#T1D4MEIS

World Diabetes Day is nearly upon us. This year, DQ (Diabetes QLD) are running the #T1D4MEIS campaign, asking people with T1D to take selfies with what T1D is for them.

What is T1D for me? It's a whole bunch of things.

Its a community. 10 finger pricks a day. Being challenged. Pushing myself harder. Dreading set change day. Getting to set change day and just refilling my reservoir instead. Being motivated. Having a better perspective on the value of good health. Blood. Pain. Tears. Sleepless nights. Lows & Highs. Doing things despite diabetes. Eating KitKats. My insulin pump. The smell of insulin in the morning. Determination. Being proud. The 5.5 dance. 2.8's. 25.7's. A big big handbag. Happiness. Sadness. "What did I do wrong?" "How the hell did I get that right?". Hope. Juice. Needles. Life.

A part of me. 

The problem with cocktails

When I was younger, I never really got into the party & drinking scene. Probably because I'm just about to marry my high school sweetheart, & so when we all turned 18 (who am I kidding? I went to school in Vincentia - when we all turned 12) and everyone got right into drinking I never did. Most people get drunk so they feel confident enough to try contorting their bodies into weird shapes to the beat of music in attempts to 'hook-up' with someone else. I had my lovely, steady boyfriend so I didn't need to do this. Holding peoples bags while they mash their faces into someone else's is never much fun, so I just never got into the alcohol culture.

It turns out to be a good thing. I used to drink alcohol about 4 to 5 times a year pre-diagnosis & normally only 1 drink at a time. We could say I'm a bit of a cadbury. Actually more like a half a bar.

I can count how many times I have had alcohol on one hand post-diagnosis. The story is the same every time.

Girl goes out. Girl has alcohol. Normally 1 glass. Girl gets wasted because girl is a lightweight. But that's ok because girl only spends $10 getting wasted whilst everyone around her amasses huge bills. Girl takes off pump before alcoholic drink. She does not bolus for any food or drink that she consumes from first alcohol consumption. Girls BGLs stay on 6 for ages. When girl gets home hours later she reattaches pump on 20% temp basal (80% reduction). Girl eats food until blood glucose levels are on about 15. Girl goes to sleep

At 5am girl wakes up low.

It happened again Saturday night. I had 1 alcoholic drink, then ate 3 slices of cake and had 2 orange juices with no bolus and with my pump disconnected. I went to bed on 14, woke up at 6am on 3.4.

Here's the creepy part: I wasn't the one who knew I was low. My fiance woke me up to test my BGL because he had a dream where I called him and asked him to remind me to check my BGL. He woke up and immediately asked me to test my BGL. Low.

I don't need a diabetic alert dog. I just need my partner to be telepathetic (I once had an English teacher who spelt Telepathic as Telepathetic. I'm now incapable of spelling telepathic right. I present to you: Vincentia High).

How does everyone else handle their alcohol?

Understanding

I was at an event hosted by Diabetes QLD last month, and there was an endocrinologist speaker who made mention a couple of times that people with diabetes were still the same people, but with an external pancreas.

A lot of people in the audience nodded their heads in agreeance at the remark. I always find these remarks confusing and difficult to make sense of. When talking of diabetes and the role it plays in our lives, I don't agree with this statement. Diabetes most definitely has shaped who I am as a person and how I live my life. I think it is foolish and silly to believe that you are still the same person as you were before diagnosis and that diabetes is just a little something you do on the side for shits and gigs.

I believe in giving diabetes the distant respect it deserves. It is more than running an external pancreas, because that external pancreas is being run 24/7. Saying we are simply running an external pancreas detracts from what we deal with on a daily basis.

Diabetes is my silent stalker, following me everywhere I go. 3 years ago, I was stalker-free. There were no hypos and highs lurking in the shadows. I had never had to sit out a meal and watch other people eat, despite being starving because my BGLs were too high. That level of self-control didn't exist for me before diabetes.

There is a fine line between letting diabetes run your life, and between giving it the attention needed.
This line also spills over into my relationships with other people. Which is another reason I didn't like this particular statement.

I learnt fairly quickly once people knew I had Type 1 Diabetes that they didn't actually want to know anything at all about it or how it affected me. My Diabetes is now only discussed without about 3 or 4 non-diabetics.

