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Type 1 Diabetes is killing me

I'm 29 and have had type 1 since I was only.23, I also did not want to accept it and carried on eating and drinking as normal with my meter always saying 'hi' had dka numerous times with lengthy hospital stays but still nothing made me change. Until 18 months ago when I was about a week away from death, and was then diagnosed with something called gastroparesis, which is where the vagus nerve is damaged from high bms and it has paralysed my stomach which makes me vomit constantly and very very poorly, my weight dropped to 5 and half stone and I now have a peg tube fitted in my stomach, please do Google the condition, I wouldn't wish it on my worst enemy, you really do need sort your bms out there are so many health risks involved with poor control, I found that out the hard way, hope you feel better soon
 
Hello. I'm really sad to hear you are struggling. So much so that, like others, I've signed up to offer you support.
I only got diagnosed as a type 1 a few months ago. I didn't see my diagnosis as a burden but a relief. I hadn't felt well for a long time so to know what was wrong with me, and after a few days in hospital, I haven't felt as good as I do now for longer than I can remember.
Like juicyj has said I also think you need a type 1 buddy to help you make sense of all this. I don't really use this forum but it's appeared as a post on my Facebook page. If you would like to add me then I can try and help you as much as I can. Like you I have no one I know that is a diabetic but I seem to manage my levels well and I'd be more than happy to help you.
 
I know the feeling I've only had 3 years now :/ and I had the hang of it for the first year but now it's just getting worst my hba1c or what ever they call it is really high
 
Hello Indiaemily, I'm really sorry you are feeling this way and have done for a long time. I have had type 1 since I was 4, I am now 30. I completely get how you are feeling and the reasons why, I am glad you have found the forum and hopefully this will be the first step in getting on track as we all know how you feel. When I have a down day I remind myself that if diabetes is the card I have been dealt then thats much better than some other conditions out there and I can have a normal life.
Please please start to take control, you rule it, it doesn't rule you.
We are all here for you, big hugs lovely xx
 
I 've been diabetic for 20 years, 10 of these years I was not in control and I was also treated for depression. But, I do want to live so I had to change. I test 10 times per day. What helps me to control is that->I eat almost the same foods every day and I know how much to inject for the foods I eat. If it is high, and you are not sick with any other illness to make it high, then you just not injecting enough for the food you consume. That you can control. If you say you can not then you just programmed your body not to control. Please tell yourself you can, even if you do not feel like you can. I might hold un unpopular belief but diabetes is an amazing disease to have because it forces you to live a healthy life style: eat healthy, exercise. If you do that you can live longer than the people who eat all they want and drink all they want. It is a gift to have it because if you are in control of it you will live long and will use the energy to achieve many great things! I wish you success, I wish you find strength to control your blood sugars. Taking care of our blood levels allows us to not worry about them and worry about something else- like achieving a dream, helping another human being, creating something beautiful. Do check your blood sugars before and after you eat, calculate your carbs, inject appropriate amounts of insulin. We all have to do it, it is difficult but it can be done If you need more help, send a message With best!
 


I'm guessing that your levemir is the longacting, I'm on humulin I and believe me that is the one you need to take all the time, it is always working in the back ground and you will probably need less novorapid through the day, will also help with your ketones and you generally feeling S***
 
I am 44 diagnosed t1 three years ago, I felt my life fall apart as I had been very fit and active, healthy lifestyle etc etc no family history at all. And suddenly my life crashed. I was mid way through a application process for my life long ambition of work and had a medical and couple of fitness runs to do. I remember coming home from hospital with my wife and telling my 2 daughters and I burst into tears. After about 4 weeks of many hypos and depression I decided to take control. I put my weight back on from 9st 2 to 11st which was my usual weight and I started running again. I got offered the dream job I had waited forty years for and I have run a marathon since. Yes I test and read at 15+ even 20+ on the odd occasion but I generally run between 5 and 12 work pending. I control the type 1 it DOES NOT control me. Equally as importantly I have a fantastic circle of family friends and work colleagues always looking out for me and they all ask and understand pretty well and are always supportive. I know many people will be struggling and i wish I could offer some kind of inspiration and advice but all I can say is you can achieve, you can control and you can win. Believe in yourself and remain positive, bounce back from the downs and be proud of the results. Good luck and the very best wishes to all t1's. If I can do it , you can too. I work in emergency services and test between 5 and 10 times daily when working and I work shifts. I still eat normal and enjoy many treats and have a drink too. Don't over complicate it, keep it simple and react with your insulin to your levels. Indiaemily if you want to pm me u can talk you through my coping mechanisms and offer support
 
I'm 34, been T1 since I was 2 years old. I went through this in my teenage years, and still never really looked after myself properly up until I met my wife 7 years ago... She made me want to stay around longer...

