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.
The fact that Robin Williams is no longer with us is no longer breaking news, in fact, the world may have moved on entirely. I have needed time to process what his passing has meant to me. Probably the largest gift in this tragedy is that it has opened the door to speaking about mental health and addiction, which largely remains a taboo topic, despite the overwhelming evidence that it is something that many people, in and out of the spotlight, struggle to deal with on a daily basis.
A daily basis, that is the part that I identify with — for me, my mix of diagnoses means that every move I make has to be a well thought out chess maneuver — with every possible outcome considered and three moves forward determined for each. I understand being tired. I have considered giving up. I wonder if there is respite in death, or if you take your neuroses into your next life. It takes a lot of work to be the self that I have to be for other people, at work, with friends and family — it’s not that I’m being fake or presenting a facade. It just takes work for me to be around people. Thank god I live alone, sometimes I feel like I collapse emotionally upon entering my apt, overwhelming relief that I can just be… if that’s happy or sad or depressed or melancholy, it doesn’t matter, I can just be, without need for explanation, justification or even communication.
I can’t imagine how emotionally draining being all of those amazing characters must have been… each one brought to life with his creative energy. An incredible outcome, but not without immense effort. I am in awe of the his work — and of anyone who continues to navigate the world with any similar disposition as part of their story. Faith without works is dead.
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.
Recently, friend quoted me back to myself, she said that I told her to “celebrate everything,” that everything could be a victory if you wanted it to be… her words coming back to me were inspiring, even more so because she was able to help me with the same words with which I was able to help her. Amazing shit. Those words continue to help me. Fine, I snoozed my dexcom and didn’t have a juice box the first time I heard it, but I got up when it went off the second time — that is something to celebrate. I may not be scoring 100%, but I DON’T NEED TO BE PERFECT — I should really write that about 20, mmmmaybe 2000 times, then maybe it will sink into my head. I need to learn to accept my best as my best and not set the bar so high that I feel like a failure everyday, with anything and everything… not just diabetes. I am an imperfect person. Sometimes I feel like that statement is a surprise to me, or a statement of failure, like everyone else has their shit together and I’m the only one struggling — with everything. Let’s face it, pretty much everyday is a fucking struggle.
I have been using the my Sugr app (very cool) to track my sugars and insulin, I’ve not been perfect about entering my numbers, but the reason I’m telling you this is because at the bottom of the screen where you enter your BG, Carbs, Insulin, etc. there are different icons to indicate which meal it is, how you’re feeling, what you’re doing… this has forced me to think about how I’m feeling several times in a single day, rather than ignoring it for weeks… pretty much every entry I would select the “stressed” emoji, to the point where it made me question, “Am I really stressed out all the time?” — the honest answer is yes. I feel like there is something oscillating in my core at all times… it’s been that way for so long it’s my normal. I don’t think that’s good. I’m going to try to change that. If fear and faith cannot coexist, then I just need to have faith that I am going to be okay. This is advice that is easy for me to give, but very hard for me to live. So this time I’m going to take my own advice and celebrate everything. Look for it on Instagram @sophiethacher — I’m going to try to post a #CelebrateEverything everyday…
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.
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.
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.
Today I really don’t have anything interesting to say, just a pretty standard “You suck.” Because you are in fact terrible. You are a disease that isn’t going away. You can’t be conquered or fixed (I am not willing to open the door for Hope — for something that may never come). Every time I think I may have at least found a way to sometimes peacefully co-exist with you for some length of time, you just laugh at me and find another aspect of my life to fuck with. Like I said, nothing to interesting to say, just a polite “Fuck you — please leave.”
I say this knowing that you will never leave. Even if by some miracle there is a device or a cure that relieves the physical symptoms (and I said I wouldn’t open the door for Hope… there goes that), I will forever be an emotional diabetic… my blood sugar and what it affects, will forever be a part of my thinking… I will never fully trust my body or any device to monitor/stabilize/control my blood sugar ever again.
Diabetes is never far from my thoughts — Do this. Am I low? Finish that. where’s my CGM? Feed the dog. Blood Sugar. Call home. I need to eat something, or I’m going to crash…. this is my inner monologue, this is my life. I say that and then I question it — and then I realize that that statement is never going to turn back into a question. “This is my life?” is no longer, “This is my life.” is here to stay.
Fuck you diabetes, fuck you. And even though I know you won’t, please just fucking leave.
3/24/14: My CGM arrived today. I’ve opened the box and looked inside and opened the boxes inside the box, and closed them again. They are now stacked neatly on the side of my desk, staring at me, as I glare back at them. It feels like the opposite of a christmas present… but it’s supposed to be good, it’s supposed to help me, it will help me. [glare at boxes]
I’m afraid to do it. I’m afraid not to do it. I’m stuck.
So, I just watched the dexcom video again, and re-read my friend’s email again… this sensor tool looks barbaric… where am I supposed to put this again? Maybe if I just pretend it’s going to feel like I’m being stabbed with a knife, whatever it does feel like won’t be so bad in comparison. So, I’m sitting here with a quesadilla staring at the boxes. Now what?
Fast Forward to today — 1.5 days in: While eating my quesadilla and staring at the boxes, I took up a friend on her offer to come over and help me. It was not the end of the world like I imagined it would be — nor did it feel like I was stabbing myself. It surprisingly barely hurt at all, it was super strange to use the injection tool, but not terrible. Then there was the receiver… I swear I looked at the number on the box… turns out I entered it wrong… that was 30 minutes of wondering why it wasn’t working… but in the end it was able to get a signal, I waited until the next morning to calibrate (it went off asking for calibration after I fell asleep… my alarm clock reflex turned it off). And so far so good… it’s nice knowing where I’m at, irritating when I would have ignored how I felt (ex. when in a meeting at work), but nonetheless probably for the better. It’s annoying to remember to keep it with me all the time, I have ordered a purse/bag that I will hopefully be able to use to put in my briefcase and solo to solve this problem. I love data, that is not new. I’m still conflicted though. It caught a quick drop last night, which was great, but wearing the sensor makes me feel weird. Living in Southern California, I know it is going to be beach season soon… and then my sensor will label me as a sick person… I’m not thrilled about that, but I’ll cross that bridge when I come to that. For now I’m wearing clothes to cover it and it’s helping… now to just keep telling myself that…
Today you are not the worst thing going on. We addressed some lows earlier in the day, but they weren’t extreme — and now we’re good (just double checked, 118 — woot woot).
Today my romantic relationship with my girlfriend ended. Boom. Worse than any blood sugar low I’ve experienced. I won’t expand on the problems and reasons here, as far as you are concerned diabetes, our worry is that now our support system is down one — an important one. The one who saw me through the beginning of sobriety, bi-polar diagnosis, and finding my way in the world as a lesbian — and then the type 1 diabetes diagnosis on top of all of that. It’s been a banner year, and she has been there to support to the best of her ability, every step of the way. I know that she still loves me, and that she is still in my corner, but there is still a loss there. Our partner, our first call, our default emergency contact on all forms and places that require an emergency contact — is no more.
That’s all I have. no solutions. no replacements. just facts. We’ll work on the rest tomorrow.