Skip to content

Posts from the ‘Diabetes and Emotions’ Category

Diabetes Month: The One About Anxiety

I’ve had some anxiety flare ups in the past.

Like in college, when I’d break out in hives across my abdomen, tied directly to the more stressful moments – when exams were up, when I was working the early am breakfast shift five days a week and then going to class, when my parents split.

Like after my son was born and I pictured birds pecking out his eyes when we’d be on a seemingly innocuous walk around the bright and sunny neighborhood.

Like for the last year or so, due to the political unrest and a news cycle that ramps up feelings of instability.

For the last few weeks, I’ve had a lot of trouble going to sleep at night.  Not because I’m not tired.  I’m exhausted, honestly.  But my brain won’t shut off at night.  I worry about my kids and their health.  About my marriage and family.  About things that need to be tended to in the house – what needs to be cleaned, what needs to be replenished, what paperwork needs filing, etc to the etc of all et ceteras.  About everything I can control and the shit I can’t.  Everything all at once.

Once rolling, this worry spins out of control and then I start to worry about my body and its health. The autonomic actions of my body – breathing, heartbeat – become questionable.  Is my breathing too rapid?  Is my heart beating too quickly?  Does my arm hurt now?  Am I having a heart attack?  I feel nauseas; is that a heart attack sign?  Do I wake up my husband and tell him I’m having a panic attack and a heart attack?  I try to mentally force my heart to stop racing, force my brain to stop racing, but they’re off like greyhounds chasing a rabbit.

Sleep is awful lately.

Last night, I had a nightmare that a faceless woman died in my arms due to a low blood sugar.  She cried before she died and I woke up crying, immersed in fight-or-flight mode and had to reason myself back into a moderate mindset.  I could not fall back asleep.  My own blood sugar was 90 mg/dL and stable but I felt compelled to have a snack just in case (despite wearing a CGM, despite my husband beside me, despite, despite, despite but because, because, because).

I know it’s the news cycle that’s bringing me back into the anxious cycle of my early 20’s.  My emotional centers are permeable in that way.  I know myself well enough to see the cycle starting up and know I’m pinned against the wall of my spinning mind.  I’m on the Gravitron at the county fair.

What I don’t know is how to stop it entirely.

I’m embarrassed to admit that I am panicky a lot of the time these days.  It doesn’t feel comfortable to feel these feelings and it feels even less comfortable to write them down, but it’s how diabetes is these days.  The reality of the possibility of an issue while I’m asleep is a thing.  And that possibility has rooted in my brain like a spider plant, growing and latching onto the next patch of fertile synapses that should be used for writing or parenting but is now infested with spidery panic.  The reality of life with chronic illness is that it makes you acknowledge the forever of it, which makes me question my forever with it.

This will pass.  I know it will.  It has passed in the past.  Asking for help is hard.  Waiting for it to work is hard.  Pretending that diabetes isn’t something I worry deeply about at times is hard.   Not every day is hard, but the few that are become a full stop.  Spending Diabetes Month trying to show a strong, capable version of life with diabetes is hard when some nights are spent worrying instead of warrioring.

Sharing it is hard but not sharing it is oddly harder.

This is diabetes.  Or at least it’s my diabetes at the moment.

Do You Hate Diabetes?

I asked some friends on Facebook if they hated diabetes, and the answers* were as varied as the folks responding:

