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Alicey

Alicey

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Relationship to Diabetes
Type 1
So just come out of hospital, having been told I have Type 1 diabetes. All very scary, shocked, and bit upsetting tbh. I know it's something that many people have and life a decent life with, but having only had a week of 'symptoms' and main reason for doc appointment was due to vision drastically changing; it's rather daunting, and frightening being sent to hospital, and put on drips for 26 hours.

Now home with all my equipment, and contact for diabetic nurse. Waiting for clinic appointment next week to go over things further. Already have so many questions. Was given the basics at hospital, but already panicking that whatever I eat is affecting my readings.

Went into hospital with reading of 20, and long term reading of 91. Other last two days (at home), have had reading ranging from 25 to lowest of 17.7.

Just would like some support and advice. Thanks, Alice :(
 
Hi Alice, welcome to the forum. I'm sure someone with the right experience will come along and help you through your current minefield. Sorry I'm not, being a T2 and not taking insulin. There's some very useful reading you can do, listed in the Sticky at the top of this Newbies section. I hope things start to improve very soon.
 
Welcome to the forum, Alicey. I'm assuming you're an adult? I ask, because type 1 diabetes tends to make itself known a bit more slowly at increasing age.

Easier said than done, but don't panic. Food will affect your finger prick readings, but that's what's meant to happen. Initially, your pancreas is probably still producing some insulin, irregularly, so that makes it difficult to get doses right. Your body has got used to higher levels, so if you immediately went statright back to normal range, you'd feel hypoglycaemic at levels that are above normal. By gradually reducing levels, you are less likely to feel hypoglycaemic.

Good to hear you have diabetes nurse support lined up. In the meantime, record everything you can think of - food, insulin, physical activity, infections etc, so you can go over records together with nurse. Write down questions as you think of them, so that you can ask when you see nurse. We'll try to help as much as possible, but some things, like the arrangements for suppliing sharps bins and collecting when full, are specific to each council area.

Apart from diabetes, what else is important in your life eg family, work, hobbies, sport etc? Don't loose sight of those things 🙂
 
Hia Alicey, the first good thing is you've joined a forum and there's a hell of a lot of advice and support on here.
It's a big shock to begin with. There's never a good age to be diagnosed with T1 diabetes. As a child it must be terribly difficult to control and difficult for parents but also as a young adult in your early 20's you're a bit more set in your ways so it's harder to change. I was 32, very independent and a bit for a risk taker to be honest. That element had to change as you'll find that events, holidays and shopping (important to us girls) takes a bit more planning now.
For me it took about 3-6 months to adjust mentally and start accept it. After that, life went gradually back to normal and I ruled diabetes and not the other way around. I wish I had joined this forum back then though as I know I was a bit too slap dash and blas? for a while.
So advice - don't miss appointments with the hospital, try and get yourself on a DAFNE course early on so you can learn to carb count, talk openly to close family and friends and importantly try to enjoy life. It will be all consuming for a while and it will always be there (I'm not going to try and hide the fact that most of us have some problems along the way), but with some good support and a healthy bit of 'can do spirt' you'll be fine. Take care and stay in touch. PS - I always find that a new pair of shoes works wonders for my spirits lol
 
Welcome Alice you will get loads of help from the guys on here, it's all so daunting to start with but if you have any questions ( which no doubt you have ) don't be scared to ask on here these guys are great, plus they have years of experience of going through what your going through now. Best of luck ..
 
Hi Alice, welcome to the forum and sorry to hear about your diagnosis. My son was diagnosed at the age of 4 and I remember what an awful shock it was.

Whatever age you are, I would highly recommend you get yourself a copy of the book "Type 1 Diabetes in Children, Adolescents and Young People" by Ragnar Hanas:

http://www.amazon.co.uk/Type-1-Diab...8&qid=1389533034&sr=8-1&keywords=ragnar+hanas

This book covers all the basics and many more advanced topics, all in an upbeat can-do style that will leave you feeling a bit more in control of things. It is also a mine of information and help when you need advice out of hours!

It's very early days for you, so try not to worry too much about your BG levels in the short term. Eventually, you will be aiming to keep them in the normal range for a person without diabetes (4-7 mmol), but nobody with type 1 can achieve that all the time (my son is in that range maybe 50-60% of the time, with all the experience we have). Because you are newly diagnosed, starting on insulin may kick-start any remaining beta cells in your pancreas, which could then start secreting insulin again for a while (known as a "honeymoon period"). For this reason, newly diagnosed patients are usually prescribed very cautious doses of insulin initially, and these will be increased slowly until your BG levels start to come down closer to normal. If you rush to increase the insulin, there is a greater risk of you having lots of hypos (low blood sugars <4mmol).

I would say in the absence of specific advice from your clinic team, that you should try to eat regular meals, have some carbohydrate in each (bread, potatoes, rice, pasta), and keep a record of what you have eaten, along with your BG test results and the insulin doses taken. You will then build up a picture for your team to advise on the appropriate insulin doses for you. If you can count the carbohydrates in your portion, even better - there is a good book and app called Carbs and Cals which is very useful for this.

