If shakespeare were diabetic that is what he would ask. I am so confused. When making a decision about whether or not to eat, I find myself consulting my CGM instead of asking myself if I’m hungry. This ends up with late afternoons where I have had just a small breakfast… why do I feel faint? why do I have a headache? why can I not concentrate well? …ummm…. maybe because a kid yogurt and a waffle are not enough to power my brain and body all day. Yeah, maybe that’s it. What’s that you say? I’m low at noon? I have a solution… let’s eat a whole chipotle burrito bowl and some chips and not take any insulin… let’s definitely not treat the low and then wait to normalize and then dose appropriately for the food I’m eating… no, let’s not do that, let’s just eat the whole burrito and then deal with it later. #fantasticplan #not
I’m really having trouble with food lately and it bugs me because I was never that way. I’ve had the occasional “I’m so fat” thoughts, but no more than anyone who lives in a beach city in CA… you would second guess yourself too if you lived in the land of models and beach volleyball players, it’s like a parallel universe… I digress. How for someone so responsible in nearly every aspect of my life, meticulously taking statistics and experimenting with behavioral change to improve my life and habits in other realms of my life — can I mess up/ignore the part of my life that actually comes with built in numbers, statistics and tracking? Maybe I’m tapped out. Maybe I’m in denial. Maybe I’m still angry. Maybe I’m defiant. I think it’s probably a little of all of those. For whatever reason, I can’t seem to motivate myself around taking care of my diabetes… I snooze my CGM like it’s an alarm clock, even though I know (when thinking rationally) that it is an important tool, there to keep me safe, not just be another irritating beeping device in the over populated world of smart devices. But I guess there is the most important contingency, “when thinking rationally.” Not only can I not claim that on a regular basis on my own, add in diabetes, and BiPolar and it’s a rare day that I’m rational all on my own… more days I can talk to myself and come to a rational conclusion, but there are a significant number of days where my sanity could definitely be questioned, let alone my ability to think rationally. So I guess this post ends the way most of my posts have been ending recently… help.
I emphasized the “MY” in the title of this blog entry because I am looking for MY people and not *Diabete’s people. Recently I started a group on facebook called Type 1 Diabetes, you suck. I thought you were just for kids?! while I have found a few all encompassing Type 1 support groups and blogs that I really like, namely I hate diabetes (type 1) on facebook, but there are some peculiarities to having been diagnosed as an adult in our 20s and 30s — and I am still looking for people to share our experiences, advice, and support with who are in this more specific situation.
When I was first diagnosed I found support and camaraderie through blogs specifically t1dactiveliving and Steffi — now I am reaching out again looking for more people who share the experience of being diagnosed as an adult and figuring out the basics on their own — as opposed to adults who have grown up with t1d. If you’re reading this and it applies to you, let’s be friends, if it doesn’t apply to you, let’s also still be friends — I guess what I’m really still saying is “help.” This isn’t what this post started out as… I wanted to reach out to help build this community, but turns out, I’m exactly where I seem to always come back to… needing help — which really I guess is the same thing. Maybe I’m just feeling more vulnerable about it today.
Here’s to hoping that today is a good diabetes day… for me and for you too.
*I have distinguished “Diabetes” from “diabetes” in an earlier blog, but as a quick explanation/reminder…”diabetes” is a disease that I have, that I have no control over, that I work with my doctor to control as best as possible. “Diabetes” is a giant douche bag who comes in and messes with my life on a daily basis.
So, I haven’t run into any particularly t1d ignorant people recently, but this picture was just too good not to post, especially since I LOVE Star Trek! #Dork #NotAshamed I have to give credit to a friend from the I hate diabetes (type 1) facebook page — great find.
In other news, life is okay right now. Yesterday wasn’t great, but I wasn’t exactly being responsible…. so today is a new day, I brought a diabetes-approved lunch with me to work, I had a McD’s sausage biscuit for breakfast, but I insulin-ed appropriately and avoided a spike… rocking in the mid-100s all morning (#GoMe).
I wrote a post the other day on the I hate diabetes (type 1) facebook page responding to an exasperated mother reaching out for advice for her son, and after I wrote it, I had one of those moments where I felt that I should maybe take my own advice, the post was as follows:
I am doing my best. I need to tell myself that more. I am doing my best. Even when I slip up, I am doing my best to live with this, to balance my health, what I am supposed to do, what I want, old habits, “the shoulds,” other people’s wanted or unwanted input, my emotional reactions… all this while being emotionally and physically affected by my blood sugar, something I have little control over — something I try to dominate with insulin, and diet, and exercise, but will NEVER MASTER. I cannot win at diabetes. I can only do my best. As a type-A overachieving perfectionist, this is going to be hard to accept, but I can work on it on day at a time, remembering to be gentle with myself and start each day from the beginning, not carrying over guilt or hubris from the day before. Today I will do my best.
