Terrified about everything!

[intoinsulin]

Hey, I am v new to this forum so I hope I'm using this correctly!

I've just turned 17 and was diagnosed a month and a half ago with T1D, and I guess I had been diabetic for quite a while because I was in really bad DKA and had to spend quite some time in hospital, probably at least 2 months if not closer to 3 and a half. It's a massive shock as no one in my immediate family has it, and I've never met anyone with it before.

I'm really trying hard to keep perspective and to remember that it could be so much worse but I'm really really miserable and frightened of absolutely everything! I feel like its swallowing up my life and completely ruining it, because in such a short space of time it has already messed several things up! I feel like such a failure because it feels like I'm always high or low and constantly chasing after this horrible roller-coaster which makes me feel poorly all the time. My family don't understand this disease at all- half of them tell me if I sleep or stop stressing it will resolve itself and get irritated when I'm always testing (they think I'm using it as an excuse to be lazy or over-dramatic), and the other half are acting like it's a death sentence and say really anxiety-spiking things???

I'm really worried about long-term complications, especially since my control feels like its been so bad and I had such awful DKA (my ketones, blood sugar level in A&E which was actually a fasting level, and HbA1c are the absolute worst and highest I have ever seen, I have searched the net desperately for a case of it being worse and haven't found any which is super freaky), and I don't know if it's paranoia or genuine because my eyes and feet and hands and joints do feel funny sometimes!!!! I just really don't want to end up blind or with amputated bits or anything like that!

And then I'm also terrified of a severe hypo where I can't help myself because no one around me would know what to do! Esp. at night! I've never been below a 3.2 and really desperately want to keep it that way - is having a severe hypo just an inevitable part of being a diabetic??? And what is the likelihood of dropping dead in the middle of the night randomly despite being this perfectly controlled wonder-diabetic??? I must sound horrible with all these morbid thoughts but I'm just so scared and confused and alone ahhhhh

And what I'm most scared of is the thought that I will just live the rest of my life as a miserable anxious wreck constantly thinking and agonising about blood sugar levels and never being spontaneous - the exact opposite of the person I was before diagnosis.

Sorry for such a moody rant!!! Just am very freaked out (

 

[ert]

You're in the right place to get support and advice. Hang in there. There are a lot of people here who can help. You're braver and stronger than you realise, though you may not feel like that at present.

 

[Diakat]

Hi @intoinsulin
It’s tough being diagnosed and no one ever gets it like another diabetic.
I’m going to tag some people in (it’s Friday night so some might be out partying) but they are all T1 and still functioning- just like me!
@Mel dCP @porl69 @therower @WuTwo

 

[Kittycat_7_]

Hi,
It is a shock being diagnosed, you'll get your levels under control and feel so much better.
The outlook these days is so much better.
Take care

 

[Timostags]

I'm really worried about long-term complications, especially since my control feels like its been so bad and I had such awful DKA (my ketones, blood sugar level in A&E which was actually a fasting level, and HbA1c are the absolute worst and highest I have ever seen, I have searched the net desperately for a case of it being worse and haven't found any which is super freaky), and I don't know if it's paranoia or genuine because my eyes and feet and hands and joints do feel funny sometimes!!!! I just really don't want to end up blind or with amputated bits or anything like that!
(

I think this is really common when newly diagnosed, hospitals seems to deliberately scare newly diagnosed patients in a hope that this will motivate them. In my experience it takes MANY years of seriously un-controlled diabetes to trigger the side effects you are told about. I myself didn't even attempt to control my diabetes for the first 12 years and had seriously high HBA1C results over this time, but have no compications from this time. So I would try to relax about the complications.