Always keep some hypo remedies with you (especially when you go out) - e.g. dextrose tablets or jelly babies.

Don't worry, it seems daunting but you will learn a lot very quickly over the next weeks and months, and realise that with a little planning and forethought there is nothing that a person with diabetes can't do! 🙂
 
Welcome to the forum Alice 🙂
 
Hi Alicey, "you are not alone" on this site. It is a good 🙂 sorry you had to join but welcome 😉
 
Welcome to the forum Alice. Don't be afraid to ask questions It's how we all learned.
 
Welcome Alice - I can only try and imagine how you are felling as I was diagnosed age 4 so it's a way of life for me. Even with all my T1 experience, the help on this site has been invaluable. keep talking to us and ask about anything that worries you - there are always people who can help. 🙂
 
Hi Alice,

Welcome 🙂. It's an incredibly scary time, but I guess the one thing I can say which may provide some comfort is that it does get easier, the fear and worry does subside and you will get the hang of it all soon.

It's great you have questions - never be scared to ask them (I'm 2 and a bit years on from diagnosis and I still ask questions and doubt I'll ever stop!). It's also great you've found this forum, there are people on here who are fantastic and supportive and have such a wealth of knowledge.

Try not to be too overwhelmed - life does get back to normal before you know it - you just tend to become slightly more organised than others!

Take care
 
I'm so overwhelmed with all the responce on here. What I'm finding difficult at the moment is for it to sink in. I know it's not cancer, but I know it'll be with me for life. I feel like those I've told have been like oh Yes I know someone with Diabetes (my friends Dad, or Aunt friend etc), but it's a bit like you want to scream well I have it, and don't want it and didn't ask for it.

I suffer with anxiety depression anyway, (have been on fluxatine for over a year now), but feel it's not helped by this 'development'.

I've come into work today, but already wish I hadn't. The anxiety is abit overwhelming right now. One minute I want to cry, then next just want to tell myself to get on with it, and then to scream at people for asking questions. Yes I want people to understand, and be a bit sympathetic right now, as I can't do as much as I normally can (mostly due to being tired after hospital stint, and no sleep with worry), but then I don't want people to think I'm 'ill'.

Do these feelings go away? Are they normal? Or am I overthinking things?

I'm 23, 24 in august, and this is completely out of the blue. No symptoms, except for week before last, and like I said before reason for check was due to eyes. Which I'm glad to say I feel are already changing.

Thanks everyone, I know feel I have people to talk, who won't judge, or say oh It's only diabetes, just eat better and get on with it. 😱
 
Copepod said:
Welcome to the forum, Alicey. I'm assuming you're an adult? I ask, because type 1 diabetes tends to make itself known a bit more slowly at increasing age.

Easier said than done, but don't panic. Food will affect your finger prick readings, but that's what's meant to happen. Initially, your pancreas is probably still producing some insulin, irregularly, so that makes it difficult to get doses right. Your body has got used to higher levels, so if you immediately went statright back to normal range, you'd feel hypoglycaemic at levels that are above normal. By gradually reducing levels, you are less likely to feel hypoglycaemic.

Good to hear you have diabetes nurse support lined up. In the meantime, record everything you can think of - food, insulin, physical activity, infections etc, so you can go over records together with nurse. Write down questions as you think of them, so that you can ask when you see nurse. We'll try to help as much as possible, but some things, like the arrangements for suppliing sharps bins and collecting when full, are specific to each council area.

Apart from diabetes, what else is important in your life eg family, work, hobbies, sport etc? Don't loose sight of those things 🙂
Click to expand...

Hiya, yes I'm 23, bit of a shock with all this. I've begin to put some questions together for my clinic appointment, which I believe should come through this week. I speak to nurse each morning with readings, and have been told everytime to increase insulin. I'm now at 12 a time.

Yes difficult to think about anything other than 'IT' right now. But enjoy me dog - Elvis a pug, he's gorgeous (by I'm bias), shopping, occasional swimming, very close to my mum - who has been fab these last few days. I'm a trainee account, and doing AAT in evenings - hard work but enjoy it.

Thanks🙂
 
Riri said:
Hia Alicey, the first good thing is you've joined a forum and there's a hell of a lot of advice and support on here.
It's a big shock to begin with. There's never a good age to be diagnosed with T1 diabetes. As a child it must be terribly difficult to control and difficult for parents but also as a young adult in your early 20's you're a bit more set in your ways so it's harder to change. I was 32, very independent and a bit for a risk taker to be honest. That element had to change as you'll find that events, holidays and shopping (important to us girls) takes a bit more planning now.
For me it took about 3-6 months to adjust mentally and start accept it. After that, life went gradually back to normal and I ruled diabetes and not the other way around. I wish I had joined this forum back then though as I know I was a bit too slap dash and blas? for a while.
So advice - don't miss appointments with the hospital, try and get yourself on a DAFNE course early on so you can learn to carb count, talk openly to close family and friends and importantly try to enjoy life. It will be all consuming for a while and it will always be there (I'm not going to try and hide the fact that most of us have some problems along the way), but with some good support and a healthy bit of 'can do spirt' you'll be fine. Take care and stay in touch. PS - I always find that a new pair of shoes works wonders for my spirits lol
Click to expand...

