It is very different being a diabetic v. caring for a diabetic. Actually, I guess I’m not really qualified to say that, as I can only speak as a diabetic, but what I can tell you is that it irritates the hell out of me when I read stuff written by parents that waxes on about how hard it is to deal with their kid’s diabetes. fuck you. I’m not a parent. I know there are things that I don’t understand about that relationship, responsibility, position, but I can tell you that as a diabetic, i.e. the one who will actually die if I fuck something up, I have a really hard time feeling sympathy for an onlooker. I know that is harsh. I know that there are people in my life who have worried about me, had to watch me go through things that suck, watch me behave in ways that might not necessarily be the “best for me,” wonder if I’m going to be okay — and if I wasn’t open to hearing their opinion, stand on the sideline and wait for me to figure it out myself, or die trying. I realize that all of this might sound a tad dramatic, but that’s how I feel right now. The other part of this, which it’s taken me longer to get to, is that if I’m honest, I’m jealous of diabetics that were diagnosed when they still had a support system at home. I feel so alone sometimes. Even though I know that I had quite enough arguments with my parents growing up without another thing to fight over, let alone one with such gravity, but I can’t help but think, then I wouldn’t be alone. although… then I don’t have to take direction from anyone either… scratch parents, thank god I wasn’t married, that sounds worse than being diagnosed as a kid — at least resenting your parents is part of the deal, I can’t imagine going through that with a partner. Even the small taste of that I had was horrible — having to worry about another person’s reaction to what you’re already dealing with is a pain in the ass, it’s hard enough for me to deal with me. but then I guess that’s the catch, maybe I am better off on my own — is it possible to care for a diabetic without meddling in their diabetic life/choices/status? if you care, then you want to know, but then where does that leave the diabetic? I don’t need or want to have to report my “status,” even when asked in passing, especially by my parents, I find it super irritating (I know this reaction is not rational or polite). I know that people want to care, or that they do care, but rather than care, I wish they would just try to understand rather than try to help. Unless you can magically fix my pancreas you can’t help me… honestly, even my endocrinologist can’t really help me, all this shit is just a massive guessing game, so could you just be there? Just stay still, and love me. that’s all I need, and that’s all I ask.
So I knew I was having trouble with my sugars, I figured my dexcom read out wouldn’t be great, but I wasn’t prepared for this… my A1c went from 6.9 to 8.0 over 4 months. Now, relatively I guess it’s not terrible, but my doctor’s reaction was the thing that blew me away… you would have thought my A1c had doubled, and she’s making me come into see another PA (not my normal one) next month… so every month, instead of every three… I objectively accept that this makes sense, my A1c jumped so they want to keep a closer eye on me… but I’m not pleased. I’m not pleased with myself, with being monitored more closely, with being treated as a petulant child, with acting like a petulant child, with feeling like an idiot, with feeling exposed, and alone. Objectively, I can see this for what it is, I was away from home, my numbers haven’t been great, my doctor is on my side, she’s there to help me — but it doesn’t feel like that, I don’t want to be told what to do. Coming out of that appointment I resolved to do better, I don’t want to be told off again — I’m a fucking adult, but now away from home once more, I just had half a bagel… I know it’s not terrible, but I didn’t really want it, I was just working in the kitchen and my sister had brought them in from NYC, I mean they are good bagels, but I wasn’t even really hungry, they were just there and that’s 40-ish carbs that I didn’t need, didn’t really want, and now will be paying for the next couple hours, if not longer than that. And guess what’s for dinner, fucking pizza… self-control at night, I think not. This blows, I want to go back to LA, at least when I’m home I control the food that is in my apt. Oh yeah, did I mention my weakness for christmas cookies? #fml
I had a surreal feeling this morning, walking through my apt — I heard the tick of my insulin pump, and for the first time I can remember I had no feelings about it. I noticed the sound, registered it and then kept going. It was a few minutes later that I realized what had happened. that diabetes had become a passive part of my life. my life is my cover photo. in the midst of the rest of my life, regardless as to how I feel about it, there is the constant of diabetes.
Yeah… this is the text chain between me and a very supportive friend…
Seriously, god bless her… I am making no sense. taking no advice. barely “hearing” anything. also my stomach still feels like shit.
So I tick now… great. Add that to the list of shit that sucks. like a pest. like a time bomb (that’s an obvious one). worse it’s a reminder. everytime I hear it I feel something different. sometimes it makes me feel like quitting. other times it reminds me that I am bionic. that I’m lucky. that I’m blessed. that I’m sick. I’m dependent. broken. baggage to be handled. forgotten. defective. thankful to be alive. angry. why me. fuck that thing again. I wonder where my numbers are. shit. I still have diabetes. fuck diabetes.
