Month: November 2015

Tomorrow, Diabetes Will Still Be Here

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Today marks the 30th of November. Today marks the final day of Diabetes Awareness Month. Today, I feel like I should be writing something grand to wrap it all up. Today I feel like I, along with the rest of the Diabetes Online Community, should be applauded for all of the energy put into November.

Tomorrow, as I turn over another page of the calendar, my focus will likely shift.

Tomorrow will mark the first day of Summer. Tomorrow, I will need to seriously get thinking about a birthday gift for my brother. Tomorrow, I will need to begin that dreaded task of Christmas shopping. Tomorrow, I will need to start my long overdue ritual of decking out our patio in Christmas lights. And tomorrow, I will begin dreaming of the beach, the tennis and winding down for the year.

However tomorrow, I will still have diabetes. Tomorrow, you will still have, or will still be affected by diabetes. And tomorrow, many more people will be diagnosed with, and will be newly affected by diabetes.

Tomorrow, I will still need to check my blood sugar level ten times. Tomorrow, I will still need to give more than just the four insulin shots my doctors prescribe. Tomorrow, I will still need to count the carbs in the foods I choose to eat. Tomorrow, I will still need to correct a blood sugar high. Tomorrow, I will still need to treat a blood sugar low. Tomorrow, I will still be frustrated. Tomorrow, I will still be plagued with long term fear. Tomorrow, I will still have to continue to perservere.

Tomorrow, we will still have people all over the world affected by diabetes. Tomorrow, we will still have people who cannot afford insulin and other basic supplies. Tomorrow, we will still have people who cannot access diabetes education and basic healthcare. Tomorrow, we will still have people who are unable to access technology that would make their diabetes management simpler. Tomorrow, we will still have innovations in diabetes care that are out of reach for many.

Tomorrow, I would love for nothing more than to shove diabetes into a drawer and forget about it until next November.

But while all of these issues are still here, Diabetes Awareness Month will never be over at the 30th of November.

Wednesday Hypo

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We were standing around the table in the warehouse, slicing open boxes as we do every morning at work. I was left in stitches after a hilarous moment that you had to be there to find funny. I laughed for several minutes, my sides in stitches and my eyes watering with tears of laughter. I haven’t had such a good laugh in a long time, and it felt so good.

As the laughter subsided, I focussed my attention back towards slicing open those boxes. I yawned loudly, several times, as I tried to get on with the task at hand. “Early night for you!” One of my colleagues exclaimed. I was all of a sudden devoid of energy, and couldn’t be bothered in the slightest to get on with the task at hand. I stopped and leant on the table. I so badly wanted to sit down and rest. And maybe not get up again. I told the guys around me that I was exhausted from laughing so hard, but I knew that couldn’t be further from the truth.

I had no doubt in my mind that I was hypo. I’ve had hundreds of typical hypos in my lifetime, but none are as unique as the ones that happen while I’m at work. And as I stood there, yawning, I pondered three possible options in my mind.

Option one: I was only half an hour away from my mid morning coffee and banana. My hypo can hold out for another half an hour, easily, I told myself. I bet I’m not even that low.

Option two: I could stop and have my morning tea break now, albeit earlier than usual. But then the rest of the morning will drag, I reminded myself. By then, I’ll really be yawning. 

Option three: I could duck out and grab a muesli bar from my locker. I hate eating in front of others, I thought to myself. Plus, I’ll probably spoil my appetite and won’t be able to enjoy the coffee break that I crave each morning.

I stubbornly settled on option one. I continued slicing open those boxes, lazily. I continued to yawn, over and over. My legs felt like jelly, ready to give up on me at any minute now. Every passing minute felt like an ordeal, and I could not believe that I still had the better part of half an hour to go.

I finally gave up, with my urge to satisfy that hypo overpowering my will to stay put. I ducked out of my work area, and quickly crammed a muesli bar into my mouth. Opting for that muesli bar was like having that piece of cake I’d been craving all day. All of a sudden, I was back to my normal self. I had the energy to stand up straight, rip open boxes, and get on with the job.

Shortly after, I was called upon to pull down some heavy items from up above. As I was standing there on the ladder, balancing an akwardly heavy box in my arms, I didn’t want to imagine what would have happened had I not treated that hypo.

Remember the ‘Humans of Diabetes’ blog post that I wrote for a company called AkibaH? Well, these guys are launching Glucase, a Smartphone case that is a complete Glucose Meter. There’s a nice visual of the product here, as well as an option to fund their campaign if you are interested.

The Reason I Can’t Advocate For The Cure

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I was already in the midst of a transitional period of my life when I was diagnosed with diabetes. It was my first year out of school. I was driving on my own. I was working my first proper job. I had uni assignments that I had spent way too much time procrastinating on in the weeks before I was diagnosed. I can remember sitting in the hospital cafeteria with my accounting book and pencil one afternoon, desperately trying to catch up. I had exams just a few weeks away. I was about to turn 18. And on top of that, I had a shiny new autoimmune disease to manage and hospital appointments to attend.

