Community//

Type One Confessions: I’m Tired & Sometimes I Wish More People Understood Why

Every single day, I get out of bed just like you. But my morning routine is probably different than yours. I say that because I have an invisible disease. So to you, I look like everybody else.

But I’m not. I want to feel normal. I don’t want to be different. But I am. I’m different because I need something called insulin. Because not everyone, including me, can produce it naturally. But we all need it. And without? You’d have no energy. That’s literally what happened to me right before I found out I was a type one diabetic. So yeah, most days I'm tired. But you won't see me stop. This is what I want you to know.

I’m tired. I’m tired of having to prick my finger every time I want to leave the house or do anything for that matter.

I’m tired of having to force-feed myself back to life —even if I just ate an hour ago. I’m tired of worrying that maybe one day, I will not wake up. I mean, yeah. There’s a chance, I won’t make it past a certain age because of some diabetic complication.

Oh and, I’m tired just thinking about how tired I am.

Truthfully, there are times where I feel like I’m letting everyone down. I feel like I’m letting myself down. I feel as if I’m a failure at a disease I never asked for —something I could have never prevented. Every single day, I get out of bed just like you.

But my morning routine is probably different than yours.

Besides being a recovering addict, I’m also a type one diabetic. My life revolves around daily affirmations and blood sugar checks. It’s not that simple though. Diabetes is a unique disease. Even though I’m clearly not a doctor, I have to make medical decisions, every minute of every day.
But no one really notices.

It’s an invisible illness. So to you, I look like everybody else. But I’m not. I want to feel normal. I don’t want to be different. But I am. I’m different because I need something called insulin. Insulin is a clear liquid —a hormone that regulates sugar in the blood. Except not everyone, including me, can produce it naturally. But we all need it. And without? You’d have no energy. That’s literally what happened to me.

Back in 2015, I was tired all the time.

It hurt simply walking up the stairs. I lost a significant amount of weight in a really short period of time. Secretly, I loved it. Except, I didn’t love the other symptoms that came with it. I was pale, weak, and lethargic. I was always thirsty; therefore, I always had to pee. It didn’t matter how much I slept because I’d still wake up tired AF. What I didn’t know then was that inside my body —inside an organ I didn’t even know I had, a silent war was raging.

My antibodies began attacking the insulin-producing beta cells of my pancreas. Those cells are supposed to give me energy by making insulin from the food I eat. Except, they were slowly dying. They didn’t have (still don’t) a defense because they aren’t supposed to be attacked. I ended up being rushed to the emergency room where I later learned that all of this was leading up to my official diagnosis as a type one diabetic.

While I was there, I was given insulin intravenously before and after every meal. I didn’t know then that I’d have to continue this even after I left. And now? I still do it multiple times a day, every day and I will continue doing so for the rest of my life. I remember being terrified of needles, always had been, so it was torture. I just wanted it to stop so I could go home. But no. I had to stay there for nearly a week.

That’s when I realized, my life was never going to be the same again.

I’ve always hated change but this was more than that. Yeah, they gave me pamphlets and talked about my new normal. It’s just, it was so much to take in at one time. I felt like I was drowning in a sea of new information. It was a sea I didn’t want to be in. But I had too. I still do. I recall a few nurses telling me a bunch of horror stories about other diabetics not taking proper care of themselves and ending up right where I was or, worse —dead.
But no one wants to talks about that.

In short, I was (and will continue to be) exhausted. I’m not just talking about being a type one. What I’m talking about here is the never-ending loop of the same old shit. It’s draining and stressful, and experts have a name for it: diabetic distress. All things considering, I’d say that distress is a normal reaction when managing a progressive, chronic condition like diabetes. Because even though, it’s the same thing every time, this disease is also extremely unpredictable.

None of it adds up but it does, in fact, creep up. Like when I refill my insulin at the pharmacy, I get this overwhelming sense of sadness. I realize that the same insulin that keeps me alive —comes at a cost. Insulin is one of the most expensive drugs in the United States, and yet I indisputably can’t live without it. Financially, this disease could crush me. Some people go in debt merely trying to stay alive.

I mean, a month’s supply of insulin without insurance costs over $1,000. Luckily, I’m covered but some months, it’s still a battle. I don’t want to need insulin. But I do. I’d literally be dead without it because my pancreas doesn’t work as it should. It’s like I can’t leave the house without bringing some type of food or drink with me. What if I go low and forget though? Like what if I slip up and fail to pack a little something.

