Emotions

Pieces of the Emotional Support Puzzle

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I’ve written a great deal about the need for more “emotional” support from diabetes healthcare professionals.

In my humble experience, I often felt a lack of emotional support from my endocrinologist and my doctor. I never felt that they had the time for me on a busy clinic day, and I didn’t really feel too important when there were younger children and families around who understandably required more attention.

It was often hard to open up and be honest with them for fear of judgement. My very first endocrinologist told me that I had very poor control, just weeks after my diagnosis, which you can read about here. Meanwhile, my general practitioner often told me that “my sugar levels are too high” without actually offering anything more substantial or helpful.

I’m amazed at the amount of “smart” comments that I receive, with suggestions that I should find a counsellor every time write about these issues. Comments like these always leave me second guessing myself. Am I too vulnerable? Over emotional? An attention seeker? A basket case? A person who shouldn’t be blogging?

So, it was really fantastic to see that psychologist Marisa Hilliard dedicated a session at the World Diabetes Congress in Vancouver last week to this very issue: diabetes healthcare professionals prioritising emotional wellbeing. I was also honoured that this post of mine was quoted in her presentation.

For the record, I certainly don’t expect that an endocrinologist or general practitioner should have to fill the role of a counsellor. They are qualified professionals in high demand. No doubt they have far better things to do with their time than listen to me blubber on about my diabetes.

However, I do expect that health care professionals will listen to me. I do expect that health care professionals will make me feel comfortable to open up to them. I do expect that health care professionals will look beyond what’s written on the charts and talk to me about what’s going on. I expect that health care professionals will show some empathy during consultations. And I expect that healthcare professionals will offer support and encouragement.

This is not a big ask. This can be done. Even on a busy clinic day. Even when time is limited. Even if you’re meeting me for the first time. Even if you are a general practitioner who is not a diabetes expert. Nobody has to be qualified to be supportive and empathetic, in my opinion.

Emotional wellbeing helps me to see value in my diabetes healthcare team. It encourages me to continue to manage my diabetes to the best of my ability. A good experience motivates me to keep in touch with my diabetes healthcare professionals and to ensure I have my regular checkups. Above all, emotional well being has helped me to prioritise my health. It’s the difference between walking out of the doc’s office holding back tears, or with the biggest grin that I can’t wipe off my face.

Obviously, my endocrinologist and general practitioner are only individual pieces of the “emotional” support puzzle in my diabetes care. I have my wonderful diabetes educator, Gwen, who has my undivided attention during every 60 minute session I have with her. I have my family at home, whom I have a newfound appreciation for in my diabetes care. I know that they are cheering me on every step of the way, even if they don’t have diabetes themselves.

I’ve also discovered the amazing Diabetes Online Community through blogging this year, who have come through for me in more ways than you would imagine. I can tweet something at 2am in the morning and instantly receive words of encouragement and advice. I have the wonderful Oz Diabetes Online Community who I can hang out with on Twitter every Tuesday night. I look forward to my coffee break every single morning, when I can sit back and check in with the Diabetes Online Community on Twitter.

I also have all of you who cheer me on through your support of this blog.

A year ago, I certainly felt very alone with my diabetes.

Finding emotional wellbeing has helped me to embrace it.

Type 1 Writes at the World Diabetes Congress!

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Last week at the World Diabetes Congress in Vancouver, psychologist Marisa Hilliard kindly quoted one of my blog posts in her presentation about prioritising emotional wellbeing from diabetes healthcare professionals.

One of my OzDOC friends Kim, who was at the conference, kindly tweeted one of Marisa’s presentation slides to me on Saturday morning.

My words sounded familiar, but I couldn’t put a mental finger to the exact post that this quote belonged to. I turned to Dr. Google, and who fetched for me a post from July titled “I Don’t Feel Like I’m Doing Enough.”

I have extremely mixed feelings towards this post. This was the very last post that I expected to be quoted. This post was extremely difficult for me to write. I wrote it on a day where I didn’t feel in a very good place with my diabetes management. It was one of my lowest points this year.

But after some deliberation, I decided that I am proud of this post. I’m proud of how transparent I was that day. I’m proud of how writing this post helped me to identify what I needed to find in order to manage my diabetes. I’m proud that I did share a vulnerable moment, because life with diabetes isn’t always smooth sailing. I’m proud of the fact that this post inspired a presentation advocating for emotional support towards people with diabetes.

Initially, I wanted to bury this post and forget about it.

Today, I proudly repost my words from July. (And tomorrow, I’ll weigh in on emotional support from diabetes healthcare professionals).

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.

Taking Words, and Actions, To Heart

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I’ve always been the kind of person who takes a lot of what others say to heart. And letting those little things get to me is sometimes my biggest downfall.

I woke up yesterday morning feeling pretty good. Things were getting back on track diabetes wise, I’d had a decent night’s sleep and I was ready to take on another day. I got to work, and it was all smiles and laughter with my work Mums as usual. “Dobro utrov, ca cosi?” Which is Macedonian for “good morning, how are you?” It’s one of the little perks that I love about getting to work in the morning.

But after I’d started work yesterday morning, there was one small comment that was enough to turn around my mood, and my day. What was said isn’t as important as the way in which it affected me. I hate how much I took that comment to heart. I hate my behaviour that followed that comment. My moodiness, my negativity, and my stubborn refusal to let that comment go through the morning. While it may have taken somebody else to make that comment, it was me who chose to let that comment ruin my day. And I hate myself for it.

