Things NOT TO SAY to a Type 1!

Reminder: DIABETES IS AN INDIVIDUAL DISEASE.

That means that two people with the disease can be affected totally differently. That one fact is not very well known, and it makes things very difficult sometimes. Especially when people make comments about care, treatment, habits or anything else that a type 1 is doing. They're always trying to help, but they don't usually know how EVERYTHING affects the diabetic. 

I respect people who are trying to help me, but sometimes it makes me feel like they think I don't know how to take care of myself. That is hurtful. So in light of that, I thought I'd write about some of the things I DO NOT like to hear. Unless people know me (personally) well enough to know what affects me... 

1.  What's your blood sugar?
   I hate this one. It makes me wonder what I did, and it makes me feel stupid. Always! I know that for most people that's not the intention, but I literally feel stupid every time someone that is not close to me asks me this question. Probably because I can act pretty stupid when my sugar isn't right, and I know that. So knowing that, I wonder what I did that made them think I am stupid. I don't think anything is worse than when people see me as less of a person (or stupid) because of my disease. 
2. You can't eat that, you're a diabetic.
   I assure you, I am completely aware that I am a diabetic. That does not mean that I cannot eat. I just have to be a little bit more careful than a lot of people. I can eat everything you can, and if you tell me not to, 9 times out of 10 I will eat it anyway just because you told me not to. I know what the consequences of my actions are and how different foods affect me--most people do not. So it drives me crazy when people think that they know enough about diabetes or me to tell me what I can and cannot eat. 
3. Have you eaten?
   Me: No, Mom, I haven't eaten. Sometimes I'm just not hungry. (I am actually talking to my mother, I'm not being disrespectful. Sort of.)
   Mom: Taylor, you are not allowed to go out on any more unchaperoned dates unless you will actually eat. Either I'm having a talk with your date, or I'm going with you so I can feed you when you are stubborn.
   Me: *Forces food when not hungry*
   Seriously, though. I hate when people ask if I have eaten if they are not close to me. I know when I'm supposed to eat, and I'm on a really weird food schedule because of jobs. If I eat off of my schedule, it messes up my diabetes in an terrible way. I don't like having to explain my food schedule to people. Also, if I have eaten that conversation usually leads to "You shouldn't have eaten that, you're a diabetic." 
4. I'd rather have you high than low.
   I've seriously had teachers and extended family members say that to me. What they really mean is, "I would rather have you high so that there is no possibility of you being low." Do you realize how that feels? They say that and then feed me when my sugar is perfectly normal--or try to, I don't do that anymore. But they do it because they're afraid of the immediate consequences of a low. No one considers the long-term consequences of the highs that I will have to deal with after they're no longer responsible for me. Also, having high blood sugars means that I am very ill. I feel so sick when my sugar is consistently high that I can't function properly. It's like they think that being high will not affect me at all, but people who do not know me do not understand. 
5. Oh, yeah. I know about diabetes. My best friend in kindergarten had diabetes.
   Just because someone you have not spoken to in 30 years had the same disease that I do does not mean you know diabetes. It doesn't even mean that you knew your friend's diabetes. It means that you have been around the public part of the disease. There is a lot of stuff that happens "behind the scenes" that you don't even want to think about. 
6. Hey, do you want to go do.... ANYTHING SPONTANEOUS.
   I actually have to plan around things I have to make sure that my sugar is going to behave and I have to make sure that there will be someone there that can take care of me in case it doesn't. Anytime I have something going on, there is a lot of planning involved. Especially if I have to drive. Just because my sugar is good right now, does not mean that it will be good when I have to drive home. 
7. Yeah, you can do that. Just don't tell your parents.
   There are so many reasons this bothers me, but diabetically speaking, my disease will tell on me. Just because I don't tell my parents I had that piece of cake when my blood sugar was already high does not mean that diabetes doesn't know it. It will make me sick for way too long to be worth it. This applies to so many different situations. 
8. Well, I bet diabetes doesn't bother you anymore since you've had it for so long.
   Diabetes will always bother me. It will not matter how long I've been dealing with it, it will always be hard. 
9. Shouldn't you have that under control by now? You've been dealing with it your whole life.
   That one makes me very upset. Not only are you reminding me I am a diabetic, you are also reminding me that I am terrible at it. Or at least you think I'm terrible at it. Fun fact for you: there is no such thing as "under control," it doesn't matter how long you've had diabetes. It will be eternally unpredictable. I'm doing the best I can, and unless you deal with it everyday like I do, you don't get to judge me on how "under control" I am. Not allowed. 
10. Hey, I heard that if you eat (...), your diabetes will be cured!
    Yeah, I saw that on pinterest too. There's a lot of truth to that whole "don't believe everything you see online" thing. There is no cure for my diabetes. It is treated with insulin, but insulin is not a cure.
11. You're fine, you have insulin. You're basically cured.
    No. Insulin is not a cure. Insulin is life support. Until the day when I can eat what I want, when I want, and not worry about it killing me in the middle of the night, I am not cured. Insulin makes the disease manageable, but it does not make me free. 
12. I hate needles. I couldn't live with that.
    Please don't remind me that I have a needle stuck in me 24/7 so that I can survive, and another one stuck in me to make it easier for me to manage the diabetes. Thanks. Also, I guarantee you that if you had diabetes, it wouldn't matter how you feel about needles. You would do what you have to in order to stay alive. It really sucks that there are needles involved, but it's better than sitting in a hospital room waiting to die. 

