CGM Brain Jumble

On my Facebook, in my messages, on T.V. All day yesterday I watched news cycle around about the CGM-funding announcement that came from Turnbull's office.

The announcement that, if elected, the coalition will invest $54 million in subsidies for as many as 4000 children (up to the age of 21) to receive CGM funding each year. 

I tried to write about my feelings yesterday, and found that I couldn't. I stopped, started, stopped and went for a walk to try to sort through what I wanted to say. Finally, I wrote down all the crazy jumbled feelings in a document so that I could try to sort through them. I don't know if I'd ever felt so confused about a diabetes announcement in my life. I had to reconcile with myself the conflicting feelings of happiness, sadness, anger, hope, and utter deflation. 

It wasn't until I read Bec's blog that I could even start to sort out why I had spent the day feeling so off about it all. 

I was of course, immediately happy about the announcement. CGM is an invaluable tool, and I am so happy that it was finally being recognised and may potentially be offered to kids who could really use it. And I was happy that it meant that Type 1 was being talked about for once - and even all day long! Something was actually spotlighting us. 

I was hopeful that now that the conversation had been started, that it might continue. Hopeful that one day CGM would be more financially accessible, if this much attention was being paid to it. Hopeful that all the hard work of those groups campaigning would pay off, and they would be rewarded for their efforts.

But after that happiness came the disappointed anger, that Type 1 was being shamelessly bandied about as a way to garner votes, with no set-in-stone promise to show for it. After the election there is every possibility that it may not be mentioned again given the lack of timelines and delivery mentioned, so I felt scared about how it was being used as an election tool, aimed directly at those who had made the most noise - the parents of Type 1 kids.

There was guilt. A lot of it. Knowing that I will more than likely be voting against the technology, because I care about the bulk-billing system and other agendas more. I am hoping that the Labor party will announce a similar pledge to ease my troubled mind. But as an adult with Type 1, trying to save for a home loan, I see a bulk-billed GP and rely on my blood tests to be bulk-billed so that I can afford to see my diabetes specialists. I cut money in a medical-sense where I can to ensure that I can pay for the specialist help that I need to adequately control my diabetes. It has been made very clear that the Turnbull government are still going ahead with the cuts to pathology, no matter what the papers are reporting. It would mean more personal cost to me, to vote this policy in. Its a hard thing to ask someone to do, when you give them the choice to either betray their peers or accept a significant personal cost to themselves, with no guarantee that the cost will even end up being justified. 

I feel a loss on behalf of Type 2 patients. The CGM funding, if it progresses past policy stage, will be added to the NDSS. With the recent cuts to the NDSS in regards to the ability of a Type 2 patient to acess subsidised testing strips, it feels a bit like robbing Peter to pay Paul. 

I feel left-out. Again. As an adult with Type 1 Diabetes, there's not much on offer, and we are severely lacking in support. There are programs for schools, youth transition services, camps and pump-funding grants aimed towards children; there are telephone peer support programs and educational programs for Type 2 patients, and programs, a dedicated website and telephone support program for women with GDM. There's nothing listed under support for adults with Type 1. This was just another area in which we are being overlooked and underfunded, despite the fact that we face the exact same consequences from not using CGM as those under the age of 21. (In fact, in the report by Tu et al in The Medical Journal of Australia 2008, the mean age for dead in bed is well into the adult years, at age 30.2). 

I would be glad and happy to see young type 1 children be given the opportunity to grow up with a little less stress so I am in no way begrudging the children who may receive this subsidy. A very long time ago, when I found how hard it was as an adult to even qualify for a pump, I made peace with the fact that people don't really care what happens to you when you outgrow your childhood chubby cheeks. An acknowledgement of my loss of opportunity doesn't hurt though. That's probably one of the biggest reason that I had a small tear-fest yesterday. My loss, our loss, in this celebration wasn't even given the briefest of mentions. By any party involved. Even though we campaigned right along side all the parents.