Oh yes, love the idea of a new pair of shoes :D I'm already finding I may need a bigger bag for work, with my meter and pen.
 
Hi again Alice,

What you are describing is perfectly natural - in fact it's like a grieving process, where you are grieving for your "lost good health". At the moment you are still in shock, and it will take a while before you can move on to acceptance and eventually to making the diabetes just a small part of your life. Give yourself time, and do get the Ragnar Hanas book I mentioned previously - he has a whole section just on the impact of diagnosis and how hard that is.

Ignore all the people that can't wait to tell you about their "experience" of diabetes - I well remember all the people who happily told me about their Granny who went blind or their cousin who had his leg amputated. NOT what I wanted to hear when my little 4 year old had just been diagnosed! However, the public at large is HUGELY ignorant of what diabetes entails, especially type 1 (brace yourself for people telling you what you can and can't eat - btw you can eat anything you like as long as you have the right amount of insulin - and also people saying things like "I couldn't possibly inject myself" - which of course they could if the only alternative was to die! People also try to cheer you up by saying that there are worse things you could have - maybe so, but it's still better not to have it! Allow yourself to grieve, but also get yourself educated about how to manage your diabetes, so that you control it, and it doesn't control you!

What I'm trying to say is, yes it's totally sh1t to have this diagnosis, but the good thing is that insulin treatments today are the best they've ever been, and people with type 1 who learn about their condition and do all they can to manage it well have the same life expectancy as people who are not diabetic. 🙂
 
Thank you Redkite, you completely understand how I feel, and have it perfectly. I just gotta hope it sinks in, and try to remian as normal as possible, and get on with life, but have people who understand, like everyone on here. No doubt there'll be some bad and some goods days. Going to have a look for the book in my lunch, at least that'll give me something to concentrate on.

I feel a bit like every feeling or thought I have, I'm like is that me or is that because I have diabetes? Still rather tearful today, but trying to not think too much. Lots of people are saying ''how you feeling'' - I don't know how to answer. I don't know how I feel ! Yes lots have already asked ''what can you eat? You'll have to eat healthier now''....I'm rather private anyway, so just been like yeah to get them to go away - probably not the best idea, to get people to understand lol.
 
The one thing you'll notice from all the replies is that it's completely normal to feel like you do. Don't expect to much to soon and remember it can take quite a while to get your blood sugars under control and stabilised. Don't be disheartened if your levels are a bit all over the place for a while.
When I was first diagnosed my doctor signed me off work as I would have found the stress of work on top of the diagnosis too much to cope with at the start. Something to consider talking to your GP/DSN about if you are finding it's all too much at the moment.
Bags!! I've got so many in different shapes and sizes but I'm still on the trail of the 'perfect' diabetes bag ....which has to look nice as well 🙂
 
Low

Ok, so feeling really low today. Have been back at work two days (bare in mind, only diagnosed on Wednesday/thursday last week!) Said to my manager I feel really stressed with all the workload, there was lots left for me which could've been done. She's responded, saying that the director will think I'm not coping, and she will hold onto the work, and give it to me as and when I can do it, but not to tell anyone as worried the director will think I'm not coping. Im not coping, I'm stressed, low and very depressed, I don't want to tell my doc or clinic as don't want to go off work, I lost my previous job through anemia over 5 years ago, and really need my job, and money etc. Im confused, feel like I don't have help and don't know what to do.
 
Alicey said:
Ok, so feeling really low today. Have been back at work two days (bare in mind, only diagnosed on Wednesday/thursday last week!) Said to my manager I feel really stressed with all the workload, there was lots left for me which could've been done. She's responded, saying that the director will think I'm not coping, and she will hold onto the work, and give it to me as and when I can do it, but not to tell anyone as worried the director will think I'm not coping. Im not coping, I'm stressed, low and very depressed, I don't want to tell my doc or clinic as don't want to go off work, I lost my previous job through anemia over 5 years ago, and really need my job, and money etc. Im confused, feel like I don't have help and don't know what to do.
Click to expand...

Well, I would say that being diagnosed, particularly with Type 1 and the suddenness of it all and having do injections is a LOT to contend with. It's probably hard for your work colleagues to understand this, as you probably appear perfectly healthy, although no doubt stressed. In a way, it can be almost like a bereavement for your lost health and carefree life. Your colleagues would probably sympathise more if you had lost a close friend of relative as they can relate to that.

I would say, do what you can, but do talk to your DSN about your concerns - they're not just there to tell you about insulin etc. I found them to be excellent when I was diagnosed, they tend to be very good listeners, and will have experienced your situation many times before - much more than a GP, who may rarely encounter a Type 1 in their career.
 
p.s. I see you are in King's Lynn. There is a social organisation for people 18-30 called Circle-D, with a group based in Norwich. If you are on Facebook you can join their group at:

https://www.facebook.com/pages/Circle-D-Norwich/129157850543292

(if that doesn't work, just search for 'Circle D - Norwich'). They are really lovely people and will help you enormously in getting used to Type 1 🙂
 
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