Diabetes Advocacy

Access to Supplies Isn’t a Question, It’s a Right

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My Blood Glucose Meter is one of the most important things in my life. Its one of the first things that I see on my bedside table when I wake up in the morning. I’ll zip it up securely in its little black case and tuck it safely in my satchel, where it will accompany me on my daily commute. I’ll open my satchel again before I start the car, just to make sure that its there. When I get to work, I’ll place it carefully on the shelf in my locker. It patiently sits there for much of the day, ready to be at my service as much or as little as I need it. Before morning tea. Before lunch. As a post-lunchtime reassurance. If I start to sweat or shake uncontrollably. At the end of the day, I’ll tuck it safely back into my satchel, before it finds its familiar place back on my bedside table at home.

When I’m dealing with a disease that is unpredictable and ever-changing, numbers are always on my mind. They plague me throughout the day. They plague me when eat. They even plague me when I stir in the middle of the night. I’m constantly questioning myself. Thinking to myself. Doubting myself. ‘I wonder what my blood sugar level is right now? Did I give myself enough insulin at lunchtime? How much will I drop in the next hour? Am I feeling hypo? No, it must just be this afternoon’s task that’s exhausting me. Wait, maybe I am hypo? No, no way. Well, maybe…’

Last week alone I had 58 moments of uncertainty. Last fortnight there were 125. And in the last month there were 257 of them. And I have this one little device that has the power to sweep my mind clean of all the thought processes scattered there. To dismiss all of my concerns and rid me of my fears. To keep me grounded. To keep me sane. One little prick produces a number and I’m empowered again. I feel secure. I’m back in control. I know how to react.

I consider myself pretty lucky here in Oz to have unlimited access to blood glucose meter test strips, needles and other non-medication products that I use on a daily basis to manage my diabetes. Since registering with the National Diabetes Services Scheme (NDSS) upon diagnosis, I have been able to get my diabetes stuff at a heavily subsidised cost, without a doctor’s prescription, whenever I like. As little or as much as I feel I need it in order to manage my condition.

So, I’m pretty devastated to hear that some Aussies with type 2 diabetes are about to have that freedom taken away from them. If their diabetes is not treated with insulin, it will be up to their doctor to decide whether they will benefit from blood glucose monitoring after an initial 6 month supply of test strips.

Yes, a type 2 would not use blood glucose monitoring as much as a type 1. But I’ve no doubt that they would go through those exact same feelings and thought processes. I’ve no doubt that at some point during the day, the week or the month, a type 2 would need to rely on the security of a blood glucose test. If they’ve eaten something different at dinner. If they’ve done more exercise than normal. If they’re not feeling well. Diabetes causes A LOT of uncertainty.

Its like being handed a box of test strips and being told “you have 6 months to get your diabetes under control.” And then in 6 months your blood glucose meter is taken away and you’re told “you now have to keep your blood sugar levels between 4 and 8 all the time.”

Diabetes is not something that we can always “get” under control in 6 months, let alone maintain all the time. Our lifestyles are ever changing – work, travel, diet, families, physical activity – all of which have significant impacts on our diabetes. Doctors aren’t by our side 24 hours a day to see, let alone understand, what we’re going through. The only person who knows you best, is you.

We are blessed to have all of these fantastic tools available today to help us manage our diabetes. For many, a blood glucose meter gives us a sense of security and control. It should never be a question of who gets them. I only wish the people making these decisions would understand.

Source: The inspiration for this story came from Renza at the Diabetogenic blog. There are more details about this decision process over on her blog.

Diabetes and Me

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Happy Diabetes Week to all of my d-friends in the UK! This year’s theme is “Diabetes and Me,” and asks us to think about how we manage our condition and live life to the full.

The one single thing that helps me to live life to the full every day is attitude. While diabetes has caused A LOT of frustration over the years, I don’t think I’ve ever spent my time wishing diabetes away. As angry as I might be, I’ve never cursed or blamed that setback on diabetes. I don’t walk around with a chip on my shoulder or attaching any stigma to myself. Diabetes is a reality that’s not going away anytime soon. Its something I’ve accepted.