Like others have said, a diabetybuddy is what you need to start off with. Someone who just "gets it". I know this would have been incredibly good for me...
But find someone who has had it for years, and can help you analyse the data that you will start collecting... There is so much information to collect, take in and understand, but trust me - it's doable ;-) I've learnt almost everything from scratch within the last 3 years... Once you understand it, then it becomes much less of a chore.

By all means PM me if you need help, or just to vent.
Sometimes just venting and screaming about it is helpful

Take care of yourself...
 
Hello! I mirror everything everyone else has said. I am currently trying to recover from the same issue. I am 20 and have been diabetic for 11 years, starting to get neuropathy in feet I think. Feel free to message me xx
 
indiaemily said:
I'm sorry for being so ignorant but I'm in self destruct mode my ketones are 6.2 and I'm not taking an novo to bring it down, I've just hit rock bottom
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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!
 

Sometimes books do no good. There's too much information to read. You need someone who can tell you the areas to focus on, help you get to grips with them, then move onto the other bits.
I did without my long acting on the odd night here and there during my teens. Ended up in hospital the next day, without fail.
You can get by with missing the odd novorapid, but don't miss the levemir... This will really screw with you.
Are you supposed to split dose? If so, and you forget to take it (I know what highs do to my memory ;-)), see if they can switch you to Lantus. It might be a better long acting insulin for you... You might be able to get away with a single dose of that one per day as generally it lasts a bit longer than levemir
 
Hey indiaemily .

It's great that you have joined the forum as there are so many people on here to try and help you , and know exactly where your coming from with experience .
I'm not much older than you I'm 23 and have had diabetes since I was 7 . It's defiantly a different way to life than any of us expected to live , but unfortunately there isn't anything that any of us can do about this . I try to look at diabetes slightly differently yes I have it and it's a big pain in the bum , but I won't let it win or beat me , I'm in control of my diabetes it does not control me , I don't let it win by testing and injecting in a way I feel like I'm winning and not loosing .
When you are in such a dark place , it can be hard to listen to what anyone has to say or tells you to do as you want to do what you want to and that's that . The main thing I've seen you post is that you do want to take control and you do want to sort your diabetes out I think there's your starting point , and it's a big thing that you want to do that you just need to try and bring that to the surface and act on it . As horrible as it sounds by not injecting and not testing to much is only hurting your self and no one else .
The earlier you sort of accept that you are a diabetic the easy things will be . Defiantly start off slowly so things don't get too much to quick , even by starting to inject your background insulin and injecting when you eat , and do two bms a day . Everyone has to start somewhere and it's never ever too late to start .

I really hope you can sort things out for yourself real soon , look after yourself .
 

Hey hun. Completely understand how hard it must have been for you given the age you were diagnosed. I was diagnosed with Type 1 when I was 2 years old and always remember that my teenage years were when I had the least amount of control over my diabetes. I wanted to be like everybody else and eat what they ate. The thought of having to check my blood sugars in front of anyone filled me with dread so I just ate and didn't think of the consequences. For you I would just follow my philosophy that you control the diabetes and not the other way round. It's very easy to get stuck in a rut but once you work your mind round to the fact that with better control you will not only probably feel better in yourself but also have a lot more energy, then the rest is just a long and healthy life. Hope this gives you a bit of inspiration. Caroline x
 
Hi hun I know how you feel iv had type 1 since I was 5 I'm now nearly 27 and feel I have no control troll over it I had few therapy sessions but didn't feel they helped my bloods are always in top side of the teens when I do test which is very rarely I am on an insulin pump and that alone has kept me out of hospital been on this for past 15 yrs ish and it's kept me out of hospital with ketones I would ask about this for yourself but I rarely take my insulin I know I should but it's like if I don't I can pretend I don't need it and it's not there bad thing is iv already had 2 lots of laser treatment on my eyes too I need to pull myself together but it's so hard to do so even with support from family and hospital hope you can try get back on track if you ever want to chat just msg me. Xx
 
First and foremost. You are not alone. There are thousands of us out there. I have been type 1 for 32 years, and went through the same as you at first. It wasn't easy at the time, But you will get through this. I turned myself around by thinking, why worry about something i can't control. (meaning, the fact that I have this illness, not that I can't control the diabetes.). You need to go to your diabetes clinic or GP. And tell them how you feel, and you don't wish to be like this anymore. They will understand and are the best people to give you the help you need. If you wish to contact other diabetics. there are many other forums on the web. When you are on facebook, search "diabetics round the globe". I use this one. it is run from Australia, By a young lady who is the same age as you, her name is Jo Harborow. It has 900 members from all over the world. It is a fantastic source of information about diabetes. You only need to ask a question, and you will get many answers from the lovely people who use it. Please don't feel so isolated. there are people here to share your worries and problems with. We have all been through this at one time or another, and will help in whatever way we can.
 
