Sometimes, I feel like I don’t ever get a break from diabetes.
Obviously, the nature of diabetes itself is 24/7/365 – it doesn’t have an on/off button and requires constant monitoring.
But there’s also the fact that my full-time job is working for a diabetes non-profit.
Also also the fact that I have two very near and dear family members (and many friends, to boot) who also live with diabetes; naturally, it comes up in conversation all the time.
Also also also! I have this little blog you may have heard of called Hugging the Cactus…where I write about my life with diabetes a couple days each week.
So not only am I living with diabetes, but I’ve also forged a career in the diabetes sector, a hobby writing about it, and countless relationships built from shared experiences with it.
And it’s a lot.
Since there is so much diabetes so much of the time, it’s incredibly important to find a balance…a way to shut my brain off from it all, even if it’s only for short periods of time. I’ve had mixed success accomplishing this in the last year. Making plans with family and friends, joining a volleyball team, immersing myself in RP games, playing with my dog, and doing small acts of self-care have helped, but it’s not always enough.
I’m recognizing this as I write this blog post, and taking a moment to appreciate the mental time and energy that goes into maintaining this balancing act. Just as it’s easier to do on some days, it’s also totally much harder on others – and that’s valid. And it’s a gentle reminder to anyone else who can relate to this that your feelings on it are legitimate, too, and that you aren’t alone.
“I’m just…tired. Maybe I’ve been going through burnout these last couple of months and I didn’t even realize it until just now,” I said, sinking back into my chair.
I was at a virtual appointment with my therapist when I uttered these words, surprising myself because the thought that I’ve been experiencing burnout hadn’t occurred to me previously. But the moment I said it out loud, I knew it was true.
It just makes sense. It explains some of my more turbulent blood sugar levels as of late. It explains my frustration, lack of interest, and utter annoyance that I feel every time I check my blood sugar levels or calculate carbohydrates for yet another dose of insulin. And it definitely explains why yes, I have indeed been tired lately – more often than I’d like to admit, I’ve had to get up in the middle of the night to treat a low or correct a high, so naturally, my sleep is presently fitful at best.
I guess I didn’t connect the dots right away because I was in denial. I still talk about my diabetes all the time. I’m still able to show up and perform at my full-time job at a diabetes non-profit. I still take insulin for all of my meals, just maybe not the right amounts all the time. So because I was “still doing” all the normal aspects of my diabetes management routine, I assumed that I wouldn’t fall victim to another round of burnout.
But this is when I remind myself that burnout doesn’t always look the same. Burnout can mean wanting/choosing not to take insulin, paying less attention to blood sugars (if any at all), feeling cranky about all things related to diabetes, or even being depressed or flat-out tired when just thinking about diabetes. And there’s probably other ways that burnout can manifest itself that I haven’t even experienced yet, even though I’ve lived with diabetes for 24 years.
With that last point in mind, in particular – the length of time I’ve lived with diabetes – it’s no damn wonder that I’m tired. And it’s okay for me to feel this way. I’ll just ride the burnout wave as long as it happens to last this time around, and check in with myself (and absolutely my therapist) as often as needed.
So many emotions accompany living with type 1 diabetes: occasional sadness, some anger, a bit of bitterness, flares of acceptance, and a whole lot of frustration.
But another emotion that comes with it that I recently found myself thinking about (and feeling) is guilt. Not guilt over the fact that I have diabetes, per se – because my diagnosis was out of my control – but guilt over the ways that it affects those around me.
I feel guilty for all the times my devices’ alerts and alarms disrupt my partner’s sleep.
I feel guilty for complaining to family and friends about my diabetes because they don’t deserve to be burdened by it.
I feel guilty when I have to leave a social event early because I forgot to bring back-up supplies with me or because I experienced a device failure.
I feel guilty when a high blood sugar makes me lash out at my loved ones…and when a low blood sugar causes them to be worried about me.
This guilt weighs heavy on my shoulders, and when coupled with the guilt I carry around when I have a bad diabetes day or let my emotions about diabetes get to the best of me, it can sometimes feel like I’ll collapse at any second because I’m simply not strong enough to handle it. Of course, I don’t feel crushed by the weight of guilt all the time; in fact, it’s only occasional. But when it does rear its ugly head, it’s not fun, and it makes it that much harder to deal with the day-to-day of diabetes.
The reason why I chose to write this blog post about guilt and diabetes is to bring awareness that living with diabetes is so much more than daily insulin injections and blood sugar checks. It also means coming to terms with the fact that it’ll cause a lot of discomfort, both physically and emotionally – and finding out ways to overcome that discomfort, and the emotions of diabetes (guilt included), is what makes people who live with diabetes absolute warriors in my eyes.
“Get comfortable being uncomfortable” is a phrase I first grew familiar with when I developed a more serious workout regimen a few years ago.
