diary of a type 1 diabetic kid

i had a talk with my mum about my diabetes diagnosis.

she said she regretted how she handled it, how back then she didn't speak french fluently like today, and she didnt understand the rules she was told. both my parents handled my disease. my dad cried a lot when i was diagnosed

my mom almost killed me many times, to this day she thinks about it, she told me as her eyes began to water

my mom almost killed me wanting to take care of me and as i'm writing this i see this as a metaphore of how she handled all of my siblings and i during our childhood and teenager years.

nobody took the time to explain to her the basics, the rules, the handling, the doses, the injections in her own language

then my whole childhood as i explained to the other kids that i was ill, i repeated what every other adult would say, and tell them "at least it's not cancer"

but it ate me, my family and i. it engaged conflits with my siblings and parents, it made me a liar, it created the most traumatizing memories. it shaped me into the scared and anxious person i am today

it ate me and i felt so lonely. back then i would wish for the most awful sickness to take me, so the dozens of doctors that were "taking care" of me would finally see how bad i was hurting.

i felt so lonely with all the doctors that supervised me and didn't ask the right questions.

something happened a few years ago that triggered this loneliness, it turned into an anger i still have today. one shrink told me i was going through a diabetes related mourning. why is this anger phase still going and how long will it keep going ?

i wish i could meet all the kids, adults today, that had my childhood endoctrinologist as their doctor back then. i wanna know how this fatphobic person affected their lives, their eating habits.

my dad loved her

later in the day today, i talked to a friend about this and it's like a door of trauma opened. i talked about this i never mentioned to anyone before because the convo felt right and it's a feeling i've never felt before it was so odd

my endoctrino would point out how fat i was becoming, she would argue that i wasn't making any effort, that i was lazy and my dad drank her words and would repeat them to me later

i struggled so much with food, i had to follow so many rules that forbade me to eat sugar, so i would eat so much sugary stuff as i hid myself

i would tell this to my dieticians, and they wouldn't help at all, they would tell me to continue sport, to eat that much carbs and that much veggies, and my dad was next to me so i couldn't really say the whole truth, so i lied, and i wasn't helped

the appointments continued for many years and at some point i saw myself from the outside, lying, being told how much carbs to eat, and i'd see how every appointment was the exact same, how they didnt help at all, and it was the last time i saw a dietician under 18 years old

and my dad was being a jerk to me, he helped develop my e.d. that would be diagnosed many years later, and i was supervised by so many doctors but my dad was there everytime i couldnt say anything, and when the rare times he wasn't there no one asked about my moral, i was so lonely

and i learned a few days ago that diabetics didnt have any satiety because of some hormone that wasnt produced and no one told me, i just thought i have destroyed my eating habits by eating that much sugar

all the doctors i saw, and no one thought to tell me ?

i know it’s not possible, but the past couples week ive been stressed and busy all the time and my BS has been high and low like a rollercoaster and not matter what i do i struggle so hard to deal with it. makes me tired and weak, when im supposed to be at my strongest so i can graduate this year. to do that i need to be healthy and take time for my illness. it’s all contradictory needs… this is stressing me to the point of skipping meals so i dont have to bolus and deal with the highs/lows after the meal

if your read my last post, you must remember how desesperate i was to get my diabetes stable again,

to find what caused my insulin shots to simply ~not function.

for more than 3 months i tried everything i could : i changed my pump to get a new one, catheters, needles, my insulin and then my pump to a different kind (omnipod). nothing worked,  always seemed to for three days until it did not.

i was depressed, stressed, felt sick and looked like it.

one day i just had a...thought? a random one...what if my contraceptive pill was the cause? it’s not really a contraception, it’s one that will stop your periods. but i’ve had troubles with it before, a long ass period of..periods, until it stopped, to then give me constant spottings!!

so i read the manual again of my pill, i read the “STOP THE PILL IF YOU HAVE THE FOLLOWING SYMPTOMS” : unusual growth of breast, breast pain, spottings

it alarmed me and i wasn’t even looking for that. i was looking for something diabetes related. it WAS written that diabetic should be careful, but my gyneco knew about my condition so i ignored it the first time i took the pill. apart from that : nothing. but it HAD to be the cause of all my problems. so i asked around on diabetic twitter if anyone had an issue with “dienogest” pill. i had positive answers. people telling me it could make your body insulin resistant, that they had to stop taking it.

i took a shot and stopped it on wednesday, by sunday my problems were...solved? my glycemia was back to regular, my blood sugar reacted with the insulin as it should. i was so mad because no one ever asked me if i took some specific medicine that could be the cause of my BS issues..? no one took the time to ask me anything apart from if i was healthy and giving me new treatments everytime while barely questionning my issues...

i told my gyneco and nurse, they were both surprised but i still dont know about my endoctrino reaction, i might be disapointed. i blame them for barely asking me any question. but i’m not blaming the internet for hardly giving me any answers because my pill was a new one on the market.

