I’ve been thinking a lot about diabetes burnout lately. A lot.
I have been burnt out for a long time now – it’s been 18 months. I can see how it started – I know the trigger. I miscarried in terrible circumstances and, after the constant monitoring and intense management that comes with trying to get pregnant and then conceiving, losing the baby allowed me to ‘take a break’.
I’ve not come back from that break.
My question is this: When does it stop being ‘diabetes burnout’ and become something more? And what is the ‘more’?
We use the term burnout so much in diabetes; I feel that I’ve become a little desensitised. It’s the norm – most people go through periods where they are so unmotivated that they can’t deal with their diabetes, or pay less attention than they typically would. But how long is ‘normal’? How long can we go on like this?
My burnout is scaring me because it has been going on for so long. I fear I’ll never get my mojo back and actually get to a point where I am able to care for my diabetes in a capable way.
I go through periods of so few BGL tests that my meter resets itself. I have not seen my endo for far too long and I’m way behind in my complications screening. The only thing I am up to date with is eye screening because I had cataract surgery in the last twelve months.
A button on my pump has been playing up for over 3 months – half the time taking three or four attempts to get it to work – and instead of getting straight on the phone to the company’s customer service team and organising a replacement, I let it slide until Monday, when I realised that next week I am getting on a plane and going away for 6 weeks and if I don’t get it sorted I’ll end up with a dead pump while overseas.
I’m taking my insulin, although haven’t basal tested for a long while and know that the rates need adjusting. I ‘blind bolus’ a lot of the time. Wearing a CGM is useful because it gives me an idea of my glucose levels, but I don’t actually do anything constructive with the data I am receiving.
I keep in touch with the online community which is my link to seeing and hearing how others are coping. While I don’t participate in every week’s OzDOC chat, when I do get there I feel supported and know that I have people to turn to if I need them. I guess I’m not completely disengaged.
A nasty hypo often gives me a shock and I get a few days of decent and frequent monitoring out of it, but this is short-lived and I fall back into minimal self-care pretty quickly.
And I feel totally and completely shit about the whole thing. And guilty. Of course I feel guilty.
In a couple of years of some pretty difficult stuff, diabetes is the thing that I can let go of. At least, I feel I can. I mean, I can’t stop being a mum. I can’t stop being a wife, daughter, sister, friend. I can’t stop coming to work. I can’t stop doing the things I need to do to be a functioning human. But I can stop with the self-care.
And because I am an idiot, or in denial, or just plain over it, I can’t see just how short-sighted this thinking is. I may be getting through the day and doing all those things that I tell myself I can’t stop doing. But how is all that going to work if something actually does happen as a result of my minimal self-care?
I honestly don’t know where to go from here. I feel paralysed and unable to make decisions that I know may help me start with some baby steps to get back on track. Is it a matter of re-engaging with my HCPs and talking to them for strategies? Do I try to set myself tiny goals, like a morning BGL check each day – or even every second day – that is achievable and will start to give me some data to work with? Do I go back to seeing a psychologist again and discuss ways to get back on track?
I don’t know.
It all seems too exhausting. It all seems too damn hard.
Is this burnout? Or is it something more?
I really don’t know.
This isn’t really a Christmas song, but I still think it’s a good song for this time of year. The wonderfully gorgeous Joni Mitchell and River.
37 comments
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December 10, 2014 at 11:53 am
Scott Strange
Renza, I completely understand and I’m just now coming off of several months of the same feelings. So many things needed attention and it was paralyzing. So many important things that I simply could not decide, the slightest extra demand made me react with anger to the chaos that my life had become, there was nothing within my control. That’s a dangerous place for me, self-harm is seductive when the harm is the only thing that you have absolute control over. I was finally able to focus a bit on what I was doing right now. What I chose to focus on was within my control, it was my choice. Focusing on that choice let me hide from the chaos. It let me remember that caring for myself is important.
My friend, this is a brave post and I hope you can find a little focus for yourself
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December 10, 2014 at 11:55 am
RenzaS
Thanks for your comment, Scott, and for sharing your story. I am glad that you have been able to get some focus back and I will really try to remember about ‘what is in my control’. Thanks again.
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December 10, 2014 at 12:07 pm
Tony
Whilst not as long it has been a few months for me since I’ve even bothered to take my metformin.
This is my first so I can’t even tell you what works for me, I am trying an EP to get fitter hoping that motivates me.
If you can’t muster the desire to get to your HCP’s maybe talk to your partner and he can make you angry enough to go. ☺
If you need to yell at someone I’m available.
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December 11, 2014 at 1:14 pm
RenzaS
Thanks for the offer, Tony! I’m sorry to hear that you have been having a tough time too. Good luck with the EP – hope that it works. Thank you for reading and sharing your story.
