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 I hate having to wear a pump. I hate the process of putting on a new one, but the other day I managed to put on a new omnipod by myself without having an emotional meltdown. This is a delayed reaction, but I am proud of myself. I was supposed to go to my friend’s house so I’d have support , but as I was waiting to leave, I thought to myself “this is stupid, I should just do it now so I don’t have to worry about it later…” and so I did it. fairly quickly, but still slower than I know I’ll be soon enough… I just keep thinking how slow and timid I was with the dexcom at first. I remembered to pinch the skin around the site, it didn’t hurt nearly as much as the first time. I even tried a new site, I have it on my upper arm right now — I think it helps that I have more fat there, but I’ve also caught it on door frames a few times… who knew I cut my corners so hard. Another thing down. I can’t help but hold my breath a little bit — every time I think I’ve got something down, a whole new pile of shit lands in my lap. I just don’t think I can take on any more.
So eating is a problem again/still — I thought I had made progress, but if I had, it is no more. However, even more interesting, I have discovered eating’s ugly second cousin… dehydration. I get dizzy, lethargic, dry mouth… overall it is not fun, but I’m so used to all of those symptoms from different reasons, that I don’t even notice. I went to see an integrative medicine doctor — i.e. a treat the whole patient doctor, before anyone goes crazy, I’m not by any means getting rid of my other doctors, I’m just supplementing with someone who sees the value of changes in diet, supplements, etc. Anyway… he talked to me about hydration too, so I’m going to make a concerted effort to drink more water… this is going to sound absurd, but I’ve put my camelbak backpack on the back of my desk chair… I think I might have found the solution… tbd 🙂
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.
Moving the omnipod around has had an odd side effect. I am rightly sensitive/protective of my “equipment” … still haven’t found the right word. If either my dexcom or omnipod are pulled/ripped off or dislodged in any way, or even jostled out of place in the wrong way, they will not work — this is not only unsafe for me, as I wear them for a reason, but it’s also expensive if I have to replace the sensors more than prescribed. then there’s also the matter of just feeling the “equipment” on my body. when I roll over in bed. when I put my hand in my pocket because I think my keys are in there, and it turns out it’s my sensor. I catch it on something or I can just feel it when sitting in a chair, or leaning against something — needing to make sure that the way I’m leaning isn’t pulling it away from my body… here’s the thing though… I’m now feeling my sensor in places that they’re not… more than once now, I’ve been sitting and reached back check that my omnipod is okay — and it’s on my arm. I twist one way to grab something and then check that my dexcom is okay… it’s on the other side. Now, not only am I avoid/protecting my “equipment” but I’m also avoid/protecting anywhere I place equipment all the time, whether or not there is any “equipment” there. fuck this. where can I opt out. I’m so done. I hate that this is changing my behavior. I hate that I am having to change my behavior for this disease. or that this disease is forcing changes in my life. or that I have to make changes in my behavior for this device. this is all chicken and the egg bullshit. I’m just mad. fuck diabetes.
I found a new way to fuck up my diabetes… guess what I did this time… so I have the bad habit of changing my dexcom later in the evening,… usually just before bed, so 11pm, give or take. This means in order to calibrate it I can either stay up until 1am or go to bed and wake up when it goes off at 1am. I always think that it’ll be fine and I’ll get up… I even left the meter, two test strips and the lance thing out, lined up on my bedside table… nope. #FAIL Instead of entering real numbers, I entered the default 120, twice… not even at the same time. It went something like this…
1am… loud noises… Fucccckkk… Nooooooo(snoozes Dexcom) x 3… okay fine… punches randomly on buttons, “why yes, 120 sounds right, whatever, I’ll fix it in the morning” … 10 minutes later… loud noises… Fucccckkk… Nooooooo(snoozes Dexcom) x 3… okay fine… punches randomly on buttons, “why yes, 120 sounds right, whatever, I’ll fix it in the morning.” At this point, I’ve entered two wrong bs readings (I was definitely running higher than 120), so my dexcom is calibrated… wrong. great.
Not to mention that I have this post-it right under where I keep my diabetes stuff… when I rollover it’s right in my face… it sort of worked the first or second time… So now, all day, my dexcom has been off, leaving me to test just as much, if not more than I did prior to having the dexcom in the first place. fuck me. fuck Diabetes. I just want a day off.
Well, it’s happened. My diabetes officially has it’s own (GIANT) shelf in my bathroom. No longer are things scattered around where they “make sense” — space was made and my dear Diabetes has a visible home… even though I hate that I need it, it is nice to have everything in one place rather than shoved in different cabinets and drawers all over the place… once again a physical/tactical win and an inner tantrum. looking for acceptance, haven’t found it yet.
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.