Anytime I feel like I’ve got my shit locked down, I’m at work, or with friends, anytime I’m not thinking about diabetes, blissfully ignorant for a short period of time… tick. and just like that I’m back to reality. the shitty reality of this shitty disease that fucks with every aspect of my life. if anything would convince me to go back to shots… at least they stayed silently in my kit… fuck diabetes.
bonus points if you know where this specific robot s from…
Lately I feel like I have the emotional capacity of a robot. It’s easier to just block everything out… so far it’s been one of those weeks where I’m not even sure my dog loves me… it’s ridiculous. I know objectively that that is not true, just as I objectively know that I have feelings, but it doesn’t feel that way. It feels like a giant ice cube has formed around my heart… radiating cold out to the rest of my body… pulling rank and keeping every sense, every cell in line… with the explicit order not to feel anything. I can’t even let go when I’m on my own. it’s like I’m even hiding from myself. I can feel the heat rise in my chest, behind my eyes, but even if I think about allowing myself to express it, my body suppresses it like an automatic reflex.
the only time I seem to be able to express anything is when my sugars are really out of whack because I seem to lose control a bit… that’s when I want to write, that’s when I feel awake… so do I only have feelings when they are triggered by my blood sugar? If so, that’s not good, on so many levels. Not feeling is a problem. High sugars are a problem. Feeling because of high sugars… not good. a recipe for misbehaviour and disaster.
I just wish everything was okay. Or that I could be sure of it. I just want everything to be okay. to be normal. I know… there’s nothing and no one that is “normal,” but seriously, I am so beyond the range of any concept of the “normal” range — I am absolutely dependent on medication to keep me alive, I have two remotes that control chemicals in my body, in addition to prescriptions and an emotional program for living… fuck that. fuck all of it. I hate my remotes, and I hate that as soon as I’ve gotten used to an omnipod placement I have to move it again… and the scarring from these is not going to be good — way worse than the dexcom, I don’t know if it’s because the cannula is larger, but I can tell when I take them off that the injection site is going to take longer to heal that the dexcom ones do… great… now I can just wait on breaking technology (and the FDA) while getting scarred up all over. Great. fucking fabulous. I’m just so fucking mad at all of this… and this is what happens when I let it out, so in order to move through the day to day I have to just swallow it down and keep it all in. Everything related to any feeling, good or bad, has to stay frozen because I can’t handle the feelings at the top of the list. I know how to fake the funk, how to work a room… if I need to share “feelings” for whatever reason, I keep it light, “my family is crazy, I deal with it by sending them pictures of my dog”… small talk about work and whatever I’m watching on Netflix and Discovery channel… that’s the stuff I can say, the shallow stuff… I can’t talk about anything real. One chink to the very thin armour and I’m going to crack. I’m barely holding my shit together. Frozen helps. Right now it’s the only way.
I feel broken for so many reasons. lately it’s been emotionally, in all directions. fighting bad habits and emotional decision making, even though it feels completely wrong. trying to “save” myself with “healthy” choices, that only make me feel sick and ripped up inside. I’m trying to do the “right” thing and take direction from people I trust, but it hurts and feels wrong. even sharing this here feels “against the rules” — like I’m supposed to suffer in silence because it’s “right.” I guess I can try it, if it doesn’t work I can go back to my way. some may call me self-destructive, while looking at my past behavior objectively I am likely to at least admit that they have a point, but at least I was allowed, or chose to follow my heart — not just in matters of the heart, but in matters of everything. I have always trusted myself, I don’t know why, now, I am choosing to put my faith in others when it feels so wrong. If I don’t know what’s best for me, how can anyone else? I’m not a child that needs to eat more vegetables…
I know that I am not an island, I have accepted that. I am dependent on insulin and my machines, I need people that care about me, who I can care about. But all this seems to have been thrown to the wind. I thought I had felt and healed the wreckage of years, with the acknowledgement of my errors and corrective action — I did not see, in full, the damage that needs to be addressed.
I feel like I have been whipped across the back, on top of raised scars barely healed, leaving open wounds on top of previous wreckage… I don’t even know if that makes any sense, but it is the image that comes to mind when my emotions turn into day dreams. I thought I had avoided this, but turns out it was just delayed, almost as if the wounds have been there the whole time, but I just noticed. the healing that I assumed was instantaneous is requiring more time, more care, more attention. and I’m bitter about it. I am done with the past affecting my present. I want to be able to do what I feel is right without having to ask for a double check. a double check of my sanity. of my blood sugar. of my meds mix. I just want to be. is that so much to ask?
When I’m irritated by diabetes related beeping, it is usually my dexcom. make that was. My new least favorite beep is the OmniPod system, both the pod itself, and the PDM (Personal Diabetes Manager…I’l gripe about that name later). Last night I changed out my pod on my own for the first time. It was terrible. In addition to all the expected terrible — hate, denial, resentment, incompetence, I also was extremely annoyed. I was delaying changing the pod because I wanted to know how long I could go with it, and probably under the surface I didn’t want to replace it because I resent the whole thing and was afraid of doing it wrong.
