Type 1 Diabetes is killing me

cocochannel · Sep 8, 2015

alicephoebe said:
This is exactly how I feel about carb counting. I don't want to faff around weighing,reading labels and then working out ratios and how much insulin I should take, I'm bad at math and I just want to eat my dinner! but one thing it has taught me is that with carb counting you can basically eat what you like (within moderation). I even had half a mcflurry the other day!

Half a mcflurry......****** that! With carb counting and correct dose you can eat the whole mcflurry!

Simon87 · Sep 8, 2015

Was diagnosed at 17 ! My life feel apart as I had no idea what diabetes was! Was up and down with my control some years good some not so good! Have only really started to controll it the last few years!! My diet has never been the problem it's the alcohol that is! I love a gd drink and that's my problem which I'm dealing with and getting better! Do you drink a lot? Is that what's causing u to get highs or is it just generally the whole of diabetes ?? You can get there, trust me ! Rome was not built in a day☺ if u need some advice message me ! Chin up

donnellysdogs · Sep 8, 2015

Mollyywilkss said:
Hi there, I really am very similar to you. I have the same sort of problem as you with my type 1 diabetes and really would like to speak to you more privately about it! Do you have Twitter? Follow me and I will direct message you! @Mollyywilkss best wishes xxx

Can we all twitter you??

Seriously.. Now for a real scare story.

An acquaintance (a friend of a friend) like you that i know died this year from not taking his insulin.
He gave up, ate and ate and ate with no injections. He was found approximately 3 days after he had died alone. He stopped testing on his meter just 5 days before the approximate time of his death.

We never knew what he went through alone. All his family and friends are devastated. Nobody knew the turmoil he was in.

I also had a nephew that hung himself in a carpark at the age of 20. His mum
And dad had visited him the day before but he refused to let them in. He was living by himself at the time. After his body was found by a member of the public we had to go into the house and clear it all up before his parents got there. Again nobody knew of the turmoil that our nephew was in.

You are reaching out for help and I have never seen such a response anywhere before to try and help somebody.

Please do not put yourself, your family and friends through this. We are all reaching out to you.

Please, you have reached out to friends which is more than these two male persons did. I do not want the same thing to happen to you. We are your friends.

We are here for you. Please let us know how you are.

philchap1 · Sep 8, 2015

Please get help, don't do this to yourself, we all want you to be well, we will help you cope but please get help now x

Phoenixvv · Sep 8, 2015

Hi all

I have been a long time follower via Facebook and this is the first post that actually made me sign up for an account to write a post.

The support here is fantastic and to be honest it's nice to be able to talk to other diabetics. Where I am I know one other diabetic person. Who to be honest after 30 years still doesn't understand it.

I myself have been t1 for 3 years with its own set of complications and have to say I know how you feel with the CBA approach to it.

I went through a fad of not wanting to inject or generally look at what I was eating until it nearly did kill me. My levels were approx the same as yours but I developed random breathing issues where I just couldn't catch my breathe it was very alarming this carried on for months most of the time getting out of bed made me feel like I was having a heart attack.

But I thought enough is enough I will conquer this disease I didn't want it nor ask for it. So I started doing a lot of research on different bits like how to stop injections hurting. Warm towel 5 mins before injection. Worked well I could now face the injection. Carb counting I didn't want to get into at that time so I went for I'm always high I'll just inject 10 after a reasonable size meal. A few days later I began to feel better the brain started to function again I had life in me again.

Excellent I thought so I started researching carb counting fairly easy once your get to grips with portion and type of food.

Now I go to the gym 4 times a week and that also makes me feel better.

The docs have also put me on metfor min aswell I generally now eat what I want when I want and feel great because of it.

So my advise to you is concentrate on injecting get them sugars down feel better physically that will also help the mind. Speak to your doctors about doing carb courses be the aggressor to the disease not the submissive. There are a lot of people on this site were all in the same boat and together we can all survive.