There are a ton of other things I hate to hear, but those are the ones I can think of right now. Please remember this if you know someone who is a diabetic. Try to think of how what you're saying might affect them, or how it will make them feel. That sounds dumb, but I'm pretty sure most people wouldn't think about how "I hate needles" makes me feel. It's also different depending on the person. In most cases, though, ask us. We don't usually bite and we like to tell people about our disease. Everything that you know about our disease makes life safer for us, so don't be afraid to ask questions.

Invisible Pain

I haven't written in a while, but there is a good reason for that. There is no simple, easy way to say exactly what has been going on. So I am just going to tell the truth: diabetically speaking.

Alright, so usually diabetes can come with a plethora of other autoimmune or endocrine diseases. I am blessed with hypothyroidism and hoshimoto's disease in addition to T1D (although neither are because of T1D).  Lots of people don't know what those are, so I'll explain them. (I also have potassium and iron deficiencies, but a lot of people know what that entails. If you don't, feel free to search it or send me an email and I will tell you all about the side effects of those!)

The thyroid gland controls hormones. When it is "broken," there are an overabundance of things that are also broken inside your body/mind. It is not as much of a physical disease as it is an emotional disease. Hypo-thyroidism happens when the thyroid gland does not work enough. Google defines it as "abnormally low activity of the thyroid gland, resulting in retardation of growth and mental development in children and adults." Hyper-thyroidism is the opposite, where the thyroid gland works too much. Hoshimoto's thyroiditis is defined as "a disorder in which the immune system turns against the body's own tissues. In people with Hashimoto's, the immune system attacks the thyroid." Each comes with a different set of side effects. In my case, I'll suffer from depression, anxiety, "brain fog," extreme fatigue, lack of sleep (not associated with the extreme fatigue. I will have one without the other), brittle hair and nails, an extreme lack of motivation and many other side effects. The longer the problem persists, the more of an issue it becomes. I was a very poor patient, so I was suffering from the majority of these side effects before I even realized that I had been forgetting to take my pill. It had been more than a month since I had taken a pill, so my disease was destroying me. Of course, because of everything that hoshimoto and hypothyroidism messes with, it was destroying my diabetes as well. My broken thyroid and broken pancreas made me feel incredibly "broken" spiritually, physically, and mentally. That's the fastest way to describe it. 

At the start of all of this, I was working two jobs and going to school full-time. That meant 40 hours a week of non-stop work, and an additional at least 20 hours of school work. That left very little time for me to tend to my disease. As you can imagine, diabetes DOES NOT like to be neglected. My sugar started a small, semi-controllable roller coaster. That wasn't too bad until I neglected my thyroid too. About two weeks into forgetting my medication, literally all of my free time was spent lying on my bed staring at the ceiling. I had no motivation or desire to do anything else. I didn't even want to check facebook or do some other mindless activity. I just wanted to be left alone. Then my school work started slipping until I was two weeks behind in most of my classes, and I had to quit one of my jobs. After I did that, I realized that I was behind on medication. I started taking my pills again, but it's difficult for me to find a good time to take those. They have to be taken on an empty stomach and at least an hour before eating. My problem with that is I like food. I can't take it in the morning, because I have to eat breakfast to start my day properly (and I might wake up with a low blood sugar). But I can't take it at night, because it gives you a burst of energy that makes it impossible to sleep. Actually, at this point it shouldn't matter because I haven't slept more than three hours per night in about two weeks. I set a clock for 3am (ish) or I ask my parents to wake me up if they are still awake then. If I take my pill then, I don't have a problem going back to sleep. That works well.

