Pump Break II

My current pump break is surprisingly different to the one that I took a year ago.

At the time, I was feeling full of anxiety over all of the lows I was having from physical activity. I was still relatively new to insulin pumping, and felt a little overwhelmed at my failure to get everything right. I wasn’t missing my pump one bit, and if it weren’t for the Christmas smorgasbord around the corner I’m not sure that I would have ended up reconnecting.

This time round I’m feeling purely fatigued from the device that I’m using. I’m fatigued from being connected all of the time, and from staring at basal rates and insulin on board all of the time. I find myself getting a little slack with my management, and not getting the most out of my pump. I’m already missing the convenience after just a week, so I’m not confident how long this break will last.

I was deliberating over whether to start my pump break in the morning or evening. I’d read elsewhere that 1) morning would make it easier to monitor my blood sugar in those initial hours, and 2) the effects of Lantus tapering off at the 18-24 hour mark are felt the least. However, I’ve only ever known giving Lantus in the evening. I was also hesitant to have insulin tapering off in the early hours of the morning while I was experiencing dawn phenomenon. So, I stuck with dinner time.

I started with 10 units, the sum of my total daily basal given by my pump. That night, I had about two helpings of Skittles to ward my way out of lows. Residual rapid acting basal insulin from my pump was also very noticeable in those first few hours before bed, and I’d probably create some lag time between disconnecting my pump and giving Lantus if I were to do this again.

The following morning I woke up with terrible insulin resistance, which carried on through much of the day. In the morning it was obviously dawn phenomenon to blame, while in the afternoon my Lantus was likely tapering off.

On night two, I dialled my Lantus dose back to 9 units and added an injection of 3 units the following morning. The evening lows continued, and boy did those Lantus lows feel different. Heavier? Deeper? More intense? It’s hard to describe.

From there my evening Lantus dose went from 7 units to 5 units to 6 units, while my morning dose has remained at 3. That gives me a total daily dose of 9, which is pretty close to the 9.7 units I was giving via my pump. It seems to be keeping me fairly steady while I sleep, so I’m really pleased with that.

My biggest challenge is the moment I get out of bed in the morning. I’ve doubled my insulin to carb ratios at breakfast to combat the insulin resistance. Just don’t make my mistake of putting off brekky for 2 hours and still using double the insulin dose! For the remainder of the day, my regular carb ratio of 1:8 and correction factor of 1:2.6 seem to do their job as per normal.

I’ve been doing all of this blind, aka without the help of a FreeStyle Libre sensor, which means that I’m really feeling the brunt of the pricks on my fingers. BGs have probably suffered in the first week – Lantus was causing some lows in the beginning, while high blood sugars aren’t as easy to manage without a pump. However, I’m looking forward to seeing how this week treats me now that the dust has settled.

At the moment, I’m absolutely loving the freedom from attachment and not staring at my pump every hour. Bolus insulin also just seems to be “working” better. During those last few weeks on the pump, I definitely felt like I was correcting high blood sugars after meals all the time. Having the same kind of insuin for bolus and basal on the pump felt “blurry” at times, if that makes any sense at all.

When I made my decision to start pumping two years ago, I told myself that injections were too clunky and simply didn’t work for me. But after 18 months on an insulin pump, I know that this is not true. So long as I’m prepared to make the commitment to learn and take responsibility for my decisions, I can make any method of insulin delivery work for me.

How long do I think I will stay off the pump? I am missing it already. But I’d like to think I’ll give it until the end of the month, at least.

Diabetes Before 11am.

01:46 Frank stirs in his sleep. Glancing at the alarm clock, he reaches for his meter so that he can check his blood sugar. 10.1. He grabs his iPhone, opens the RapidCalc app and calculates a 2 unit correction to bring his blood sugar back down to 5.5. He reaches for his insulin pen, primes half a unit, then dials up another 2 units and sticks it into his arm. His diabuddies are starting to rub off on him…

07:21 Frank rouses once again. Morning light is streaming in from behind the closed vertical blinds. Feeling guilty that he slept over opportunities to follow up on that high blood sugar during the night, Frank reaches for his meter once again. He’s not feeling too hopeful. Blood sugar 11.9. Facepalm.