Chin up think positive and win back your thoughts

vix107 · Sep 8, 2015

really on your own????? there are thousands of us out here!!!! I used to be the same as you are at the moment ive now been type 1 for 26 years, its hard but then again its a lifestyle you cant escape unless your planning on dying, which will literally happen if you keep going this way, starting with organ failure etc etc sorry sounds like a lecture but im really trying to give you the bigger picture here!! it wont go away however much you want it to, we all want rid of the fecking disease but that's just life...... no-one said it was easy!! some of us have just been handed a rough end of the stick!! however diabetes doesn't stop you from living your life, yes you have to moderate some things and yes you have to do some unpleasant things like sugar testing and injections but I tell you what id much rather have this than a lot of other things!!

really though your defo not alone, but if you feel like it it's gonna make things much harder for you, even coming on here and posting is a step toward a tonne of support!! im looking at the start of a poorly functioning kidney because of the abuse I gave my body through my diabetes for so many years it really can get very serious!! to me having been in your shoes for a chunk of my life I can only hope you read and listen to the advice people are giving you on here and from a personal point of view these would be my tips to you.......
1. take a step back in your mind and realise diabetes does not have to be an enemy... you can work in harmony
2. you do have to go the extra mile to take care of yourself
3. with your current readings you are either injecting in the wrong places or have no idea what your insulin to carbs ratio is
4. it would hugely benefit you to see a specialist and be referred to do a carb counting course
5. your gp surgery will most likely either hold diabetic support meetings or know where the closest one is held
6. have a flipping massive moan as often as you like even the small things can rile me up, venting does help mentally even if not physically

if I can do it so can you!!! good luck

Trina_P · Sep 8, 2015

Ok, now stop it. Just stop it. Everything that has happened in the past needs to be left there and you need to start looking at the future and start setting goals. Even if your goal is just to take your background insulin as required and test 4 times a day fo begin with. Get into a routine and make yourself do it. You might not like it, but it's tough bloody luck. It's so unfair being diagnosed with it, I felt like my body had betrayed me. But you know what? It's treatable, and it is never too late! Once you start to get a control on your glucose levels, you with feel physically better, but mentally too, as well as the positive impact of feeling like you're in control of the diabetes instead of it controlling you. I know if you're depressed that it alters your perception, I've been there too, but try to find the positive in every day, even if it's as simple as someone holding a door open for you. What you really need if to speak to your DSN, get on a DAFNE course, and get some perspective. Life really could be so much worse. Please feel free to contact me at any time, I'm more than happy to offer any advice I can or just be a shoulder to cry on. If you're in the Manchester area too I'm more than happy to meet up.

starsandwishes123 · Sep 8, 2015

indiaemily said:
So I have been diabetic for almost 10 years (I'm now 21). I have never accepted it and still really struggle to come to terms with it all. My blood sugars are almost always 30+ or reading "HI" on my machine, I always have ketones, horrendous kidney pain, and all the symptoms of hyperglycaemia. I've now being diagnosed with depression and I am using my diabetes to make myself really unwell and I feel completely alone in this because I don't know another diabetic so people really don't understand.

Please don't think you are alone as you really aren't.. Reading your story is like looking into the mirror for me as I've went through the exact same thing (I'm 24 and been diabetic since I was 12). Thankfully I've decided that after numerous hospital stays over the past few years and a recent scare with my eyes as a result of bad control that I can't not take control any longer! Over the last 2 months I've began to take control and I feel SO much better and become happier than I could ever imagine.. It has not been easy and I still struggle some days but I know you can do it too.

Few words of advice, start by always doing your long acting insulin daily and testing your bloods when you do this and then gradually increase the number of times you test to 2 then 3/4 times a day as it helps to bring you back into a routine which seems to have been missing for you like it was for me. It'll also let your bloods begin to come down even just by a wee bit as if you go all out and try bringing your bloods down into normal range you'll feel just as rubbish as you do now believe it or not!