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December 10, 2014 at 12:42 pm
Kate
Renza, I am new to diabetogenic and relatively new to T1D, having been diagnosed a little over 2 years ago. So, forgive the unsolicited advice from a novice. Start small. If reconnecting with your HCP is too much (you probably know as much as them anyway), do one small positive thing for yourself and your health. One bgl test a day, maybe. And don’t beat yourself up over the result. It is just feedback. Information you can use to make decisions. The partner idea is a good one, but I would tap your daughter. Kids love routine and they don’t judge. She could help you to test every morning and keep a log for you. When I was diagnosed, it was my then 13 year old daughter who lifted me out of my state of denial and despair. She spent hours researching diabetes on the Internet and made me a book of all sorts of strategies and good ideas and made me realize that I could be positive and in control, at least as in control as I was of any other part of my life! Next to me, she is the one in the family who is the most knowledgable and interested. The fear of those “complications” keeps me testing and controlling my diet and exercising, but my real motivator is wanting to be around to see my daughter grow into an adult and watch all that she does with her life. THAT is really what keeps me going. I love your blog, by the way. I look forward to reading it and I find it is doing me a world of good. So, thank you.
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December 11, 2014 at 1:15 pm
RenzaS
Thanks for your comment, Kate, and your kind words about Diabetogenic. Your daughter sounds like an absolute gem.
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December 10, 2014 at 1:03 pm
KAT
Renza, no advice from me (the mum of a type 1) just sending you a cyber hug xx and know that Im sure your frank writing helps others and enable them to talk about things that sometimes just aren’t discussed – I do know and understand the feelings of loss, some say time helps? not sure about that one? There is always light at the end of any tunnel xx
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December 11, 2014 at 1:16 pm
RenzaS
Thank you, Kat. I really appreciate you taking the time to comment. And thanks for the cyper hug – most gratefully received!
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December 10, 2014 at 1:44 pm
ragingyoghurt
I’m sorry you feel this way, lady! I recognise some of what you say in my day-to-day, and yes, it sucks! There’s always a cup of tea here for you, when you have time or inclination.
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December 11, 2014 at 1:17 pm
RenzaS
Love you! And there will be much tea drinking in the New Year. By the way – the offer stands from me too! Our little munchkins are more than capable of entertaining themselves whilst we tea and talk. x
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December 10, 2014 at 3:15 pm
mairi-anne
Diabetes came into my life via my daughter 6 years ago – she was dx at 10yrs…. she feels this way every day. She talks to a counsellor weekly but nothing seems to help. No advice, strategies or vision boards help. I think T1 is a relentless no escape medical condition – she thinks about T1 all day EVERY day. It breaks my heart and there is nothing I can do – she is in such a dark place medically and emotionally the hole seems to deep and she cant climb out. THIS is part of T1 that no one understands. She too cant just “stop” but she cant move forward or back she too is paralysed. What can I do?
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December 11, 2014 at 1:19 pm
RenzaS
Mairi-Anne – thank you for your message. I am so sorry that your daughter is finding it so tough – the teen years are difficult enough without adding diabetes to the mix. I wish I had answers for you, I really do. But I know that she appreciates – and needs – your support, even if she is unable to tell you. You have no idea how incredibly wonderful having loved ones around is during the difficult times.
I also just want to say that I hope that you are getting some help and support for yourself. Because that is really important too.
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December 10, 2014 at 5:15 pm
Cindy Reed
Renza you are a great support to so many and now you need support to get you through. You have an amazing family who want you here for a long time. It’s ok to have bad days 37 years for me and while l am very healthy l have days where it is hard but use my amazing family to keep on track. It is not shameful to get professional help you are such a help yourself to so many diabetics with your great and truthful stories. You often bring a laugh to me on a bad day cos you say what l am thinking. Look after yourself .
Cindy
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December 11, 2014 at 1:20 pm
RenzaS
Thank you for your lovely comment, Cindy. I love hearing from you – and about how you have lived with diabetes for 37 years!. Thank you for reading.
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December 10, 2014 at 5:20 pm
Andrea
Hugs, Renza. I’ve been there too.
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December 11, 2014 at 1:20 pm
RenzaS
Thanks, Andrea. x
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December 10, 2014 at 6:06 pm
cdlefevre85
Long time reader, first time commenter. I am just coming back from a bout of this myself. For me it was so many things bunched up into one emotional mess that it was impossible to know where to start, like untangling a ball of yarn. I’ve dealt with depression on and off for years but never to the point where it was making normal life debilitating. For me reaching out to a professional to give me ways to cope and a place to start was huge. Hang in there, I hope things look up soon!