07:30 Frank opens the RapidCalc app on his iPhone, which reminds him that his 3 unit dose of Lantus insulin is overdue. It’s now been a week since Frank disconnected from his insulin pump, and he’s wondering whether it’s time to reconnect. While it’s been a great week, he’s really missing the customised basal rates and ease of correcting high blood sugars. Ah decisions, decisions.

07:43 After much deliberation over what to do, Frank ends up giving his 3 unit morning dose of Lantus. He opens up the RapidCalc app on his iPhone, and works out a five and a half unit dose of insulin. 2 units to cover his morning coffee. Double what he would normally give for 8g of carbohydrate, but necessary to cover morning insulin resistance that’s returned without his pump. The other three and a half units to bring his blood sugar back down to 5.5. Again, he primes half a unit and then injects five and a half units into his arm.

08:00 Frank finishes his morning coffee. Considering the high blood sugar, Frank decides against breakfast until his levels come down a little. Plus, he’s not feeling particularly hungry at this moment.

09:06 Too soon to test? Bugger it. Frank grabs a fresh test strip, sticks the test strip into his meter, pricks his finger with the lancing device and places blood on test strip. Blood sugar 9.4. Phew! Finally heading in the right direction.

10:00 Blood sugar 7.4. RapidCalc tells Frank he has 2 units of rapid acting insulin left to act. Should be okay.

10:34 Blood sugar 6.3. 1.2 units of rapid acting insulin left to act. Stomach rumbles. Oh – that’s right! Frank remembers that he hasn’t eaten breakfast yet. He heads into the kitchen, and opens and closes the fridge and cupboards. A slice of toast? Wait! What about the leftover croissants in his bag from Friday?

10:43 Opens the RapidCalc app on his iPhone, and calculates a 4 unit dose of insulin to cover the croissants. Primes half a unit of insulin from his pen, and then dials up 4 units. Sticks needle into his arm, but ouch! Blunt needle. Frank toughens up and sticks it into his arm once again, injecting the 4 units and carefully holding it there so that all of the insulin goes in.

10:50 With the criossants heating up in the microwave, Frank decides that he needs another coffee. It’s been one of those days. He heads back to his insulin pen and swaps out the blunt needle for a new one. Primes half a unit, dials up another unit to cover the coffee and injects it into his arm.

11:05 Frank is sitting in front of his computer, and satisfactory pre bolus time has elapsed. Frank decides that he needs to be a bit more disciplined with his pre bolusing to avoid stubborn high blood sugars like last night’s, and sticking with injections for another week will probably help him with that.

11:10 Frank decides he had better start eating those croissants before he goes low.

11.25 Frank thinks that this would make for the most boring blog post ever, and then decides that writing it in third person might make it a little less boring.

So many diabetes decisions before 11am! Time for a drink yet?

Pump Fatigue.

Not tonight, I thought to myself as I paced back and forth in my room on Thursday night.

It’s too late now anyway, reassuring myself of what I’d just decided against, knowing that I would be ready for bed in a little over an hour.

Friday evening rolled around, and I knew that I was ready to do this. But after a plate of Pasta for dinner, I knew I would need a combination bolus to cover it and decided against it.

Saturday evening rolled around, and I couldn’t think of a better day to finally do this. I grabbed a Lantus pen from the bar fridge, stuck a needle on, dialled up 10 units and injected it into my stomach.

I disconnected my insulin pump, ripped the infusion site from my stomach, and tried to remember the best way to tell my pump to stop screaming no insulin delivery every 5 minutes (answer: program an empty basal pattern).

I have grown tired of my pump in recent weeks.

The weather has quickly warmed up since November rolled around, and having a pump attached to me really adds to the discomfort while I’m sweating it out on a hot day. Which I’ve been doing a lot of lately, being under the pump at work and racing around like a lunatic all day. When my clothes are sticking to me, the last thing I need is an annoying pump line there too.

I can’t remember the last time I went for a walk in the afternoon where I didn’t think that I’d done more damage to my blood sugars than if I’d stayed at home. Pumped insulin is so much more sensitive than the injected kind. Yes, I know how to use temporary basal rates and consume carbs, but can’t a guy just go for a walk without it being some big orchestrated chaos? 

