BGLs

I Need To Accept That I’m Only Human

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After writing about having a perfect week numbers wise, I already knew that I was on borrowed time. I knew that I was a ticking time bomb. I knew that sooner or later, I was bound to subside. And sure enough, reality hit me in the face yesterday morning as I woke up to a lovely blood sugar reading of 17.2.

It was no suprise, really. After riding on a high these past few weeks, I’ve been lulled into a sense of false security. In fact I felt so secure that even my mind was starting to agree, offering me words of encouragement to give into temptation.

“I did so well in that endo appointment today, I’ve bloody well earned that white hot chocolate from San Churros on the way home.”

“After all those hours of stable night time BGLs, I can easily afford one of Nonna’s cannoli and biscotti for afternoon tea.”

“One of those hot chocolates I saw them making on TV would go perfectly with my cannoli on this miserable day.”

“That Lindt chocolate is on sale for $1. I’ve been wanting to try it for ages!”

And there it was. By Monday it had gotten to the point where I didn’t even have to find a diabetes related reason to indulge in temptation. You can probably guess how the rest of that day panned out. A few squares of chocolate at lunch time. A few squares to bide my time until knock off. A few more squares because I’d already wrecked my blood sugar levels for the day. And finally, a few squares just for the sake of finishing the packet.

And so yesterday morning rolled around, leaving me with a number to think about. The number 17.2, to be exact. I live my life thinking about numbers. I go about my days judging myself for numbers. I eat, sleep, inject and correct in search of those numbers. And I will do absolutely crazy things in pursuit of those numbers. The perfect numbers.

But numbers certainly aren’t everything. A number doesn’t always define how much work I put into managing my diabetes. A number doesn’t define how good, how “normal” and how sane I feel when I get to indulge in treats such as that chocolate. And a number is certainly not something that will last forever. Because try as I might, every time I’ve come even close to achieving a run of perfect numbers over the years, I’ve subsided.

My point being, I need to accept that I am only human. I need to stop telling myself that those guilty pleasures are bad for me. And I need to stop justifying my choices and just be.

I need to tell myself that it’s these guilty pleasures that remind me that I’m human. It’s these small temptations that motivate me to keep going.

By being more accepting of those small temptations, I hope that I won’t feel the need to eat a whole block of chocolate again. And by being more accepting of those small temptations, I hope I’ll get back on track to keep at that winning streak.

Building Trust With My Endocrinologist

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I have struggled to place my trust in endocrinologists over the years. Trust that I can comfortably pour my heart and complete honesty on the table. Trust that I’ll receive total support and complete understanding in return. Trust that any and every judgement will be reserved. And trust that I won’t walk out feeling fragile and disheartened once again (you can read about that here).

Because trust might mean admitting that I had hypos every day last week. Trust might mean confessing to eating a massive dinner on Thursday and then having high blood sugar levels for the rest of the night. And trust might mean admitting to feeling overwhelmed and frustrated by diabetes at the moment. On some level, I’m scared of what will come next. Will she tell me that my diabetes control is terrible? Will she threaten me with complications? Will she tell me that I need to be locked away in a mental hospital because I can’t deal with it all?

Around two years ago, I was transferred from the ‘young adult’ to the ‘adult’ diabetes clinic at my hospital. I was no longer a newly diagnosed, high priority patient. I felt a great sense of independence, achievement and liberation over my diabetes. And I was finally given an endocrinologist who I could call my diabetes specialist (it was a bit of a russian roulette before). Over time, I’ve become more and more comfortable with her. I’ve been able to place a greater level of my trust in her. And each time I go there, I’ve felt confident in sharing more with her. And Wednesday’s appointment must have been my most successful yet.

First up was my hba1c result. It was a few points higher than last time, but I felt satisfied that it had gone up rather than down. I shared that I’d been having lots of hypos prior to my holiday. I’d become obsessive compulsive in checking my blood sugar levels, and was trying to correct them shortly after eating dinner. The holiday did a perfect job of taking my mind away from obsessive testing, and my blood sugar levels had stabilised nicely in these past few weeks I’ve been back. I’ve just had My Perfect Week!

