Type 1 diabetes

[Dark_Progress19]

Hello I’m a type 1 diabetic and been battening it for 17 years from the age of 3, I’m also a YouTuber and PS4 gamer (YouTube: gothic gamer) I’m not really that popular but I’m going to start doing videos of talking about myself medically and help young teens/adults who are going through what I went through growing up.

I’m the only one in my family who has type 1 and sometimes it’s depressing because your blood sugar goes all over the place even when
I was going through my GCSE’s my blood went high and I got keytosis which is DANGEROUS, I never felt so ill in my life and I even got covid last year and I panicked so I called the diabetes team for support and it helped.

When you think you are scared of an illness like this you have the diabetes who can talk you through the important parts plus show you graphs of the carbohydrates for foods and also with the diabetic pumps just like Omnipod (the one I’m with) and show you how to extend the basil like with pizzas and potatoes plus pies but I thought to help youngsters not to worry about anything with this because you are going to be fine trust me. Soon there will be a cure for this

I hope this has helped a little bit but speak/talk about it, you are all amazing people

 

[Jaylee]

Hi @Dark_Progress19 ,

Welcome to the forum.

I'm a fair bit older than you having no idea what a PS4 is.. (A rough idea, I was more into mous & keys on a PC with gaming.)
But I did do YouTube.. Mainly music "stuff."

Yep, growing up being the "only diabetic in the village" can be an interesting experience.

A "cure?" I'm not so sure. But the technology has moved on more since I was first diagnosed.

 

[Dark_Progress19]

Awh bless, when I was very young when I didn’t understand it I thought I was the only one in the whole world. My kid imagination wasn’t that great but PC gaming sounds fun but complicated because I’m so used to playing with a controller than keys and mouse.

I had struggles growing up due to me being the only one with diabetes through out my educational life with school and college, I have a support buddy (my cat) a few times he’s dragged cola to me when my blood sugar was low, he’s a sweet little thing but he doesn’t like it when I have to prick my finger the odd times to collaborate my sensor,I find it quite sweet.

When I was diagnosed when I was 3 I developed a lazy eye so now I have to always check that my eyes are ok and no bursted vessels in my eye. (Doesn’t sound pleasant does it ) it’s crazy how there’s not just us with diabetes like there’s new people getting it and it’s like you want to help them get through the worst and hold their hands because I was on the injections at first I was mostly in and out of the hospital because of my blood sugar being too low (I had seizures because of it but I don’t anymore) or my blood being too high to the point I’m vomiting

 

[Jaylee]

Hi again,

My view? I was diagnosed on my 8th birthday after progressively feeling ill for a week or so. Lucky, this was at the beginning of the school summer break so it give me time to adjust.
Later in life..? The only diabetics I ever saw were at the clinics.. They didn't seem to be very outgoing. So I found myself drawn to a more "alternative" lifestyle where i felt more accepted even though none of the company I kept were not diabetic.

I was actually in bands with other T1s. They never seemed to wanna talk.. Focus on the music & "living the dream.." Probably a different age group.
We are all pretty much "dad age."

 

[Dark_Progress19]

I was bullied because I was different and the teachers didn’t do anything so my mum went in and showed them.

Now I’m a heavy metal goth girl living her 20s

 

[Jaylee]

I was bullied because I was different and the teachers didn’t do anything so my mum went in and showed them.

Now I’m a heavy metal goth girl living her 20s

Hmmm, yep, I did occaisionally have the unoriginal threat of bags of sugar poured down my throat. & wot not.
Bacame a metal head myself & hung out with like minded..

When I hit middle age, I was invited to a closed group on facebook of the "old school?"
Discovered many years later a lot of the lads who perpetrated had a pretty dire home life.
I mean shockingly dire...

If your family suport, even if they don't get what you're doing? Never take that for granted...

 

[Dark_Progress19]

Exactly, family means everything to me even though they’re not in my shoes with the condition I’m just glad that they help me when I need it the most.

I was depressed with it on Saturday last weekend because my Omnipod want in the site properly and I start panicking and me being my I over think things not the greatest thing to do I know.

Last night I had the most horrible headache and so I looked at my blood sugar and it was 2.9 so I start chugging down cola because I’ve not been low in a long time and I had a headache and the lingering feeling of low and the cold sweat plus chill feeling so I went downstairs scavenging for carbs to balance out and the headache went. Thank goodness

 

[Jaylee]

Exactly, family means everything to me even though they’re not in my shoes with the condition I’m just glad that they help me when I need it the most.

I was depressed with it on Saturday last weekend because my Omnipod want in the site properly and I start panicking and me being my I over think things

not the greatest thing to do I know.

Last night I had the most horrible headache and so I looked at my blood sugar and it was 2.9 so I start chugging down cola because I’ve not been low in a long time and I had a headache and the lingering feeling of low and the cold sweat plus chill feeling so I went downstairs scavenging for carbs to balance out and the headache went. Thank goodness

I'm sorry you felt that way.

My childhood with lows? My "go to" was milk.. Used to get up & raid the fridge without waking the house.?
The look on my dad's face when brewing his tea in the morning was priceless. Poor bloke, a sort of silent, " oh well, whatever."

I can still stealthily wake & sort a hypo. However, I try to make sure I leave enough milk for my wife..

I normally get headaches if I've over treated lows during the night? I call it a "hypo hangover."