And then I'm also terrified of a severe hypo where I can't help myself because no one around me would know what to do! Esp. at night! I've never been below a 3.2 and really desperately want to keep it that way - is having a severe hypo just an inevitable part of being a diabetic??? And what is the likelihood of dropping dead in the middle of the night randomly despite being this perfectly controlled wonder-diabetic??? I must sound horrible with all these morbid thoughts but I'm just so scared and confused and alone ahhhhh
(

Is it inevitable? I have just been on a course with other T1D's and there was a lady on the course that has had T1D for 50+ years and has never had a hypo that needed assistance, so no I wouldn't say it is inevitable... I myself have had 2 hypo's where I have needed help (over 17 years of T1D). I think we all need to accept that dealing with diabetes is tough and we will make mistakes, but there is no harm in this as long as we learn from those mistakes in order to prevent it from happening again.
On the same corse the question of "droping dead" was brought up and the diabetic specialist doing the course said that she has around 3000 patients under her care at any time and in 15 years of doing this she could count the number of people that had died directly from diabetes (Hypos and DKA) on one hand, it is extremely rare!

And what I'm most scared of is the thought that I will just live the rest of my life as a miserable anxious wreck constantly thinking and agonising about blood sugar levels and never being spontaneous - the exact opposite of the person I was before diagnosis.
(

It's a shock to the system and alot to deal with....at first.
Things get easier as you get experience, theres nothing diabetes prevents me from doing. Yes, when I eat or drink I have to work our how much carbohydrates are in it and inject but I now do this without much thought. Things are also getting much easier with newer insulins and technology like Libre and pumps. Just don't put too much pressure on yourself and ask for help if you ever need it.

 

[Diakat]

Actually the outlook these days is amazing, new tech gives us a great picture of what is going on, different insulin’s give us options and although it will always be there we can manage diabetes well.

 

[evilclive]

Welcome to the club

I've had quite a lot of severe hypos, all but one while asleep, and the worst I've had for after effects is a miserable headache and a very sore tongue from biting it. Normally my wife is around to bring me around, but I've had two while alone, and I still seem to be here

It's definitely worth putting the effort in to avoid them, but I'd not worry about them actually killing you.

The thing about T1 diabetes is it's both a very simple disease, but also can get tedious. We all have days when we go "I really wish I didn't have to do this" - eg not being able to simply fall asleep for me sometimes gets me down, but against that if you keep on top of things, it won't stop you doing anything. Want to do a spontaneous something? Grab a bag with your insulin and food, and then go for it. Fancy that cake? Stick a bit more insulin in, go for it. Want to do something which means missing a meal? Don't worry, just miss the insulin for that meal.

You're new at this, so there's a bit to learn, but the tools we have to help us are amazing nowadays. With the help of easy testing, once you're used to what the various combinations of insulin, food and exercise do to you, you can take control. And if you get it a little bit wrong (I've seen 20s and 1s in my time for blood sugar levels), so long as you don't do it all the time, it doesn't actually matter!

 

[therower]

@intoinsulin . A huge, big and warm welcome to the forum.
Every thought, every fear, every question and every moment of being alone is something us type1’s have all experienced .
I’m 28 yrs in to this diabetes malarkey. 55 yrs old now. Type 1 diabetic, no complications, eyesight fine, limbs all intact, father and grandad and still daft enough to go to the gym 5 days a week.
I’ve had perfect control for the past 28 yrs? No way.
You’ve got a lot to learn, far too much to start listing now. I’ll start with a few things and ideas for you to consider.
1. You are a Type1 diabetic. You have to accept it. See this part of your life as a new beginning, try to embrace and be positive with the new life you have. I know it sounds ridiculous but positivity will give you the best opportunity to live with your diabetes.
2. It is your diabetes, it’s unique to you. Family and friends will never fully understand what living with T1 is like. You can educate them how to help you succeed living with it but no matter how hard you try they’ll never how you feel deep down inside.
3. Don’t worry about your highs and lows so much at the moment. You’re new to this like a baby is to walking and talking. Control will improve, become easier and eventually second nature. In some ways early diagnosis is far more difficult because of the honeymoon period where your pancreas still , intermittently decides to supply insulin sporadically. Makes getting everything right very awkward.
4. There’s a lot of great T1’s on this forum. We will always be here to help and advise you.
@Knikki @helensaramay @Scott-C @Robinredbreast all long time diabetics to add to the list above.
Keep in touch with us.