  • “I hate it, the hassle, and the complications but I do not hate the growth amd strength I’ve achieved or the family I’ve gained because of it.”
  • “I don’t hate it as a thing but it does annoy me. At the same time I am very thankful that if I must have a problem of this type at least there are good doctors and advancing technology to help me live a normalish life.”
  • “I didn’t used to hate it when I was younger-I think because I had camp. But at this point, to be honest, I do tend to hate it.”
  • “Do I hate diabetes in general? Yes probably … I hate that it causes so much pain and suffering all over the world. I hate that people die from it and that companies exploit us living with it to make crazy profits. But do I hate living with it? Yes I dislike it very much.. and at times in rage I would say hate. But diabetes has opened so many doors for me and taught me a great appreciation for life. It’s easy for me to say that however within my environment. So who am I to judge anyone for saying that they hate it!”
  • “I don’t hate it, but it makes me tired and exasperated too often.”
  • “I don’t hate it. When I think about the ailments some of my other friends/acquaintances have, I am thankful this one isn’t a death sentence.”
  • “It’s a love/hate relationship. I wish none of us had it, or had to deal with the daily demands of it, and all the bullshit that comes with it. That’s the part I hate about it. But without it, I wouldn’t have met many of the people that make all the difference in my world, what I’m going back to school for wouldn’t be as clear, and my profession wouldn’t be as meaningful to me and (hopefully) others. I might not have as much empathy for others if I hadn’t lived my whole life with diabetes. Diabetes keeps me from being an asshole. Mostly.”
  • “I don’t hate it. Hate stirs up sadness, anger and emotions of feeling trapped. Hard to work with it if I hate it. But I wish to the depths of my core that I didn’t have to face it every day; every minute. It’s hard. It’s horrible. But it’s not hate.”
  • “I’ve always wished I didn’t have it (obviously), and I hate what it’s done to my body and how much it’s cost in both money and effort, but I’ve never hated the disease itself. It’s just part of who I am.”
  • “On some days or in certain moments, YES with a passion. However, most of the time, I’m kind of indifferent about it or it can feel like a minor annoyance or inconvenience. On rare occasions I actually feel that it gives my life more meaning.”
  • “Every damn bit of it, except for seeing how exceptional my daughter is in spite of it.”
  • “On an overall day I don’t hate it but when I stop to think about the expense or the guilt when I pig out on something or thinking about potential long term effects I hate it. I also hate it when it interrupts a full night of sleep which is does most nights but during the day I’m not walking around with hate on my mind.”
  • “No. Hating takes so much energy, emotion & attention. I already give diabetes so much of those. I don’t want to give it more.”
  • “No time for hate. To busy being SO ANNOYED.”

  • “I feel hate is too strong a word. I don’t enjoy living with it but that’s the thing… it lives with me not in place of me. It doesn’t stop me from particular events in life but it does have me consider them more. For instance I have never had an A1c lower than 8% and therefore have never been given “the go ahead to ttc ” but in saying that it won’t wholly define our choice, our timing nor the outcome.  It can be hard, tiring and frustrating but it isn’t worth hating.  I probably wouldn’t be the person I have become, without it.”
  • “Hate maybe isn’t the right word…but I certainly resent it. I get that people appreciate the community and relationships they’ve made because of diabetes, but didn’t we seek those things out as a way to cope? Just think of what we could have done if we hadn’t felt the need to find that support. I doubt I’d have a spotless medical record without diabetes, but starting with a level playing field would have been nice.”
  • “Well, I don’t hate mine, but I kind of hate other people’s. Like the fact that so many people here hate it makes me hate it. But if it were just mine, I wouldn’t be that mad about it.”
  • “I do not. I hate many things about it but, at this point, it’s all I know. If a cure were found tomorrow, I would be utterly confused.”
  • “Nope. I barely think about it. It’s just something I do. Part of my daily routine.”
  • “It is bits and pieces of the fabric of my girls. I wish terribly, fiercely, sometimes desperately that it wasn’t a part of them or anyone else. But hate … if I am honest, I can’t hate it. That emotion would tear me up. I have to focus on being strong for them. So I focus on the things that we can control and I work hard to make it as easy, ignorable and stress free as possible.”
  • “Hate is such a strong word. My feelings towards Diabetes aren’t that strong. I have stronger feelings about people who are hateful and disrespectful. Diabetes certainly takes a back burner to that. I would certainly be ‘me’ without Diabetes and it would be amazing if it were obsolete but I’m not going to put that much thought into something I cannot control.”
  • “Sometimes. But feeling constant hate would make my life a lot more stressful I think. Most of the time we co-exist with various degrees of annoyance. Sometimes I would like to punch it in the throat.”
  • “More then I could ever explain.”
  • “Nope. Met a lot of great folks in real life and online due to it. It’s something that I deal with on a low level constantly and so it doesn’t really flare up to a major pain for me. Everyone has something. I’d rather have something that is manageable, invisible to the world, and commonly understood by the general public on a basic level.”
  • “I don’t hate it. I have some semblance of control over it and at least technology and management is improving drastically all the time. I have another medical condition that is a total wild card, that while it (probably) won’t kill me, could make impossible to walk or use my hands at some point, makes me much more physically tired than diabetes, and makes me physically unable to do certain things. And has far far less chance of getting better or being cured. If I could “just” have diabetes, I’d totally do that.”
  • “Yes. I’m not going to sugarcoat that one. But I don’t hate it enough to let it cripple me/us. I don’t give anything that much power over me.”
  • “Sometimes. I hate that there are many aspects of life I can’t be spontaneous with, and that some times I plan and nothing goes to plan. I hate that I constantly think about health insurance and the role that diabetes plays in my financial stability. There’s a daily, if not hourly, fluctuation that exists when it comes to feeling positive, neutral, and negative about my diabetes.”
  • “Well, I sure as hell don’t love it!”