In the company of most Type Zeros, I stopped treating my diabetes like it had any impact on me. Then one day my older brother told me that 'he didn't feel sorry for me having Type 1 Diabetes because I could still eat whatever I wanted'. But he did 'feel sorry for his friend who was coealiac and a VEGAN BY CHOICE', because 'she can't eat much'.

I don't want pity from anyone for my diabetes. I live well with my diabetes. I just want understanding.

It was glaringly obvious that my brother, unfortunately, had no idea what it was that made having diabetes hard to have. I'm sorry your friend has coeliacs disease, I really am. That must be shitty. But the vegan thing - thats her choice. Comparing my auotimmune disease to her choice was really crappy. Being able to eat what I want is the trade off I get for nights when I wonder if I will wake up alive the next morning. Its the trade off for taking a massive supply bag with me everywhere. Its the trade off the fact that I might go blind one day. I don't know what coeliacs disease causes, but the choice to eat gluten or not is probably not that hard to do. If I inject insulin - the medication that saves my life daily - I am at risk of death by overdose simply because today I am more sensitive to it than I was yesterday. That's what I want people to understand - that its complicated and I don't ever get a break. I am always thinking about how to handle every situation with my diabetes.

I was on a CityCat the other day and for some reason read the safety instructions on where the life vests were located in case of emergency. I had to figure out a diabetes plan. My pump isn't waterproof, so in the hypothetical emergency, I was hoping I would be able to clip it to the top of my life jacket so it would stay above water and still work. I would have to somehow take my juice with me as I swam to shore, because that would be unintentional exercise that I had no time to prepare for, so the likelihood that I would hypo either in the water or on shore would be very high.

That's what diabetes is. No offense meant to my brothers friend who is coeliac and chooses to be vegan, but I don't think that those issues means that she has to worry about medical emergencies if she has to swim unexpectedly across the Brisbane River.

Diabetes is not just something I do on the side when I feel bored. Thats what I want people to understand.

Having diabetes is so often about what we have done wrong, what we need to work harder at. When we go to our Endo, educator or otherwise, they don't spend a huge deal of time concentrating on the parts that we're getting right. They're trying to fix what's wrong.

When things are going well with my diabetes, it becomes a background nuisance instead of an in-your-face temper tantrum, so I don't really think about it. I often forget the self high-five. The only time I ever really think to congratulate myself is when the oh-so-wonderful-must-be-magic 5.5 appears on my meter. Then its stop whatever I'm doing and happy dance it out.

Last weekend, my diabetes put on its 'Mr. Nice Guy' mask. It wasn't a fluke. I have been trying really, really hard lately. I'm going to take the time to tell myself: "Well done Ash, well done".

I woke up and went for a walk in the ridiculous Brisbane heat both days this weekend. First thing in the morning. It was good for my BGLs. (N.B. - exercise gives amazing BGLs all day. Exercise more).

The rest of the weekend was just a bunch of self-high-fives and some fist bumps with my fiance as somehow we managed to get diabetes to do what we wanted it to do.







It made what was a great weekend even better. You know you're doing something right when you can go to somewhere called 'Eat Street Markets' (read: gigantic street-food markets) eat a calzone, a potato spiral, a honeycomb milkshake and a cronut and end up on a 5.8. Just for reference: Cronuts quite clearly do not cause diabetes, as might have been stated by some very silly cafe a few months ago. 5.8. Non-diabetic range.

Getting it right just gives me so much more confidence to live my life as I want to. The difference between feeling controlled and uncontrolled for me can very much impact on what I feel comfortable doing. I had always wanted to go to one of those colour festivals, and there have been a few that I have almost signed up for, and with everything going so well, I finally got to go to one. I got covered in colour, and diabetes behaved itself.

Which was a massive relief because despite the Springflare fesival being a celebration as part of the G20 happening here in Brisbane this month, there was obviously no budget allocation for first aid. Like none, none. I had more medical equipment on me than the 1st aid tent. There were about 2 young volunteers working the tent with limited supplies consisting of tissues, rubber gloves and bottled (not even saline) water. I found all this out because I had to wander up there to get a BGL check done - thankfully I had my own supplies because they had none - and needed them to clean off a finger so I could actually find real estate to test on.