 

[LooperCat]

I can’t add a massive amount to what’s already been said, other than to add my own hug and welcome. I was 23 at diagnosis just over 20 years ago, and it was quite a shock, so not hugely older than you are now.

Your life is not over, you just have a bit more to think about now - and you can do ANYTHING YOU WANT.

 

[Fairygodmother]

Hi @intoinsulin, you’ve come to the right place to find people who understand your fears. But please don’t let the worries get out of hand; with all the knowledge and tech there is now we have to work really hard at ignoring the fact we’ve got T1 to get to the point where we lose our sight, our arterial systems and our limbs. Some of us have even survived with T1 for 50 years or more and started out before the amazing tech was developed. I’ve had the pleasure of T1’s company for nearly 50 years myself and have no complications.
It’s a shame that your family either think it’s something to be dismissed or feared, it can’t be helping you. And it’s not surprising that you fear hypos. Do you still live at home? Could you let the people you live with know what to do if you hypo at night? Most often a sweet drink or couple of jelly babies, or maybe a few, will be enough to bring you back to a sensible brain state.
Have you heard about the Freestyle Libre, made by a company called Abbott? It’s a device that measures interstitial glucose and is usually worn on an arm. It shows you whether it’s most likely that your blood sugars are steady, rising or falling, and it gives a graph of your levels over the day so you can tell how your trends pan out, how you react to particular carbohydrates and what adjustments to make. It helps us to feel more in control. If you tell your Consultant your fears, and your need to be checking your blood sugars so frequently, you may be prescribed it.
It’s very normal to feel overwhelmed by T1 in the early days though I remember my main response to diagnosis was a huge relief that insulin would stop me feeling so unwell. Like you I’d slid into it over a while and had severe DKA on diagnosis.
T1 won’t go away, but as you get used to having it your own life should get easier, and it really shouldn’t hold you back, you’ll just get used to having the diabetes kit with you whatever you do, it’s a bit like making sure you’ve got some clothes on before you go out the front door. There are people on this forum who travel lots, who go to gigs, who play at gigs, who climb, who ride (horses, bikes and motorbikes), who scuba dive, who walk miles for pleasure, who’ve driven alone through West Africa, and I even knew one T1 who’d driven alone across the Sahara and not only survived but did it again. And that was way back in the 70s when insulins weren’t so good and the only tech was pee test. He did it with only short acing insulin which he wrapped up in a few socks as insulation!
So relax. This thing won’t kill you unless you ask it to. It’s really great that you’re testing and thinking so much about your blood sugar levels right now as you’re still at the stage when you’re learning how to run things. As it becomes more familiar it should become much easier: you’ll go on testing, because that’s the way to stay on top of it, but you’ll have a good idea of how to run it so that you can do what you want when you want.
I get it that you say it’s messed up several things. Are you worried about qualifications? Can you repeat a year and get it all going again? Whatever it’s messed up in this short time, 17 is young, there’s lots of time to get everything going again, or even start anew, once you’ve tamed this T1 beast!
In the meantime though, I think what you need is a hug. So have a T1 hug from an old granny.

 

[WuTwo]

@intoinsulin - there's really nothing I can add to the experience and knowledge that all the other T1's here have offered you. It will get easier - it just takes time. You're very young, and I know it's hard feeling so different to your mates. I wasn't diabetic as a teenager but I was epileptic with poor control and I was terrified of having seizures, especially in public.

Eventually I came to think that all I am is different my own way and that everyone has their own difference; my mum was deaf, my sister has COPD and is an alcoholic (2 years sober!!) - my friend in school was T1 - my boss has severe arthritis in most of his joints . Then there is the final group, and for them I feel really sorry - they lack compassion and even the ability to see that this isn't a good thing. And I view that as a terrible disability in this world.

You'll learn to feel what a hypo is like to you, and you'll be able to take action before you need help but never be afraid to ask. Real friends won't mind. Family won't mind. Explain to friends so that they know that if you look woozy it might be an idea to give you some jelly babies, or other sweets. Always carry sweets of some sort with you, just to be on the safe side.

There might be leaflets or something you can pass to your tutors, and the campus nurse office - ask your team. And you will not be the first diabetic your college has ever come across.