I suppose I credit this to being hospitalised upon diagnosis (click here to read my diagnosis story). I had all sorts of horrible symptoms – lethargy, weight loss, urination, loss of saliva, excessive thirst, loss of appetite and panting. I honestly thought I might die. So, by the time I was diagnosed with diabetes in hospital I didn’t really care that much. I was just so relieved that all those symptoms had gone away. I had saliva and I could eat again!

In fact, most days I never really think of myself as a person who has diabetes. When I’m testing myself or injecting insulin, I never think too much about what I’m doing or why I have to do it. Its sort of become something that I subconsciously have to do and deal with.

Diabetes is one of the craziest, ever changing, emotional rollercoaster of experiences in my life. Its something that I fit into my life, and not the other way around.

I’ve graduated from uni.

I’ve cut down Christmas trees.

I’ve celebrated birthdays and enjoyed more than my fair share of cake.

And then there’s times where I’m still a child at heart (worth it!).

And when I remind myself that I have experienced all of these things with type 1 diabetes, it makes the victory even sweeter.

Diabetes Week UK runs from June 14 to June 20, 2015. Find out more about the event on the Diabetes UK website, and get involved by using the hashtag #DiabetesAndMe on social media.

More Understanding From Diabetes Professionals

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I’ve enjoyed lots of perks being in the public health system. Namely, its cost me next to nothing, and I have had access to all of the services I need through my hospital outpatient clinic (podiatry, optometry, etc.). But one of the downsides to being in the public health system is that you don’t really get to see the same doctor every time. So you don’t really get to build that relationship, that trust, or that level of comfort that allows you to talk openly to that person. There’s also a long patient list, so there’s often a long time inbetween appointments.

I remember one of my endocrinologist appointments. I’m pretty sure it was in the first year of my diagnosis. I got my hba1c and other bloodwork done before I went in to see the doctor. I think the hba1c was somewhere in the high 7s if I remember correctly. I showed the doctor my book where I had written all of my blood sugar levels. I was newly diagnosed. There were lots of 10s, 12s and even 15s. There weren’t a lot of 5s 6s and 7s. And all that doctor could say to me as he was flipping through that book was that I had very poor control of my blood sugars.

No words of encouragement. No understanding. No support. I don’t even think he understood exactly what it was like to be a diabetic. Or what I was going through. And then he even had the nerve to start scaring me with words about diabetes complications if I didn’t get those numbers down.

I was so disappointed. Here I was, having conquered my first few months in a strange new land and yet all he could do was shoot me down. I was feeling disheartened and guilty as I walked out of that room. And my wonderful diabetes educator could see the look on my face, and asked me what was wrong. She did her best to give supportive comments and words of encouragement. She even offered to go in there and say something to that man, which I politely refused. She knew that I hadn’t been at it long. She knew that I was trying my hardest. And she clearly knew what it was like to be a diabetic (and she did not have diabetes herself).

If that doctor knew me better, if I was his regular patient, this probably wouldn’t of happened. But that’s the reality of the public health system. Its a revolving door of doctors catering to a long, long patient list. And that’s okay. But with a little more understanding and a little less judgement, we both could have gotten a lot more out of the appointment that day. If that doctor had taken a few more minutes to look at my background and get to know me, this probably wouldn’t have happened. If he had made me feel a little more comfortable, I probably would have been able to elaborate more openly about my diabetes. And he would have been able to give me better, more personalised support and encouragement.

This post isn’t a way of attcking diabetes professionals. Because I’ve also had many outstanding experiences with diabetes professionals who have gone above and beyond to help me. Encourage me. Support me. Make themselves available to me inbetween appointments. Understand me. Namely, my diabetes educator. But its also important to raise awareness that we don’t get the positive experiences, understanting and encouragement that we, as diabetics, deserve. Nobody should have to go through what I went through that day. And that’s the one diabetes thing I would like to see change.

I’ve written this post as a participant in Diabetes Blog Week 2015. Follow #dBlogWeek on Twitter for the latest updates from the event and participants.