I guess I'll play it by ear, and whatever happens, happens. Given that I had the audacity to both age past 21, and get diabetes as an adult, I'm not holding my breath that the funding will ever extend to me. It will just be a nice surprise. Either way, I hope Labor comes to the table so that the kids of the future will have the tools they need to help manage their diabetes at their disposal.

Basal Tune Up

One of the (many) reasons I love wearing an insulin pump is because it uses only short-acting insulin. Short acting insulin, because it wears off much faster, allows you to more closely mimic the functions of a type zero pancreas in ways that long-acting background insulin can only dream of.

Throughout the day, my insulin needs can fluctuate by a lot. At my most insulin sensitive, I am using less than half of the insulin that I use when I am least sensitive.

Trying to calculate how much insulin I need, hour by hour, is not easy. What works for me one week, doesn't work the next. I lost my rhythm a year ago, and it has taken me that whole year, and constant CGM use to find a basal pattern that puts my A1c within reach of my target.

My background insulin is another way for me to tell the story of my life, for anyone who knows how to read the numbers.

19.00 to 04.00 - 0.9

The night-time shift. It took me many many months to get this basal pattern right. This basal rate holds me steady during dinner, steady at bedtime when my body is still chasing some straggling carbs floating around, and keeps me level all throughout the night. It is one of my higher basal rates, showing the effects that inactivity while sleeping has on blood sugar levels. It can't account for any spikes I might see from nightmares, or lows caused by any extra activity the day before, but nothing can really, except an actual pancreas.

04.00 to 08.00 - 1.1
It seems a small rise - only .2, and some would wonder wether it is truly needed. At around 4am, my body starts to wake up - releasing a bunch of 'time to get up now' hormones. Hormones and diabetes are not friends. I employ this small amount of extra insulin at wake-up time to help enforce law and order in my blood sugar levels. You don't give diabetes any unsupervised play time at night - the dry-mouthed, over-tired consequences are not worth it.

08.00 to 15.00 - 0.8
 My job is mostly sedentary, accounting for a higher basal rate. When I previously worked at a video store on my feet all day, I had a lower rate. From 8am until 3pm, I am mostly sitting at my desk. . This rate is also slowly dropping, as my work place has recently supplied us with those fan-dangled sit-stand desks, allowing me more activity during the day.

15.00 to 19.00 - 0.4
 I aim to exercise at 4.30pm (when I get home from work) everyday.  I have a delayed blood sugar response to this, and the blood sugar drop that corresponds with the extra movement of my limbs happens from about 3pm the following day (22.5 hours after I do the exercise). From 3pm, my blood sugar levels drop sharply, and I require little (or no) insulin until I sit down for the night. I also do my housework and cook dinner during these hours. Its pretty amazing to see how simple little daily activities can affect blood sugar levels.


People associate the pump with freedom - it is. It also isn't. Every thing that is programmed into my pump assumes that I will follow the same pattern of living day in, day out. Theoretically, the pump allows me to get up at 6am to exercise one day, and 4pm the the next. Yes, I can do this and have no ill consequences whilst I exercise, but I also can't do this because of the patterns that the insulin follows. It creates a logistical nightmare the next day, when all of a sudden my insulin needs drop at 4.30am (when I have the most basal insulin, leaving me prone to an overnight hypo) instead of at 3pm (when I use the least basal insulin). 

Ecologically Diabetic

Diabetes guilt comes in many forms, including the shiny plastic packaging that each and every one of my diabetes supplies comes in.

I really started to notice my diabetes waste in early February when I was trying to cram 30 days of diabetes in the small spaces between my thermal underwear, toothpaste and multitudes of scarves for my Europe Honeymoon.

For every box of test strips, I was filling my recycling bin with a cardboard box, a round tube (as I stuffed all the test strips from one box into one canister) and some folded up paper (presumably instructions) that I have never ever read. For each box of canula sets I folded down way more cardboard than was actually needed. Everything that I needed to stay alive was compacted down into one small black packing cube, and one big pile of environmental guilt.