For me, after 31 years of type 1 diabetes, I don’t carry around a lot of anger or shame about diabetes, but I don’t harbor warm, fuzzy feelings.  I don’t hate it. I don’t like it and would get rid of it in a heartbeat if given the chance, but I don’t spend the day loathing it. (Some days, yep.  I can’t pretend to be happy about this condition.  Especially now that I’m getting older and Things are Happening that make me wonder, “Hey, is this diabetes?” or “Hey, is this just the aging process?”)

But I think that’s because it’s mine and mine alone. If one of my children had diabetes, I’d hate it seventeen different ways.

The responses from people on Facebook were so diverse, just like our community.  And I think responses could also change depending on what’s going on in the world, in their lives that day, or what result might have just stared back at them from a glucose meter. No “right way” to feel. Whatever way you feel is right.  Diabetes is part of every day, and the emotional influence is has on our lives is rarely discussed but nonetheless pervasive and constant.

But I’m glad we’re starting to talk about it.  No matter how we feel about diabetes on any given day, the community that’s bloomed around this disease continues to inform, inspire, and redefine living with diabetes.  That’s something worth loving.

 

 

 

(* All of the following bullet points are from comments on th FB thread.)

Guest Post: Mindy Bartleson on Chronic Illness, Mental Heath, and Removing the Rose Colored Glasses

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much.  Today, she’s sharing the why behind her efforts on SixUntilMe.

And if you’d like to help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word.  The Kickstarter ends a week from tomorrow.

  *    *   *

Usually, there are multiple things going on. It might be visible. It may be shared. It could be a secret- only shared with your inner circle. Even without a mental health diagnosis, mental health is an important thing to keep in mind with chronic illness, like diabetes. Hell- even without a chronic illness- mental health is important. Sadly though, it’s something that isn’t often talked about or taken seriously. It’s taboo. It’s not important. It’s hard to understand. You name it- we’ve heard it. Social norms also play a role. We’re supposed to be productive members of society and not acknowledge anything negative.

Over the years, I’ve adjusted my blog.. I wanted to talk about it all together- the type 1 diabetes, PCOS, endometriosis, anxiety, OCD, ADHD, (other diagnoses), loss, and more- because like the title of my blog says- “There’s More to the Story”. I wanted to talk about it honestly- the good and the bad. I didn’t used to do this. It wasn’t until diabetes burnout hit me with full force when I was in college. That’s when I realized something. Up until that point I wouldn’t acknowledge the negative parts of diabetes- of chronic illness. I thought I had to pick a viewpoint and couldn’t move. I had to either be positive or negative so I found myself not only lying to the world around me, but also to myself. That’s when I switched how I approached my blog and life.

About two years ago, I realized that I was applying rose-colored glasses to a lot of things in my life already at the age of 22. I was starting to say that all the bad things were worth it or completely ignoring them. I firmly believe that yes I can do it. That I (and others) can get through things. But I want to acknowledge that it can suck. That it’s hard. That maybe there are systematic things that play a part too. That I should still check my privilege. That’s what life is. It’s what I needed to do.

