Diagnosis

Perspectives on Pumping.

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I recently had a student reach out to me for insight on a research project titled ‘Positive and Negative Social Impacts of Insulin Pumping.’ I really, really loved these questions. I was never asked how diabetes made me feel after my diagnosis. I got a pump because I felt like it was my last chance to gain some control over my blood sugars. I never really thought about how a pump would make me feel. 

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Did you ever feel excluded or underestimated because of diabetes? Was this also impacted based on the treatment you use?

Being diagnosed with type 1 at the age of 17, I had lived all of my life to that point without diabetes. Naturally, I felt very conscious of ‘introducing’ and managing my new condition around others.

Diabetes also felt extremely isolating. I didn’t know a single other person with type 1. Management tasks like checking blood sugar levels and calculating insulin doses were largely invisible to those around me. It was difficult to lean on my loved ones for support, as I didn’t feel that they would be able to completely understand the complex nature of this condition.

To answer your question, I don’t think that these feelings would be any different with either pens or a pump. It’s the diabetes itself!

Did the insulin pump change your lifestyle or encourage you to start new habits? 

The insulin pump definitely motivated me to start counting carbohydrates, rather than guessing my insulin doses. I started paying more attention to my diabetes and learned how to better respond to many of the different factors that affected blood sugars. And, of course, it offered an element of convenience in my insulin dosing over needles. The variance in my blood sugars improved a lot within a few months of pump therapy.

I also found that the insulin pump produced more low blood sugars during exercise than injections ever did. Having rapid acting insulin as my basal, rather than a long acting insulin used with injections, made it easier to go low while I was on my feet at work or doing housework at home. Physical activity with a pump requires a lot more planning, which for me is a little discouraging if I feel like going for a spontaneous afternoon walk around the block.

Has diabetes inspired or motivated you to join different groups? Has it, generally speaking of social impacts, improved your life?

Absolutely! Although, I don’t think I would have been keen on meeting other people with diabetes in the initial years after my diagnosis.

I began using Twitter with more of a diabetes focus when I started my blog in 2015, which connected me to a vibrant online community of people with diabetes from all over the world. This community was so valuable to me, and eventually motivated me get out and meet other people with diabetes.

Diabetes has given me a lot of confidence in regards to being more open about my condition, and I’d like to think that this confidence has extended beyond just my diabetes. Peer support has definitely improved my mental wellbeing. Diabetes is such an isolating condition to live with, and having peers to talk to and laugh with are a constant reminder that I am not alone in this.

How flexible are you with the insulin pump?

The pump will give you more flexibility if you’re prepared to put the hard work in.

For me, the pump has offered me the most flexibility in being able to customise basal insulin to the time of day. For example, being able to deliver a higher rate of basal insulin in the early hours in the morning to combat what is known as dawn phenomenon – a surge of hormones that triggers the liver to dump additional glucose into the bloodstream.

But again, the pump is only as smart as the person pressing the buttons. In this example, I’ve had to make the commitment to monitoring my blood sugars, identifying trends and making adjustments to my basal rates accordingly.

Does the changing of the cannula take a lot of time and patience?

It was definitely a learning curve in the beginning. I had to make sure that I didn’t pick an overused spot on the stomach that could bruise or bleed, that the cannula didn’t kink on the way in, and that there weren’t any air bubbles in my pump line that could impair insulin delivery. Site changes did create a little anxiety in the beginning. If it wasn’t successful and I wasn’t getting my insulin, my blood sugar would go high pretty quickly and I could be in Diabetic Ketoacidosis within a few hours.

Today, it’s just another ‘chore’ that I have to stop and get around to doing every three days.

Any additional positive or negative impacts of the treatment on the social aspect?

I’m pretty neutral on this. The pump does make things more convenient in social settings and when I’m on the go. It’s worth noting that lots of people dislike needles, so the pump is a big help there. But there’s also a lot of maintenance you need to keep on top of and more consumables you need to keep handy, so it depends on how you look at it!

I feel it’s the nature of diabetes as a whole, rather than a particular insulin therapy, that may have an influence on social aspects of life. I feel its more important that people with diabetes receive adequate support to accept their condition and live well with diabetes – from their healthcare professionals, peers, loved ones and even mental health professionals.

How I Wish Mental Wellbeing Was Approached on Diagnosis

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Another week, and another column up over at Diabetes Daily. This week I’m reflecting on how I wish that mental wellbeing was approached on my diagnosis.

“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”

You can check out my full column over at Diabetes Daily right here.

A New Member of the D-Club

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“Doesn’t your sugar levels go high if you eat too many sweets?”

This was a question that was posed to me over the weekend, as I reached over and grabbed a sweet from the table. 

“I’m low at the moment” were the first words I could get out of my mouth, resisting the urge to add more words until the sugar was sitting safely in my belly.

“I have type 1 diabetes. My body doesn’t produce any insulin.”

I pulled my pump out of my pocket, thankful for my newfound prop that keeps my flailing hand gestures at bay.

“This delivers all of my insulin for me. Technically speaking I can eat anything I want, so long as I give insulin to cover it. Obviously it is better for my blood sugar levels if I eat healthier foods, though.”

This person then went on to tell me that she had been recently diagnosed with early signs of type 2 diabetes, and that the lifestyle changes suggested by her doctor were easier said than done. That she wasn’t sure how changes to her diet would fit in with the rest of her family at home. As she questioned her need for the medication prescribed to her, I could see just how hard it was for her to accept her condition. It brought back my own memories of hiding my diabetes, unable to accept my new ordinary.