Fitting all this....

...into this!
 (for reference, this bag is roughly the same size of an A4 piece of paper, and about 5cm deep)

In Italy trash was just part of the scenery on a train trip, forcing my mind to the bags of waste that filled my bin every week back home.

When I got back to Australia, I started researching how to live in ways that were more ecologically sustainable.

There isn't much I can do diabetes wise, but where there are small ways to cut back on what ends up in Landfill, I will. Buying one of those monster kilo chemist bulk bag of jellybeans is better than buying cartons of poppers. Buying test strips that come in boxes of 100 instead of boxes of 50 means I am halving my box-waste, and wearing CGM means using and producing less test strip waste. Fingers can be wiped just as well on the back of a dark pair of pants as a disposable finger wipe (I actually had some DB wipes for a millisecond, but refused to use them on the principal of producing less waste).

I also reuse reservoirs until the markings have completely faded from them, but that was probably more of a wallet-friendly decision as opposed to a green decision. It just sort of serves a dual purpose.

If I was really creative, I could probably go down the route of Ciara Carew and design some fashion from old reservoirs and strips, but I will leave that to the pro.

Diabetes is not the only waste-producing culprit in my household. I was super excited to ditch all those little plastic baggies that you stick meat and veggies in and order some fresh produce bags, a bread bag, and some reusable beeswax cloth wraps to wrap foods in (like my cut cucumber and sandwich, below).

As we use sauce jars, I wash them out and stock them in a newly cleared space in the cupboards, ready to store deli meats and to freeze foods in.

An unexpected gain of my ventures into trying to buy and store foods with less waste, is that buying in this way somewhat forces you to make healthier, fresher food choices. I look for the items that come with little or no man-made wrappings, which is basically the fresh produce sections. I always know what veggies I have, because I marked all the mesh bags - whenever one runs out, I pop it straight into my bag so I can see at a glance which veggies I need - and I know instantly if I can make the recipe that I want at home or if I need to pick something up. When I'm prepared, I eat less take-out. Bread is now straight from the bakery, where I pick up high fiber-low GI, sliced and placed straight into my cute blue bread bag. Meat is bought fresh - I am that crazy lady who shops with her own containers, and asks the deli workers to place it straight into my tared jars. No plastic.

Win for the environment, win for my body, win for a guilt-free mind (and probably, an inadvertent win for my BGLs!)

Where Have All the Test Strips Gone?

Imagine if you were told you were no longer allowed to access the tools that you needed to make proper decisions about your diabetes care. In a disease that requires us to constantly analyse our healthcare decisions, how would you manage your highs and lows if you didn't know they were even happening? How do you know how much that extra mouthful of dinner affect your glucose levels? Does the thought of having no way to tell how your body is being affected by your diabetes scare you? 

Stop imagining. This is now the reality for a lot of Australians living with Type 2 Diabetes.

"From July 1, all people with type 2 diabetes who are not using insulin can purchase an initial six months’ supply of subsidised blood glucose test strips.

After six months, people with type 2 diabetes who are not using insulin can access subsidised test strips if their doctor or an authorised health professional wants them to continue testing. This change follows the independent advice of the Pharmaceutical Benefits Advisory Committee.

Importantly, if a person needs access to subsidised blood glucose test strips for clinical reasons, they will continue to receive access. This may include people with gestational diabetes, on certain medications or people with inter-current illnesses."

Its hard to process exactly how awful these changes really are. I have Type 1 Diabetes, so I will continue to recieve subsidised test strips. However, all types of diabetes can end in the same dire consequences if we are not given the tools we need to adequately control our diabetes. 

The message that is being given to people with Type 2 Diabetes is that their diabetes care, and by extension, total health care, is not important or a priority. That their feet, eyes, kidneys or even lives are easily expendable in order to subsidise the debt and expenditure of Queensland Nickel. 