Fair warning for any Diabetics wanting to do a colour festival or run - pack alcohol swabs so you can clean a finger off. And bring some little zip lock baggies for your diabetes supplies too - I remembered one for my pump but forgot about my BGL checking supplies, and ended up with a pink lancing device.

It was so awesome to be able to enjoy my weekend without stressing that diabetes was doing things it shouldn't. I hope I have more of them.

I got tired and forgot to blog

If anyone knows anything about what I want as a diabetic, they know that its support within the diabetic community. A pain-free method of taking my insulin would be amazing, but I know that we're not quite there yet. Thankfully support doesn't require advancements in technology that take 10 years to get through human trial stages. Support can be offered straight away without use of squeaky white lab mice.

So I was super-duper-triple excited a bit over a week ago when Diabetes Queensland hosted  a networking event for young adults with diabetes. The young adult agenda is quite often overlooked in diabetes land, for both types of diabetes. Let's face it, Type 2 is generally older people who actually have time in their lives to go and do social stuff together, and Type 1 is usually seen as insanely cute little kids toting pumps in Peppa Pig waistbands. Both very, very deserving of support. But so are we young adults.

Being a free event, and being that young adults are normally pretty busy people, running between multiple jobs, university and social commitments, I was happy with the amount of bodies in the room. I tried to make a point of speaking to everyone attending, but I know I missed a fair chunk of people. The 2 hour time period flew by in a happy daze of diabeticness - the awesome kind of diabeticness where you have instant connections to everyone else in the room.

Going to these types of events is always a little different to any other kind of social event I attend. We have unique kinds of ice-breaking questions: "Do you still shoot up or are you pumping? How long have you been pancreatically challenged?" And I always get confused with all the other pumps and meters beeping. Normally when I'm out, like in a shopping centre, a meter or pump beep is a welcome noise that reminds me that I'm never alone in this disease. At a diabetic event I get confused and want to meet ALL the diabetics.

It was such a great event and if you haven't  been to a diabetic event yet, push yourself into going to the next one offered. You will meet amazing people, who when you say 'Im having a crap day' on FB, will actually jump on and say 'Me Too' instead of silly things Type Zeros say, like telling you to stop talking about your crappy disease and to be thankful you've got diabetes and not 'insert crappy disease here' (yep, this happens, and no it doesn't help, especially when I see those same Type Zeros complain of an itty bitty cold 2 days later).

What I Wish I Knew

A couple of weeks ago I spoke to a lady who had been told she had gestational diabetes. Insulin had been mentioned to her and she was quite upset over the whole thing. I did my best to try to tell her everything would be alright, and that it would all be worth it when she had her bub. I ran into her today and she thanked me for talking to her, but mostly for telling her it would be ok. Thinking about it afterwards brought back memories of when I was told that I had Type 1 Diabetes. Any diagnosis of diabetes is scary, whether temporary, such as GDM, or a Type 1, 2 or other diagnosis.

 I have vivid memories of the months where nothing was normal anymore and nothing that was happening to my body made sense. There are definitely things I wish I knew, or things I wished people had told me. Certainly things that I wish people hadn't told me.

The biggest thing, was that I wish someone had told me that it would be ok. Your life becomes a blur of doctors appointments in that 1st instance and they're all so busy teaching you how to live your new life with an impaired pancreas that nobody thinks to tell you that YOU ARE GOING TO GET THROUGH THIS. One day you will wake up and having diabetes is going to be something that is ok for you. Everyone I meet now with newly diagnosed diabetes, this is what I tell them, that it will be ok one day to have diabetes. Its one simple reassurance that nobody really understands how effective it can be. Luckily, about 2 months after diagnosis, I walked into an ice-cream store and asked if they had the carb count available. The guy serving me asked "Newly diagnosed Diabetic? It gets easier". They should tell you this straight away, but they should also add "In time" and tell you that everyone's 'time' is different. Thankyou, random diabetic.