*I realize that the above is a large statement, but hey, if I don’t have a goal, I wouldn’t have anything to strive for
Great description of a low and an even better picture… during one particularly bad low I expressed my feelings by saying “I want one thousand waffles” (said in a spacey drone voice) — now it’s become a joke, so I’ll say that instead of just saying that I feel low.
Crash and burn… that’s how I feel about my day so far… Up. Test. Enter into CGM. Breakfast. Enter into CGM. Work. Look at CGM. Feel Weird. Test. #Fail. Eat. CGM. #Fail. Fuck this.
I hate Diabetes. Diabetes is a giant douche bag. I’m going to try to restart my day right now, some how I feel it’s going to crash and burn again, but I guess I shouldn’t go into the restart with that mindset.
Keep Calm… I should just hold onto that part. Wooooo-saaaahhhhhh
I have taken the next step to find “my people.” I have created an open facebook group for Type 1 diabetics diagnosed as adults in their 20s-30s, this is not meant to be discriminatory against any other members of the t1d community, but to help share experience and hope across a group with a similar life obstacle. If this applies to you, I hope you check it out and join/participate as it feels right for you.
“Diabetes” or “diabetes” — there is a distinction.
diabetes is a disease that I have, that I have no control over, that I work with my doctor to control as best as possible. Diabetes is a giant bitch who fucks with my life on a daily basis. Who decides when and where I can do what and for how long. how I feel and how I act. who says I can’t have chocolate for breakfast, even though I’m an adult, and punishes me if I do it anyway. When I get mad, I’m mad at Diabetes. diabetes is something I can cope with, something that I can get better at taking care of. something that is not my fault.
Diabetes is a douchebag. diabetes is a disease.
Yesterday was a bad day — ranging from a low of 48 all the way up to a high of 390, needless to say, I was wiped out. Now today, I have a diabetes hangover. I’m exhausted, dehydrated, and completely fogged out. I want to share this because it has been a repeated experience for me — one that has been both consistent and consistently frustrating. I am fogged out and exhausted. I’m not in great shape to be doing anything, let alone writing or doing anything that requires brain power, but I need to feel better and writing here helps me to feel better.
Feeling like this, this hangover, makes me so angry at diabetes. I’m doing my best (sort of) and I get screwed. Let me qualify the “sort of” — I am trying to do my best, when I’m not throwing internal tantrums. When I’m throwing a tantrum against myself I eat whatever I want, whether or not I’m correcting, if I am correcting I over do it. If I am hungry, I eat whatever I want and then wonder why I feel like shit and am so exhausted that I need to nap (see: high blood sugar). Or I don’t eat because my blood sugar is fine and then I have no food to properly run my brain and I feel like shit and am so exhausted that I need to nap (see: high blood sugar). Then I realize that either option ends with me feeling like shit, exhausted, and needing a nap… so what’s the point in trying. Fuck this. On the few days that my blood sugar does behave, it seems to be only because I am consumed with getting right… and I can’t live like that all the time. So it seems that my options are a) Make my life revolve around my diabetes and have good numbers or b) Have a life and not have good numbers. I know that there should be a clear answer, but I don’t have one. I am not willing to have my life revolve around diabetes, just like when I got sober, I managed that in order so that I could live my life and I intend to do the same with diabetes, I will take care of it, but only because keeping it in check enables me to live a fuller life. So, no Diabetes, I refuse to make my life revolve around you, but I also need to control my numbers, so that I don’t die and/or suffer terrible complications… so right now it feels like I am at an impasse, but I refuse to pick one of the offered paths. In the least romanticized way, I have to make my own path. A path that will include not dying and having a life… I’m not sure what that looks like, so maybe I’ll just wander around in the “woods” until my own steps create a path behind me… this is way to much symbolism this early in the day, or possibly ever. Maybe my diabetes hangover is making me delirious… wait, let’s make that a statement. My diabetes hangover is definitely making me delirious. Fuck Diabetes. Fuck all of this. Fuck food and blood sugar and testing and headaches and hydrating and CGMs and marshmallows and lots of other things — because I’m angry and I need a direction to point it at, even if the marshmallows haven’t done anything… I don’t care.
And now enter the dull headache, starting behind my eyes, I know given some time it will creep forward into my temples and my ears… this afternoon is going to be fantastic*.
I am sick and tired of the entire Western world knowing how my kidneys are functioning. — Astronaut Jim Lovell, Apollo 13 Movie
I’m not sure why that has quote stuck in my mind, but that’s what I think every time when some random person asks me about my blood sugar. I don’t understand why my blood sugar should be public information. No one else has to share personal medical information randomly throughout their day — it would be like if I walked up to someone and asked “Hey, what’s your cholesterol?” — they would look at me like I was crazy. Why is blood sugar any different? I’m not talking about loved ones here, that’s more understandable, but random people… that shit is just weird.