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Monday, 27 October 2014

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.

Monday, 20 October 2014

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).

Thursday, 2 October 2014

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?