My daily exercise usually consists of walking my dog, then spending 30-45 minutes completing a workout video of some sort. While these workouts vary in terms of exercise type, one thing remains consistent among them all…and that is the ferocity of the trainers, who besides showing me proper form and technique, also do their part by shouting motivational phrases as I sweat.
“It doesn’t get easier, you just get stronger!”, “You don’t wish for it, you have to work for it!”, and of course, part of the title of this blog post…”Get comfortable being uncomfortable!”
During a particularly challenging workout, that saying stuck out to me. Suddenly, it was dawning on me that this was an extremely good way of summing up life with diabetes. After all, nobody asks for diabetes to happen to them – it just does, and it’s up to people with diabetes and their care teams (loved ones, healthcare providers, and so forth) to accept it and adapt to it.
And let’s be real here: There’s nothing comfortable about diabetes. In fact, there’s a lot of uncomfortable things about it. Constant pokes and prods from sharp needles, interrupted nights of sleep, gadgets that alarm at inopportune and sometimes awkward times…and these are just a few of the things that keep me and other people living with diabetes walking on a tightrope at times.
Despite the often-disagreeable ways of diabetes, it’s important that those of us who live with it find comfort in embracing it for what it is. We can’t change diabetes itself, but we do have the power to change how we perceive life with it. So while diabetes has the ability to make me physically uncomfortable (and frustrated, sad, annoyed, anxious…a whole laundry list of emotions), it’s on me to get comfortable with these feelings and live my best life in spite of them. And like exercise, though it can be an exhausting, challenging, and the very last thing I might want to do sometimes, it’s also something that benefits my body and mind in the moment and in the long run. Why not think about diabetes in the same way, or even move past comfortability with it and into embracing it?
At this point in my diabetes journey, I think I’m mostly there…and therefore happy to say that I am comfortable being uncomfortable.
For me, my type 1 diabetes, anxiety, and the phrase “what if” go hand-in-hand. Or maybe in this case, it should be sweaty-nervous-palm in sweaty-nervous-palm.
In the past, I’ve written about how I believe there is a direct connection between the way my anxiety manifests itself and my diabetes. There’s no denying that the two are related. But another thing that ties the two together in a neat, worried package are these two simple words…”what” and “if”.
Of course, those two words are often followed by a series of other words that turns everything into a full question that is born from my anxiety. The questions all follow the same formula: What if X, Y, or Z happens? Questioning whether something will or will not happen will inevitably trigger me to convince myself that a less-than-desirable scenario will occur, leading me to slowly spiral as I ponder how I can possibly handle said less-than-desirable scenario.
Not following me here? I’ll give you an example. Take my incident last week when I mistakenly gave myself 10x more insulin than I intended to take (10 units versus 1 unit). When I was processing the gravity of that mistake, I asked myself, “What if I’d given myself 100 units? What if I’d been alone when all this happened?”, causing me to think about how much more dire that situation would’ve been and sending chills down my spine. It’s not fun to go down a path like that, yet for much of my life I’ve forced myself to face many “what if” scenarios that have never even happened because my anxiety lead me to that line of thinking.
After 24 years of T1D, though, and living all of my years with anxiety paralyzing me every now and then, I’m trying harder to challenge the “what ifs” and stop allowing them to rule my life, not just my perception of my diabetes.
I guess this is my public declaration, or vow, or affirmation, or whatever you’d like to call it that I want to be better about knocking those “what ifs” out of my way when I feel as though T1D or my anxiety are limiting me. I’m hoping to stop thinking about diabetes as a condition in which I’m held back by “what if” scenarios or one that aggravates my anxiety; instead, I want to have it be more autonomous and separate it from the negative thinking that all too often interferes with my everyday life. I’m just tired of thinking about diabetes with a “worst-case” mindset, so what if…what if I take back control of the “what if” and say “what if I have a really great diabetes day today? or “what if I know more about managing diabetes than I previously thought I did?”
Changing the overall tone of those what ifs sounds like hard work, but it also sounds like worthwhile work. So I’m challenging myself to do it, stick to it, and think…what if I could change how I feel about my diabetes and anxiety, and grow to love them for how they’ve made me stronger, more independent, and brave?
I wrote a version of this post on November 20, 2019. I wanted to revise it and share it today because, as we approach a week in which we recognize gratitude for our loved ones, I want to express how grateful I am for the people in my life right now who support me throughout the highs, lows, and everything in between that comes with life with diabetes.
Emotional support is a lovely thing. It feels good to have people in your life who you feel have your back. And it’s twice as nice to have when you’re dealing with a chronic illness like diabetes.
I talk extensively about diabetes and support in the most recent episode of the podcast, Ask Me About My Type 1. (Here’s the link in case you haven’t listened to it yet.) Rather than rehash everything I said in that episode, I’m going to use this post as an opportunity to reflect how my wants and needs in terms of support for my diabetes have changed over the years.