THE AFTERMATHS

now that my body is back on acceptin my insulin shots, i’m left with wondering if i want to keep my omnipod : i still don’t know. it is annoying waking up every four morning with my PDM ringing because my pod needs to be changed (when it needs to be changed, the pod stops giving you insulin even when there’s still left). it causes me unnecessary high BS some mornings.

i’m also left with having to learn to deal with my ~regular diabetes again. i’ve had it for 18 years, but 4months on random mode and i have to learn how to deal with it “rationnally” as much as i can. it’s hard, i got used to give up giving myself insulin when i ate because i knew it would not work anyway, but now i need to understand that i have to bolus, whenever i eat.

a few days earlier i just moved in in my dorm room. the first night, my gf stayed with me to sleep over, we drank three glasses of wine that night to celebrate that we were without parents. the thing is i havent drank in a long time and totally didnt think of the consequences of alcohol with diabetes if you’re not careful. so i just fell asleep drunk, i ate stuff but prolly not enough. the next morning, the first morning in my dorm room away from family, the first morning of my student life, i wake up with men from emergencies asking me to wake up. i close my eyes, thinking this is a very boring and unfunny dream. i mean the first night away and my parent’s worst fear happen. okay nice, i try to swake up but i cant. because i was already up, with a perfusion in my hands vein, men watching me and my gf in tears. i was so disapointed at myself for being careless. when they left we crie with her, she felt guilty and so did i. her for not calling them sooner, or maybe calling them, for bringing the alchol also, and me for being careless, the first night. my parents never knew about this and they shall never. i am scared now that when i wake up alone without anyong sleeping over, well, i wont wake up. but no one will show up because it’ll take time to realise i may be in another coma, but since no one will show up, i’ll just die over there, helpless. 

In a month i’ll meet my new endoctrinologist. The adult one. I don’t know if this system is everywhere, but in france i guess you have a new one once you turn 18. I haven’t met them yet, but I know the hospital i’ll have my apointment in will be like an hour away from home, 40min away from my old hospital. That’s really bothering, but thinking about this i realized that I was still grateful. That i get to be angry about this, because i HAVe the chance to have one without ruining myself because i live in a country that pay you back most healthcares. Yes, i do not LOVE my country for many reasons, but this has got to be the best reason why i like it. I have easy access to my treatment, even for my insulin pump. I can have help if there’s a problem with it, and not face any financial consequences. While other type one diabetes dont have that chance.

I wanna talk first about these families, that deprive their children from insulin, either because they think a diet is enough, either because they believe insulin isn’t natural, so, a sin. And children still die today from that, because their parents are total idiots. But I also think of all the americans that die and suffer everyday because they can’t afford treatment, because they can only get one that isn’t good for them, that is cheap, for local stores, because they have to drives miles to get insulin in mexico. This is like water, like air, and the USA still wanna make them pay for it ? This is so unnacceptable, but they’d rather protect their guns with all their hearts. Obama wasn’t all sugar alright, but Trump did absolutly nothing good while he’s elected. I really hope this will change soon...very soon because they need it, like litteraly to live. 

nervosity can cause your body to produce more energy and therefore consume more sugar, which results in a hypoglycemia...which results in more nervosity..

this is the state of the place next to my bed, with things that shouldnt be here, and everything i touched that ended up on the floor

i may have said this before but i have had diabetes since i was 2, so it’s been 14 years. when i was a kid i had so much hypo crisises (less hyper), and a lot of them would happen at night. sometimes i’d wake up on the coach with my parents calling the emergency, sometimes my whole family was around my bed with my dad trying to give me sugar and waking me up (i don’t remember when that was nor the context, but it may have been at my early ages for my dad to not know he shouldn’t try to feed me while unconscious). right know i’m slowly remembering all the times the emergency car was infront of my house. the blue and red light, ringing very loud, at night while everyone was asleep. i see red and blue, everywhere in the neighborhood. i see neighbors hiding behind their windows, but dont get me wrong, i do not feel guilt nor that my neighbors were guilty of anything, it’s just a memory. i’d like to know other people’s memory of their childhood. i mean diabetics, or other people with some illness they have had almost all their lives (but mostly diabetes). to share with them these pictures that keep playing in my mind at the moment (it happens once in a while).

i went for a walk with my girlfriend in the city. like any normal individual, i wanted to have a good time and enjoy being with her. when i go out in the city i happen very often to be anxious, because of the crowd, because of the heat in the shops and stores. this anxiety often mimes the symptoms of an hypoglycemia and sometimes i cant tell if i lack of sugar or not.

but then suddenly in the middle of the street it hits me, the real symptoms hit me violently and i was like “okay, i maybe need to worry now.” and i checked my blood sugar (b.s) : 036.

i said “wow.” first, then thought “fuck. not now, not when im with her, not this afternoon, this is really annoying”.

i ate some sugary stuff and we went somewhere so i could rest and i thought it would be okay like it often is after 10min.

but it was not, and my face had spasms, and the people looked double, and i felt like i was dying and getting mad, and the places and the shops and the stores didn’t look the same as they’re supposed to and i kept feeling bad that my gf would see my spams and think i’m weird and i knew that was stupid because she’s not and she knows it’s not my fault and i felt like everyone was looking at me not being able to control my moves because of the spams and i kept complaining and i dont think i was really conscious that my gf could hear me and she asked me if i wanted to go to a clothing shop so we could hide in a dressing room so i could sit and rest and so we did.

we probably stayed there for more than 15 min and i kept having spams but after 10min in there i started feeling better. but i still would see my gf double and it was like she had three eyes and i was afraid i wasnt looking into the right eyes. when we left the place everything still looked double and i couldn’t read anything or even pick the right objects at first because i’d first pick their double version my mind made up.

and then we left the shop and she asked me if i wanted to buy more food and i said yes and we went back into the shop and bought food and i ate and i finally felt better. i am glad she reacted the right way and i am glad i am still here to write this. this was probably my worst experience since a long time ago when i was a kid and struggled to eat and inject myself right.