Many of the messages that people with diabetes see about their disease are the messages of prevention - the message that you should not end up like us, to be healthy, exercise, eat well, take the stairs, quit smoking and never drink alcohol. Yet in this case, that message is quite the opposite. Blood glucose testing is a reliable, in the long-run inexpensive way to prevent complications that are far more costly to the healthcare system than test strips. Furthermore, people with diabetes are encouraged to enjoy a healthy lifestyle to help prevent these complications  - but being healthy is much harder when people with diabetes are being denied access to an integral part of their diabetes care. Oral medications for Type 2 Diabetes can cause hypoglycaemia, which can be very dangerous, and needs to be treated immediately. Exercise may become a thing of the past to those who do not have access to test strips, as it can be very hard to manage safely, which anyone using any form of hypoglycaemic agents will know. 

Without access to blood glucose testing supplies, how do those with Type 2 Diabetes know when its time for them to move on from diet control to medication, and from medication to insulin? Without test strips, a person might remain hyperglycaemia for months on end with no idea, especially if they are not receiving regular HbA1c tests (which, with the changes to medicare subsidies for pathology tests, is more likely. I have even told my doctors that I will be moving from 3 monthly to 6 monthly blood tests in light of the extra costs). In some early-stage Type 2 Diabetics, where they are managed by a GP, they might only have an annual diabetes check-up. You also have to include those patients that are not inclined to seek medical advice often, and may ignore high symptoms if they are not encouraged to test their blood sugar levels.

The fact that there have been no provisions made for a patients right to take control of their own health is appalling. As stated, the ability to procure subsidised test strips will rest entirely with health professionals, and if they want the patient to continue testing. This further alienates the patient from their own healthcare, if they are not given the right to decide how closely they wish to monitor and control their own chronic illness. Access to doctors in some areas can be quite limiting, and this could negatively impact on the ability of a patient to receive that recommendation that they should continue testing. 

Having done my licence renewal recently, I note that this new policy doesn't seem to account for the requirement for anyone on any hypoglycaemic agent, oral or otherwise, to test their blood glucose levels before driving to ensure that they are above 5 and safe to drive. 

The implications of the decision to limit access to blood glucose testing strips to people with Type 2 Diabetes are already there. I hope that they will be realised before irreversible damage is done to any individual with diabetes.

Credit: Insulin Nation

Leaving the House with Diabetes in Tow

I do a lot of cleaning in my life. I like order, neatness and surfaces with nothing on them. My house probably gets 'spring-cleaned' 4 times a year. Once I'm done spring-cleaning my house, I'll move on to my paperwork, my computer & my emails.

I'm up to emails right now, and I'm happy to say I only have 4 emails in my inbox, all with actual useful information in them.

One of them, I can delete once this post is done. My husband sent me the picture below, and I never did anything with it until now. There was no explanation in the body of the email. There was no body of the email at all, just a subject line of "You Perty" (Thanks Hun, you perty too).

There wasn't really an explanation needed. We don't have kids. I do have diabetes though, and that's close enough. 

Some very bad photoshop skills later, and this is what I came up with:

Welcome Back King

At 1.30am on Tuesday morning I should have been sleeping, but I wasn't. Ignoring the fact that Brisbane was still almost too hot to exist at 94% humidity (Seriously Brisbane, we're mid-way through Autumn now), I had another reason to be blearily rubbing my eyes and yawning out any and all curse words I could think of. I was happily tossing and turning, kicking the sheets away and generally taking over as much bed space as possible when my husband shook me awake.

My pump was blaring away about something. I mashed some buttons, assuming it was nothing I needed to know about. It blared again, so I forced myself to crack open an eye and read the screen. Some sort of message about power failure and basal being stopped. I sort of knew it was coming because it had asked for 2 battery changes within 48 hours. I probably should have called the helpline then - but laziness and denial are some of my best friends. If I had called, I would have found out that apparently you can fix that particular power failure problem yourself, and it would have saved a lot of hassle afterwards. But 1.30am. 