And in a weird way, my attitude towards that situation yesterday kind of parallels my attitude towards diabetes. Every decision that I make has an impact on my diabetes. Every item of food that I eat. Every drink that I put in my mouth. Every place that I choose to visit. Every activity that I choose to do. I carry diabetes along with me, every step of the way. Whether I like it or not.

And it only takes one insulin dose. One finger prick. One really high blood sugar reading. One anger fuelled over correction. One weakening hypo. One handful of jellybeans. One small action is enough to throw my diabetes sideways, and turn my day upside down. It’s enough to make me angry. Teary. Emotional. Moody. It’s enough to make me beat myself up for hours. It’s enough to ride me with guilt for the rest of the day. It’s enough to make me lose my motivation.

I got some wise words of advice from some friends in the staff room later in the day. I know the real truth surrounding that comment, and I shouldn’t let anything else that’s said bother me. Let it in one ear, and out the other.

And I know the truth behind my diabetes management, also. I am living with an unpredictable disease. I am stepping into the shoes of a perfectly functioning pancreas, something which is not easy to do. I find incredible strength to step up to that task, each and every single day. I fulful this role to the best of my ability. It’s something that many others wouldn’t even be able to imagine doing. But I am only human. And I must forgive myself when things don’t go as planned, and take away the added wisdom for next time round.

I must learn not to take words, and actions, too much to heart.

Diabetes Pressures Without CGM Subsidies

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I was rather touched by an awesome type 1 Mum who spoke out about Continuous Glucose Monitors here in Australia on last night’s episode of Q and A.

Aussie Type 1 Mum Catherine asked Ken Wyatt, our Minister for Health, when Continuous Glucose Monitors would be subsidised by the Australian Government and hence bringing us into line with other countries.

She noted that the cost of a Continuous Glucose Monitor here in Australia was $5,000 per year, which was considerably less than the costs of looking after people with diabetes who are hospitalised. During a one week trial last year, a Continuous Glucose Monitor saved Catherine’s daughter in three instances where her blood glucose levels were dangerously low and could have resulted in hospitalisation.

Catherine told us that she checked her daughter’s blood glucose levels every two hours. She was often sleep deprived from managing her daughter’s type 1 diabetes throughout the night. Diabetes kept her awake for eight hours last week, in an instance where she was unable to get her daughter’s blood glucose to rise above 4mmol/L.

As a single parent, Catherine feels the financial pressures of type 1 diabetes. She cannot afford to work part time, or to stay at home with her daughter. A Continuous Glucose Monitor would allow Catherine to keep an eye on her daughter’s blood sugar levels remotely, and reduce a lot of the stress in her life.

As for the reponse given by the politician on the program, it was the typical response given by a politician. Wishy washy xtatements implying concern and high regard for the issue, but nothing committal.

I can relate to wanting to keep a close eye on blood glucose levels. I will test up to 10 times on most days, just to make sure I’m not having too many nasty hypos or being too high. There are nights where I so badly want to test in the middle of the night to make sure I don’t end up too high. And I often hate myself the next morning for succumbing to my exhaustion and not doing so when I see a high blood glucose level. And I don’t earn a lot of money, either. At the moment, a Continuous Glucose Monitor is a luxury that I simply cannot afford. When I’m paying the bill at the Chemist, I often think of all the other things that I would rather have spent that money on.

Catherine, you’re not alone. Thankyou for sharing your story, and for bringing this issue in front of our leaders, and the Australian public. Well done, type 1 Mum.

Diabetes and Vices

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Last Thursday morning, I finally willed myself to set the alarm for 4am and join in the Great Britain Diabetes Online Community Twitter Chat (#gbDOC). And I gotta say I wasn’t disappointed.

The topic was diabetes and vices. When I think of a vice, I instantly think of a bad habit. Something I use as an outlet to let off steam. Something that’s hard to break away from. Something that’s not good for me. So what is my main vice? Emotionally fuelled comfort eating. On a day where my diabetes management isn’t going well, my emotions take over my rational thinking. And I’ll eat. And eat. And eat.

The thing that fascinated me most was just how many other people’s vices were also food related. So why do I turn to food as my main vice? I think its a simple case of not being able to have those treats all the time with diabetes. It makes you want them more. Its like saying to a child ‘you can’t play with that toy.‘ They’ll end up wanting it more. They’ll chuck a tantrum. They’ll tell you they hate you. And they might even plan a rebellion to take it from you when you’re not watching. So bad blood sugar levels will give me the perfect excuse to turn towards those treats. Chocolate, potato chips, ice cream, lollies and biscuits. I’ll think to myself, ‘I’m trying so hard not to eat those foods and I’m still high – so what’s the point?’

Someone suggested that we weren’t being open enough about our non-food related vices. Well, that was an easy answer for me. Short answer: anger, shouting, slamming and punching. Long answer: read my post last week on Three Stages of Dealing With Hypo Grief (and trust me, its a good read!).

I think that if I didn’t have diabetes, my vices would be completely different (and perhaps not so food-related!) They might be things like drinking. Smoking. Gossiping. Swearing (well, I still do that sometimes…) But diabetes is such a big part of my life. I deal with it 24 hours a day, 7 days a week, 365 days of the year. I think about it when I wake up. When I’m at work. When I’m eating. When I’m sitting in front of the telly. Even when I stir in the middle of the night. So, naturally, I have vices against my diabetes rather than other aspects of my life.

And, if my blood sugar levels were perfect 100 per cent of the time, I don’t think I would have any vices at all!

Join the Great Britain Diabetes Online Community Twitter Chat every Wednesday night at 9pm (GMT+1) by following the #gbDOC hashtag on Twitter.