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.

What Does Diabetes FEEL Like?

It feels incredibly permanent. It’s only been with me for the past seven and a half years, and yet I struggle to remember a life without it.

It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.

It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.

It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.

It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.

It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.

It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.

It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.

It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.

It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.

It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.

It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.

It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.

It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.

It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.

It also feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.

A Letter to My Newly Diagnosed Self

Dear Frank,

If you’re reading this, then I can only assume that you’re coming to terms with a new diabetes diagnosis.

I know that right now, you’re probably just happy to be feeling well again. You’re reluctant to show any visible signs of your condition, convinced that diabetes hasn’t changed you. But it has.

Diabetes does make you different, and that’s not necessarily a bad thing. The sooner you come to accept this, the easier it will be for you to manage both physically and mentally. Speaking of, did I mention just how much of a physical and mental effort diabetes can be? Don’t forget to give yourself some credit for this when you’re having a tough day.

This is your baby. The decisions you make around managing your diabetes are yours and yours alone. Don’t ever feel guilty for them. How much you decide to involve others in your diabetes and management decisions is up to you. That being said, don’t be afraid to lean on those around you. They will more than likely surprise you. You will feel far less isolated and much better supported.

This is about you, and you alone. People you speak with will want to jump in and give you their two cents worth. Ignore it. What your great aunt’s-brother’s-second cousin did to manage their diabetes certainly won’t hold any relevance to you. You’ll likely look at other people with diabetes and try to draw comparisons to what they’re doing or how they’re managing. It’s not worth it. Everyone is different. You’re on your own unique journey, and the way in which you manage your diabetes is completely up to you.

Don’t be afraid of the internet. You’ll find endless amounts of practical information here that you won’t necessarily receive from your doctor. Best of all, the majority of it comes from the community, for the community.

The internet is also a great place for peer support. There are plenty of friendly folk from all over the world online who are in, or have been in your shoes. They are accessible day and night. Best of all, you’ll get to experience this sense of community that will help you not to feel so isolated or alone in this.

I know that connecting to other people with diabetes in person is probably the last thing that you want to do right now, but let me tell you that it is just so worth it. There is nothing more uplifting than having a tribe of people who you can turn to when diabetes doesn’t play nicely. Or hearing the words “me too.”

Speak up in front of your healthcare professionals. Your diabetes team are busy people, and they will likely be pressed for time. Make it clear what you want from them. Use them to get what you need to live the best life you can. If they won’t support you, find a new team that will.

Everything and anything affects diabetes. Food. Activity levels. Stress. Hormones. Routine. Even sleep! It’s impossible to achieve perfection. You can have days where you feel you’ve done everything by the book, where you’ve done exactly the same thing you did yesterday, and still receive a completely wild result. Don’t beat yourself up over it. You can only do the best you can, while trying to live your life. Diabetes is 100% something that you fit into your life, and not the other way around.

You will have bad days. You will slip up. You will get burned out. You will go through a rollercoaster of emotions. I’d be surprised if you didn’t! It’s part and parcel of living with the condition, day in and day out. But you will get over it. You will come out the other end stronger, and more resilient.

Your biggest assets in the long term management of this condition are time and experience. With time and experience, you learn. You are always learning!

Diabetes does indeed make you different, but I can honestly say that it won’t stop you from living your life and achieving what you’d like to achieve.

With every passing day, you will be a little wiser and better equipped to live with this condition.

 

 

 

 

 

 

 

 

 

Diabetes Daily are running a series of ‘dear diagnosis’ letters during November. If you have your own letter that you would like to share, e-mail editor@diabetesdaily.com.