If you can get ourself on a carb counting course then DO IT, wou won't regret it as it should take you right back to basics in managing your diabetes and help build your confidence I know it'll all feel scary at first but there's so much of life you're missing out on by not controlling it, you're only young once and all that as they say haha! But yeah you're not alone and I believe in you, you can do it and we're all here every step of the way sending you a big reassuring hug xxx

Annaj · Sep 9, 2015

I am getting a little concerned with the fact that we haven't had a reply from her for quite some time

TooMuchGlucose · Sep 9, 2015

Annaj said:
I am getting a little concerned with the fact that we haven't had a reply from her for quite some time

Same, I hope she managed to get to a hospital.

Debsdelite · Sep 9, 2015

indiaemily said:
So I have been diabetic for almost 10 years (I'm now 21). I have never accepted it and still really struggle to come to terms with it all. My blood sugars are almost always 30+ or reading "HI" on my machine, I always have ketones, horrendous kidney pain, and all the symptoms of hyperglycaemia. I've now being diagnosed with depression and I am using my diabetes to make myself really unwell and I feel completely alone in this because I don't know another diabetic so people really don't understand.

Hi there I know exactly how you feel I have been type 1 diabetic for 21 years I am now 34 and I have never accepted it to be honest I have been hospitalised 3 times with DKA I suffer from an anxiety disorder. Just recently been diagnosed with it. But today I decided to go to my hospital appointment with the diabetic team because I need to sort myself out cos to be honest having diabetes scares the life out of me and I think if I don't bother with it I will end up with all the complications at a young age and regret not trying to help myself understand and control it.. I'm just gonna take one day at a time and I have to say today I managed to keep my sugars under 13 all day which they normally run into the 20's. Just want you to know that your not alone in how you feel and I hope that you can just take one day at a time in getting yourself better. Take care

ButtterflyLady · Sep 9, 2015

donnellysdogs said:
Can we all twitter you??

Seriously.. Now for a real scare story.

An acquaintance (a friend of a friend) like you that i know died this year from not taking his insulin.
He gave up, ate and ate and ate with no injections. He was found approximately 3 days after he had died alone. He stopped testing on his meter just 5 days before the approximate time of his death.

We never knew what he went through alone. All his family and friends are devastated. Nobody knew the turmoil he was in.

I also had a nephew that hung himself in a carpark at the age of 20. His mum
And dad had visited him the day before but he refused to let them in. He was living by himself at the time. After his body was found by a member of the public we had to go into the house and clear it all up before his parents got there. Again nobody knew of the turmoil that our nephew was in.

You are reaching out for help and I have never seen such a response anywhere before to try and help somebody.

Please do not put yourself, your family and friends through this. We are all reaching out to you.

Please, you have reached out to friends which is more than these two male persons did. I do not want the same thing to happen to you. We are your friends.

We are here for you. Please let us know how you are.

So true, DD. I have known several young people who either self harmed a lot, or took their own life. It's really hard to watch someone struggling like this. I hope you get the help you need, indiaemily.

ButtterflyLady · Sep 9, 2015

Annaj said:
I am getting a little concerned with the fact that we haven't had a reply from her for quite some time

I've seen threads like this before here and on other forums. It's only natural for us to worry, but often the person feels so depressed that they haven't got the energy or inclination to post for several hours or a few days. However, they don't realise that others will worry that something worse has happened. @indiaemily has said that she lives with family, so I think chances are they are checking on her and will get help if needed. I think all we can do is offer our support, as we have done, and just wait to hear. It's lovely that so many people care... I really want her to feel as supported as she is. Fingers crossed for her.