That scared me. That still scares me.

I mean, the truth of the matter is —when it comes to treating a low and dealing with all this, if you do, in fact, slack off and forget enough times, you really can die. Which is why, most evenings, it’s hard sleeping through the night. I’m too busy thinking, what if it’s the last time I close my eyes? Whenever I do wake up, I feel a rush of relief knowing that I made it. The worst thing though is how I feel when my blood sugars aren’t in range.

When I’m low, I feel like my head is underwater. My hands shake. I can’t sit still. I zone out and it feels as if I just chugged four cups of coffee, yet I can’t focus on a single fucking thing. There’s no hope in keeping up a conversation. I feel lightheaded and disorientated. I’m starving for glucose (energy). Hangry is a real thing, people. I dart into the kitchen to grab anything that will raise my blood sugar. Frankly, that’s when I feel especially alone and helpless. I’m fighting to survive.

In short, a low feels like my body is shutting down. A low enough number could cause me to go unconscious and have a seizure (which has happened a couple times). And when I’m high? It’s not much better —actually, it’s worse. I feel like throwing up. I’m nauseated and everything hurts. All I want to do is get into bed but even then, I’m uncomfortable. I want to rip my skin off. I’m sweaty and achy, yet hungry and dying of thirst. All the while, I have to pee every five seconds and I hate every inch of my body.

I didn’t ask for this. This is literally the last thing I wanted.

But it’s my reality whether I like it or not. Some days are easier than others. But on those bad days, it’s bad. For a while, like in the beginning, my numbers were insanely inconsistent —so I experienced these symptoms often. I still sometimes do, but not nearly as much. And yet, it’s still a near-death experience, that I’ve experienced many times. And even though, it’s apart of my new normal, I don’t think I’ll ever get used to it.
But no one really understands.
No one understands because you don’t until you do.

You don’t because you don’t have too —until it’s you. And it’s because of this type of ignorance that I’m annoyed. I’m annoyed that I have to explain the difference between type one and type two. I’m tired of telling others over and over that type one isn’t caused by too much sugar. It’s not my fault, guys. And it’s not yours either. But it’s not about everybody else. It’s about me.

I want to feel good. I want to be healthy. It’s just, I’m annoyed that every time I want to eat or get a snack, I have to inject myself. But I have to check my sugar first. I have to figure out how much insulin I need, which is all dependent upon what I’m doing, what I’m eating, and what my number is at that moment. I was never good at math but now I have to be. It’s frustrating because sometimes when I do this —like if I’m out in public, I get weird looks from others around me (or at least that’s how it feels).

It’s like what are you doing with blood on your finger and a strange looking needle? No, it’s not heroin. And no, I’m not going to excuse myself to do this in the dirty bathroom. After all, you’re not embarrassed to breathe in public right? Eating is perfectly acceptable too, isn’t it? Even swallowing pills or using an inhaler poses no problem. So why is it that a handful of people, both with and without diabetes, have an issue with all this?

There are some who think I should walk into a bathroom or go to the car to do that shit in private. Now, I don’t know about you, but when I’m at a restaurant, I often need more than one shot. Like I said earlier, it depends on what I’m eating, when I’m eating and how long I’ll be there. Since I’m already forced to change so much, you won’t see me running to the ladies room three to four times just to do the same thing I could be doing quietly at my seat because it makes someone uncomfortable.

He or she doesn’t have to look at me. Why are you staring anyway?

I mean, being discreet is a common courtesy, just like chewing food with your mouth closed. We can all agree there is no need to make a scene by waving a syringe or bloody finger around, but I believe that hiding out in a public restroom or the front seat of your car is sending a message that I’m ashamed or I believe something is wrong with what I’m doing. I’m not ashamed and there’s absolutely nothing wrong in wanting to save my fucking life.

But no one really cares.

You know what though? I suggest anyone who gets “queasy” —when quarter-inch needles are around, simply look the other way. I can assure you that no one is going to get any serious health complication by catching a glimpse of someone taking care of their diabetes. Except, the person on the receiving end of that treatment (me) just might —if they miss a shot or an insulin dose in an effort to be discreet.

I mean, diabetes doesn’t get put on hold just because I’m out to dinner. It doesn’t pause when I go shopping or take a nap when I attend a party. It’s a 24.7 job and it certainly doesn’t wait for opportune times to do damage. Like I’ve already established though, most people don’t notice. Most people won’t talk about it —mostly because they either don’t understand or simply don’t care. I mean, some of the looks and comments I’ve received are mind-boggling.