I curiously asked if she was testing her blood sugars at home, or whether she had seen a diabetes educator yet. As she told me ‘no,’ I nodded my head. The last thing I wanted to do was to try to give advice. The last thing I wanted to do was to act like I knew what she was going through, or what was best for her. Type 2 diabetes is completely different to type 1. Heck, one person’s diabetes is completely different to another’s.

Yet at the same time, I felt like I should have done more to help her out. I felt sorry for her, because her doctor didn’t seem very helpful or supportive. I hope I said the right things.

“I know it’s hard. It’s taken me ages to make changes that have lasted. I’ve had diabetes for six years, and I still have days where I don’t feel like I’ve got it right.”

All I really wanted to do was to give her a big hug and tell her everything was going to be okay.

Hopefully she sees in me that it will be.

Setting the Record Straight

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Diabetes campaigns here in Australia never cease to disappoint me. They always tend to focus on the negatives, such as the complications and the hard hitting statistics which instil fear. Our campaigns lack positivity, and don’t do those of us living with the condition a lot of justice.

In my humble opinion, a campaign for Diabetes Week is simple. One where we encourage people living with the condition to share their stories in order to help raise awareness. Diabetes UK always seems to do this very well, with positive, empowering campaigns that actually engage and involve people with diabetes.

Before I start getting depressed about the awful complication-themed Australian diabetes week next month, I thought I’d add my two cents worth to Diabetes UK’s fantastic campaign for Diabetes Week, Setting the Record Straight. Here goes…

1) A diagnosis does not mean that you’ll develop complications. I heard a lot about complications in the Australian media during the first year or so after my diagnosis. I remember feeling horrified about that possibility, and even writing myself off because of my diabetes in conversations. It took me a long time to realise that this was in fact, not true. 

I still remember a fantastic quote I found somewhere on the internet that went something like “you might feel like crap today, but complications can take years to develop.” It’s a great perspective and it always reminds me that it’s never too late.

2) Diabetes takes time to get right. A LOT of time. After I was first diagnosed, I remember talking to others in the context that I would eventually get it sorted. Once I had everything figured out, I wouldn’t need to test my BGLs so often and I wouldn’t be having so many hypos. Six years later, I’m still trying to get it right!

My diabetes educator reminded me recently that “even though we want to do as much as we can straight away, it takes time to get it right and you need to be patient.” Be kind to yourself.

3) You don’t have to turn your life upside down or give up everything! Magazines are full of ways to change your life and feel better overnight and blah blah blah. Doctors talk as though change can happen with a wave of the magic wand. It’s completely unrealistic. I’ve made a lot of small, gradual changes to my diet and my routine since I was diagnosed. But I haven’t compromised on the things I love. I don’t do dedicated exercise, because I don’t enjoy it. I still eat chocolate. I still drink lots of coffee. I don’t peel the skin off my takeaway chicken. I still enjoy myself at Christmas time. 

A colleague recently told me that “it’s easier said than done.” While I do agree, I reminded her that it doesn’t mean that you have to be unhappy.

4) Finally, I’m loving the Faces of Diabetes campaign that’s going round on social media. Because there are actual human beings behind the condition, and it’s important to keep that in mind when advocating. You can get your picture here.

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Happy Diabetes Week to those of you in the UK! You can find out more at diabetes.org.uk and by following #DiabetesWeek on social media.

Six Mother’s Days Ago…

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On this day, exactly six Mother’s Days ago, I was making one hell of a racket in the kitchen. Mum walked into the kitchen in the early hours of the morning, to the sight of me making Orange Juice Granitas with the Snow Cone Machine. I had woken her up, and she was angry.

“The doctor told you to have hot drinks!” She yelled at me, referring to what we believed at the time to be a virus.

Little did I know that when I woke up in a few hours time, I would be taken to hospital. Little did I know that in a few short hours, I would be diagnosed with diabetes. A condition that would change my life forever, yet a condition that would shape the person I am today.

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When I think about six years of life with diabetes today, it’s hard to believe that it’s only been six years. In some ways, it feels like it’s been a lot longer than that. I can hardly remember what life was like without the finger pricks, the insulin injections, the 2am alarms and the corrections today.

Yet every time I recall this series of events, it feels like it happened only yesterday.

Nothing else in my life has ever demanded more time and attention. Not a day goes by that I don’t worry about whether I am doing enough to stay on top of my long term health. Despite my family’s best efforts to praise me, and to tell me that I shouldn’t feel this way, diabetes always weighs on my conscience. Nothing else in my life has ever made me feel so guilty.

At the same time, I do feel proud of myself. Everything I have accomplished in the last six years sounds amazing, simply for the fact that I have done it with diabetes. 

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I’m grateful that I can still live a relatively normal life. I can’t recall anything that I haven’t been able to do because of diabetes. I’m so lucky to live in a country where I have access to everything I need to stay healthy.

Not a year has gone by that I have not been reminded of my diaversary on the 9th of May. But I have never really celebrated it. And after a year and a half in the diabetes community, I’ve been thinking long and hard about what I should do to mark this day.

While my diabetes might have overshadowed Mothers Day all those years ago, today I realise I have two good reasons to celebrate.

Happy Mothers Day to the Mother who continues to make sure that I eat and that I wear my Medic Alert bracelet (with little success).

And cheers to six years of life with diabetes. Toasted yesterday with Lasagne, Wine, Cheesecake, Chocolates, Coffee, and hopefully some Cannoli later this week.

I can’t wait to see what year seven will bring.

Sidenote: Happy Diaversary to Bec at Sweet and Sour Diabetes. You beat me by four days!