Today is the day you get to read one of my personal essays. A writer-friend told me this is a piece I should share immediately should I choose to start a blog (Thanks Bek! www.eatingatme.com). While I didn’t post it immediately when I started this blog, I have chosen instead to post this at the anniversary of a significant turning point for me. Hopefully you might gain an understanding of what goes on in the mind of a Diabetic, particularly, me.
The Highs and the Lows
Diabetes. It’s a word that people like me love and hate. Yes, I said the word “love”. Why would anyone love Diabetes? Especially me, the one who has it?
I have been living with this chronic immune disease since 1987. Type 1 – insulin dependent for the rest of my life or I die. How can this be something to love?
I love it because it’s an identity for me. I label myself with “Diabetic”, and I don’t care who knows about it. I used to be a bit more cautious of telling certain people and being open with it in years past, mostly because there are so many people who are so uneducated about this crazy disease. I can make sense of everyone not understanding all of this, because there are so many different types with so many different treatments, along with so many different stigmas. It’s really hard to keep track of, even for a Diabetic!
I say it’s an identity for me because I am proud. Proud of myself for all I’ve endured and accomplished and the fact that I’m still here amongst the living. Every day I trudge along and experience the highs and the lows – both literally and figuratively – and for that I am proud to call myself a Diabetic.
There are the roller coasters of high blood sugars and low blood sugars, physically feeling sick, the finger pokes to check the blood sugars multiple times a day, giving yourself injections or changing a site and refilling that reservoir for your insulin pump. The occasional kinked cannulas which keep insulin from being delivered by your pump and sending you into a dangerously high level. The inconvenience of forgetting extra supplies in case of an emergency. Hitting a blood vessel by accident when you insert your Continuous Glucose Monitor, sending blood gushing down your leg and leaving a lasting bruise, because goodness knows it will take a week for that to heal! Alarms because you’re running high; more alarms because you’re running low. The constant carb-counting and math to figure out how much insulin to take to avoid a high level, but not too much to send yourself into a bad low.
Can I eat this? Nope, better not unless you want to feel crappy for hours because you’re high… What about this? Ok, but this might create a roller coaster effect later, and I’ll end up low. Did I bring enough glucose tablets with me? Is there somewhere that I can get some orange juice or a bite to eat?
That kind of chatter goes on in your mind from the moment you wake up in the morning to the time your head hits the pillow at night. The more significant complications, like Autonomic Neuropathy. Mine causes low blood pressure.
Oops, darn it…I shouldn’t have bent over to pick that up off the floor (as I’m starting to black out).
Let’s not forget the night-time low blood sugars. The ones that could kill you. Every Diabetic’s worst fear. I could go on, but let’s end there.
There are high and low emotions that follow each situation. The high emotions are when your meter gives you a normal blood sugar reading and your Continuous Glucose Monitor is consistently quiet with no alarms; when you visit the Endocrinologist for a check-up and you learn your A1c results are below 7; when your blood sugar doesn’t drop when you exercise or get more of a workout than you had planned; when you decide to eat that snack and your blood sugar doesn’t skyrocket; when you feel like you finally have energy one day. And the best is when you get to wake up in the morning to live another day. The low emotions bring on the more depressive thoughts, and there are sometimes more lows than highs here. You blame yourself for a high blood sugar; a finger prick or injection hurts; you can’t eat when you’re famished because the blood sugar is just too high. You go rounds and rounds in your mind trying to figure out what caused that high blood sugar, and nothing makes sense. You just get so darned tired of it consuming your life and every thought every single day, 24/7. There is no escaping it. Your brain needs a break. You just want to be normal, like everyone else without a disease or sickness.
Different Breeds, Different Needs
Of course, I am speaking for myself here. I know plenty of other people with different forms of Diabetes, and they all feel differently and handle things and their feelings differently. That doesn’t lessen the facts and the things we all go through. I know some Type 2 Diabetics who are in complete denial that they even have the disease; they don’t check their blood sugar, and they eat crap. I’ve definitely wanted to give them a piece of my mind sometimes, but who am I to judge? I’m nowhere near perfect, but I do try my best. I also know other Type 1’s who don’t spend their time talking about it and advertising the fact that they have it. I completely understand, as we can suffer some serious discrimination sometimes. I just learned recently that a dear friend found out she has Gestational Diabetes. This is actually an area I’m not as familiar with in regards to how it’s treated. She is worried that she’s not going to have a perfect blood sugar reading every time, and that one bad reading could kill her baby, because the doctors have scared her into thinking that way. But she’s trying the best she can to do everything that she needs to do to help herself and the baby get through it.
