarrassing for a teenager. I named my first blue Medtronic Paradigm pump Dobby. Unfortunately he's not pictured below as I had to swap him for Severus after I put him through an x-ray in 2014. Now for the past 2 years I've been using Tonks, the Medtronic 640G which is so much better than the Paradigm. 




Truth be told, I hated that pump for the first few weeks. It was awful. I couldn't take in all the information and I kept getting things wrong. It felt weird to have something attached to me all the time. My carb counting had to change. The set changes hurt.

It sucked.

But then it was suddenly amazing. I finally got the hang of it and had all this newfound freedom. I could wake up whenever I wanted (I was a teenager, I liked to hibernate). I could eat whenever I wanted without having to think about injections. I could bring down high sugars with a correction, which you can do with injections but I was still quite new at it. The best part? I didn't have to inject in front of people any more. My fragile teenage dignity was preserved.

I love being on the pump and for me it's the best way to manage my diabetes. That's a comforting thought considering it started tough and I was incredibly nervous about it. I feel the same way about the CGM. It's new, bulky, fiddly, and expensive. I'm worried I'll hate it despite all the amazing things it can do.

But tomorrow is just day 1. Who knows, one day I might find myself at day 2193 on the CGM wondering what on earth I was worrying about. 


Monday, 9 January 2017

2017

Happy New Year!

I've decided that 2017 is going to be an exciting year.
Don't question my control over that outcome, just embrace my positivity.

Why you ask? Well:

  • I'm starting a CGM (sensor that checks your blood sugar 24/7 and alarms when you're going low) full time this week
  • I'm travelling in short bursts while I finally get a holiday from uni and placement
  • I'm reteaching myself French
  • I'm actually reading for fun for the first time in over a year
  • I'm finishing my degree this year
I'm excited. Also terrified. But there is some actual excitement in there.
I've already made some amazing gains this year and I'm only 9 days in!

Recently I went on a camping trip to Forster with a friend. It was incredible, and I finally got back into photography which is something I've been putting off for a long time. 


Going on this trip was a huge deal for me because I haven't been camping since I was 14, a few months pre-diagnosis. Camping is hard because there's no power (except in communal areas), increased incidental activity giving more opportunity for low sugars and it's just a huge change in routine. 
I'm not awfully fond of changes in routine.
Until now! I did so many things on that trip that I never thought I could do with t1.
Little disclaimer: Other people with T1 can do these things, it's just that I was always too scared of them.

I went on a long walk for hours in dreadful weather. Considering I go low just from going to the shops, this was an enormous deal for me. But I did it. I did multiple walks and only went low once.
Yes it was a nasty low and resulted in some pretty wicked sunburn because I had to sit on a beach in direct sunlight for ages to treat it. But it was okay. I was okay. 

I had a carb-tastic breakfast of pancakes mixed with chocolate chips that I had NO idea how to bolus for. Then I went on a long walk. One hypo? I came off easy.

I had a drink and then went on a long walk at night. I NEVER do that because alcohol lowers my sugar quite a bit, as does walking. But off I went doing both at the same time and I was fine. 

I recognise that for many people this might sound like a list of very easy things. For me though, they were enormous challenges that I've avoided for what's soon to be 7 years.

A close friend of mine likes to remind me that being brave isn't the absence of fear. It's doing something despite that fear. She'll get a kick out of me finally breaking on this topic- I felt pretty darn brave doing that stuff.

I think a lot of the time I let my fears of hypos and imperfection stop me from living. 
Not any more.
I've got two more trips planned for the coming weeks and I figure if I can do this without a CGM, imagine what I can do with one.

Happy New Year indeed

Wednesday, 28 December 2016

Starting the conversation

Writing this post is tricky, but I think it's important. I hope that reading it helps someone else feel a little less alone. It's still not perfect and I'll probably try to write about this again. But for now, it's a start. 

Mental health is a touchy subject. Despite increased awareness we still whisper about it. We still pretend it doesn't exist. We hide it, and treat it like it's something wrong to discuss. Fact is, you or someone you love have likely experienced some form of mental illness/disorder. The word sounds scary doesn't it? Like it means you're crazy, or unstable in some way. Interesting when you consider that earlier fact. If everyone has been touched by mental illness, why are we so touchy about it?

I feel far more comfortable writing about my diabetes, a more physical/medical condition, than I do about my mental health. Broken beta cells are okay to talk about but chemical imbalances? Oh no. Certainly not polite dinner conversation.