It’s interesting (at least, it is to me) to think about how and why my desire for support has changed as I’ve grown older. My childhood was very normal despite diabetes. It was always there and it was always a thing I had to deal with, but I definitely didn’t feel compelled to talk about it as much as I do now, let alone lean on others in difficult times. Why is that?
I think it has a lot to do with getting to know myself better as I’ve aged.
After all, they say that with age comes wisdom. And though I don’t exactly consider myself a wise old sage or anything of the sort, I do think that I’ve acquired some enlightenment about myself and the way that I process things in my adulthood.
Specifically, I realized in the last few years that diabetes has instilled in me a strong desire to feel in control of every aspect of my life…not just diabetes. When something doesn’t go according to whatever carefully thought-out plan I’ve cooked up, I get upset. And I tend to either bottle up my dismay, which is never a good thing to do, or I totally take it out on the whichever poor soul happens to be within my vicinity, which isn’t fair. Neither of those reactions is a healthy method of dealing with things, but at least I’m aware of that and I’m actively trying to improve how I cope.
I think that this example shows how important diabetes support has become to me because I’m able to lean on others in those times that all of my diabetes plans don’t work out the way I envisioned them. I’ve figured out, over time, that it’s just about the only thing that really works for me. Talking to other people with diabetes (and without diabetes) about struggles that I’ve faced makes me feel less alone. It used to be scary for me to be so vulnerable with others, but I’ve found that it’s worth it because it helps me heal, move on, and forgive/accept myself for feeling whatever I’m feeling.
And now, two years after I wrote this original post and two years of life experience later, I’ve finally fostered my perfect support network from the different people and relationships in my life. I’ve got the lifelong support of my family members, the years of support that my friend groups have provided to me, support from coworkers who work with me in the diabetes space (bringing a whole new meaning to people who really and truly “get it”), and the support in my romantic relationship that I’ve been missing my entire adult life. It feels incredible to have a partner who always asks questions and demonstrates a willingness to learn about my diabetes, adds new perspective and helps me identify solutions when I’m being challenged by my diabetes, and shows up for me when I really need him to. That, and the support I get from the other groups I’ve mentioned, is truly powerful…and when it’s combined with learning how to rely on others and best support myself, support becomes magical and absolutely enhances the quality of my life with diabetes.
Sometimes, I feel like I am a human garbage disposal.
It’s not everyday, but there are occasions in which I want to eat anything and everything within arm’s reach like it’s the last meal or snack that I’ll consume for days. When I’m experiencing a low blood sugar, I’m especially likely to inhale food as if I’m a living Hoover vacuum…or as I’ve come to think of it, a human garbage disposal.
There’s no doubt about it: Diabetes has totally screwed up my relationship with food. I’ve written about this previously. I’m also just as sure of the fact that my relationship with food has gotten worse as I’ve grown older, a phenomenon that I blame on numerous factors such as the natural process of aging, social media, and society’s constant scrutiny of how women’s bodies “should” look. Add my diabetes into this mix and I feel like trash about my body and harvest negative feelings towards food (despite also loving food).
So yeah, a human garbage disposal – with diabetes, no less – feels like an accurate way to describe me and my relationship with food.
Don’t get me wrong – this isn’t a “pity me” post. Not at all. This post is more so me…trying to understand what can be done to repair my relationship with food. Because I think if I can repair it, then I can start seeing positive outcomes on my blood sugar and start to strengthen my own sense of self-love. These are important things, you know, and I’ve hit a point where I’m just tired of feeling so damn negative about my diabetes, food, and my body all the time.
I might feel like a human garbage disposal lately, but “human” is at the forefront of that phrase. I’m human, I make mistakes, and my relationships with my diabetes, my food, and my body are bound to ebb and flow over the years.
At the end of the day, I think it’s just a matter of making peace with that.
This time last year, I was headed to the beach for a week and wrote a post expressing my excitement over the change of scenery…and the fact that the CWD FFL conference was taking place, albeit virtually, during the same span of time.
I was beyond stoked to get away for a week, my enthusiasm no doubt fueled by having spent the last few months in isolation (with my parents) due to the pandemic. But I was also incredibly anxious seeing as I didn’t know how drastically this vacation would differ from the ones we’ve taken in years past because of COVID concerns. I wrote:
I have no idea if my family and I will be able to even go to the same strip of sand and ocean without having to worry about things like too many people and not enough masks. We probably won’t be able to eat at many restaurants like we typically do on vacation; instead, we’ll likely cook a significantly higher percentage of our food at home. And we definitely won’t be able to peruse the shops like we have done every year since going to this particular beach town – we’ll have to be a little more creative when it comes to staying entertained.
Granted, I also wrote in that blog post that I was grateful to have the FFL conference to “attend” as a distraction that was both one that I wanted but also one that might be necessary so I wasn’t completely without fun things to do over vacation.
