Diabetes is hard

[Polska_Gurom]

I don't like the fact that I'll never be able to have a midnight snack without taking insulin. I don't like that I'll always be worrying about my bg going too high or low while my friends probably will never give a second of thought to their blood sugar levels. Most my friends probably don't even know what that is. And whenever I burnout I don't really have anyone to talk to since I don't know anyone with diabetes, they'll offer general support but they'll never fully understand. Anyone can sympathise but to fully grasp having a condition is different. I guess I'm still trying to process the magnitude of having a autoimmune condition FOR LIFE. Every other time I've ever gone to a gp/hospital the problem has been resolved, but now I have this thing that will never go away. You know you never expect to be THAT GUY. You always see people with cancer, or a heart condition and you think "wow I feel for them, good thing I'll never have such a condition, right?". I mean it was just a couple weeks ago I was writing down notes for diabetes and insulin in biology, literally foreshadowing in real life. That all changes now and it hits you like a truck, I didn't fully grasp it on diagnosis, probably too shocked. But now everything is making sense. I guess I'm just mad at my pancreas for giving up. Idk I guess I'm just not fully enchanted with the idea of the rest of my life. I do realise that people have it worse than me, and I'm thankful for everything, my family, my amazing diabetes team, the fact I caught it early and avoided DKA. Idk. I just didn't have anywhere else to vent, and it feels better to do it to strangers with diabetes than loved ones without for some reason. Nothing feels real right now, I'm still hoping it's just a bad dream. Life's moving so fast, it's like I blink and it's already been a week, it's like I'm on autopilot. I feel like a spectator in my own life. Nothing's gone wrong yet, I still have both hands on deck and everything is under control; for now. I feel like it could all go to **** any second. But I'm holding on for now, and I'm pretty happy. Thanks for reading my yap if you got this far, I don't really need advice I just wanted to get all my feelings onto one page somewhere without consequences to strangers.

 

[lovinglife]

I don't like the fact that I'll never be able to have a midnight snack without taking insulin. I don't like that I'll always be worrying about my bg going too high or low while my friends probably will never give a second of thought to their blood sugar levels. Most my friends probably don't even know what that is. And whenever I burnout I don't really have anyone to talk to since I don't know anyone with diabetes, they'll offer general support but they'll never fully understand. Anyone can sympathise but to fully grasp having a condition is different. I guess I'm still trying to process the magnitude of having a autoimmune condition FOR LIFE. Every other time I've ever gone to a gp/hospital the problem has been resolved, but now I have this thing that will never go away. You know you never expect to be THAT GUY. You always see people with cancer, or a heart condition and you think "wow I feel for them, good thing I'll never have such a condition, right?". I mean it was just a couple weeks ago I was writing down notes for diabetes and insulin in biology, literally foreshadowing in real life. That all changes now and it hits you like a truck, I didn't fully grasp it on diagnosis, probably too shocked. But now everything is making sense. I guess I'm just mad at my pancreas for giving up. Idk I guess I'm just not fully enchanted with the idea of the rest of my life. I do realise that people have it worse than me, and I'm thankful for everything, my family, my amazing diabetes team, the fact I caught it early and avoided DKA. Idk. I just didn't have anywhere else to vent, and it feels better to do it to strangers with diabetes than loved ones without for some reason. Nothing feels real right now, I'm still hoping it's just a bad dream. Life's moving so fast, it's like I blink and it's already been a week, it's like I'm on autopilot. I feel like a spectator in my own life. Nothing's gone wrong yet, I still have both hands on deck and everything is under control; for now. I feel like it could all go to **** any second. But I'm holding on for now, and I'm pretty happy. Thanks for reading my yap if you got this far, I don't really need advice I just wanted to get all my feelings onto one page somewhere without consequences to strangers.