Needless to say, there wasn’t really any time for me to stop and take it all in. I didn’t really have time to cry about the fact that I would need to have injections for the rest of my life. I didn’t have time to beat myself up over what I had done wrong to deserve diabetes. There was so much going on outside of diabetes at the time, that I really just had to get on with it.

Since then, managing diabetes has quickly become a part of me. Despite the fact that diabetes is still only a relatively small portion of my life, it feels like I’ve been doing it forever. And most of the time, I hardly even think twice about why I’m doing what I’m doing. The insulin injections, the finger pricks, the terrifying night time hypos, the infuriating morning hypers, the carb counting, glycemic index monitoring, the binge eating, the blood, the sweat and the tears that goes into it all. Doing diabetes is like driving a car with the radio turned up. I can sing along to my favourite song, and chat with the person sitting next to me without thinking too much about the actual driving part.

I have never really stopped and told myself, “I’m doing this because I have diabetes. I’m going to have to do this every day for the rest of my life.” And for that reason, I can’t really say that I live my life hoping for, or expecting a cure for my diabetes.

Dad has been reassuring me since the day I left hospital that there will definitely be a cure. Ten, fifteen years away tops. Definitely in my lifetime. Mum is always cutting out stories from the newspaper about the latest breakthroughs in the diabetes world. We always rush to the television whenever we hear a story coming up on the news at dinner time. People who I chat with in the Diabetes Online Community are so damn enthusiastic about a cure, or finding one. Folks who have lived with diabetes for a lot longer than I have.

Boy, I bloody admire their enthusiasm. I really do. I wish I could get excited about it, but I just can’t. I didn’t even realise people dreamed up cure parties in their minds, because I have never once thought of that day ever coming. In some ways, diabetes seems like too much of a “business” now, to be simply cured and over with tomorrow.

Right now, getting my numbers more consistent during the night seems real. Getting back to a happy place with my diabetes management seems real. Getting a little more fit this summer seems real. Cutting back on chocolate seems real (okay, maybe just possible).

I can write. I can speak. I can advocate. I can raise awareness. I can exercise (hardly). I can eat (always). I can live my life, to the best of my ability and be as happy as possible.

But I can’t advocate for a cure.

But I don’t think I need to, either.

All of you seem to do the job a hell of a lot better than I could. You make the impossible seem just a little bit possible.

Guest Post – T1D Family Story

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Jules reached out to me last week in the Dannii Foundation Facebook group. She has kindly accepted my offer to share her family story here today, in order to raise awareness of the importance of government funding towards Continuous Glucose Monitoring. If you are affected by diabetes in Australia, I encourage you to write to the Australian Minister for Health, Sussan Ley – check out my letter here.

Dear Minister Ley,

I write to you today, to let you see a day in the life of our family of 5.

We are not your normal run of the mill family.

Our daughter, J was diagnosed with Type 1 Diabetes (T1D) at the age of 5. That day, our lives turned on its head. I had seen T1D in a family friend growing up. I often found myself thanking my lucky stars that I didn’t have this disease! I was grateful as my children started to grow, that I didn’t have medical issues with my kids! How quickly this changed on that day, almost 8 and a half years ago.

That isn’t where our story ends. 9 months later, my second daughter, E was born. It should have been the happiest time of our lives. It was, briefly, until my son, T was diagnosed with Coeliac Disease (CD) one month later.

Another Autoimmune Disease had found us! I kept questioning myself, what have I done wrong? Could I have done something different? The answer is no! There wasn’t ANYTHING I had personally done wrong!

That very same year, we lost my Dad to Cancer. A huge person in our lives was taken from us at such an early age!

A couple years after this, T was diagnosed with ADHD. Another reeling moment, fighting for him and for people in the Health Profession to just listen to us.

As time went on, puzzle pieces started to fall into place. We had traced autoimmune diseases back to my Great Grandmother who had Rheumatoid Arthritis (RA). Funnily enough, I found out that I too have RA. So more research was done. All the while, dealing with T1D, CD, ADHD and the death of my dad.

In 2013, my mother was diagnosed with Cancer. We first found out that she was terminal on the 25th of May, which was T’s birthday. Merely 3 months later, my Mum passed away. It was yet another blow to the family that is still very real today, and has left mental scars on us all.

Prior to her passing we were starting to question if T had ‘bigger’ issues than just ADHD. Mum’s dying wish was to see him tested for Autism. T was tested, and on October 30 2013, he was diagnosed with Autism.

In that time, E started school. We had high hopes for her, as we still do. Her teacher turned to me and said, “please get her tested for Autism.” Only a couple months later (January 2014), E was diagnosed with Autism also.