In addition, here's some other stuff I wish I had known earlier:

• Insulin pumps. They exist. This is ALSO something random ice-cream serving diabetic guy told me about. After establishing my newly-diagnosed status, he pointed to his hip and told me "Get one of these. Best thing I ever did for my diabetes". He was right, and less than a month later, I had one too.

• There's this amazing pocket sized book called 'Alan Borusheks Calorie, Fat and Carbohydrate counter'. It has the carbs to almost everything you can think of. There's a wesbite too that you can use on your phone. 

• Life is never going to be the same again. This is not a bad thing, of course your life will change. What is normal just happens to change too. I was told that so long as I took my insulin and checked my BGLs I would live a normal life. The"I must not tell lies" mantra of Dolores Umbridge comes to mind when I think of being told that I would live a normal life. Once I realised my life was different, I was a much happier person.

• People are going to say silly things to you. I think they should hand out guidebooks on how to calmly deal with silly questions and situations when they diagnose you. People kind of suck in the understanding department if they haven't experienced it themselves.

• Doctors and other medical personnel should stop pretending that needles aren't scary. Yes, I got used to them, but having people tell me that it was 'nothing' and I had to just get over it made me feel like a failure when I wasn't coping with it too well. Whereas if I had been offered support and shown different ways to do them I would have coped much better and might not have moved onto insulin pump therapy as quickly as I did. (I later discovered I could do it easily through clothing which somehow made it easier for me to handle). Just to reiterate, It's ok to still be uncomfortable with needles when you're diabetic, but you do need to recognise that whilst being uncomfortable at times, they kind of give you life, which is kind of awesome. Take the time to learn how to make them more comfortable in your life.

• Don't look up 'diabetes' in google image search. You can never unsee it. If you must look up something diabetes related, be really specific: glucose meter or insulin pump.

• Be proud of yourself and don't feel like you need to hide your diabetes away. Unfortunately some comments were made when I was newly diagnosed  that had me in the bathroom to do a shot whenever I was out of the house. Once I realised that I had nothing to be ashamed of and nothing to hide life was a whole lot easier, and not only because I was no longer trying to find a bathroom to inject in if I wanted to eat out.

• I wish someone had thrust the reality check booklet at me and refused to let me leave their office without it. Find an internet forum, stalk other diabetics when you see them testing or join your local diabetes body. Just find support. No-one else knows what its like nursing a 3am hypo and eating ALL the food. 

• You WILL get to be old one day! Isn't technology brilliant? Yep, diabetes will not stop you being one of those elderly people in the stock images; where they're standing smiling next to their significant other, all fit and healthy and happily enjoying their retirement. These people:

And finally....

• Your feet aren't going to fall off spontaneously in the middle of the night. find a good team who you can trust to be there through your good and bad diabetes days and actually listen to them and take care of you health, and the whole feet falling off deal can be avoided. 

Readers: What do you wish you knew?

I am so hungry right now

There's a few funny things I like to hold onto from before my life with diabetes that make me feel, well, less diabetic. Normal, in a sense. One of these things was that although I was diagnosed with Type 1 Diabetes over 2 1/2 years ago, I maintained a similar eating regime. I struggled when I was 1st diagnosed to match my food to my insulin, but once my loyal pump came along it was a non-issue and I could go back to eating as I pleased. Which made me feel normal. I already had to test my blood sugars, give insulin in public, so being able to go out with friends and eat what I wanted was great in helping me to feel like diabetes wasn't attached to everything.

Lately, not so much. I don't know if any readers have had this problem, but it seems like all of a sudden, that small grain of my previous life I was holding onto, has slipped out of my fingers and ended up in the diabetes ocean that laps close to so much of my life already.

At first I thought I was getting higher BGL readings from a barrage of illnesses that I managed to catch, one after another. However they went away and my higher BGLs did not. I upped my insulin to food ratio. I upped my basal ratio. Despite that, I found that I could eat only select foods without my BGLs going into a tizzy.

So I increased my exercise from about 40 minutes per day to 1 hour and 30 minutes every day. All it has done is give me hypos at 3am. I haven't even lost any weight.

I am at a loss. The only thing I find now to keep my blood sugar in check is to eat minimal carbohydrate, 30gm for breakfast (whcih is really pushing it), 20gm for lunch and 20 gm for dinner. The sudden decrease in carbohydrates has left me feeling run-down, tired, cranky and I want to cry.