I’m just a knock kneed old T2 so can’t offer you any advice as to being a newly young diagnosed T1 other than this is your safe place to share, rant, ask those questions that sound daft in your head but never are, I’ve been reading your posts and you’re doing amazing and seem to be learning at a pace! But take time to breathe & process things. There will be grief for the loss of your old life and concern and probably anger for your new life but it’s a process you have to go through and you’ll get through it and you will come out the other end. You seem like a very mature, level headed person and that will help you, but you are allowed to have down days, be angry, sad or however you feel so rant away

 

[Polska_Gurom]

I’m just a knock kneed old T2 so can’t offer you any advice as to being a newly young diagnosed T1 other than this is your safe place to share, rant, ask those questions that sound daft in your head but never are, I’ve been reading your posts and you’re doing amazing and seem to be learning at a pace! But take time to breathe & process things. There will be grief for the loss of your old life and concern and probably anger for your new life but it’s a process you have to go through and you’ll get through it and you will come out the other end. You seem like a very mature, level headed person and that will help you, but you are allowed to have down days, be angry, sad or however you feel so rant away

Thank you,
you're right I do ask the stupid questions on this forum I'm too embarrassed to ask my doctor lol. And I like the way you worded that "grief for the loss of your old life".

 

[JoKalsbeek]

I don't like the fact that I'll never be able to have a midnight snack without taking insulin. I don't like that I'll always be worrying about my bg going too high or low while my friends probably will never give a second of thought to their blood sugar levels. Most my friends probably don't even know what that is. And whenever I burnout I don't really have anyone to talk to since I don't know anyone with diabetes, they'll offer general support but they'll never fully understand. Anyone can sympathise but to fully grasp having a condition is different. I guess I'm still trying to process the magnitude of having a autoimmune condition FOR LIFE. Every other time I've ever gone to a gp/hospital the problem has been resolved, but now I have this thing that will never go away. You know you never expect to be THAT GUY. You always see people with cancer, or a heart condition and you think "wow I feel for them, good thing I'll never have such a condition, right?". I mean it was just a couple weeks ago I was writing down notes for diabetes and insulin in biology, literally foreshadowing in real life. That all changes now and it hits you like a truck, I didn't fully grasp it on diagnosis, probably too shocked. But now everything is making sense. I guess I'm just mad at my pancreas for giving up. Idk I guess I'm just not fully enchanted with the idea of the rest of my life. I do realise that people have it worse than me, and I'm thankful for everything, my family, my amazing diabetes team, the fact I caught it early and avoided DKA. Idk. I just didn't have anywhere else to vent, and it feels better to do it to strangers with diabetes than loved ones without for some reason. Nothing feels real right now, I'm still hoping it's just a bad dream. Life's moving so fast, it's like I blink and it's already been a week, it's like I'm on autopilot. I feel like a spectator in my own life. Nothing's gone wrong yet, I still have both hands on deck and everything is under control; for now. I feel like it could all go to **** any second. But I'm holding on for now, and I'm pretty happy. Thanks for reading my yap if you got this far, I don't really need advice I just wanted to get all my feelings onto one page somewhere without consequences to strangers.

You'd be surprised how many people are out there who got diagnosed with something when they were young. It's funny how health is always seen as directly related to someone's age, while anyone, at any age, can get hit with a condition. I have quite a few, some I was born with, some painful ones started when I was 4 years old, and I have never been exactly healthy. More piled on as I aged. At the same time, an old classmate of mine has rather severe Ehlers-Danlos, which must have started bothering her while we were in school together, but she never said; just carried the burden alone, due to an unsupportive family and feeling like everyone in the world would be like that: just shut up and quit whining. While I know pain intimately, I cannot imagine what she goes through, every single day. It's different from my own experiences in life, but sometimes the best we can do is recognise someone is struggling, even if we aren't in the same boat, and respect what they're going through, and do what we can to help, if we can at all. I hope you have friends and family members who have that knowledge of empathy, rather than sympathy.