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December 11, 2014 at 1:21 pm
RenzaS
Thanks for reading and thanks for commenting. The ball of yarn anaology is just so damn perfect – it’s exactly how I feel. I’m sorry you’ve also been having a rough time and am so glad you found a way to help. Good luck with it all. Thanks again.
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December 11, 2014 at 12:08 am
Kirsten
Renza – you are not an idiot, and you are not in denial – you are just living the reality of an unrelenting condition that never lets you have a single second off. I am in ‘half-burnout’ at the moment – I’m still keeping up with appointments, mainly out of guilt, and I do all the right things, but I just don’t really care about it all at the moment. I’ve had a crap year and D is just one of those things that becomes less of a priority amongst all the other battles. You can’t be everything to everyone, even sometimes to yourself. Hopefully over the holidays you will manage to find some rest and relaxation. Hang in there!
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December 11, 2014 at 1:22 pm
RenzaS
Thanks, Kirsten. I know exactly how you feel. I need to find a way to make diabetes a priority again and I really to think – and hope – that a break from the day to day will help with that. Good luck to you – come back and tell me how you are going.
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December 11, 2014 at 2:50 am
kelly2k
Renza –
I’ve been where are and I wish I could reach through the computer and hug you tight.
You are not an idiot or in denial, the fact that you’re expressing your struggles and concerns shows that you brave and honest and incredibly aware.
When I’ve been in the place where you are now, I’ve found that talking to a therapist really helps – Not just with diabetes, burnout, depression and the feelings of being stuck and paralyzed, but with life.
Looking forward to hugging and talking with you in real life VERY soon.
Xoxo
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December 11, 2014 at 1:23 pm
RenzaS
Thanks for the comment, Kelly. I’ll be in touch as soon as I get to NYC (and find myself a doughnut) and we can get busy with the important job of finding a time to catch up and have this discussion face to face. Much love to you. Rx
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December 11, 2014 at 11:12 pm
Rosie Walker
whatever it is called, it doesn’t sound like a good place. What would you say to someone else who said what you wrote – which is moving and brave, I agree? You are where you are, you feel what you feel, and that is absolutely fine, no need to fight it 🙂 who could you talk to or what could you do to look at things anew? hoping your break is a seasonal one and some r and r to start with and also sending cyber hugs – reusable at any time, I always say!! take care xxx
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December 13, 2014 at 12:16 am
RenzaS
Thank you for your comment and cyber hugs, Rosie. Both are greatly appreciated.
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December 12, 2014 at 12:48 pm
Scott E
Renza, I don’t really know what to tell you, except that I see you as a leader in this community and your posts exude a sense of confidence in their honesty and authenticity. This post is no exception. Don’t underestimate yourself, and don’t think you can only do today as well as you did yesterday. I have all the confidence in the world in you.
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December 13, 2014 at 12:17 am
RenzaS
What a beautiful comment, Scott. Thank you so much for your kindness.
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December 13, 2014 at 1:48 am
kate
I went through the whole of uni like this, in denial and some of my 20s. Its impossible to be on top of it all the time. Don’t feel guilty. I don’t know what the answer is, but I work at a big public hospital and daily see people doing it tougher than me and with terminal illnesses etc. It helps give me perspective. If we were born in another time or place we might not be here at all and that is enough to celebrate.
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December 13, 2014 at 9:07 pm
insulinjunkee
❤️❤️❤️
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December 13, 2014 at 6:33 pm
insulinjunkee
I think this is something we ALL go through. I think the important thing to keep in mind is the consequences that neglect can do on our bodies. It can be easy the let diabetes get “out of sight and out of mind.” You will thank yourself later for doing everything you can to be as healthy as possible for you and your family.
When I feel burnt out from my diabetes I try to do things that hold me accountable and keep me motivated. I will keep a small journal and track all my blood sugars or I will set small goals and reward myself when I reach them. Any of the ideas you suggested like reaching out to a therapist or taking baby steps are great ways to start. It is also a BIG guilt relief when you know you are taking care of yourself!