Infusion sites are beginning to feel like a real chore. They haven’t felt particularly comfy of late, and sometimes I can really feel the insulin sting on the way in. I find myself putting off changing a perfectly good site because I can’t be bothered dealing with a new one.

I guess my self care has also slipped in recent weeks. I haven’t been eating too well (translate: lots of trips down the chocolate aisle at Woolies), there’s been lots of slack guesstimates and my BGs haven’t been as great as they could be. I guess this lack of effort, combined with being overworked, has left me feeling exhausted at the end of the day. But I’m working on that. I also took it hard when I found out that I was unsuccessful at a job that I thought I would be perfect for.

At the moment, I don’t really want to be thinking about basal rates, insulin on board, infusion sites and the sense of urgency that comes with it all. I don’t need to be reminded of my diabetes every time I pull out my pump to deal with it.

I really think a change is what I need to clear my head and help me to feel a bit more excited about my diabetes management. Which sounds weird, I know, but doing the same thing every day feels absolutely monotonous. I’m also super grateful that I have the luxury of choices in my management, because not everyone in the world can afford insulin and basic supplies. Sidenote: check out T1International, who are working towards a world of #Insulin4All.

Also, I’m dying to go to the beach. Not that I can’t, but no pump sure does make it a hell of a lot easier…

Channeling My Inner Superhero.

I simply wasn’t feeling in the spirit of World Diabetes Day yesterday. I didn’t wear blue. I’m not doing the daily photo challenges like many of my Facebook friends are during November. I settled for a walk over OzDOC last night. I don’t think I’ll be jumping into the World Diabetes Day chat today, either.

I’m at a point where I’m struggling to identify with all of the smiles and positivity and we-can-be-superheroes posts that are flooding my social media feeds at the moment.

I’m not channeling my inner superhero at the moment. If anything, I feel like my cape weighs a tonne and it’s dragging me back down to earth.

I don’t feel like a superhero when I crawl into bed at night, feeling exhausted from the long day that’s gone by.

I don’t feel like a superhero when I haven’t had a spare moment to put my feet up all day, feel the fresh air on my face or sun on my skin.

I don’t feel like a superhero when I’m doing the same boring (but necessary) diabetes management tasks over and over again.

It’s not like I’m drowning. Or that I don’t feel like I’m able to manage. But when you throw everything else into the mix, I really feel just how hard this is. The physical and mental effort that diabetes management takes away from the rest of my life is huge.

I’m not sure burnout is the right word here. But I’ve been struggling a bit lately, trying to find somewhat of a balance between managing my diabetes, keeping up with all of the other commitments I have going on in my life, and having some time out for myself every day. I’m at a point now where I’m really thinking about what I want to commit to over the upcoming year, and where I would like to take a step back or even let go.

Self care is a pretty big priority for me while I’m managing my diabetes.

Without self care, I’m not able to channel my inner superhero as often as I’d like.

T1 Talk: World Diabetes Day Edition

Happy World Diabetes Day! What better way to mark the occasion than with another edition of T1 Talk?

What’s T1 Talk, you ask? It’s a series of conversations with Bec of Sweet and Sour Diabetes, which we started earlier this year to dissect some of the issues affecting young adults living with type 1. You can check out all of our previous instalments here. Today we’re chatting about all things diabetes awareness, with the first part of the chat here and the second part to follow on Bec’s blog here.

What does diabetes awareness mean to you?

Frank: Diabetes awareness is simply sharing about diabetes with those around me who aren’t aware of, or don’t have a connection to diabetes. It could be as unintentional as having to request a few hours off work to attend a clinic appointment, or as purposeful as writing a blog post for my Facebook friends to read on my diaversary.

Bec: I would agree with that. I started my blog in an effort to spread diabetes awareness. By that I mean, to stop those around me from saying unintentionally shallow and hurtful comments about my diabetes. It means education. It means understanding. Most importantly, it brings empathy.