I was tired and I just wanted to go back to the land of nod. I decided to set up my back-up pump, took the battery out of the malfunctioning pump, and shoved it deep within my sock drawer while it continued to beep about it's battery being removed. 

I called the helpline the next day, and they talked me through the power failure. Unfortunately, I had already set up my back-up pump with a sensor. I had swapped the transmitter to my old MiniMed transmitter when the pump malfunction happened, not wanting to waste a sensor that I had only put in 3 hours beforehand.

I am pretty impressed with the life of my MiniMed transmitter. I think that transmitter warranty life is about a year, but it has been kicking along for 3 and a half years now, and still holds charge well, whilst somehow seeming to give more accurate readings the older it gets. Though that could just be that I know all the tricks now.

So at least I have my back-up transmitter and pump working, but it's driving me nuts. I'm definitely a spoilt princess of diabetes land, and I'm used to my new technology.

I have to press the esc button to see my sensor readings, rather than having a beautiful, colourful graph and SG displayed on the screen at all times.

The sensor doesn't suspend before low - only on low. I actually have to treat hypos myself. I have a toothache right now because I've been having to have juices, when normally the sensor just catches me and I don't even think about it.

I have to scroll into a menu to set a temp basal. Being my lazy self, it just means that I haven't set a temp basal since swapping onto the old pump. With the 640G, the shortcut to a temp basal is on the screen, and only takes 2 seconds to set-up.

My meter doesn't connect!!! I have to save things manually in capture event. Sadly, my educator will just have to scroll through my meter because I am not bothering to capture that many events. And wearing a dress this week has been hard, not being able to bolus from my meter. Many, many strangers have seen my undies this week.

Don't get me wrong, I still love the old MiniMed, but I am so used to the 640G and its more intuitive programming. I swear, it can tell what I'm thinking and what I need. Its just a lot less thinking and time spent actually using the pump on my part. I kind of just let the 640G do its thing.

Thankfully I am connected back up to the 640G again with a new sensor due to start tomorrow morning. I'm going to treat this as an exercise in the art of appreciation.

NDS-What?

A week ago I received a letter in my mail from the NDSS, informing me that the way I received my pump consumables would change. I vaguely glanced at it, shrugged, and aimed it at the garbage for 2 points. I'd had a stressful week and wasn't in the right frame of mind to really comprehend what that horrible little letter contained, but it was still in the back of my mind.

The contents of the letter were dragged from the depths today when I had an email from my pump company, Medtronic, wanting to warn pump users of the impending consumables apocalypse. 

"Whilst the change-over date has been made clear, the timing and process for the transition is still very unclear...we are unsure of the impact of the transition and how you access your pump supplies during May and June....

To ensure you don’t run out, we urge you to consider stocking up now. This way you will have peace of mind during the next 4 months of supply transition."

This email was in response to the recent announcement:

"The Federal Government has announced that it will implement changes to the National Diabetes Services Scheme (NDSS) from July 1, 2016...diabetes-related products will no longer be distributed through Diabetes Queensland or via other agents of Diabetes Australia interstate.

  

From July 1, subsidised NDSS products, such as needles, syringes, blood glucose test strips, urine test strips and insulin pump consumables will remain available, but through community pharmacies.'

From what I can gather, based on the wording in the article, is that this was a Federal Government decision, and not a good decision. I'm guessing that they think having pharmacy point collection is a good way to cut costs, either through being able to cut funding somehow if DA is no longer needed as an access point, or by cutting postage. Probably a brutal-budget mix of both.

The email from Medtronic today was essentially to say that so far, the federal government hasn't felt the need to clue them in on how this change of access points is going to happen. In an online-group discussion tonight, it was pretty clear that no-one knew how it was going to happen - including those group members who worked in NDSS pharmacies. 