Well, I've never been one for sticking to polite dinner conversation. My mental health, like many others, is not perfect. I've always been an anxious kid, and as I got older the nerves and worry grew with me into Generalised Anxiety Disorder. Pretty generic name, think it'd be something cooler sounding, but no. GAD it is. It's a pretty big part of me. In a brief surface summary, I spend a lot of time over thinking things, and trying to make things perfect and well controlled. I tend to be very harsh on myself. These are things we all do from time to time, but when they start taking over your life it's time to ask for help.

Which I eventually did in high school when I started having panic attacks on public transport. I was 16 and couldn't go much further than the neighbouring suburb without feeling like I was going to throw up and pass out at the same time. I would panic before every single school exam. I would get myself completely overwhelmed by thinking back on things I had said and done during the day and what I could have done differently. I would catastrophise everything, where every little mistake was a huge failure to me. I was unbelievably self critical and would blame myself for how other people felt.

But I was fine. Totally fine. I had a sick grandmother and a diabetes diagnosis, and here I was trying to get perfect marks and support everyone around me.
But I was fine. I could handle the thoughts, the fatigue, the poor sleep quality.
Until I got the dizzy spells and vomiting. That was less fine.
I didn't understand what anxiety was until I saw a psychologist. I thought everyone over-thought every single move they make. I thought everyone had intense worries and catastrophic thoughts that loomed over them. I thought everyone got so stressed before exams they would throw up or start hyperventilating.

Apparently not.

The critical attitude toward myself worsened over time and when my grandmother died I fell into a depression. My previous anxiety toned down a little. I was less frantically checking my blood sugar, less bothered to give 110%. My mind was still running at 100 miles an hour, but I just wasn't bothered to do anything about it. Funny combination, anxiety and depression. All the stress of the anxiety with no drive to help yourself. Everything was hard. Going to lectures was hard. Getting up was hard. I did it anyway, and to most I likely seemed fine. I suppose it's a bit of a high functioning depression. Less visible, still there. But I certainly wasn't fine. My diabetes management was slipping, I was always tired, and I was often very down. I quietened in conversations and let my diabetes cruise along. I let my eating cruise along (i.e. drop off). I just didn't care as much.

But the nastiest part of it was the sense that I was a downer, a burden to the people I love. It comes out in self-deprecating humour, but there's nothing funny about that feeling.

I've been getting help with these things for a few years now. It does sound awfully cliché, but it does get better. I don't get dizzy and nauseous on public transport any more. I don't get so worked up before exams. I'm just starting to take up some old hobbies, like learning French and photography. Things are improving!

But the fact is I still have anxiety and depression. I still have panic attacks, but I'm better at dealing with them before they're enormous. I still have ongoing worries that at times can be hard to deal with. I still feel crappy sometimes. I definitely still try to be perfect and control everything- which anyone with T1 knows is completely impossible when it comes to blood sugar. But now I'm better at dealing with it.

It's not all bad. I've gained a lot:
- I'm able to support friends who experience similar things. If anything good can come of this it's that I can make other people feel less alone. I've experienced a lot, and that helps me understand a variety of situations. Interestingly, people I know with mental illness tend to be quite empathetic people.
- I'm a very driven person and I work hard. Part of that is down to my anxiety I'm sure.
- I'm a good planner. Want to go on a holiday? I've planned for every possible disaster and have back-up options. Oh, and I know exactly where we need to be at what time. I'm a walking itinerary. You're welcome.
- I'm so on top of my diabetes because of it. In a way, my anxiety has been good for my health... perhaps not the healthiest motivator though.


I still don't find I'm expressing myself properly, but this is a decent starting point. Despite these conditions I'm doing well at uni, I have wonderful friendships and I have multiple jobs. My experiences have allowed me to be selected for consumer advocate roles.

My point is this: mental illness doesn't make you crazy. It doesn't mean you are less than or can't do anything with your life. On the contrary, your experiences add to who you are as a person. It's time for us to have a more open dialogue and amplify those whispers.