We need to talk about and share those moments- not just for ourselves but for other people who need that honesty to know that they are not alone. We need to share the moments where we sit crying on the bathroom floor because diabetes wouldn’t cooperate all day and someone made a hurtful comment. Then we can share how we got back up to change that pumpsite and maybe to tell that person who made the hurtful comment how we feel. The how is so important. The fact that we get back up is so important. But- maybe someone needs to hear how we felt when the tears hit – how we felt when you just had enough – how it felt to let it out. We need to do that.

About two years ago, I made the decision to start a project. I decided to write a book about chronic illness and mental health. Everything I’ve talked about so far is what I applied to writing this book.

I’m aiming to balance the positive and the negative together on growing up in general but also with chronic illness and mental health along for the ride. I talk about moments of why I sat on the bathroom floor crying and how I got up. Of course I talk about more- and it wasn’t always a bathroom floor.

Over the past two years, writing this book has pushed me to process a lot of my past. All of it. I’ve seen how far I’ve come and realized the importance of so many situations.

I’m pursuing self-publishing. Because I recently graduated college (and put myself through it so I have loans) and have a social work degree, I’m utilizing crowdfunding to make this happen.

  *   *   *

I’ve put my money where my blog post mouth is and backed Mindy’s campaign, as I think this resource would be a powerful one for our community as a whole.  Mental health is health and I agree it needs to be talked about, shared, and cared for as openly as diabetes.  

For more from Mindy, you can follow her on Instagram, Twitter, Facebook, and her blog “There’s More to the Story.”  

 

Thirty One Years with Diabetes.

When my diabetes marked it’s 25th birthday, I wrote a bulleted of stuff I’ve learned since diagnosis.  Another handful of years later, most of that list still holds up, with a few tweaks:

Sometimes I can’t believe this is still A Thing.  That diabetes is still a thing that requires attention, work, and patience.  I used to believe in the “five more years until a cure” thing, but that promise has been folded and refolded six times over by now.  I believe that the research maybe prevent diabetes in my children, but I’m not sure it will cure it for me.  And that weirds me out.  “Forever” was always tempered by that, “Yeah, but five more years …”

And there’s a strange sense of acceptance that’s come in the last seven years, accepting that diabetes might not really be cured for me.  I find myself looking at research and technology that’s rocketing towards alleviating the burden of diabetes on people living with it and feeling awesome about that progress.  And it’s not just the Big Companies who are making a difference.  It’s the renegade ones.  And the community groups.  And the PWD empowered and inspired to make a difference.

I’m regularly impressed by families who live with diabetes.  They know how to take These Things seriously without taking those Things too seriously.  They speak in a special language of numbers and ratios and tubing lengths and labwork percentages.  They are tireless, even when they’re tired.

They inspire the absolute hell out of me.

Life is still filled with a whole bunch of colors and I’m not done coloring yet … even if it’s occasionally outside the lines.  Despite diabetes.  And because of diabetes.

But duuuuuuude, I still pretty much despise this disease.  Yep.  I can’t pretend to be above that, to have embraced it and found happiness in it.  Nope.  I do not like diabetes.  Any grace that’s borne of it doesn’t change the chokehold it’s had on my life at times.  I wish that wasn’t true, but it is true.

However.  I have gained so much from this disease.

Not just perspective, although that’s a powerful grab.  Troubles whittle themselves down a little bit when put through the mental diabetes woodchipper.  That perspective has been to my benefit as I went through my teen years (other girls were angry and upset that their jeans were a size 8 instead of a size 2 –  I was fine with a size 8 so long as my morning BG was between 80 – 140 mg/dL) and also as I managed pregnancies (stretch marks?  morning sickness?  yeah, but that healthy baby, though).

I’ve also made friendships – ones as chronic and lifelong as diabetes – where these like-pancreased connections are part of my inner circle for life.  FOR LIFE.  This connection was forged through similar circumstances but will remain intact despite distance, time, and even a cure.