At this point, the alarm bells going off in my brain have moved beyond a constant ringing to full-on emergency bomb-blast sirens screeching.

If the pump companies themselves and the NDSS access point pharmacies don't know what's going on, its probably time to panic, do as they suggest, and start hoarding supplies for the long haul. Winter is coming. I'm not trying to be a dramatist or anything, but I did just max out my bank card bulk-buying enough supplies to last a good 6 months.

I can only imagine that this warning telling everyone to start stocking up is going to impact on pump consumable stocks. Black-markets for hard-to-find pump supplies will start popping up soon. I better work on my haggling skills, and be ready to trade my first-born.

What's not also clear is:

1. - What the deal is for those who live rurally? They are likely to be impacted quite a lot by this move. Rural pharmacies may also be less likely to stock items if they only have 1 customer buying the product.

2. - How pharmacies will handle this in terms of stock levels? One of the reasons I like ordering online so much is because I can bulk order - and I always have, I usually order 4 months worth of supplies at once. Bulk ordering comes in handy not only for lazy people like myself, but those who are wanting to travel (I ordered so many supplies before I went overseas!), and again, those who live rurally and remotely. Pharmacies often place irritating self-imposed limits on how many of one item you can buy - for example they may allow you to only buy 1 or 2 boxes of test strips at a time. This will limit the ability to bulk order

3. - How are pharmacies expected to stock the necessary consumables? The test strips that I use are not stocked in store - presumably because pharmacies tend to only stock a few different types of test strips due to space restrictions. Same goes for pump consumables. Where are they finding the room to keep all the many, many different types of strips, reservoirs and canulas? Will they just have a wall devoted to diabetes care? With the amount of pump users in Australia, its not likely.

4. - If they're not stocking the consumables in store, are they ordering them on an 'in-demand' or 'special-order' basis? If so, how is this any different at all to letting us just order through DA? Same amount of postage because they'd just be getting small shipments in for each customer all the time. They wouldn't be able to wait until a certain amount of orders were reached - because again, there's not many Type 1's to begin with, let alone the much smaller number on pumps.

Another factor to consider, that I highly doubt the federal Government has even thought about it, is that this may directly impact on donations made to DA. Thus cutting support even further. I always include a donation every time I order - I factor it as 'postage costs' (seeing as we don't pay postage) and just hand it over as a donation instead. I don't miss the donations that I make, because they're small enough not to impact, but they can tot up to a fair bit over the year. I will of course still donate, but I run the risk of not remembering unless reminded. 

 I'm going to need to see a proper plan before I'll start to believe that this was ever a good idea on the federal government's behalf. Until then I'll be making sure I keep my hoard of supplies well stocked.

Cured: simple as that

I always start my weekends off with a good hourly dose of the newest Greys Anatomy. Because its Friday. And Friday night is the night I usually watch Greys Anatomy. Monday night is my night to cook. Tuesday night I don't go and visit my mother. You get the Flight of the Concords gist of things...Friday night is Grey's night, because that's the night the newest episode gets released.

Greys Anatomy is obviously taken with a very large grain of salt when you look at it from a medical viewpoint. I don't watch it for the medicine. I watch it for the Grey  & Mcdreamy get together-break up when Mrs. Mcdreamy arrives-get back together when Mrs. McDreamy leaves to start Private Practice-break up again-Grey sort of dies-Grey lives-Grey & McDreamy get back together-Grey and McDreamy adopt random African baby-Grey and McDreamy have own child-McDreamy works away from home-McDreamy dies-Grey has dead McDreamy's baby-drama. (Times this drama by every character ever. It's exhausting, but worth it for the mental workout you get trying to keep up with it all.)

On Friday's episode, the doctors at Grey Sloane Memorial Hospital (formerly known as Seattle Grace Hospital) did what they do best - performed a complex and probably improbable procedure to 'cure' a patient of his multiple sclerosis. If I ever develop any sort of super weird-hard to cure medical condition, Seattle Grace will be my go to hospital. Those doctors can solve all the crazy rare disorders.