You’re On Your Own, Sweetheart!
Support. Let’s face it…we all need it in some form or another. Again, to each his own, and everyone is different in their needs. But when you have it, even in the smallest amounts, it certainly is one of those highs.
When I got diagnosed back in the late ’80’s, there wasn’t a lot of it. Even though that diagnosis took place 28 years ago, it was a whole different world. We all just didn’t know enough, and compared to now, everything was so archaic. I was already 16 years old. I got the best medical care that I could have, and they even suggested support groups. I am definitely not the support group type. Not at all. Today, in the world of Facebook and social media, there are groups you can join, and people chat about their issues. I guess this sort of thing replaces a support group meeting, except there’s no mediator in these groups to keep everyone civil. This could be good for some, but I realize that for me, it really isn’t. Some people are very supportive of others, but in one group in particular, it just wasn’t productive for anyone. So I left that group. We all have to deal with the negative every day – why do we have to listen to people who are not supportive when we are brave enough to ask a question or tell everyone about our issue? I also left because I felt as though these people just wanted a quick answer for their issue, and no one wanted to talk to their doctor to get the right one. A good portion of the members took matters into their own hands before contacting their doctors for advice, and then boasted about it on the group’s forum. I agree we all have to be our own advocates at times and do what we need to do, but some of these people were going about it all wrong. How do others applaud this kind of behavior? I didn’t want any part of that.
After my diagnosis, my parents learned as much as they could to try to help me, and they did the best they could. My family and friends are far from experts, but most of them learn the basics and I always got the love and support. I always knew it was my weight to carry, and I chose to learn what I could on my own without burdening others. No one else could do this for me. I was ok with that. I still am. I am grateful for those that know me enough to know when something isn’t right, such as an episode of low blood sugar, and offer help. I am grateful for any encouraging words, when I’m trying to blame myself or wondering what the heck I did wrong. Give me a hug when I’m down and tell me it will be ok. That’s really all I need.
But on those nights when you wake up in the middle of the night feeling an episode of low blood sugar coming on, or you realize that you’re already low, I’ve learned that I may not get that help I need. I learned this one the hard way. I will never, ever forget it.
Beware The Ides of March!
It was just after midnight, on the Ides of March, almost 4 years ago. How ironic, right? Beware the Ides of March! I woke up, and my husband was in the bed next to me, sound asleep. I was feeling something was off, and it didn’t feel major, but I drug myself out of the bed and went to the kitchen. I checked my blood sugar, and I was 42. I was certainly pretty low, but I was barely feeling it, and had been at that level loads of times and I’ve managed just fine. No big deal, but I thought, ok, time for some orange juice. I grabbed a glass out of the cupboard, got the orange juice out of the refrigerator, and started to pour…and that’s when it hit me. I had better get this orange juice down. I took a sip, and I started choking because I couldn’t swallow. In the blink of an eye, I had already lost control of those basic functions! Everything was going black and fading away. Next thing I knew, I was opening up my eyes and noticing I was laying on my side on the cold tile floor, looking into the light of the open refrigerator door. I had no idea how long I had been unconscious. I sat up, dazed, and when I could pull myself up off the floor, I started crying. That’s when I felt the most alone. Even though another human being was in the same house, no one knew where I was or what had just happened. Had I not miraculously choked down that one sip of orange juice, I would probably not be here to tell this story today.
This was my eye-opener. No matter how much support and love you get from others, your self is the one you have to count on, and even you might fail. There isn’t a support group or another human being that’s going to get you out of that one. It could happen any time, anywhere, and the middle of the night just happens to be the worst time. There have been many nights of lost sleep before and after this occurrence. Who knows if one of those nights, low blood sugar will hit in my sleep, and won’t allow me to wake up to treat it? Every Diabetic’s worst nightmare. But you have to accept it and do for yourself what you can to avoid it. It’s all you can do. You can’t live your life not sleeping. If the nightmare is going to happen, it will.
After my “near-death-experience”, I still have a fear of closing my eyes at night and wondering if they will open again in the morning. Each time they do, I am grateful for another day, and every single one of those highs and lows are worth it.