I don't pump. But I can tag in a few pump users to say hello if you wish? @Rokaab @In Response @NicoleC1971 & a little closer to your Age group studying at uni, @MeiChanski

 

[Dark_Progress19]

When I was a lot younger (I say probably 6 or 8 years old) when ever I ran out of cola to boost the glucose I had to drink sugary milk and most of the sugar was clumped at the bottom and it was nasty like swallowing sand paper but it was either that or hospital, rarely I used to refuse drinking it because I didn’t know what was happening to me (a couple of seconds before I started a seizure) my mum had to give me glucogen and that was even worse because it used to make me feel sick and throw up and the hospital then had to step in and help.

Haha you too with the milk thing!! I have to admit I get questioned who stole the milk (shhh sometimes I replace it with new milk) but mostly blame my siblings only because they use all the milk most of the times but I still get the blame but the milk is soooooo goood.

I’ve been on this pump now since the age of 12 and my life has changed so much, it’s a little easier to manage but with the sensor it’s made it manage my blood way better because it shows you how fast you are dropping or how fast it’s rising even shows you how balanced it is and there’s an app called Dexcom clarity which shows the diabetes team your blood rate and gives them an estimated HBa1C for the next time you’re at the clinic (technology right it’s awesome) when I was little I could never imagine this could happen.

 

[NicoleC1971]

Hello I’m a type 1 diabetic and been battening it for 17 years from the age of 3, I’m also a YouTuber and PS4 gamer (YouTube: gothic gamer) I’m not really that popular but I’m going to start doing videos of talking about myself medically and help young teens/adults who are going through what I went through growing up.

I’m the only one in my family who has type 1 and sometimes it’s depressing because your blood sugar goes all over the place even when
I was going through my GCSE’s my blood went high and I got keytosis which is DANGEROUS, I never felt so ill in my life and I even got covid last year and I panicked so I called the diabetes team for support and it helped.

When you think you are scared of an illness like this you have the diabetes who can talk you through the important parts plus show you graphs of the carbohydrates for foods and also with the diabetic pumps just like Omnipod (the one I’m with) and show you how to extend the basil like with pizzas and potatoes plus pies but I thought to help youngsters not to worry about anything with this because you are going to be fine trust me. Soon there will be a cure for this

I hope this has helped a little bit but speak/talk about it, you are all amazing people

Hello and welcome to the forum too!
I am no a tandem pump plus dexcom. I have diabetic eye damage so am on YT quite a lot not to mention Audible but leave gaming to my boys (x box Fifa etc.). IS there a game ;you can recommend that doesn't result in rage at the machine?!
I to type 1 when aged 10 and gone the full gamit of urine tests plus rigid carb counting/animal insulins regime through depression/eating disorders (I think these were connected to type 1) and out the other side to managing well wih the aid of low carb and a pump that talks to my dexcom. It is annoying but I am always surprised when other people feel sorry for me. I work ft as a personal trainer, have had 3 kids and other than that blip in my teens/20s plus bad retiopathy post first pregnancy, it hasn't stopped me much, isn't disfiguring and is mainly a nuisance day to day!
How do you feel about it ? Do you know anyone else personally who has it?
I still make mistakes like not changing my pump site enough or forgetting to do a bolus or organise my supplies. I then feel stupid and/or guilty for this self sabotage but those are pretty pointless emotions so unlike at your age, I don't stay miserable about it for long. This too shall pass!
I suppose, like you, and as a 51 yo I just can't remember not having to deal with it.
My parents were, and are, great about it and it wasn't until I had my own babies that I realised quite how hard it must have been for them to see me struggle with it.
Right now I am feeling lucky not to be living somewhere where I can't get hold of my meds easily. When I see my blood sugars spike due to a pump delivery problem it does remind me just how insulin dependant I am!

 

[Dark_Progress19]

Wow, I’ve never asked any of my diabetes team specialists but is it likely for your children to get type 1. I’ve never really read upon this because I’ve been so focus on getting myself sorted I’ve never stopped to ask anyone.

I hate hypers and hypos the feeling it makes you feel is undiscribeable (if that’s a word or if I spelt it right I’m also dyslexic) I would say it was worse during my GCSEs as a teenager with stress with exams never got a break from my bloods trying to spike up.

 

[himtoo]

Hey @Dark_Progress19
welcome to the forum.

i am a podder too ...been on omnipod for nearly 7 years ......i can totally relate to the loneliness of being on my own with the type 1 ----- that is why forums like this and instagram are so helpful --- there is a massive online community of us ..and it helps me so much to feel that connection

sending good shoog vibes !!!

 

[Dark_Progress19]

Awh thank you so much! I was recently in clinic with the diabetes team plus a dietician because of my weight and because I’m quite tall (5.8) i found out that I’m 8 stone, not just that either my doctor said that I might be anemic so I have to eat 2 portions of red meat a weak. Im eating better now, I’m less tired and not hungry as much because I’m eating the right amount a day instead of not having breakfast and less carbs with less insulin.
Im always having the amount I need so I don’t go too high or too low.
Thank you for the positive vibes

 

[NicoleC1971]

Wow, I’ve never asked any of my diabetes team specialists but is it likely for your children to get type 1. I’ve never really read upon this because I’ve been so focus on getting myself sorted I’ve never stopped to ask anyone.

I hate hypers and hypos the feeling it makes you feel is undiscribeable (if that’s a word or if I spelt it right I’m also dyslexic) I would say it was worse during my GCSEs as a teenager with stress with exams never got a break from my bloods trying to spike up.

Not likely. Type 1 is weakly genetic (double the risk which means 2% possibly more so via the dad, so maybe don't have a baby with another type 1! Type 2 is heritable but has to be triggered by diet.