Hi
I'm 22 & I've had diabetes 20 years this month & I know exactly what you're going through! I was reasonably well controlled as a child because my mum was a nurse & was like a drill sergeant when it came to my diabetes but when I hit my teens everything went haywire. About 7 years ago my diabetes started going South & it got seriously worse in the last 2-3 years! I too developed depression because of my high bloods, I also stopped checking them, ate what I want when I wanted & didn't really care about my insulin
I was exactly like you, ended up with DKA affectively dying so I completely empathise with you. All I'll say is to get on top of your diabetes you have to tackle the depression! I too don't accept my diabetes, I'm in total denial about it at times & I fight against it at every opportunity...I was put on Lustral for a while (an antidepressant) which helped me a lot with my depression & therefore I was able to attempt to get on top of my blood sugars! It's a horrible disease but the reality of it is this: it will either kill you or you can stop it. You can do everything right and your bloods still won't be great but you have to try! We're young and we have lives ahead of us, don't let diabetes take that from you!!! I've started setting small goals for myself such as checking my bloods three times a day (as opposed to once a week) & taking insulin with my meals. It's been a difficult process but I'm doing it & you can too! You just need support & someone who understands. If I can do it you definitely can & I hope you know that you're not alone in this
 
Hi,

I'm a Type 1 diabetic first diagnosed when I was 7 years old, so basically have and will have (if and until they make a cure) it for the majority of my life. I don't know if I can help at all but I'm 19 going on 20 and about to go into my second year of University. And my sugars before this past one-two weeks had been in the teens and 20s, too high for my health, and already in the past year I've been feeling the horrid effects of it such as getting blurry vision for a few days (and I mean so much so that I'd started to struggle to read sign posts), mood swings (I've had a lot of depression-based moments, absolutely horrid), always thirsty and tired, then other female related conditions that I'm a little too shy to admit on a forum but you get the idea.

The point is, for so long I've been and still do feel like you do, or how it sounds from what I've read, the days where I want complete freedom to eat and drink what I want and not feel guilty about having a high blood sugar, fed up of pricking my fingers and injecting into my skin which can cause bruises and bumps that don't go away. And the worst bit was that I didn't have anyone close enough who was going through the same thing, even the doctors kept messing up my insulin orders and made me so frustrated I actually broke down in tears one day when I went in to try and explain just how important that I get the medicine otherwise all of the above that I mentioned would keep happening. I didn't even realise things like stress could effect my sugars until I joined the Diabetes Facebook page. And the reason I joined was because I felt like you, like I just couldn't take control.

I'm sorry for the waffling but if you or anyone else wanted to chat or become diabetic buddies or something, I'd be happy to try and help and relate. I've said a lot about myself because I thought perhaps you'd like to know a similar but also different perspective on the matter?

I've made a new resolve to face my diabetes and focus on controlling the sugar levels, and now that I have a lot of the bigger problems have gone away. The emotional part is one of the hardest, because even your family can struggle to understand, and after dating my boyfriend for nearly 2 years I still have to explain things to his family. The annoying part is when strangers come up to you and say ignorant things such as my boss when I first told him about my condition "Well a healthy looking girl like you doesn't look overweight or like you eat much". The truth is I actually LOVE food and eat a lot, but that I got diabetes genetically and through a distant cousin, not because of a bad diet or my weight. So I bit the bullet and explained the difference.

I fully support you and really do hope things improve from now on, keep an eye out for other diabetics online like on this forum, I think that the age variety and experiences really helpful and inspiring to motivate me to take care of myself. Learning to love yourself will help you to love those around you even more <3 xx
 
What an amazing response, so many people can empathise with what you are going through, you really aren't alone.

However with your current ketone reading you need to seek medical assistance, this amount of ketones is dangerous and will be making you very poorly, getting help is an absolute priority now, can someone take you to a&e ?

Please seek help or ask a friend to take you to a&e, your life is too precious x
 
Emily, are your parents around or a friend close by? Are they aware of your ketone readings.. you need to go to a&e you will feel so much better once you get through this. Being this unwell won't help toward how your are feeling enotionally mentally and physically too. I'm sure you have people that love you and care about you.. I'm sure if they knew the severity of your situation they will do everything they can to help. You will get through this and be happy you will look back and be so glad you made changes to better your life. Tell someone what's going on and get some medical help immediately.. let everything go just for a moment and accept some help. You are so young with your entire life ahead of you. Don't let diabetes control you...you control it.
 
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
 
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