Because hypothyroidism is even less known than diabetes, I want to be completely honest with how this is making me feel. People don't understand what it does to you. I didn't understand what it could do to me. So, knowing that, I want to share briefly what has been going on inside my head for the past month or so. Depression was a big problem, but that isn't really a great word for it. It's not like I had thoughts of suicide or anything like that. I just felt unnecessary, unwanted and like a waste of space. I felt no drive or ambition for anything. Getting out of bed felt completely impossible most days, and some days I would lay in bed until forced to move. I wasn't sleeping, I was just not wanting to be. Diabetes was all over the place because everything affects diabetes. That made me feel very sick a lot. My balance was completely gone and I had very little ability to judge distances. Not long distances, but like steps. Stairs are scary when you are having a hard time judging how far to lift your foot and your balance is off. I cried a lot. Not for any particular reason... I just couldn't figure out what was wrong with me. It was a slow decent into madness. Everything hurt, too. My legs, my sides, my arms and shoulders and head. By the time I got home from work, I would go straight back to bed because I was out of energy from faking happy. (Something I have learned, DO NOT EVER fake happy--at least not with loved ones.) Mom and my sister would get mad at me, or something, because they felt like they were getting leftovers of my time and my presence. In all honesty, everyone was getting leftovers. Even I was getting leftovers.

Actually, I can describe it all in one word.

Pain. 

Emotionally draining. Cognitively draining. Physically draining.

The physical pain did not bother me. I can deal with physical pain. It was the emotional misunderstanding that was so stressful. I don't like to not be in control of things, and I felt like I was completely out of control. 

I kind of had to learn that I'm never really in control I guess. God is. He uses diabetes and other things to remind me of that occasionally, and it was just time for another lesson. Everything became a lot clearer after I surrendered control to Him and stopped trying so hard. 

I'm getting back to "normal" now, so I have more desire and more ability. I don't have to fake happy anymore, so that's good. Some things I didn't even realize were wrong with me are starting to get better--like the distance I had begun to create between me and humanity. Sometimes you just can't even tell what's wrong either because it's a slow decent, or because there's so much wrong at one time. Whatever. I'm glad it is finally going away. 

I wanted to write about it for several reasons. First, because I wanted my readers to understand why I had been absent. Second, because no one really sees this kind of pain in people. Physical problems are easy for others to see, but it is the invisible pain that is usually underestimated or unseen. Adding to the problem, a lot of people do not know very much about diabetes or many other autoimmune diseases, such as hypothyroidism and hoshimoto's disease. If people don't know much about it, it is impossible for them to understand everything that the disease entails. 

***DISCLAIMER*** 

I don't want to write this for a pity party--PLEASE DO NOT PITY ME. Everyone has their own battles that they are fighting, so respect that. I just wanted to raise awareness as to what all these diseases can affect. 

Working With Diabetes

One of the more painful truths about living with diabetes is that it makes it difficult to find a job. There are several reasons for that. No employer wants to deal with the "special attention" a diabetic gets to have. Employers don't like to keep up with diabetes (especially brittle diabetes) after a diabetic is hired, either. They don't want to deal with an inconvenient low or high blood sugar, or with the possibility of an employee being dangerously low and passing out on the job. That has my experience so far--mind you, I've only worked in retail. I cannot even begin to fathom the difficulty in getting a job as a nurse, officer of any kind, "normal" 9-5 job, etc.

My first job wasn't so difficult, because I had known the manager from Church before I was hired. He also had another diabetic working for him, so he already knew how to handle diabetes in a work setting. That was a painless experience, for the most part. The problem had been trying to find a job in the first place. It took me 6 months to find someone who would hire me, mostly because employers feared my disease. 

After I left my first job, it took me 6 months to find a new job. I didn't know anyone at this second place, but I bothered the management until I got an interview and eventually they hired me. I worked there for only seven months because it totally destroyed my diabetes. They were not diabetes friendly at all, and they treated me like I could choose when my blood sugar bottomed out or went so high I could not function properly. If I had the choice, would I be a diabetic? Nope! My blood sugar used to drop low enough that my dexcom and meter could not read a number, and the management would still tell me I had to wait to take a break. It got to the point that I stopped telling them and just started going to the break room to get a snack (they would not let me keep food or a drink with me at first). One time the assistant manager followed me to the break room fussing at me about whatever was going on. To be honest, I don't even remember what he said because my sugar was that low. Someone figured out what was happening at work and called HR on management, but the problem persisted until it was even more dangerous. Needless to say, I am no longer employed there. 

Six months later, I am very happy where I am now! I enjoy the laid back environment and I love that my coworkers are all trying to learn about the diabetes. If they are nervous about it, they do not appear to be. That makes it easier to control anyway. I had shopped in this store several times before, so I kind of knew the employees. I just didn't know them on a personal level. My blood sugar finally straightened itself out from my second place of employment, and diabetes is not killing me where I am now. I am living a much healthier life compared to where I was before, and I am not stressed out at all. God has blessed me with employers who are not too misunderstanding of what diabetes means. 

I am not incapable! Although sometimes, especially to a potential employer, it does appear that way. I am completely capable of doing whatever I need to do, including working a job. I just have to fight 100 times harder (with some things) than "normal" people do. It's even more difficult when people refuse to give me a chance because they can't see past my disease. 

Just one more thing I want to say for now...