But the reality of diabetes sets in more and more, especially as the same realities of Regular Life hit their stride.  I can’t pretend that it’s all easy and effortless.  This shit might look easy, but some days it’s hard.

Diabetes scares me more now that I’m older.  I read about heart attacks and other crisis events and used to think, “Damn.  They were so young.”  And now I read, thinking, “Damn.  I’m in that age range where I’m old enough for it to happen and young enough for people to think, ‘Damn, they were so young.'”

This freaks me out.  I worry about the Big Things more these days than I did before.  I try not to, but I still do.  Sometimes bedtime is when my brain hits the spin cycle and I have trouble falling asleep, picturing What Ifs and Oh Shits.

Aging and diabetes is now a thing.  Are my knees making that weird cricking sound when I run up the stairs because I’m older?  Or because of diabetes?  Or is it a combo deal?  And when you answer, can you speak up because I’m seriously having trouble hearing you.

Even after 31 years, diabetes still has days where it behaves.  And days when it doesn’t.

I can say exactly the same for myself.

Since I wrote my list at 25 years of diabetes, I’ve had another little baby bird and my life now is tied to two young people, not just one.  I have two babies to stay healthy for, two babies to annoy well into their old age.  The motivating force towards good health that my children provide cannot be properly appreciated.  They are my little world.

My hope lives in a different house now.  As I mentioned, I’m not expecting diabetes to be cured, but I’m anticipating that I may be able to ignore it altogether in the future; that data and technology will come together in a way that doesn’t make me produce insulin but also doesn’t produce worry and anxiety in the same way.  Stick on the device and it will diabetes for you.  Yes, please.  Hurry, please.

Instead, I hope for my kids.  I hope for their kids.  I hope that my mom will know with certainty that diabetes will never make my life less mine.  I hope that my husband knows I’ll be around to drive him bananas for decades to come.  I hope the community rallies and sticks together with one another, rising up against our common enemy while educating, supporting, and loving one another.  Enormous thanks to all of you for being part of a network of hearts and hopes that make this walk with diabetes easier, and less lonely.

After 31 years, I look at this body, all riddled with shouldn’ts and can’ts, and see that it should, and it can.

And it will.

 

In Sickness and in Health: My Partner Has Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who are in a relationship with someone who has diabetes.  Read yesterday’s post here.

As the person in my marriage who hosts diabetes, I struggle to see things from the other side.  Which is why I’m really grateful for the partners of PWD who offered their take on diabetes and marriage, because it’s some great insight on what diabetes looks like “from the other side.”  Whether diabetes was part of the family before the wedding or came into effect after the vows, diabetes can add some intensity to the relationship equation.

Brian “married into diabetes” and shared some thoughts with me. “[My wife] Laura was diagnosed really early in our dating relationship, so it’s something we learned about and have always dealt with together. It certainly tested and proved our bond in the beginning. Now that we’ve been married (almost) six years, it’s simply a part of our lives.  I’d say the biggest struggle for me is that we generally are partners in everything we do. But with diabetes, no matter how supportive I am and how much I try to help, we’re never really partners because it is always hers to deal with. No matter how much we confront it together, she is always facing it alone.”

A female friend who wanted to remain anonymous said, “My husband has had T1D for 25 years and we’ve been married for 9. Diabetes doesn’t necessarily affect our marriage in a tangible way. It’s an underlying current. It’s little things like having to stop for juice 10 minutes into a family road trip, wondering if he’s cranky because he had a bad day or if he’s high or low, or whether the insulin pen he left on the kitchen counter is the long-lasting one or the one he should have taken to work. It’s developing the ability to know if he’s low simply by the look in his eyes. It’s understanding that he always gets low when he mows the lawn. Other than the absolute horror show of having to deal with our insurance, I feel like we do a pretty good job of not letting it affect our everyday life. But we also try to understand that, no matter what, it affects his everyday life.”