Be gentle with yourself, and try not to panic. Once you're over the initial OMG and settling down, your team will arrange for you to learn to carb count properly so you can match insulin required to deal with carbs munched. Then things will really start to improve. All you need is time and then you will be doing virtually anything you want.

 

[Robinredbreast]

Hi, sorry to read you have joined the club, but with help, support and good management it won't be so scary.
Take deep breaths, count to ten then breathe out. Just take baby steps, it will get easier to manage in time, also make sure you ask for help when you need it and have a good look around the forum, you're not alone.
Take care

 

[becca59]

Hi @intoinsulin Lots of good advice from the regular Type 1 posters on here. As they have said, it is early days and can be overwhelming. It will get better. I am sorry that the family hasn’t been as supportive as you would have hoped for. I am sure the diagnosis is a shock for them too. Ignore the comments from them about testing. Test as much as you want if it makes you feel better. It is only by testing that we start to understand this disease. My other bit of advice would be, start each day afresh. Don’t dwell on yesterdays results. They are in the past. You can learn from them, but cannot change them.
Keep asking questions. And remember, there is no such thing as a stupid question on here.

 

[kitedoc]

Hi @intoinsulin,
It is a shocker ¡! The big D.
Got it aged 13, doing OK 52 years later.
Others similar on this site. So these days, the outlook is even better with fancy insulins, meters, continuous meter readings and insulin pumps.
Yeah, it is a lot to take in and those so and sos in the hospitals can be right b's about putting the wind up us with stories and threats about complications.
Learning, trying things out with health team helping, and time are your allies, as well as us on site who between us all have made an absolute heap of mistakes.
So you too can learn from our mistakes and have less of your own.
If you look at the Home page you will see on the horizontal menu, 'Type 1diabetes' and 'Living with Diabetes'.
Look at what interests you and maybe somethings you may not have received education about as well as the range of diets.
Know that no one diet has received the full tick of approval from the NICE guidelines as they are called.
Ask about any subjects that interest you. And remember that the equation for BSL on one side equals diet +insulin + exercise + hormones + stress + weather and season + plus unknown factors on the other.
Not always simple but with time, practice, experience, questions and aswers, the right diet, insulin combo etc that good results are possible most of the time.
Rather than say much more now, ask about what interests and worries you most, particularly if reading say about hypos in the info mentioned above thru the Home page is not sufficient for you.
Asking questions and receiving answers can help ease anxiety and worry about things. Let you off walking on eggs shells as it were.
We have all been where you are now and lived to tell the tale, and some!!
In Australia where i live, we have a saying: if yiu never never go, you will never never know.
It is actually in a tourism ad but rings true.
Sometime we all had to extend ourselves, take the next step and try things out, and learn, rinse, and repeat.
Small steps, remember to breathe to ease stress, learn from victories as well as mistakes, read, read, read, ask ask ask. Work out plans with your health team to cover things like if you get a cold or similar, under what circumstances do you ring them, and steps to treat a hypo. Ask what we do as examples if that helps.
Best Wishes

 

[Daibell]

Hi and welcome. You've already had a lot of good advice. If you haven't yet been taught to carb-count with the Bolus insulin you should be shortly (or ask the nurse). Carb-counting to match the insulin dose to the carbs makes a big difference to hypo risk. With regard to nigh-time hypos, the liver is quite good at doing an emergency dump of glucose (glycogen actually) when it detects low blood sugar but be aware that if you have been drinking alcohol it can't do that so be careful until you gain experience. In 5 years I've only been down to the 2.5 area, that I'm aware of, twice. With carb-counting, experience and regular testing, most T1s shouldn't experience many serious hypos.

 

[Marie 2]

Big hugs! Lots of us here you can ask questions of and get your frustrations out and someone will always understand what you are going through. I am so sorry you are not getting the support you need at home, it's because they don't understand. So much good advice before me. I just want to add, it will get better as you get more used to it and learn what to do.

 

[bmtest]

Hey, I am v new to this forum so I hope I'm using this correctly!