I feel like a failure and a liar. I have spent my time as a diabetic up until now chastising people who tell me "I cannot eat that". Now it seems they are right, and I really can't eat that. I consoled myself that at least, even though I had to have insulin, I could still eat what I wanted. Now it seems I have the worst parts of both Type 1 & Type 2 Diabetes.

I'm at a loss and I want my old life back (see, lack of carbs making me sad and emotional. Next minute I'll pull out my simple plan CDs, don some heavy black mascara, and go sit in front of Hungry Jacks in Queen Street with the rest of the emo kids).

This diabetes thing, it sucks.

Why I don't believe in a cure.

I was asked the other day if I was doing the JDRF Walk for A Cure this year. The one in Brisbane is being held on the weekend that I am in Melbourne, so I considered doing the Gold Coast walk.

I went to sign up and got to the point where you tick the little box to say if you're fundraising or not. I stopped my registration there. Because I no longer believe in a cure. Truthfully, I never believed in a cure. I felt like a traitor signing up for the Walk for a Cure when I don't believe in one.

And somehow that makes me feel like a traitor the diabetic community. I know so many people who need to believe in a cure, it keeps them going. I don't want to insult them. I don't want to lie though and be all gung-ho for something I don't believe in. I know many people were told on Diagnosis that a cure was just around the corner. I wasn't. I was told this is for life, and not to entertain the possibility. I hope I'm wrong. I want the people who believe in a cure to be right so badly it aches.

Don't misunderstand me, I believe a cure exists. Already. I think we've found one. But I don't for a second ever believe it will make it to me.

Because Diabetes makes money. A lot of money. It's ripped from the pockets of you and I. I forgo seeing movies with friends if the choice comes down to fun or test strips. Test strips and living to see another day for the win. A cure makes no money. A cure will destroy companies who have big stakes in diabetes management. Unfortunatley, Type 1 Diabetes is growing. More people are being diagnosed. More money.

So I believe in advancing technology. In 10 years time I hope to have the smart insulin patch sitting on my skin doing my thinking for me. Although I do wonder if that's too close to a cure for release. I wonder if it will disappear into the dark abyss that so many potential cures fall into and be forgotten.

My family and friends ask me what I will do when I'm cured and how far away I think it is. I don't have an answer to that, because I believe my diabetes is for life. And it HURTS to think about the life I used to have where I could have run around naked and free if I wanted to. Boy, do I regret not crossing that off my bucket list when I had the chance. It HURTS to know that I will never live a day where I'm not fighting my own body for control of my blood sugar.

I DON'T THINK IT MAKES ME PESSIMISTIC. Yes, it hurts, but I am NOT SAD about having diabetes. If I feel like I can't face the truth that I will have this disease until I die, then I don't think about having this disease until the day I die. I think about having this disease for today and managing it for today.

And honestly? Not believing in a cure is what makes me TRY so hard to control my diabetes. Not believing in a cure gives me acceptance. My cousin has Type 1 Diabetes and his parents pushed the 'cure in 5 years' belief on him. He has never accepted or made adequate space in his life for his diabetes. I can't do that.

Not believing in a cure makes me happy, because I can move on with my life. So this post is not a sad post. This post is me, living with diabetes and living with what is available to me in the here and now.

This post is me, putting my efforts into supporting those living with diabetes now. 

 

It's Raining Pumps

Earlier this year Diabetes Queensland asked me to write a few sentences on how having access to my insulin pump had contributed to my ability to live well with diabetes and how it had positively impacted on my life. It was for a study that Diabetes Australia were hoping to present to the government to improve access to and funding of new technologies in Type 1 Diabetes.

I think at the time I was moving, and I wrote something real quick just to show my support for the initiative.

Today DA met with and presented the report to Federal & State Governments and PHI companies, asking them to open up support to more people with Type 1 Diabetes, and to increase access to insulin pumps, continuous glucose meters, and other emerging technologies.

Currently only 12% of people with Type 1 Diabetes are able to utilize insulin pump therapy. 12%!!!! When I think of how much of my life using an insulin pump has given back to me, it blows my mind. One more time for good measure - 12%. Its no wonder I can easily convince random strangers that my insulin pump is actually a police tracking device or that I'm obviously a doctor with a pager. With less than 15,000 of us running around in Australia with pumps on, people have no clue.