There's quite a few T1's on here who had years, decades even, to live with a faulty pancreas... It does become second nature, after a while, for the bulk of them, it seems. So do give yourself time, and see what support you can garner in your inner circle of people while you're getting used to your new reality. Try not to shut them out; it gets lonely and depressing, and that makes it harder to keep going. I see you're into weights, so you might look into Nikita Kuzmin: he's a professional dancer, and it takes quite a bit of muscle strength to pick up and throw dance partners around, never mind long days of training and dancing... He's a T1 and manages to balance it all with what he asks of his body. It can be done. Which you likely already know, but still. Thought I'd mention it.

So, from this lowly T2, I hope you hang in there. And feel free to rant or vent or anything on here, any time.
Hugs,
Jo

 

[Polska_Gurom]

You'd be surprised how many people are out there who got diagnosed with something when they were young. It's funny how health is always seen as directly related to someone's age, while anyone, at any age, can get hit with a condition. I have quite a few, some I was born with, some painful ones started when I was 4 years old, and I have never been exactly healthy. More piled on as I aged. At the same time, an old classmate of mine has rather severe Ehlers-Danlos, which must have started bothering her while we were in school together, but she never said; just carried the burden alone, due to an unsupportive family and feeling like everyone in the world would be like that: just shut up and quit whining. While I know pain intimately, I cannot imagine what she goes through, every single day. It's different from my own experiences in life, but sometimes the best we can do is recognise someone is struggling, even if we aren't in the same boat, and respect what they're going through, and do what we can to help, if we can at all. I hope you have friends and family members who have that knowledge of empathy, rather than sympathy.

There's quite a few T1's on here who had years, decades even, to live with a faulty pancreas... It does become second nature, after a while, for the bulk of them, it seems. So do give yourself time, and see what support you can garner in your inner circle of people while you're getting used to your new reality. Try not to shut them out; it gets lonely and depressing, and that makes it harder to keep going. I see you're into weights, so you might look into Nikita Kuzmin: he's a professional dancer, and it takes quite a bit of muscle strength to pick up and throw dance partners around, never mind long days of training and dancing... He's a T1 and manages to balance it all with what he asks of his body. It can be done. Which you likely already know, but still. Thought I'd mention it.

So, from this lowly T2, I hope you hang in there. And feel free to rant or vent or anything on here, any time.
Hugs,
Jo

I have been pushing everyone away to be fair, I just want to be left alone. I don't say what I mean, I don't want to be rude I don't want to push my parents away but I can't help it. It really is like something possessed me, like I said; I'm simply a spectator. Yes I feel alone and isolated sometimes but i bring it on myself. Everything else you said was helpful too
P.S What part of the Netherlands are you from?

 

[JoKalsbeek]

I have been pushing everyone away to be fair, I just want to be left alone. I don't say what I mean, I don't want to be rude I don't want to push my parents away but I can't help it. It really is like something possessed me, like I said; I'm simply a spectator. Yes I feel alone and isolated sometimes but i bring it on myself. Everything else you said was helpful too
P.S What part of the Netherlands are you from?

It's a natural response to grief. Any life changing diagnosis triggers the various stages of grief (like depression, anger, etc). Grief isn't reserved for death only. It is any type of loss, and your future and your health are not what you thought they would be. That hurts, and it's normal to be aching over it. While people have different responses to that, a lot of us withdraw into ourselves and keep others at bay. Physical or emotional pain make us feel vulnerable, and while we're busy trying to figure out how to feel about something, how we'll deal with it etc, we do need some time. Pushing your parents away, saying things you don't mean, that's all the anger; you can't lash out at your pancreas, and they're close to you: they might be getting the brunt of it, just due to proximity. Just stuff to think about, maybe talk to them about... They might not realise why you're acting the way you are. Keep them in the loop, and it might be easier for everyone.

Sometimes I have melt-downs. Kind of comes with being autistic, I guess. And while it is neigh on impossible for me to physically get up out of a chair and go to my husband, he now knows that when I withdraw into myself (or even run from the room to hide under the bedcovers!), he can come over and just hug me. It's the one thing I need most in the world right then, and it's the last thing I can ask for. So now it's something he knows, so when I can't communicate my needs, he still knows what they are. So when you feel okay and safe to speak out about how you feel and how confusing and painful all this is... Then maybe the most important people around you know why you act the way you do, and give you what you need at such a moment, whatever that is. Some time alone, a shared cup of tea in silence, a hug, or booting up the Xbox for some split-screen gaming. Whatever works for you and makes you breathe easier.