I've just turned 17 and was diagnosed a month and a half ago with T1D, and I guess I had been diabetic for quite a while because I was in really bad DKA and had to spend quite some time in hospital, probably at least 2 months if not closer to 3 and a half. It's a massive shock as no one in my immediate family has it, and I've never met anyone with it before.

I'm really trying hard to keep perspective and to remember that it could be so much worse but I'm really really miserable and frightened of absolutely everything! I feel like its swallowing up my life and completely ruining it, because in such a short space of time it has already messed several things up! I feel like such a failure because it feels like I'm always high or low and constantly chasing after this horrible roller-coaster which makes me feel poorly all the time. My family don't understand this disease at all- half of them tell me if I sleep or stop stressing it will resolve itself and get irritated when I'm always testing (they think I'm using it as an excuse to be lazy or over-dramatic), and the other half are acting like it's a death sentence and say really anxiety-spiking things???

I'm really worried about long-term complications, especially since my control feels like its been so bad and I had such awful DKA (my ketones, blood sugar level in A&E which was actually a fasting level, and HbA1c are the absolute worst and highest I have ever seen, I have searched the net desperately for a case of it being worse and haven't found any which is super freaky), and I don't know if it's paranoia or genuine because my eyes and feet and hands and joints do feel funny sometimes!!!! I just really don't want to end up blind or with amputated bits or anything like that!

And then I'm also terrified of a severe hypo where I can't help myself because no one around me would know what to do! Esp. at night! I've never been below a 3.2 and really desperately want to keep it that way - is having a severe hypo just an inevitable part of being a diabetic??? And what is the likelihood of dropping dead in the middle of the night randomly despite being this perfectly controlled wonder-diabetic??? I must sound horrible with all these morbid thoughts but I'm just so scared and confused and alone ahhhhh

And what I'm most scared of is the thought that I will just live the rest of my life as a miserable anxious wreck constantly thinking and agonising about blood sugar levels and never being spontaneous - the exact opposite of the person I was before diagnosis.

Sorry for such a moody rant!!! Just am very freaked

 

[bmtest]

Hey, I am v new to this forum so I hope I'm using this correctly!

I've just turned 17 and was diagnosed a month and a half ago with T1D, and I guess I had been diabetic for quite a while because I was in really bad DKA and had to spend quite some time in hospital, probably at least 2 months if not closer to 3 and a half. It's a massive shock as no one in my immediate family has it, and I've never met anyone with it before.

I'm really trying hard to keep perspective and to remember that it could be so much worse but I'm really really miserable and frightened of absolutely everything! I feel like its swallowing up my life and completely ruining it, because in such a short space of time it has already messed several things up! I feel like such a failure because it feels like I'm always high or low and constantly chasing after this horrible roller-coaster which makes me feel poorly all the time. My family don't understand this disease at all- half of them tell me if I sleep or stop stressing it will resolve itself and get irritated when I'm always testing (they think I'm using it as an excuse to be lazy or over-dramatic), and the other half are acting like it's a death sentence and say really anxiety-spiking things???

I'm really worried about long-term complications, especially since my control feels like its been so bad and I had such awful DKA (my ketones, blood sugar level in A&E which was actually a fasting level, and HbA1c are the absolute worst and highest I have ever seen, I have searched the net desperately for a case of it being worse and haven't found any which is super freaky), and I don't know if it's paranoia or genuine because my eyes and feet and hands and joints do feel funny sometimes!!!! I just really don't want to end up blind or with amputated bits or anything like that!

And then I'm also terrified of a severe hypo where I can't help myself because no one around me would know what to do! Esp. at night! I've never been below a 3.2 and really desperately want to keep it that way - is having a severe hypo just an inevitable part of being a diabetic??? And what is the likelihood of dropping dead in the middle of the night randomly despite being this perfectly controlled wonder-diabetic??? I must sound horrible with all these morbid thoughts but I'm just so scared and confused and alone ahhhhh

And what I'm most scared of is the thought that I will just live the rest of my life as a miserable anxious wreck constantly thinking and agonising about blood sugar levels and never being spontaneous - the exact opposite of the person I was before diagnosis.