Anyway, I let the pod get to it’s 72 hour/3 day replacement time, and then I let it go through the additional 8 hour buffer period. Through the buffer time both the pod and the PDM beep at you. It took me awhile to realize that it was actually me that was beeping, and that I hadn’t left the dexcom or omnipod receivers behind me (that was a fun two hour game). At the end of the buffer time the PDM screeches until you rip it off, or end it the session with the PDM — if you’re angry and don’t care that it might hurt, you might just rip it off, and it might just be okay anyway. After that lovely musical performance from the omnipod, and a not so delicate removal, I embarked on “installing” the new pod. I’m not sure if “installing” is the word for it, but I’m not sure what else to call it.
the debris from my first “installation”
So, I look at the pod. I go get some alcohol wipes, skin tac, tac away… and maybe a bit of bravery. I go to YouTube and watch some mom do the “installation” with a 3 year-old… if she can do it, I should be able to handle this. I’m an engineer for god’s sake. a fat load of good that’s done me. I stumbled through the process like a t-Rex in the canned goods aisle of a grocery store. it ended with a bang. it hurt more than I expected, I don’t think I had quite enough fat there. and then I was alone. well still alone, nothing had changed. I’m still bitter about having this stupid pump. not having it so much as needing it. and then life went on.
Death: formerly known as diabetes
So this is pretty much how I feel about Diabetes today. I am angry. I started on the pump. I hate it. I had to do the “installation” by myself for the first time. I have never felt so alone. It hurt. It was scary. I don’t have many options for location because I don’t have enough body fat. You read that correctly, being healthy, and not fat, is working against me. This stupid disease, which is supposed to be helped by exercise is actually also hindered by it. So it then doesn’t help that I continue to lose weight. I am trying to eat properly, but I just don’t feel like eating as I was before. I used to snack all the time, I’m not feeling like protein and even with the pump, every meal feels like a challenge, it’s just easier to go without, unless I absolutely need it. A sprite here or there keeps me up and alive. I hate this. I resent the world. I am angry and so sad all at the same time. For the first time in ages I felt like tossing stuff across the room, or taking a lacrosse shaft or a baseball bat to anything within my immediate vicinity. Beat whatever that is to a pulp, until it is broken in pieces, rendered useless to whatever function or task it was made to fulfill. I wish I could take on Diabetes like that. Train hard and then fight to the death. At least then I would have a chance to fight, a hope and a strategy to beat Diabetes — and hopefully leave a few marks and before sending it limping away. I do not want live with this stupid fucking disease for the rest of my life. I am so angry, I’m sick of this stupid shit. I would much prefer a cage match with a worthy adversary, even a seasoned veteran, than living this disease. I want to beat the shit out of this stupid fucking disease. maybe I’ll get a punching bag with “Diabetes” on it. Or maybe I’ll just collapse in the fucking sad self pity that is my life my life at the moment.
I just feel so alone. I know that there is help within my reach, but I fight against it because I want to be able to do this myself. I see asking for help as a weakness. this is a flaw in my character. I want to be able to take care of myself. without the crutch of anyone. whether real or imagined. requested or forced upon me. I do not want to depend on anyone and I do not want anyone in my life to believe that I depend on them. although I know that I will not be happy surviving as an island, my instinct is still to try. I am so glad that I was diagnosed as an adult so that I have the option of being responsible for myself from the beginning. Not having to wean a parent away from the controls. I am a capable adult. I do not want to be treated as a child. It’s juvenile diabetes, it doesn’t turn me into a juvenile.
I want to be true and authentic. I want to appear as I am. represent my true self. this is what I am working towards. In my mind my true self does not include diabetes, but I guess I will have to adjust. fuck everything. I should probably go to sleep now. I just had a whole mini sprite, so hopefully I’ll be high enough to make it through the night without my stupid dexcom waking me up. Rant over. or maybe just paused.
I thought my feet were just dry… I should remember to put lotion on them. I did, it didn’t change. I found myself taking off my flip flops when sitting down and putting the bottoms of my feet on the cool floor, soon the patch of floor under each foot was warm too, so I would move them around… I had never done this before. I’m pretty sure I’m not imagining this. I’m pretty sure it’s diabetes related. I’m pretty sure there’s a name for this. I’m going to pretend it’s not real. that worked for a few days. I think I know what it is, but I’m not going to google it, because maybe it will still go away. It’s not going away. I think it’s neuropathy. What does this mean? Is this what my feet are going to feel like forever? What if they get worse? that happens, right? I thought I was years away from “complications” what the fuck is this?! I’m back in half denial about even having diabetes and it feels like my feet are going to burn off any second. Steady numbers, minimal insulin, and burning feet? WTF. I just don’t understand what I did to deserve this. Why did this happen? the burning feet, the diabetes, the bipolar, the alcoholism… how shitty was I in a former life that I get to deal with all of this? Why can’t I just be normal?!
Or how strong must I be to be able to overcome these things? That is a question one of my good friends would ask me. I would grimace at her and tell her that she’s full of shit. Here’s to hoping she’s right.