Which is a problem, from an awareness point of view. It means the audience isn't ever set up to learn more about the medicine. What do I know about MS from watching that episode? I saw his hand shake a little, occasionally. That's it. I didn't expect to see all the complexities of living with a disease like MS, but I would have liked to have seen some. Disease can be quite character building, but instead I was distanced from the disease. Made to feel like it was unimportant, and the realities of his every day life were belittled. Focus was shifted entirely from the characters' MS (the entire reason he was even in the episode) and instead honed in on his suave pick-up lines, with the disease relegated as an itsy bitsy sub-plot built in to simply further a bit of fluff romance.

If the print and screen world is constantly curing everything, there's no chance to show what the condition is like in real life. It's lazy, and it says to the audience that those of us living with medical conditions aren't worth taking the time to learn about, or accurately portray.

When dealing with medical conditions in T.V. shows, writing, or any other media, there is a tendency to create the cure, rather than deal with the condition in a practical and realistic way. Maybe because it makes the plot too complex, or because writers and creators think it will be too hard to constantly factor that condition in. Maybe they worry they will lose audiences if they haven't learnt to sift out the mundane details of living with a disease, illness or disability from the really cool stories we pick up along the way.

Whatever the reason, there's a solution: Go and talk to a living gold mine; someone with the disease themselves. Get the basics, tell the basics. Get the humour, the happiness, the sadness, the fear, the anger, the community and tell that side of the story. You don't need to focus everything on the disease, but don't include a disability or otherwise to simply cure it 5 minutes later. Such lazy writing serves no purpose other than to illustrate a lack of compassion and understanding on your part, and to tell audiences that you are not creative enough to get to a particular plot point without disrespecting the experiences of your own characters. (And by extension, the real-life versions that you have based them off).

Access All Channels

What do you get if you place Jill Pantozzi, Michelle Goldsmith and Robert Hoge - 3 writers who are also prominent chronic illness and disability activists - in a room  with a few microphones? A superbly insightful panel on the use of disability and illness in journalism and story telling.

On Easter Sunday morning, when I should have been at home figuring out how much chocolate I could fit in my mouth for breakfast, I was instead hanging out at Contact, a speculative Fiction convention.

The 'Access All Channels' topic was more of a conversation between the audience and panelists, which was great. I felt like they really wanted to get writers involved in how they treat, write, and talk about illness and disability. Some really valid points were brought up, that made me think about the way that I write, and how I react to things that are written about diabetes.

One of the classic things written by diabetics that I see is the '10 things not to say to a diabetic' list. They always put a bit of a wry smile on my face as I play bingo with the things people have said to me. The list is meant to entertain within the circle of those who have the particular illness, disease or disability that it talks about. But what does that list mean to people who don't have the condition? What if that list is the first thing they ever read about what it's like to live with that particular ailment? It says to the reader "Don't say anything to me". It makes them afraid to say the wrong thing, and so they don't talk to us. Which limits their sources when they do genuinely want to read or learn about the disease. If they're reading that list in the first instance, then obviously they are curious; and straight away we are stifling their curiosity and heading them towards a path of ignorance.

What we want is actually the opposite. We want people to write through their ignorance. You can't know every in and out of a disease if you don't have it, and you can't hope to gain any knowledge without being given the chance to acquire it. That's a problem on our behalf, and its something that we should be more tolerant of. We should be encouraging people not to be shy about getting things wrong, because then we have the opportunity to educate about what is right if the person really does want to learn and therefore help us to educate even more people. We need to chill out, and see that if it really is a mistake made because the writer doesn't have that real world experience, that we should be happy to send some friendly facts. If one person has pointed it out, then we don't all need to point it out. I am guilty of this, I know I am. I hope that I can keep a more open mind to diabetes in media and writing.