Next up was insulin doses, and we talked through my lunch. 7.9 before lunch, cheese toastie on Burgen bread with 4 units of insulin, 4.6 after lunch. Perfect. As usual, that dreaded question of how many hypos in a week came up. And as usual, I gave a vague answer that did have some truth. I was having significantly less hypos, and none were happening overnight anymore.

I brought up my recent eye concerns. I told her about my twitch, and that I’d gone and had my diabetic retinopathy scan in the process too. My recent bloodwork came back with good kidney and urine functions and some apparently ‘amazing’ cholesterol levels also.

We went into the exam room, where she had a look at the injection sites on my stomach. I hate this part because I always get really ticklish at the pokes and prods! She couldn’t believe that I used 6mm needles because I am so skinny, and gave me some 4mm needles to try at home.

It felt great to review and talk over everything in there. And as I voiced my issues, I made some realisations about myself that my endo seemed to notice as well. I was a proactive patient. I seemed to be able to identify and stay on top of my issues. I was among the least concerning of her patients. And according to her, this was the best case scenario she could expect from one of her patients.

I definitely walked out of there with a stronger focus and motivation to get me through the next few months. I’m glad I rang for that cancellation and didn’t wait until January. “Don’t test!” my endo jokingly said to me as I walked out of there, a smile on my face.

To My Dear Friend Mr Hypo

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To My Dear Friend Mr. Hypo,

I’ve been in denial about you. For a very, very long time, I’ve been pretending that you don’t exist. I’ve done a pretty good job of hiding the way you make me feel. In fact, the people around me wouldn’t even know that you are there.

I am writing to say that you are one of my least favourite things about diabetes.

You have a knack of waking me up in the middle of the night.

You are the reason I swear.

You are the reason my family and friends see me in a bad mood.

You leave me feeling ashamed.

You leave me feeling guilty.

You leave me feeling demoralised.

You make me feel about this big.

And you know exactly how to make a grown man cry.

For a long time, I’ve struggled to admit that you are one of the biggest hurdles I’ve had to overcome. Because saying that you have gotten the better of me is like admitting defeat. And admitting that I am not controlling you as well as I should be.

Locking you away two weeks ago was one of the best things I ever did. During these past two weeks, I’ve had some of my best nights sleep all year. During the past two weeks, I’ve rediscovered what it’s like not to be bothered even once between the hours of 10pm and 6am. And during the past two weeks, I’ve woken up feeling on top of the world.

Every morning when I test my blood sugar levels, I know exactly how you feel every time you come to visit. I raise my arm in victory, and quietly exclaim “yes!” I am so pleased that you have not caused a single wave in my blood sugar levels for 8 whole hours straight. And I am so pleased at the thought of those perfect blood sugar levels for 8 whole hours straight. There is no better way to start my day.

I think I have finally found the key that will keep you locked away for a very, very long time. I’ve hung it up on a hook labelled ‘Patience.’ With ‘Patience,’ I am able to resist the temptation of checking my blood sugar levels straight after dinner. With ‘Patience,’ I am able to resist the temptation to over correct my blood sugar levels to get them where I want them to be now. And with ‘Patience,’ I have finally been able to rediscover myself away from you.

And that person is someone I look forward to getting to know.

With no regards,

Frank

There’s No Such Thing As “High Use”

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I poured my heart into the column I wrote for Insulin Nation last week, which you can read here. I questioned why I am made to feel guilty for using more test strips than what is subsidised through our National Diabetes Services Scheme (NDSS) here in Australia. I knew it was a topic that I felt strongly about. What I didn’t expect, however, was the overwhelming response from other people who felt exactly the same way that I did. Individuals, parents, children and people commenting from the other side of the world.

Over on Twitter on Saturday morning, a tweet from my #OzDOC friends Kate and Melinda at Twice Diabetes caught my attention. In response to my column, they suggested to a concerned Aussie d-parent that they could apply for a “high use exemption” from the NDSS limit with a doctor’s sign off. Another d-parent joined in the chatter, telling us that she had a letter from a paediatrician outlining the necessity for “high use” testing.

Look, that’s great. I am really pleased to hear that these individuals were able to access their supplies in their time of need. But it’s not good enough. Why should these individuals have to go and justify the need for these supplies? The very supplies that are keeping them, or their children, alive and healthy. By putting people into boxes such as “high use,” we are only further demoralising them. More than likely, they will go to their doctor. They will face a string of questions and concerns over whether they are managing their diabetes well enough. They will face judgement. And more than likely, they will feel inadequate.