What a relief it is to think about how much things have changed between now and then. Thank goodness for vaccines!
This is my long, roundabout way of saying that I’m on vacation all of next week and I’m so excited to have all that time to unplug and unwind. As much as I liked attending the FFL conference virtually last year, it didn’t foster that sense of community and joy as much as it does when I’m attending it in-person. I’m thrilled for the individuals who are able to go in-person this year, though – I know they’ll get so much out of it and have a truly fun time.
But for now, it’s time for me to hit the recharge button. I’ll still have a couple of new blog posts up and ready next week so be sure to come back then to check them out!
There’s no doubt that T1D directly affects my relationship with food.
Sometimes, I eat whatever I want with zero guilt. Other times, I painstakingly count not just the carbs, but every single macro of any morsel that meets my mouth. And more often than not, I fall somewhere between those two extremes.
But no matter what, my relationship with food is exhausting and probably one of the most inconsistent relationships I’ve ever had in my entire life.
It’s also a relationship that causes me to make what I’m calling “inspired” food choices.
Choices like eating dessert before dinner because my blood sugar is low.
Choices like only eating low- or no-carb foods because my blood sugar is high.
Choices like timing my meals down to the minute because I know that my body functions best when I eat regularly.
Choices like keeping snacks in my purse, my overnight bags, my car, and miscellaneous other locations because I never know when I might need food on the fly.
Choices like restricting my eating because a low blood sugar made me binge on food one day, and the guilt carried over to the next day.
Maybe “inspired” isn’t the right word to describe my food choices here. There’s so many more that could apply: weird, strategic, healthy, unhealthy…the list is limitless.
Just like the number of “inspired” food choices that my diabetes triggers.
Good, bad, and everything in between, though, the first step in making changes to my relationship with food is acknowledging the flaws in it. While I admit that I’m not sure what the next step is, I do know that I’m feeling determined to finally establish a guilt-free relationship with food.
Diabetes already takes too much from me…I refuse to let it continue to make my relationship with food negative.
This post originally appeared on Hugging the Cactus on June 13, 2018. I’m sharing it again today because the blame game is played far too often in life with diabetes. People pass judgment on others for how they choose to manage diabetes, and it does more harm than good. Read on for my thoughts on why we need to stop shaming others.
Here’s a little disclaimer: This post is highly personal. I’m going to dive deep here and talk about a few things that bother me when it comes to how others perceive T1D. My opinions are strong, but I’m entitled to them – just like you are.
“I can’t believe his blood sugar got that low. He really needs to have better control over his diabetes.”
“Why wasn’t she carrying a snack with her? That’s so irresponsible, she should know better!”
“They’re unhealthy. The way they manage their diabetes isn’t okay and it’s no wonder they go to the doctor so much.”
These are words that others have spoken about people with diabetes in my presence. While these thoughts and feelings aren’t necessarily about me, it doesn’t mean that I don’t take them personally.
Why do they bother me? Because they’re dripping with judgment.
It’s easy for someone who simply doesn’t understand diabetes to make assumptions based on a couple of observations they make about someone with diabetes. But just because it’s easy to assume things, it doesn’t make it okay.
Just because you see someone have a tough diabetes day, it doesn’t mean that’s what it’s like all the time.
Just because someone forgot to carry a low blood sugar remedy on them, it doesn’t mean that they always forget one.
Just because you know of someone who frequently visits the doctor, it doesn’t mean their diabetes is “out of control.”
Just because you blame someone for not taking “proper care” of themselves, it doesn’t mean that they don’t try their damnedest.
That’s what’s so wrong about making assumptions about how someone manages his/her/their diabetes: It’s impossible for anyone to know the full story about that individual’s diabetes, because they are the one solely in charge of it. They know how it behaves 24/7/365. They know it better than their doctor, spouse, family, friends, and coworkers. And the funny (and by funny, I mean really shitty) thing about diabetes is that sometimes, you can’t predict what it’s going to do next. So you have to be prepared to roll with the punches at a moment’s notice. And you’ve got to be that prepared all the damn time: when you’re awake, asleep, traveling, exercising, working, and just plain living.
Sounds exhausting, doesn’t it?
So that’s why I think the blame game is especially cruel when it’s played to cast judgment on people with diabetes. We have the incredibly difficult task of taking care of something that most other people never have to worry about, and blaming someone for not “doing what they should be doing” is heartless and does nothing to help them.
I challenge anyone reading this to think twice before they jump to conclusions about how a person with diabetes takes care of themselves. Remember that just because you may have witnessed them going through a difficult diabetes experience, it doesn’t mean that it’s like that for them all the time, or that they aren’t doing everything they can to take the best possible care of themselves. The world is occupied by enough critics – do your part to be supportive, not shameful.