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December 17, 2014 at 6:00 pm
Lana
You want advice, kid? You want MY advice?! Well, here goes… I think anyone who’s been diagnosed with diabetes (especially type 1) needs to have her uterus removed because she plain can’t be trusted around a penis! I know I come off angry, because I suppose I am! I think it’s rather selfish of sick people to try to get pregnant when there’s the slightest chance you’ll pass this same shit you’re living on to your own flesh and blood. Think about it, you’re a (semi)mature adult and look at the shit you have to go through every day and see what it does to you? If you can’t handle the day-to-day of diabetes, how dare you even think to pass this shit on to your own child! You know damn well your child will get it, it’s just a matter of time. I dare you to name me one diabetic on this fucking planet who DID NOT pass it on to her child. Is this the reality you want for your child? Are you serious?! You better than your lucky stars you miscarried missy! It’s better to never be born than living with diabetes–a life sentence! I have type 1 diabetes, I’ve had it for 15 years. I never get burnout. Granted, I didn’t really do a very good job of managing my diabetes the first six years–and guess what? It landed me in ICU with DKA twice in the same year, just months apart! I’m lucky to be alive–or so they tell me! And yet, I don’t have burnout, I think people throw that term around too quickly. It’s not burnout, it’s plain laziness is what it is! I was too lazy to care and now I have some of the worst complications you can imagine. I am literally burning in hell 24 hours a day, 7 days a week, for the rest of my life, there’s no end in sight! And there’s no relief. It takes a great deal of discipline to be a diabetic. There’s no room for burnout, my dear! It’s do or die; life is not a dress rehearsal–it’s the damn show! You can talk burnout all you want but wait till you feel the real BURN-out, wait till your nerves die, not just your feet, but over your entire body and wait till it burns! It’s as if I’ve been set on fire and there’s no fucking extinguisher! And don’t talk to me about meds–I took those meds, they nearly killed me! They’ll kill you too! People don’t understand the realness and severity of diabetes, not even those who’ve had it for decades! If you even think about getting pregnant you DON’T know diabetes! How anyone would do this to their own flesh and blood, OMG! It’s beyond me! People protect their children from lesser things; people make sure their children eat well, get exercise and get an education, yet when it comes to a deadly disease, they just don’t give a damn! Let me tell you right here and right now–you should be shot, SHOT! for even for one split second thinking about getting pregnant and giving this bitch of a disease to your child! Let me put it to you this way: if you knew for a fact that there was a 25% chance your child would die a horrible death if you gave him (for argument’s sake) milk — would you do it? I bet you wouldn’t feed your child anything with the potential (even if slight) to kill him. Then why, if you know for a fact and with the epidemic that’s going on now, there’s a 25% risk you’ll pass diabetes on to your child (if not today, eventually, rest assured, it’s coming!) would you even THINK about getting pregnant?! Can you be sure your child will never put a cookie or potato chip in his mouth? Can you be sure he won’t be born with complications? Can you be sure you won’t miscarry (as you have already)? You know the risks and yet you want to have a baby and give this fucking disease to him, anyway! What kind of a mom-ster are you?! Burnout schmurnout! Be happy you miscarried (as cruel as that sounds) because quite frankly, if losing a pregnancy is killing you now, wait till your child is diagnosed with diabetes — you’ll want to die for giving it to him. You just remember these words the next time your husband forgets to buy condoms!
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December 19, 2014 at 6:35 am
Ginger
Dear Lana — your lack of human compassion and human heart is mind-boggling, let alone your incredibly inaccurate assumptions around pregnancy, diabetes, and health risks.
RENZA: you are beautifully courageous for sharing your burnout story here and for facing everything you’ve endured recently.
Sending all my love to you and your family!
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December 18, 2014 at 4:50 pm
jojowat
Oh dear Lana… you are sad, deluded, ignorant and just plain wrong.
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December 21, 2014 at 12:35 am
BAD Hatty
Fifty-two years old, forty-seven years diabetic, one adult child (30 years) who does NOT have diabetes. EXTREMELY slack self-management, lowest AC1 ever was 8.1, got a pump a week ago and am now BAD (born- again diabetic. Lana’s obviously having a Regan-hypo. You’ll be OK, love. I think you should focus less on the BSs and more on exercise. Do something really, really energetic that you love. Exercise counteracts the inflammation caused by high BSs. I am pretty well convinced that it has saved me from complications for nearly fifty years in spite of my s¥£€% control. And it’s dead good for your mood. When your mood improves you can back on top of your BSs. Mood first, maintenance after.
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December 31, 2014 at 12:20 am
Joe Bearnickel
I figured one troll would show up in the comments and I was correct.
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January 3, 2015 at 8:45 am
Erik
Thank you for sharing, Renza. I also went through a burnout for a couple of years. Thankfully I snapped out of it and am doing much better. It is a hard disease to manage.
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August 22, 2015 at 11:51 am
Katie
Just stumbled upon your blog – thank you. Thank you so much. Burn-out is not fun and I think it’s hard for friends to appreciate the guilt and recognition that I’m not doing right by my body that comes with it. It’s uplifting to know it’s not just me.
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August 31, 2015 at 8:56 pm
RenzaS
Thanks Katie. Please check back in!
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