It bothered me for a long time and some days, it still does. I don’t understand why people can’t just let me take my medicine and move on. I hate that feeling when someone stares as I lift up my shirt and shyly inject some insulin into my belly. It’s like, most of the time, I can’t even celebrate the victory of a good glucose result, because I know the next crisis is just a few meals ahead. So let me have my moment because it’s far too easy to let this shit get me down.

It’s an everyday battle.

But you won’t see me stop.

I keep going. I keep fighting —even though, I’m overwhelmed. Sometimes I feel as if I’m in control like I can handle it. And I am, but it’s a lot. And it’s a lot that I’ll have to deal with for the rest of my life. I’m literally managing a disease that will never get better. Sometimes I beat myself up for the highs and the lows, but deep down I know I’m doing the best I can. I mean, I’m living with an illness that can cost me my life, yet instead of empathizing, society blames those with it.

As if it’s my fault that my immune system decided to attack my pancreas. Unfortunately, there’s a huge misconception that eating too much sugar causes type one diabetes, which for the record is an autoimmune disease —meaning, it’s not preventable. And it’s because of this, that far too many cases result in a misdiagnosis and sometimes even death. I’m saying all of this notwithstanding the fact that type two diabetes (insulin resistance) can be contributed by eating unhealthy, excessive weight, and inactivity.

You know what though? That’s not always the case.

But that’s usually what people think. For me, these days, it’s not unusual to come into contact with someone who is misinformed. I, for one, did not know anything about type one prior to being diagnosed. Plus, it’s invisible. Besides the effects of high and low blood sugar, there are no outward signs. To the rest of the world, I don’t look sick. So I’m sure it’s hard for you to understand all of this.

If I can be honest though, nowadays, I don’t care because I found my new normal. I don’t need your approval to survive. Yes, I do need help but I’m done people pleasing. I’m too tired for that because today, I live for me. I’d say one of the biggest things diabetes taught me —is that I’m important and no one is going to fight for me but me. So hear me roar. Because you really don’t know how strong you can be until you don’t have a choice.

Like I don’t hate needles anymore or at least as much. I still have to use one every single day but you know what? That’s OK. I mean, how would your life change if you were diagnosed with a life-threatening disease that you were told was incurable? Think about that for a second. Maybe you’d want to notice? Maybe you’d want to understand? Maybe you’d want to talk about it and maybe you’d even care? I would. I do. I always will.

Because yeah, I’m a diabetic. Sometimes, I go high or I have low blood sugar. To this day, there are moments that I wake up in a panic because it feels like I’m dying. So I’ll sit in the dark with my little juice box and drink myself back to life. You know what though? That’s OK. Because we all have our weird little things we do in order to stay alive. And maybe one day, I can say, I used to be a type one. Until then though, I’m going to keep doing the things I thought I couldn’t do. I think you should too.

And even though I’m tired, you won’t see me stop. So who’s with me?

xoxo,

macey bee

Sources:

https://www.huffingtonpost.com/entry/type-1-diabetes-life_us_5a2a00c9e4b0d7c3f2622165

http://www.diabeticlivingonline.com/well-being/stress-relief/diabetes-distress-how-to-combat-feeling-overwhelmed-and-stressed

https://thediabeticjourney.com/no-one-is-aware-of-diabetes/

http://insulinnation.com/treatment/shameless-public-displays-of-diabetes/

https://thediabeticjourney.com/i-wont-go-down-without-a-fight/

Originally published at waytomuchtoosay.wordpress.com

The Thrive Global Community welcomes voices from many spheres. We publish pieces written by outside contributors with a wide range of opinions, which don’t necessarily reflect our own. Learn more or join us as a community member!
Share your comments below. Please read our commenting guidelines before posting. If you have a concern about a comment, report it here.

Sign up for the Thrive Global newsletter

Will be used in accordance with our privacy policy.

Thrive Global
People look for retreats for themselves, in the country, by the coast, or in the hills . . . There is nowhere that a person can find a more peaceful and trouble-free retreat than in his own mind. . . . So constantly give yourself this retreat, and renew yourself.

- MARCUS AURELIUS

We use cookies on our site to give you the best experience possible. By continuing to browse the site, you agree to this use. For more information on how we use cookies, see our Privacy Policy.