If you or someone you know is having a hard time, these websites might be helpful.

https://www.beyondblue.org.au (anxiety and depression resources, as well as anonymous forums)
http://www.blackdoginstitute.org.au (depression)
https://www.sane.org
https://www.lifeline.org.au (who have a phone number for crisis situations)

Thursday, 8 December 2016

A Pause

I love the diabetes online community, I really do. I love blogging.  I’ve had a huge number of experiences lately, CGM, conferences, committees, concerts, and almost finishing my current placement. But try as I might I haven’t been able to talk or blog about them. Doing this is something I enjoy, but lately I just haven’t felt like it. I feel a little detached from the DOC lately, entirely by my own doing.

For the last six months or so I’ve been tired. A generalised burnout of everything. My year at uni has been jam packed with no full holidays this year. My diabetes and general health has been all over the shop. So my hobbies get lost a little, and blogging is one of them. I’ve always made sure to keep this blog as a hobby and not as my job for this very reason. But even so, it’s been left aside too.

Sometimes I think you can take on a bit too much. There’s taking opportunities and then spreading yourself too thin. So for now, blogging is taking a backburner and I think that’s ok. I’m in no way stopping, but I think I need to work on things before writing about them. I have a lot of thoughts on the healthcare system, the education system, and mental health. I have a lot of thoughts on my own diabetes and general health management. But now is not the time to start looking into those.

I’m hoping to get back to the OzDOC twitter chat on Tuesday nights though once my placement is over.


To the other bloggers, I read your work and I hope to engage with it again soon. I'm just on pause for the moment.

Friday, 4 November 2016

This is what diabetes looks like

Long time no blog! Happy Diabetes Awareness Month, I hope you're wearing plenty of blue.

I have a bit of a habit of checking out when the going gets tough with my diabetes. I usually want to write but it's all a bit too hard. This leaves my blog looking pretty squeaky clean and like I've always got everything under control. Well I haven't but I'm trying again.

Let me show you what diabetes looks like.

First it does this
Change your pump settings after months of laziness and then it does this
And these are everywhere because your sugar meter case broke

The green target zone was becoming uncharted land

Uninterrupted sleep is overrated 

My current set is taped down using a bandaid because it lost stickiness the day after I inserted it.
There's chocolate wrappers and juiceboxes on my bed from the hypos of finally adjusted basal rates (I'm getting more insulin because my sugars are high).
My meter case doesn't have an inner compartment that zips up so my test strips go everywhere.
There's uni exams, and committees, conferences, events, work, other health management and sugar levels to be fixing.

But in good news I get a CGM trial for a week because despite my ridiculous blood sugar my a1c (3 month average) is 6.7%.Which is fantastic, but makes no sense when my average sugar level has been around 9 or 10. The current theory is I might be having overnight hypos.

CGMs monitor your sugar 24/7 so that should solve the mystery of the weirdly good a1c.

So I'm pretty tried and over it, and a bit like Catherine Tate as Lauren:

But things are improving slowly but surely :)

Tuesday, 4 October 2016

The Cure- Part 2

A while back I wrote about my thoughts on a cure.
Tonight's ozdoc chat on twitter  focused on our thoughts on a cure, and what it would mean.

Some really big issues came up, and one really stood out for me. If we did have a cure, who gets priority?

It looks deceptively simple. I know my first thought was children. Babies who can't tell when they're running high or low. Little kids who are terrified of needles. Parents who never sleep the night through.

But then that got me thinking, how can I compare individual's experiences of living with this? What makes the 4 year old with t1 more deserving of a cure than the hypo unaware 25 year old living alone, not leaving their house because they're afraid of going low? What about the pregnant woman who has to keep her levels stable for the sake of her child? What about the teenager who is isolating themselves because they're ashamed of their condition and just want it to go away?

What about me, a 20 year old uni student who can't turn off her diabetes brain?

How can we make that kind of decision? How can we put one life above another, when we're all in this diabetes boat together?

Don't get me wrong, instinctively I absolutely think kids, pregnant women and the hypo unaware should go first. I have a better shot at lasting through it than they do.

But should a cure become a reality, who exactly makes that call?
Is it a politician catering to the majority of their potential voters for the next election?
Is it an insulin company looking for the quickest sale?

Then you come to the dilemma of price. Will t1 become a poor man's disease? If a cure is available that's fantastic, but there's only so much you can sell for it. So do we give it to lower socioeconomic families first?

I don't know. I don't know how anyone can make that call. Everyone within the online community works hard for advocacy, improved technology and maybe even a cure. But what happens when it's available? Do we still retain that solidarity, or does our hatred of the illness mean we all want first dibs?

I have no answers, just lots of questions.

