Diagnosed with type 1 four days ago.

[Jonlennon]

Hi I'm Jon,

I was took into hospital earlier this week to be diagnosed with type 1 diabetes absolutely gutted as I've always been active and have a family that rely on me. Just feeling a bit lost at the minute as it's a tough blow, I'm even scared to eat when I'm hungry. Thought I would join here for a bit of support.
Thanks,
Jon

 

[Diakat]

Hi Jon,

Your family can still rely on you - as luckily you have been diagnosed.

Tagging some helpful guys @kev-w @therower @Japes @kitedoc

 

[therower]

Hi @Jonlennon . Thanks for the tag @Diakat .Welcome to the forum Jon. Probably not the place you expected to find yourself.
Fully understand how you are feeling at the moment but within this forum I’m sure you’ll find answers, reassurance, knowledge and friendship.
You, unfortunately, are starting a new chapter in your life. But here’s the thing.....with the right approach, a bit of dedication and embracing the condition you will become a stronger, tougher individual than you ever thought possible.
I’ve been T1 28 yrs, there are others with years more experience than me. We all have one thing in common.....we survive and manage, all in our own individual way, but we do it.
You will find your way. We are all here to help you. Just ask. Any question any time will get an answer.
Tips from me ( for what it’s worth).

Being diagnosed is a bit like learning to drive a car. You wouldn’t jump in a formula 1 car and try to race in a Grand Prix.
More likely you’d nervously get in a Ford Fiesta ( other cars are available). Everything would be alien to you, but slowly overtime you’d figure out what does what and how you need to use them to make you a driver.
Diabetes is the same. Learn a little bit at a time. Don’t worry about making mistakes, if you don’t screw up occasionally you’re doing something wrong.

A few things I often say ......... 1. Be proud to be a T1 diabetic, never try to hide it away. Embrace it, make it the reason you are the person you are, use it as inspiration. 2. Only my opinion on this but for me diabetes control is 80% mental attitude, 15% medication and 5% luck. Things will be hard at times, things won’t make sense at times but you are and always will be the master of the condition.

Last but not least......EAT!!! Over the coming weeks and months, with a bit of research and knowledge you will find a diet that works for you.

Keep posting with us. It’s nice to have newbies on board.

 

[Japes]

Hi @Jonlennon and welcome to the forum! Thanks, @Diakat I am blushing at being considered helpful.

There's loads of support here, I found, and lots of people willing to answer questions - I'm still pretty new to the insulin side of things and really value the support of those who've been on it longer than me.

It is all overwhelming to start with and takes a bit of time getting your head around it all. Just take it a day at a time, and deal with what you can. I'm still very active as I was determined I was going to be. However, it's taken a lot of trial and error (mostly error) to work out the balance of diet, insulin and exercise.

Don't be afraid to eat, because you need to. But you might need to work out which foods affect your blood sugars more than others. The best advice I got right at the beginning was "We're all different!" and we certainly are!

 

[Scott-C]

Hi I'm Jon,

I was took into hospital earlier this week to be diagnosed with type 1 diabetes absolutely gutted as I've always been active and have a family that rely on me. Just feeling a bit lost at the minute as it's a tough blow, I'm even scared to eat when I'm hungry. Thought I would join here for a bit of support.
Thanks,
Jon

Hi, Jon, it might not seem like it at the moment, but, at the end of the day, you will be fine.

All of us who have been dx'd T1 felt gutted when we got the news. For me, it felt like the end of the world (I was 21 then, am 51 now). I felt like that's my life over, I'll have to spend the rest of my life eating "special" diabetic food, no-one will give me a job, I won't be able to do sports anymore.

Nah, nah, nah, that's not the way it worked it out, not at all.

You'll go through a whole slew of emotions over the next few weeks/months, anger, resentment, self-pity, refusal, so be prepared for that.

You'll have docs and relatives, those closest to you, saying it'll all be fine, and you'll probably resent them saying that.

You might say to them, easy for you to say but you've not got this, and it'll probably end up in an argument. Try to steer clear of that sort of situation.

They and you are both right. It will be fine eventually, but they don't understand what we as T1s need to do to make it so.

Being recently dx'd, you're probably feeling really under the weather at the moment - early stage DKA ain't nice.