Currently, for anyone over the age of 18 years, there is no available help for initial purchase of the insulin pump - people never quite believe me when I tell them the little beeping, vibrating device on my hip costs more than my car! Thankfully, I had Private Health Insurance which covered the cost of my pump for me. However had I not been financially secure enough to afford PHI, which in itself can be quite costly, the insulin pump would have been a pipe dream for me. The current Government funded Insulin Pump Program has helped pay for a mere 611 children (as adults are excluded, something I believe was addressed today) to buy insulin pumps since its creation in 2008.

I feel incredibly lucky to have my insulin pump when so many people in Australia still go without. And as much as I have just said I feel lucky, by the same token saying I feel 'lucky' that I can afford my PHI or the pump consumables is not something I should feel. The pump gives me the freedom to fully live my life as I want to. Why should that be lucky or rare just because I have Type 1 Diabetes? Your regular Joe Blow walking down the street can do what he wants, when he wants. Why is it 'lucky' for me to be able to do that? Every Type 1 Diabetic should be able to enjoy the freedom of life a pump can give.

After being diagnosed with T1D more than 2 years ago, and going onto injections, I felt like my life had stopped. I didn't see a future anymore. When I woke up and thought about my future, it was a blur of needles several times a day and eating at regimented times to avoid hypos and hyper. My life was about pre-planning exercise the night before and taking less insulin at that night-time dose to account for exercise the following day. And if the exercise didn't happen for some various reason, my day was about constantly fighting high blood sugars.

The pump doesn't just give me a good A1c (now in the non-diabetic range with help from my CGMS which DA also presented for today), and it doesn't just give me less needles (and therefore I am able to deal with my diabetes better psychologically) and it doesn't just help to cut back on hypoglycaemic events. The day I got my insulin pump, I got my future back. I could exercise, eat, sleep, when I wanted. Like anyone else could. All of a sudden, I had a lot more time in my day to dream about silly little things like my upcoming wedding (which I would hate to attempt on injections), having children, living to 80.

I have my fingers and toes crossed that the Australian government will offer its support to all people with Type 1 Diabetes  in Australia and help them access these life-altering and life-SAVING technologies.

"Genie, I'm Gonna Miss You"

A few days ago now, the world was shocked to hear of Robin Williams' passing by depression. I don't know what its like to live with depression but it does affect some of the most important people in my life. 

Similar to diabetes, depression is an 'invisible' disease that can show no outward obvious physical symptoms. And for some reason, because people can't see these symptoms, they think its ok to have a very wrong, ill-informed opinion of what it's like to have depression, anxiety, diabetes or similar and think that that opinion is right.

Horrible misconceptions have been said about Robin Williams' 'choice' to die. I read a few articles, including this one by Tom Clempson, explaining how suicide can be seen from a person with depressions point of view, and how society and the media can have it very very wrong. Suicide shouldn't be seen as a selfish 'choice' by the person affected by depression. Tom puts it clearly –

“Robin Williams didn't die from suicide, he died from depression. It wasn't his choice to suffer that”.

Dealing with diabetes, that is something I can understand. Like diabetes, depression is not an illness you choose to have, and like diabetes, there is no magic button that switches it off to allow you to enjoy life without the burden of your health problems; whatever they may be, whether physical or mental.

So when Robin Williams passed, I called someone whom I love very dearly, someone who had been and is being affected by depression. I had nothing that I could say about it, and no reason to call, other than knowing this news was far more than an interesting bit of gossip to them. In the end I didn't ask, because certain factors involving the flu made me think that whilst someone is dealing with the flu, probably not the best time to make them think about emotions, and emotions and sore throat is probably not helpful. So instead, I decided to educate myself on what depression can mean for a person with it. I might have no idea what it feels like if anyone ever talks about it with me, but it doesnt stop my ears from listening and doesnt stop that someone (or some people) knowing that I care about them and will do whatever I can to help them feel ok.

To all the beautiful people in my life, who are battling depression or have been affected by it: You inspire me with your bravery and courage to fight.