Megbot · Sep 9, 2015

Hi, I'm not sure if you'll even see this because there are so many other amazing messages to read through in response to your post. But I started an account here just to message you! Oh so special my dear. I'm 28 and a new type 1, but I suspect I've been that type 1.5 (slow onset kind) for a few years. My teens and twenties have been largely weighed down by a deep and heavy depression, when darkness didn't hold me back, anxiety always managed to. Now I'm not sure how much of that low period was mental illness and how much of it was unmanaged diabetes. Since I've got my sugars under control my whole world is easy all of a sudden! For example, when I wake up in the morning, I just wake up and get up, it's not the 2 or 3 hour struggle it used to be, normal people don't know the luxuries they're afforded. Anxiety? **** it, I feel like I can do anything now. I've even started doing highschool courses so I can get into college, basically blah blah my life got awesome. Part of that is probably just because in time we learn how to deal with our heartaches, but a BIG boost is the new energy I have from decent health.

So your sugars are out of control and you don't want to deal with this **** anymore, fair enough. Maybe how you've been taught to manage your health is a ****** strategy for you. My doctors were not encouraging of my choice to eat low carb to minimize my insulin use, but it works so **** well! There is a forum on here about eating low carb, and lots of websites out there with recipes (google ketogenic diet). Instead of poking all day and injecting before every meal, I only inject my long acting insulin once a day, the rest of the time I'm not giving my body carbs it can't deal with so my sugars are always between 4.5-7. I thought maybe this diet was working so well because I'm a new diabetic, but I'm lucky enough to have a friend my age who has had type 1 for 25 years to experiment on. He also started eating low carb-high fat (don't worry eating fat doesn't actually make you fat) and for the first time in his life he doesn't need his fast acting insulin either. Our blood sugars are both always in the "normal human" range, I never need to worry about them and live a pretty normal life. I carry beef jerkey and olives and seaweed snacks on me and order salad with meat at restaurants and that's the major difference. Will you miss spaghetti? Try spaghetti squash! Don't want to give up cookies? Use coconut flour! There's a ton of options and I know it's overwhelming, but if you start with just one low-carb meal a day and work your way up, your life is about to get awesome. **** diabetes, take your life back.

ButtterflyLady · Sep 9, 2015

Megbot said:
Hi, I'm not sure if you'll even see this because there are so many other amazing messages to read through in response to your post. But I started an account here just to message you! Oh so special my dear. I'm 28 and a new type 1, but I suspect I've been that type 1.5 (slow onset kind) for a few years. My teens and twenties have been largely weighed down by a deep and heavy depression, when darkness didn't hold me back, anxiety always managed to. Now I'm not sure how much of that low period was mental illness and how much of it was unmanaged diabetes. Since I've got my sugars under control my whole world is easy all of a sudden! For example, when I wake up in the morning, I just wake up and get up, it's not the 2 or 3 hour struggle it used to be, normal people don't know the luxuries they're afforded. Anxiety? **** it, I feel like I can do anything now. I've even started doing highschool courses so I can get into college, basically blah blah my life got awesome. Part of that is probably just because in time we learn how to deal with our heartaches, but a BIG boost is the new energy I have from decent health.

So your sugars are out of control and you don't want to deal with this **** anymore, fair enough. Maybe how you've been taught to manage your health is a ****** strategy for you. My doctors were not encouraging of my choice to eat low carb to minimize my insulin use, but it works so **** well! There is a forum on here about eating low carb, and lots of websites out there with recipes (google ketogenic diet). Instead of poking all day and injecting before every meal, I only inject my long acting insulin once a day, the rest of the time I'm not giving my body carbs it can't deal with so my sugars are always between 4.5-7. I thought maybe this diet was working so well because I'm a new diabetic, but I'm lucky enough to have a friend my age who has had type 1 for 25 years to experiment on. He also started eating low carb-high fat (don't worry eating fat doesn't actually make you fat) and for the first time in his life he doesn't need his fast acting insulin either. Our blood sugars are both always in the "normal human" range, I never need to worry about them and live a pretty normal life. I carry beef jerkey and olives and seaweed snacks on me and order salad with meat at restaurants and that's the major difference. Will you miss spaghetti? Try spaghetti squash! Don't want to give up cookies? Use coconut flour! There's a ton of options and I know it's overwhelming, but if you start with just one low-carb meal a day and work your way up, your life is about to get awesome. **** diabetes, take your life back.