Frank: While I’m really sorry that those around you were insensitive towards diabetes, can I just say how much I love your reasons for blogging? I didn’t really have much of a purpose behind blogging, it’s something that I guess formed a purpose over time.

How aware are those around you of your diabetes? How important do you feel that this is?

Frank: While I don’t make a big point of ‘raising awareness,’ I think that I’m pretty transparent about my diabetes around others. I pull out my pump without hesitation, I no longer walk out of the room to check my blood sugar, and I’ll talk about my diabetes if it helps to explain something. All of this has helped me to feel really comfortable with my condition and manage it in the best way that I can. I was always so self conscious about other people’s reactions to management activities, but in reality nobody even seems to notice!

Bec: I’m glad you’re seeing no one overly notices the management activities. I find that I’m now comfortable enough in my own skin to put that aside.
I would say the people around me are aware enough. They can help in a crisis, and they know I didn’t bring it on myself. It’s so important that my friends and family are aware from a safety perspective, but also from a support perspective. I manage it entirely independently, but it helps to know you have people in your corner who understand as best they can.

Frank: I think it’s great that you’re thinking about others being able to look out for you. I only tend to think about it if I’m going to be on my own for a while. I wear my Medical Alert bracelet, I’m well organised with backup supplies, and I prepare a bit of a travel plan with instructions if I’m unable to speak for myself. But not sure how well equipped people would be if I needed help. I’m still very independent with my management.

There are lots of causes and issues in the diabetes community that people feel strongly about. Is there one particular issue or cause that resonates with you?

Frank: The thing I feel most strongly about is helping people to find a good support network. I was living in relative isolation with my diabetes for many years, and peer support has really changed my outlook. There are endless places to find practical information and peer support online, whether it be through closed Facebook groups, Twitter, forums, blogs or websites.

While it was the last thing I would have wanted to do on diagnosis, connecting to other people with diabetes in person is just so worth it. There is nothing more uplifting that having a tribe of people like me who I can turn to when diabetes doesn’t play nicely. Or hearing the words “me too.”

Bec: Interesting how the causes we’ve come toward are the polar opposite of how we were at diagnosis. I really want to keep building my connections with other people with diabetes in person. I don’t have that support base yet, but I certainly have people around online.

Frank: Well, you did say that you were too busy to come along to Melbourne earlier this year…In all seriousness, it’s not an easy thing to do. I was lucky in the sense that I joined a committee of young adults with diabetes and some great friendships resulted from there.

Bec: I suppose I have two main causes I strongly advocate for: accessibility of resources and mental wellbeing.

Continuous glucose monitoring is new in my diabetes management, and I have been part of the campaign for years to have it subsidised by the government. I’ve written to my members, written blog posts and shared my story time and time again. Recently the government have begun to subsidise CGM for people under 21. It’s a start, but it’s not good enough. I need a CGM just as much as a 20 year old. But I’m over the age limit, so suddenly it’s cut off and I need to spend an enormous amount of my own money to afford the upkeep. I’m lucky my family pitched in for half for my 21st birthday.

Mental wellbeing is a newer cause on the diabetes agenda for me. I never dreamed in a million years I would be advocating for improved mental health and awareness of mental illness, let alone sharing my own stories. I really didn’t talk about that stuff and was basically dragged to a psychologist as a teen. Diabetes (of all types) and mental health are so inherently linked and I feel that sharing our stories takes away a lot of the stigma around it. I don’t like my anxiety and depression, but I think I’ve come to accept it and have made gains over the years. I guess at times I do feel some shame around them, but I’m getting there. There’s more to me than my anxiety though. That I do know.

Frank: I wouldn’t have guessed that mental wellbeing was one of your newer causes. I have this running joke about one trick ponies with a few other diabetes bloggers, and I’d say that mental health is yours! In a good way, of course. I definitely agree with you, it’s something that I’ve come to acknowledge and prioritise in my diabetes management over time.

As for CGMs? I’ve used the FreeStyle Libre, and I love the additional data insight. Yes, I could probably pay for a CGM if I really wanted one. But I just can’t justify those kinds of costs with the other financial goals I’m working towards at the moment.

The second part of this conversation continues over on Bec’s blog here.