Oh, also, if you're running high or running low, your emotions aren't quite your own. Feeling low, confused, unstable, even combative, could be due to your blood sugars not being well-controlled. So cut yourself a break every now and again, eh.

Hugs,
Jo

PS: I am originally from Tilburg, down south, but now I'm in the middle of the country, in a little town near Amersfoort.

 

[TC1763]

I don't like the fact that I'll never be able to have a midnight snack without taking insulin. I don't like that I'll always be worrying about my bg going too high or low while my friends probably will never give a second of thought to their blood sugar levels. Most my friends probably don't even know what that is. And whenever I burnout I don't really have anyone to talk to since I don't know anyone with diabetes, they'll offer general support but they'll never fully understand. Anyone can sympathise but to fully grasp having a condition is different. I guess I'm still trying to process the magnitude of having an autoimmune condition FOR LIFE. Every other time I've ever gone to a gp/hospital the problem has been resolved, but now I have this thing that will never go away. You know you never expect to be THAT GUY. You always see people with cancer, or a heart condition and you think "wow I feel for them, good thing I'll never have such a condition, right?". I mean it was just a couple weeks ago I was writing down notes for diabetes and insulin in biology, literally foreshadowing in real life. That all changes now and it hits you like a truck, I didn't fully grasp it on diagnosis, probably too shocked. But now everything is making sense. I guess I'm just mad at my pancreas for giving up. Idk I guess I'm just not fully enchanted with the idea of the rest of my life. I do realise that people have it worse than me, and I'm thankful for everything, my family, my amazing diabetes team, the fact I caught it early and avoided DKA. Idk. I just didn't have anywhere else to vent, and it feels better to do it to strangers with diabetes than loved ones without for some reason. Nothing feels real right now, I'm still hoping it's just a bad dream. Life's moving so fast, it's like I blink and it's already been a week, it's like I'm on autopilot. I feel like a spectator in my own life. Nothing's gone wrong yet, I still have both hands on deck and everything is under control; for now. I feel like it could all go to **** any second. But I'm holding on for now, and I'm pretty happy. Thanks for reading my yap if you got this far, I don't really need advice I just wanted to get all my feelings onto one page somewhere without consequences to strangers.

Never apologise for ranting. You know a lot of us are probably feeling the same as you. So rant away, we are here for you

 

[Jaylee]

Hi @Polska_Gurom ,

To be quite frank.
It’s normal at 16 years of age to want your own space?
Diabetic or not? Which can be tricky if living under your parent’s roof..

lol, I remember going out one night & hanging out with friends in my teens. (No mobile phones back then.)
One of my sisters realised I hadn’t come home & woke everybody up.
By the time I rocked up, my dad had got the car out & was planning a search.
I was annoyed at the time but I get it.
I also felt sorry for my dad getting woke at stupid o’clock..
They were worried I could have been upside down in a ditch?

Feel free to vent.

 

[Polska_Gurom]

It's a natural response to grief. Any life changing diagnosis triggers the various stages of grief (like depression, anger, etc). Grief isn't reserved for death only. It is any type of loss, and your future and your health are not what you thought they would be. That hurts, and it's normal to be aching over it. While people have different responses to that, a lot of us withdraw into ourselves and keep others at bay. Physical or emotional pain make us feel vulnerable, and while we're busy trying to figure out how to feel about something, how we'll deal with it etc, we do need some time. Pushing your parents away, saying things you don't mean, that's all the anger; you can't lash out at your pancreas, and they're close to you: they might be getting the brunt of it, just due to proximity. Just stuff to think about, maybe talk to them about... They might not realise why you're acting the way you are. Keep them in the loop, and it might be easier for everyone.