In my opinion, there is no such thing as “high use” where Blood Glucose Monitoring is concerned. In my opinion, regular Blood Glucose Monitoring is in everyone’s best interests. It gives me a sense of control and peace of mind over my diabetes. It keeps me safe and healthy as I carry out my daily activities such as work, exercise and leisure. The very activities that can have implications on others if not monitored adequately.

I have gone through burnouts from diabetes. I have gone through periods where I have wanted to give up, and periods where I have lost the will to monitor my blood sugar levels. And during those tough times, the last thing I need is to be encouraged to test less.

I don’t want to place all of the blame on Diabetes Australia or the NDSS. I am really grateful to live in a country where we are blessed with such a good healthcare system. I also blame the meter companies who over inflate the prices, and make a profit off of our disease. But that’s another blog post altogether.

Personal thanks to Craig at Insulin Nation for your support of this story all the way from the US, and for pushing it to Diabetes Australia and the NDSS on social media outside of your work hours. I was also extremely pleased to see that I had a small victory. The NDSS agreed that this quote on their website did indeed make individuals like myself feel guilty:

“There are limits to the number of products you can purchase on the NDSS. If you reach the limit, we will contact you to give you information to help you manage your diabetes.”

The NDSS updated their website on Friday as a result of my column. The limits to diabetes supplies accessible through the NDSS are now clearly specified (they previously weren’t), and there is a much nicer wording for those who require supplies beyond the limit subsidised:

“We understand that some people may require more products to manage their diabetes. If you require further assistance with accessing products to manage your diabetes, please contact the NDSS on 1300 136 588 or at ndss@diabetsaustralia.com.au.”

Thanks to Diabetes Australia and the NDSS for reading the article and taking my opinion on board. I do feel really proud to stand up for all Australians living with diabetes and to walk away with a small victory.

However, we still have a long way to go.

I Don’t Feel Like I’m Doing Enough

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I’ve been stuck in a rut for a while. My hba1c levels are okay, I guess, but they’re not great either. And they’ve been stuck in that good, but not great phase for a long time. And right now, I just can’t stop thinking about this tweet from last week.

I have a love hate relationship with my doctor. I love how he can quickly dismiss my concerns when I’m not feeling well. But I hate that I don’t feel that anything constructive comes from seeing him. Every single visit usually goes the same way. He’ll tell me that my illness is “just a virus,” send me for a blood test and then tell me “you need to get your sugar levels down.” I’ll nod my head. I might even manage to mumble an “okay.” He’s usually running an hour behind, and I’ll be lucky to get five minutes in there before I’m pushed out the door. I know he’s not a diabetes expert, but it’s not like he even tries to offer any sort of genuine help.

Then there’s the endocrinologist. An endocrinologist appointment really does motivate me to do better with my diabetes. And I can talk to the endo, if its someone I’m comfortable with. But I don’t get to see them as often as I probably need to right now. If I’m lucky, I’ll get to see them twice a year. And if I’m extremely lucky, I’ll get to see the same endo both times. I’m due for an appointment right about now. In fact, I could really use an endocrinologist appointment right about now. And out of the whole six months that my appointment could have been scheduled for, it just had to be in the two weeks that I was on holidays. And now, the earliest I can reschedule for is January. January, for heaven’s sake. Being in the public health system can be so frustrating sometimes. 

And I just can’t stop thinking about that tweet. I think there’s a good reason I wrote it. I need to try harder to find the support I was calling for in that Tweet. It’s well and truly time for me to get back on track. I’ve had my break. Perhaps too long of a break. I’ve had a lot of fun and enjoyed a lot of good food. And now, it’s time for me to hit that reset button that comes after a good break.

Normally, I would have accepted that wait until January for an endocrinologist appointment. Normally, I would make those excuses about work and life and being busy. But today, I’m going to give my Diabetes Clinic a call and see if there are any cancellations that have come up. And I’m going to make more time for diabetes. Because right now, I don’t feel like I’m doing enough. And right now, I want to feel better about myself.