I LOVE this post. Welcome to the forum and please stick around, and share your experience and enthusiasm with us, especially with young people with T1 and T1.5.

**** diabetes, indeed!

nigelho · Sep 9, 2015

indiaemily said:
So I have been diabetic for almost 10 years (I'm now 21). I have never accepted it and still really struggle to come to terms with it all. My blood sugars are almost always 30+ or reading "HI" on my machine, I always have ketones, horrendous kidney pain, and all the symptoms of hyperglycaemia. I've now being diagnosed with depression and I am using my diabetes to make myself really unwell and I feel completely alone in this because I don't know another diabetic so people really don't understand.

Sorry that you are struggling with your diabetes. I struggled during the first 3 years after diagnosis( 60 year old then) as my then care tean couldn't understand why my BSs were up and down and why I had lots of hypos and I felt like death every day. I finally collapsed at work due to exhaustion ....my legs gave way. Locum doc then referred me to Addenbrookes Diabetes Team who changed my insulins and put me through the DAFNE Course. That course sorted me out within the 5 days course and I found out all the whys ....that Kings Lynn should have known....and now I'm under control. I've changed my insulins twice since I did the course in 2013 as things change like novorapid just stopped working. I'm now on Apidra and Humulin I and I also take 2 X 500mg metformin SR tablets with each meal. I started on 1 tablet per day and just went up to 6 tablets a day through trial and error. I've always completed a food diary so I can see how my CARBS are vs my insulin ratios. Activities using my arm muscles can cause me hypos very quickly so I have to watch out when I do any form of DIY, even cutting the grass with an electric mower. Please ask your DSN to put you on the DAFNE Course. You'll then get the info to look after yourself. I can e-mail my DAFNE nurse if I need help. My course gave everyone the nurses e-mails if we required help and we were given meters that read ketones. Good Luck. Just remember that every insulins don't work for us all and even ask to try metformin SR tablets if you are insulin resistant...like me but you'll need more than 1 tablet a day. REDUCE THE AMOUNT OF CARBS YOU EAT AND CARB COUNT YOUR MEALS.

Deblourob · Sep 9, 2015

indiaemily said:
I've tried psychologists, health psychologists, therapy sessions, hospital stays and I can't accept it, I have never been in control of it and I don't think I ever will
so you've had it since you were 11 too?

I was also 11 when I was diagnosed the week before Xmas it was hard and in my mind I was saying if my friends can eat or drink whatever then so can I. Bad idea I'm now 37 and it took me a very long time to accept it and this might sound harsh but you have to try as I now have end stage kidney failure and with 2 young kids to look after and dialysis 3 times a week it's hard going. Seek help from family and friends I found them better than any professional. I am now in much better control but it's too late the damage is done you still young enough to do something about it. Good luck I hope things work out for you I know it's hard.

jackrabbit41 · Sep 9, 2015

I'm 16 and I've had it since I was 7. Just fricken deal with it. You gotta test more and or the **** needle in your leg. It'll be worth it. My grandpa was on dialysis for 8 years and trust me, you don't wanna be doin that **** at 21

jackrabbit41 · Sep 9, 2015

jackrabbit41 said:
I'm 16 and I've had it since I was 7. Just fricken deal with it. You gotta test more and or the **** needle in your leg. It'll be worth it. My grandpa was on dialysis for 8 years and trust me, you don't wanna be doin that **** at 21

Oh and also, don't add up every little carb. It's a waste of time. Just do what's close to it. I honestly don't even look at labels much any more.my a1cs have been in the 7s for years. Anyway good luck

dont let carb counting and any thing else control you

Robinredbreast · Sep 9, 2015

No one can go back and make a brand new start. Anyone can start from now and make a brand new ending

What lies behind us and what lies before us, are tiny matters compared to what lies within us
( Ralph Waldo Emerson)

Take care x

Type 1 Diabetes is killing me

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