Let’s skip forward to December 2014. It feels like hurt just keeps following us. I was diagnosed with Coeliac Disease. Let’s skip forward to September 2015. I was diagnosed with Multiple Sclerosis (MS). Let’s skip forward a month on, and my husband was diagnosed with Gilbert’s Disease and placed into the high-risk category for Lupus. OMG! Yet another autoimmune disease was trying to invade our lives.

Ok let’s take a huge step back. Where does our not so little J fit into all of this? Remember that ‘little’ girl who was diagnosed with T1D at the age of 5?  She’s now almost 14.

Through all of this – dealing with diabetes, Coeliac Disease, Autism, ADHD, Cancer, Death, Rheumatoid Arthritis, Multiple Sclerosis, Gilbert’s Disease and Lupus in our family – where does the time and energy come to look after a child with T1D?

It comes mostly from me. I test her blood sugar levels at 10pm, 1am, between 3-4am, and then again at 7am when we get up. I can tell you now that most days I’m utterly exhausted! That is without taking into account that I have MS. This kills most of my energy levels. I end up in bed most of the day conserving energy for appointments for the kids, or just to get up and make dinner for them.

A day in the life of our family is a HUGE undertaking! It wasn’t something I chose or deserved to get. It is what it is. BUT there is something that would hugely help our family.

J doesn’t have a Continuous Glucose Monitor (CGM). Why? Because the cost of this device is out of our reach. We are a 1 income family. I am a stay at home Mum as it is too hard to juggle appointments for all of my kids’ special needs and requirements. A CGM would add that layer of not having to guess what I could do wrong. Often at night before bed, J and I will look at her numbers and then at each other. Which way is it going? If we only knew, we could act accordingly and treat the right way to allow her a nights full sleep! Often our normal schedule of testing goes out the window and we’ll have hourly to 2 hourly testing.

J is so damned tired and cranky. She’s just over it! She just wants to do normal teenage things. And she would give a lot for a good night’s sleep. Please, uninterrupted sleep would mean the WORLD to her. At the same time, OMG, I just want to sleep too!

Please give it to us in the form of funding for a CGM.

Yours Sincerely,

Jules.

Affected by diabetes? Join in the Oz Diabetes Online Community Twitter chat Tonight and every Tuesday from 8.30pm AEDT (GMT+11) by following the #OzDOC hashtag on Twitter.

Not Your Ordinary Bag of Shopping

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It was lunchtime on Friday afternoon. Friday is traditionally my I-can’t-be-bothered day, where I buy all of my food and drink for the day. My morning coffee, my morning tea and my lunch. And I really savour those 10 extra minutes that I have on a Friday morning which I normally spend making a ham and cheese toastie, peeling eggs that I boiled the night before, pulling a can of tuna and a packet of crackers out of the cupboard, or wrapping up two slices of Burgen fruit toast and a chunk of butter. I love my Fridays.

As much as I love to just collapse into a chair at lunch time (I’m on my feet most of the day at work), I try to run my errands so that I can head straight home when I’m finished. Usually that involves topping up my supplies at work – muesli bars, coffee capsules, tea bags, my block of dark chocolate, and everything else I eat at home that I forget to add to the weekly shopping list.

My diabetes educator gave me some sample 4mm needles to try with my insulin pens at my last appointment (I’ve been using 6mm for a long time), and they are amazing. I have more freedom to inject in areas where I have less fat on my stomach. The needles don’t irritate my skin so much, and they don’t sting so much in those “skinny” areas. I had intended on burning through my hoard of 6mm syringes first, but I am absolutely sick and tired of them to be honest. Which brought me to a rare workday diabetes errand on Friday at lunchtime. A trip to the Chemist for some 4mm syringes.

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I walked back into the staff room at work with two plastic bags in my hand – the first which contained my “healthy” lunch, and the second which contained my needles, and some hypo-fixing marshmallows. I slapped both bags onto the table, and went off to grab a cup and some water from the cooler.

I walked back to the table with my cup of water, and placed the bag with the needles underneath my chair. When I sat back down, one of my colleagues sitting at the table started to ask me something. She said a few words, none of which I heard, before she stopped. She kindly retreated, smiled, and said “never mind.”

I knew what she was going to ask. I’m certain she had seen the syringes through my plastic bag. Whether she had any clue why, is anyone’s guess. Would she have any idea what they were for? Unlikely.

Maybe she knew what they were for. Perhaps she knew someone with type 1. I would have happily had the diabetes chat with her, like I naturally have with many of my other colleagues when it comes up. However, I didn’t want to make her feel uncomfortable. And, I knew that she was only being courteous to me.

But as I sat there, and began to eat my cheeseburger and chips, I don’t think that she would have had any clue in the world that I had diabetes. Perhaps that’s a conversation for another day.