Sometimes I have melt-downs. Kind of comes with being autistic, I guess. And while it is neigh on impossible for me to physically get up out of a chair and go to my husband, he now knows that when I withdraw into myself (or even run from the room to hide under the bedcovers!), he can come over and just hug me. It's the one thing I need most in the world right then, and it's the last thing I can ask for. So now it's something he knows, so when I can't communicate my needs, he still knows what they are. So when you feel okay and safe to speak out about how you feel and how confusing and painful all this is... Then maybe the most important people around you know why you act the way you do, and give you what you need at such a moment, whatever that is. Some time alone, a shared cup of tea in silence, a hug, or booting up the Xbox for some split-screen gaming. Whatever works for you and makes you breathe easier.

Oh, also, if you're running high or running low, your emotions aren't quite your own. Feeling low, confused, unstable, even combative, could be due to your blood sugars not being well-controlled. So cut yourself a break every now and again, eh.

Hugs,
Jo

PS: I am originally from Tilburg, down south, but now I'm in the middle of the country, in a little town near Amersfoort.

Hi @Polska_Gurom ,

To be quite frank.
It’s normal at 16 years of age to want your own space?
Diabetic or not? Which can be tricky if living under your parent’s roof..

lol, I remember going out one night & hanging out with friends in my teens. (No mobile phones back then.)
One of my sisters realised I hadn’t come home & woke everybody up.
By the time a rocked up, my dad had got the car out & was planning a search.
I was annoyed at the time but I get it.
I also felt sorry for my dad getting woke at stupid o’clock..
They were worried I could have been upside down in a ditch?

Feel free to vent.

Hi @Polska_Gurom ,

To be quite frank.
It’s normal at 16 years of age to want your own space?
Diabetic or not? Which can be tricky if living under your parent’s roof..

lol, I remember going out one night & hanging out with friends in my teens. (No mobile phones back then.)
One of my sisters realised I hadn’t come home & woke everybody up.
By the time I rocked up, my dad had got the car out & was planning a search.
I was annoyed at the time but I get it.
I also felt sorry for my dad getting woke at stupid o’clock..
They were worried I could have been upside down in a ditch?

Feel free to vent.

Yeah I recognise that It's just the typical, stereotypical rebellious feelings and stuff. Everybody's gotta go through this phase for character development lol

 

[Polska_Gurom]

Yeah I recognise that It's just the typical, stereotypical rebellious feelings and stuff. Everybody's gotta go through this phase for character development lol

idk why i responded to three different messages that's my bad

 

[SimonP78]

I don't like the fact that I'll never be able to have a midnight snack without taking insulin.

Can I chip in here and say alcohol

No really, if you've been out dancing the night away or even propping up the bar, or both, then you definitely will require uncovered midnight snacks before bed

But slightly less tongue in cheek, I am sorry, I was diagnosed so long ago I don't even remember going though all of this, but I imagine I wasn't very pleased either (I was younger though so perhaps that changes things, I don't know).

For me, for as long as I can remember it's just been part of life, I don't really think about it consciously and it's just a thing I do. The fact other people don't need to do this is immaterial, we're all different in so many ways, different strengths and weaknesses, abilities and inabilities, there are so many things that could be compared but there's little point in doing so with something that cannot be changed.

I do sometimes wish I could have a better CGM (or ideally something non-intrusive which I could take off to play sport more easily), or that I understood the factors affecting my BG better, but these are things that are within the realm of what's possible and in the latter case (and perhaps also in the former) something where I can do something about it myself by learning/making something, which is a nice feeling (I guess the buzzword bingo word would be "empowering" - I'm all for that ).

Keep at it, it does get easier and it shouldn't stop you doing what you want to do (even if it does sometimes require a bit of planning, which will eventually become second nature)

 

[NoMoreBeerAnymore]

I felt a bit of hostage for ages. The fact I have to work so damned hard to end up with very little to show for it. Now I cannot even escape with a really good takeaway curry and a beer. Nice of the NHS to tell me I can get into remission if I take Mounjaro or go on an expensive low carb diet. Well done. I can't afford either. Never mind. Back to work, where I am going to be until I kick the bucket.