Wednesday, 21 September 2016

World Alzheimer's Day

The 21st of September marks World Alzheimer's Day, a part of World Alzheimer's Month. My grandmother had dementia (likely of the Alzheimer's-type) for many years and passed away in 2014. We're encouraged to use this month to focus on the prompt "Remember Me", where you reflect on your favourite memories, or those of a loved one. These aren't my favourite memories, but they're important ones. I wrote about some of the good memories here

I have never hidden my diabetes from anyone except my grandmother, and it was quite the effort. For four years I didn't test my sugar in front of her, didn't touch my pump, and didn't say a word about my now broken pancreas. She never knew about this really big part of my life, and that makes me incredibly happy in some ways, and sad in others. Not knowing about it meant that I couldn't share some of my achievements with her, like starting work with Trapeze, or doing my major work in high school. But for her sake, I'm happy she didn't know. She had dementia, and at that point it was so far advanced that she may not have understood what was going on. Even if she did, it wasn't worthwhile upsetting her because you'd have to keep breaking the news again and again. Which makes me wonder, why are you telling them at all?

So instead of inflicting that on her, I decided not to tell her. We visited her regularly, and she forgot my name. She would ask at first, but then after a while she forgot my relationship to her. This was probably one of the most difficult things about dementia. I was very close to her as a small child, and she almost felt like a third parent because I saw her so often. But she forgot, and my role changed to seeing her not for my own benefit, but for hers. I'm not sure what it was, but despite not knowing who I was or how she knew me, she was almost always very pleased to see me. Maybe it was because I was young. A lot of the nursing home residents and staff liked to talk to me because they had seen me grow up over the years of coming in.

Whenever we came to visit, she would insist that I come and stand close to her, and sometimes hold her hand. This suited me fine because I had a lot of trouble talking to her. I never knew what to say, or how to say it. Now having studied speech pathology, I know how to communicate with people who have dementia and aphasia. But at the time I didn't, so I would just stand nearby and smile at her a lot. Sometimes I'd bring in videos of myself playing the piano because she really liked the music. I don't think she minded this arrangement.

She would have a pretty typical routine every time we visited. She'd look at each person and comment on what beautiful eyes, noses and mouths we all had, and ask the others to agree with her. She'd repeat this a few times over, sometimes ask why we were there, and where we were going.

Sometimes it wasn't so nice and she would be a little upset or angry because she was disoriented. Sometimes she asked when she was going home, even though she hadn't been home in years. Once she thought I was my mother, which was tricky to navigate. I'm certain there were more occasions where things didn't go very well because I remember leaving the nursing home upset pretty often. But not remembering them is probably for the best. 

Most of my memories of her are in hospitals or the nursing home. I was under 10 before it accelerated due to a stroke, so I can't remember many things. I can't quite remember her voice. I can't quite remember her perfume. But I do remember how much I loved her, and I'm pretty sure that was mutual.

Thursday, 15 September 2016

When patient advocacy and speech pathology collide

I've been working as a youth representative for Trapeze for a few years now, and have found that patient advocacy has become a huge part of my life.
As a part of this role I recently made this short spiel on the importance of providing care that is age and stage appropriate. Huge steps are being taken toward making youth friendly services for young people with chronic illness, which is very exciting!

video
(Apologies for the loud clang at the beginning. I'm uncoordinated even when sitting down)

I've spent quite a lot of time lately wondering how I can make my interests work together. Speech pathology and patient advocacy for young people with chronic illness. They just didn't seem to gel together the way I'd like.

Now that I don't have placement on I've found myself with time. Instead of using this like a normal person would (by relaxing), I chose to apply for a scholarship and write a voluntary essay this past week.

Sounds insane. It probably is. But from doing all of this writing I think I've worked out the link between my interests. Holistic client care. The reason I'm so vocal about patient welfare is because often people are grouped by their condition. Age is one factor that makes us different, but there are many others. Things like our personality types, goals, jobs, self-demands, and lifestyles are huge, and they're often missed. To me, a good health professional is one who takes the whole person approach, and I'd like to apply that to my practice as an allied health professional as well.

I'm interested in hearing your views- have you ever encountered the experience I described? What is the making of a good health professional for you?
Maybe one day there could be an industry standard, where we can make a comprehensive rundown of the person we're treating rather than the condition. File summaries exist but there must be another way to truly represent the person being treated. Maybe it will be the e-health record, who knows.

What could work for you?