Sorry for such a moody rant!!! Just am very freaked out (

I was diagnosed at age 16, 40+ year ago and remember same worries I can only say this now what was I worried about nothing friends without diabetes are no longer around life took them another way and there are plenty of variations. I was diagnosed due to weight loss I tipped scales at 8stone at around 6ft spent a week in emergency ward on drips and further week in normal ward.

Forget going blind or amputations very unlikely this will happen with modern methods and control, I wont repeat my stories as I have said before. For instance I worried about blindness with diabetes only for stone to hit me in conrnea and reduced vision through it being damaged. I remember being obsessed with blindness so much I used to walk around with my eyes shut pretending just to see hoe difficult it would be moving around house but I matured eventually and daily living and experience helped me move on.

Dropping dead middle of night is impossible if it should have happened to anyone it was me in my youth many a time I would test when i got home after 10-15 bottles of Holsten Pils then adjust as per reading while not thinking straight and bang I would be hypo mid sleep and I lived alone and this I did many a time.

So in summary test inject eat and follow the current medical method and its plain sailing ith all devolpments today, I have no complications and in the begining never read up on the detail of complications etc and I have no complications at all and I have passed caring anyway it just another challenge.

 

[T1Dmummy94]

Hiya I was 17 when I was diagnosed with type 1 and I was I. The same boat as you no one in my family has it only so it was a big shock when I got it it ruined my life but all u have to do it breathe and just remind ur self ur stronger then the diabetes don’t let it rule ur life I’m 24 now and I still struggle but everybody does if u want to message me directly feel free I’m here if u have any question or even have a rant xxxx

 

[Dave Wilde]

Hey, I am v new to this forum so I hope I'm using this correctly!

I've just turned 17 and was diagnosed a month and a half ago with T1D, and I guess I had been diabetic for quite a while because I was in really bad DKA and had to spend quite some time in hospital, probably at least 2 months if not closer to 3 and a half. It's a massive shock as no one in my immediate family has it, and I've never met anyone with it before.

I'm really trying hard to keep perspective and to remember that it could be so much worse but I'm really really miserable and frightened of absolutely everything! I feel like its swallowing up my life and completely ruining it, because in such a short space of time it has already messed several things up! I feel like such a failure because it feels like I'm always high or low and constantly chasing after this horrible roller-coaster which makes me feel poorly all the time. My family don't understand this disease at all- half of them tell me if I sleep or stop stressing it will resolve itself and get irritated when I'm always testing (they think I'm using it as an excuse to be lazy or over-dramatic), and the other half are acting like it's a death sentence and say really anxiety-spiking things???

I'm really worried about long-term complications, especially since my control feels like its been so bad and I had such awful DKA (my ketones, blood sugar level in A&E which was actually a fasting level, and HbA1c are the absolute worst and highest I have ever seen, I have searched the net desperately for a case of it being worse and haven't found any which is super freaky), and I don't know if it's paranoia or genuine because my eyes and feet and hands and joints do feel funny sometimes!!!! I just really don't want to end up blind or with amputated bits or anything like that!

And then I'm also terrified of a severe hypo where I can't help myself because no one around me would know what to do! Esp. at night! I've never been below a 3.2 and really desperately want to keep it that way - is having a severe hypo just an inevitable part of being a diabetic??? And what is the likelihood of dropping dead in the middle of the night randomly despite being this perfectly controlled wonder-diabetic??? I must sound horrible with all these morbid thoughts but I'm just so scared and confused and alone ahhhhh

And what I'm most scared of is the thought that I will just live the rest of my life as a miserable anxious wreck constantly thinking and agonising about blood sugar levels and never being spontaneous - the exact opposite of the person I was before diagnosis.

Sorry for such a moody rant!!! Just am very freaked out (

Hi
I’ve just come out of hospital after severe DKA (blood sugar of 70) and very low PH. Although, I’m much older than you I feel the same about being a type 1 diabetic. I feel like it’s come out of nowhere and finding it difficult to cope with. Have you tried the helpline? They have trained counsellors
Good luck
Dave