Meredith is married to Harry (who has T1D), and they have a daughter close to Birdy’s age.  Meredith said, “It makes me worry. Not just worry about the future, but everyday things. When Harry goes on a business trip or I am away from him at night I worry about low blood sugar. He doesn’t always hear his alarms at night and so I worry about what could happen when I’m not there. I also worry when he works out (which you know is often). If I text and he doesn’t answer or if he’s gone longer then I think he should be my mind almost always goes to BS problems. I still have the regular spouse worries, like normal accidents, but his diabetes adds to that and I’m already a worrier. I think it drives him crazy.”

I’ve thought about this before, the whole “what if it was Chris and not me who had diabetes.”  I know I would nag the absolute shit out of him and would also worry a lot. That’s my role (in life?) – to worry.  And if someone other than me was living with diabetes, I’d worry incessantly about them.  Preferring to have diabetes myself isn’t heroic, but selfish because I’d worry myself into a stupor if it were anyone other than me.

Another woman, who asked to post her comments anonymously, refers to her husband’s diabetes as the third wheel. “We often call [his] diabetes the third wheel in our marriage. It’s always there and challenges our relationship often. [My husband] has a very different demeanor when he’s high, which requires a lot of my patience and to be honest- with two kids under 4, I don’t have any extra patience. So I’m not as kind and forgiving as I should be.”

Sometimes both partners have diabetes, which can add an extra layer of both understanding and of stress.  Kelley was married to someone with type 1 diabetes, and the influence on their relationship was not entirely positive.  She said, “Type 1 very much strained my marriage of 11 years to another type 1. He had hypoglycemia induced seizures along with hypo unawareness. He never wanted to wear his sensor, and it got to the point where I would refuse to leave our sons with him alone for long periods of time. I made sure both of us had insulin and supplies, I made sure our blood work was done, that alcohol wipes and tape were on the shelf where he liked them, and that there were always 2 glucagon pens in the house. I was the one that would argue with him and force feed him glucose gel or tabs, and the one that called 911 if things went too far south for my nursing skills to handle.”

“It caused a lot of resentment and frustration, and made me feel thankful for my own diabetes being easier to manage,” she continued.  “Now that we are divorced, our oldest son has taken on some of the burdens I used to shoulder, and has had a cell phone since the age of 7 to help him with all of this.”

When I was growing up, I didn’t know many other people with diabetes, but in the last 12 years, I’ve made up for lost time.  Which  means I have a lot of “diabetes friends,” which in turn produces a lot of love and a lot of worry.  I’ve never dated someone else with diabetes, but I’ve wondered what that would be like.

Kelley has strong opinions about this.  “I told myself I would never date or marry another type 1 as our marriage began to dissolve. And I have stuck to this. My new partner follows my Dexcom, makes sure I have plenty of insulin in the fridge and fruit snacks and grape glucose tabs in the night stand. I never realized how much I loved being taken care of. I have experienced both ends of the spectrum.”

But it can go either way, as with anything.  By contrast, my friends Chris and Dayle both have type 1, they are married, and they actually met through the diabetes community.  Diabetes is woven around different parts of their relationship, as Chris recounted.

“So do we talk about the dresser devoted exclusively to diabetes supplies?” Chris shared on my Facebook thread.  “The conversations about insurance? The cupcakes? The races to see who finishes their TSA patdowns first? The fact that juice boxes made it into our vows? I think we kinda stacked the deck with both of us having diabetes”

Dayle has a similar outlook, through a lens of humor.  “When Chris and I first met, I was actually dating a different pwd. But he was weird in that he actually changed his lancet for every. Single. BG test. So Christopher was a welcome change.”

Reading through people’s responses really opened my eyes to what it might be like to have diabetes on the other side of my marriage, and made me grateful for the people who live with and love someone with diabetes.  I know that when I’m frustrated with my own diabetes, it’s the steady and calming influence of my husband who keeps me from throwing my meter across the room and watching it shatter into a thousand pieces.

Which is a useful skill, since cats and kids alike might try to eat the little broken meter pieces.

Thank you to everyone who decided to share their thoughts on diabetes and marriage. Your perspectives are valued, appreciated, and comforting.

 

Follow

Get every new post delivered to your Inbox

Join other followers