That's not to say that every case can be treated in this way. Sometimes things are written that are genuinely and truly offensive. Jamie Oliver is a pretty prime example of being given multiple opportunities to recognise the ignorance and mistruths that he spreads, but he continues to do so, so as far as I am concerned he is fair game. You also have people like Cross fit's Greg Glassman, who when confronted with disappointment at his comments about diabetes, decided to step up the offense to a whole new level of 'Wow, you half-wit'.

Experiences can also vary from person to person with the same condition. There are things said about diabetes and surrounding policies, technologies, treatments or day-to-day life that I don't always agree with, and I have had to learn to distance myself from the views and opinions that I don't like - and I know that people will sometimes disagree with my opinions too. I recognise that everyone considers their own opinions valid, and that the more we allow talk about diabetes, the better it is for us (again, there will always be exceptions).

Understand where your knowledge base comes from, and that if you have the condition being talked about, that your knowledge base is alot more personal than that of someone who doesn't have the condition.

The point I guess, is understanding that the more writing is done about illness or disability, the more normalised it will become in society. Even if we consider the writing to be bad, we don't need to jump all over it and discourage the writer or publication from ever trying to share our experiences again. It can be hard work advocating for an illness, and we need them to want to be on our side and want to understand. A simple message about what you thought was wrong, unsafe or offensive might be all it takes for an issue to be resolved, and for the writer to think of their mistake as a positive learning experience, rather than a deterrent. It also shows them that we can be approached before publication to fact check if we act like a friendly bunch of people.

I'm not saying I'm going to be perfect at tolerance. I will have my exceptions - media releases on the blueberry tea cure are one, and if I think something could be dangerous for the illness it is speaking about, or it is apparent that there was an ability to fact check but the author was too lazy (Hansel and Gretel) then I'm likely to arc up. But I will stop and think if what I say about a piece of writing is really helping, or if its just being picky.

Happy Birthday, Sweet Morty

Happy chocolate sales day! I hope everyone managed to get some cheap chocolate bargains to keep aside for hypos.

As of yesterday, Morty (my diabetes) officially turned 4 years old. An Easter diaversary. Morty is nearly school-aged. I dread the day when Morty learns to count and realises that throughout the year I have only bought it 36 presents, throws a Dudley and starts screaming at me "36! But last year, last year I had 37!". I suppose I will have to do a quick Petunia on the situation and promise to buy it another 2 new CGM sensors to stop a full-blown blood sugar control meltdown from happening.

I suppose I might buy Morty a card. But what do you say to diabetes?

If I loved my diabetes more, I might talk about the day I bought it home from the hospital with me. And how bloody confused I was leaving after an overnight stay with a permanent part of my life that I didn't know how to care for. Would I tell Morty that I never wanted to bring him home with me, and wished I could leave him sitting in a bed of his own at the hospital forever? I probably wouldn't want to tell him he was unplanned.

I won't go off on that tangent though, because I don't love my diabetes enough to reminisce fondly about the first time I held a needle to my stomach.

I could talk about how it Morty has grown as a disease. The progressions I saw after getting past that initial 3 month period when my world became a complete blur of eating, injections, sleeping and crying everywhere.

How I saw changes as Morty grew from that volatile infant state to toddler stage. I sort of knew what I was doing and was managing to look like I had my shit together. I could leave my house with my hair and make-up done; looking composed and not at all like I had just dealt with a tantrum of epic proportions.

Maybe then I will talk about my dreams and hopes for Morty's future. How much I'm hanging out for him to grow up, because I'm not as fond of his childlike behaviour as he thinks I am. I have been told, however, that an unfortunate aspect of raising a condition like Morty, is that they don't grow up. The most I can hope for is that with lots of therapy (and money) his tantrums may become a little easier to control. That as he grows, I will get to know the early warning signs of a melt-down and soothe him before I'm left with a screaming toddler disease in aisle 3 of the supermarket, because he wants lollies NOW.

The sign off would probably read: 'Happy Birthday, sweet Morty.'