It's been a long time since I have written about my illness on this blog. And I realized why just a few seconds ago, I only want to write about it if I have something somewhat helpful to say.
But maybe that isn't how I should look at this. Maybe I shouldn't feel like "I can only blog if I've conquered something. I can only blog if I have advice." Maybe I can share things that I can't deal with or don't know how to deal with. Maybe that could be helpful too. Because one thing I always feel is alone.
No one understands me. No one understands what I'm going through. No one is sick. No one cares. I'm just alone.
Sometimes I desperately wish that I could read stories from people that are struggling. Sometimes success stories make me angry. Sometimes I wish there was just
one person who hadn't gotten better, or recovered, or was happy. Sometimes I wish there was someone out there who feels miserable sometimes, who is struggling, who cries uncontrollably for no real reason.
Maybe there's someone else out there who feels like that too? And maybe, by some stroke of luck they might find this. And maybe, we can take comfort in knowing that we weren't quite as alone as we thought we were. Just maybe.
I feel like lately I've realized a lot of ways my illness has impacted me. When I was younger, I used to feel like I was fine.
All I have to do is take shots and prick my finger. That sucks and it's painful. But some people have to live in the hospital. I look fine. I look normal. My hair isn't falling out. I just need to take insulin and check my blood sugar. So, I'm fine...right?
People don't treat you like a sick person, because you don't
look like a sick person. You aren't in the hospital every week. So, you must not be sick.
It's just like having a peanut allergy. Something is wrong with you. But something is wrong with almost everyone. We all have our cross to bear.
I think that shapes how you feel about yourself too. For example, I get really exhausted when I go out with people. It seems like other people can just go go go. They'll be out for eight hours and they'll still be laughing and running around. After about two or three hours, I'm basically done. Especially if my blood sugar goes high or low. I either feel unbearably sick and like I might fall asleep standing up. Or my heart starts racing, I get dizzy, and I feel the urge to start bawling like a baby. Only just now have I realized that it's probably related to my diabetes. When I was younger, I would just ignore being tired and try to act energetic. Because nobody understands that. So, you take insulin or eat some lollies and push through.
I remember one time I eating lunch with friends, and my blood sugar was over 400 mg/dl (four times higher than it should be). Plus, the smell of the food my friends were eating was making me feel even sicker. I felt horrible, nauseated, tired, and anxious (Because there's always that fear when your blood sugar is high.
What if it doesn't come down? What if I've developed insulin resistance? What if I go into DKA?).
So, I just sat there with my head on the table, trying to remain calm. The next day, my friends asked me "Why were you angry yesterday?" I tried to explain that my blood sugar was high. So, I felt really sick and the smell of the food they were eating was making me even more nauseated. In the back of my mind, I knew no one would understand. They might say "Sorry." They might believe me that I wasn't angry, but they wouldn't give it another minute's thought. They'd go about their business and maybe feel a bit relieved knowing I wasn't mad at them. But one of my friends said, "If that happens again, you know I'll just go and sit somewhere else with you?" Even now, that is one of the most understanding and caring things someone (aside from my family) has ever said to me or offered to do for me.
Recently, I had to go to an appointment with my endocrinologist and since she works at a diabetic clinic, I was able to get my feet and eyes checked at the same time (because as a diabetic, I'm at risk for diabetic neuropathy (nerve damage) and diabetic retinopathy (swelling of blood vessels in the eyes that can result in blindness)).
So, I spent three hours in the clinic. Getting my blood tested. Being weighed. Being measured. Talking about my medical history. Getting my blood results back. Getting the readings off my pump back. Trying to come up with a way to regulate my brittle blood sugar levels. Having my feet prodded. Having my feet touched. Having eye drops put in my eyes. Slowly not being able to see. Having bright lights shone in my eyes. Trying not to blink. Waiting. Waiting. Hearing results.
The whole thing was traumatic. Especially the eye test. I joked in the waiting room to my mom, "At least I get a free trial of what it's like to go blind." Except I didn't even go blind. I could still see. But I couldn't read a single word on my phone or in a magazine. It was terrifying. I don't really know why it was so terrifying. Maybe because I was relating it to going blind in the future? Maybe because it's just scary having one of our senses taken away? I don't really know.
Then, I had lights shone in my eyes and I had to look up and down and all around, trying not to blink. It couldn't have taken more than fifteen minutes, but it felt like an eternity. Waiting. That's something that really strikes me about being sick. There's a lot of doing. Taking shots, going to appointments, pricking your fingers. But there's also a lot of waiting. Sometimes it almost feels like the doing is just to distract you from the waiting.
Once I left, I just started crying uncontrollably. Nothing really bad even happened. My a1c was 6.9, practically perfect. Nothing was wrong with my feet. Nothing was wrong with my eyes. My blood sugars had gotten a bit worse, and that was scaring me a lot. Even though my a1c was still good (not as good at the last time I got it checked), my blood sugars are brittle. I go high and I go low and it just bounces up and down and up and down all day long. So, yeah. That wasn't so good.
Since I was crying like my dog had just died, my car broke down, and I spilled my ice cream on the pavement. Someone asked me "Did you get bad news?" And I couldn't really say I did. I mean, I did. My blood sugars and a1c were worse, but it wasn't life threatening. The a1c was still good. The blood sugars weren't good, but in the end, the a1c level is what you're really concerned about.
Later I started thinking about it. When you're sick, you get bad news every day. You wake up in the morning and test your blood sugar and it's high. You're still sick. You eat something and feel nauseated. You're still sick. You have a low and get dizzy and are forced to eat something you don't want to eat. You're still sick. You have to schedule a doctor's appointment. You're still sick. You have to be poked and prodded and you have to wait and wait and wait. You're still sick. And hey, one day, you'll be even sicker.
I wish that I could end this saying that I've found a group of perfect friends who are empathetic and understand me, or are patient with me. But I haven't. My friend offering to sit with me while I felt sick still makes my eyes well up.
And I wish that I could say that I've figured out how to deal with people not understanding. That I don't need people to understand, because I understand. And I have enough understanding for everyone. But I don't. I get angry and lonely and I cry uncontrollably.
And I wish that I could end this on an uplifting note and say that it's okay. It's okay that I don't have a perfect group of friends, and it's okay that I get angry and lonely. But it isn't. It's a reality of life. I think it's a reality of everyone's life, regardless of whether you're sick or not, but it isn't okay. And I desperately wish that one day, everyone will magically understand and care for each other. But that probably won't happen. We're only human. So, I guess the most uplifting thing I can say is that, while we might each be suffering alone, I don't believe that we are alone in our suffering.