That'll pass. You'll regain lost weight, get your energy/mojo back. I was out ski-ing, cycling, sailing a few weeks after dx, but just had to ca' canny for a while. After that, I was hammering sports just as much as I did before.

Got a job a few months after dx. Built a career out of it. T1 hasn't affected it at all.

Longer term, sure, it means we have to think a lot more than the average Joe or Josephine about what we're eating and how we play with our insulin.

But, in practice, it boils down to simple things like making sure I carry some sweets with me all the time, and if I'm going out for a curry, I'll maybe just eat the crispy bits of the naan instead of the whole thing.

One of the scariest things for me when I was dx'd was the idea that my life was going to be restricted. A few months of living it showed there's remarkably few limitations with T1.

Although, if you were planning on becoming an astronaut, I'd probably rule that out.

You're still so early in the game that you will still be swamped with the shock and horror of it. Give it some time, the anger disappears, you start picking up some tips and tricks, it becomes easier.

You'll reach a point where you say, ok, I've more or less got this. You'll never cane it entirely - T1 always throws a few fliers - but you'll get near enough to be ok with it.

Good luck!

 

[Antje77]

Hi @Jonlennon , and welcome to the forum! Bit much to take in at first, so go easy on yourself while learning. I'm tagging @daisy1 for you, who'll post a very useful info-sheet on this thread. It's about type1 and type2 both, so read carefully. I hope they already told you that you need insulin to manage carbs. So when hungry and in doubt about your insulin, or if you're not making dosing decisions yourself yet, you can always eat some (almost)zero carb food like cheese or meat without screwing up between what youre supposed to eat according to the person who treats you!
Let us know how you get on please!

 

[Knikki]

Hello @Jonlennon welcome to the forum, not really going to add anything more as the others have covered nearly all of it.

I'll go stick the kettle on, coffee or tea?

 

[Tracie1212]

Hi@jonlennon

I was a single mum working full time when I was diagnosed 17 years ago. I went back to work, did my own research and found an insulin regime that was best for me. This forum is brilliant I get lots of help and support here as will you. Just remember you are not alone if you need help speak to your doctor, DSNs and come into the forum for a chat. If you don't understand something keep asking.

 

[Jonlennon]

Thanks guys really mean that.

 

[kitedoc]

Hi @Jonlennon, Welcome to a great forum site and a bunch of really impressive people. And thank you for the tag @Diakat !
As a T1D, not as professional advice or opinion:
I was diagnosed with Type 1 Diabetes (T1D) at age 13, 52 years ago - yes there is life after diagnosis!!
Compared to now there were no fancy insulins, pens, pumps, glucose meters back in 1966!
Yes, it changes your life and outlook but I exercise and have done some pretty crazy things as a diabetic including week long canoe trips through wilderness country, days long hiking trips, travelling solo around NZ (I am an Aussie), cycling, sailing.
I have 5 children, am recently retired from a busy and productive career and still indulge the child within!!
My diabetes specialist says that these days he asks all newly diagnosed T1Ds whether they have a decent normal age retirement plan or advises them to obtain one when they start work. Now ... first days and weeks ;
Step at a time: the amount of information and emotion can be overwhelming.
Place the most urgent issue to you first. Work through each thing as it comes up or is needed to save being caught in an avalanche.
Food and insulin: I and many T1Ds I have spoken with do link eating food with high blood sugar levels (BSLs). It seems to make sense to withhold food but .. the key word is balance; food in increases BSLS, insulin in lowers BSLs. Ideally the BSLS stay in range. Insulin in and no food in gives low BSLs - not fun! If you type 'hypoglycaemia' (= low glucose in the blood) into the search box right upper section on Home page of this site, you can read about low blood sugars, how to recognise them - and what to do about them - you need your partner, family relatives and close friends to become au fait with this information. And if you eat piecemeal it is more difficult to match insulin and food. That leads onto:
Routine: for the beginning keeping things regular such as time of injections and meals (and amount of food) to a regular schedule makes the balancing act easier. Over time you can build in more flexibility.
Support: your health team is your go-to advisors and support and of course family and close friends. And good on you for reaching out to this forum!
Breathe: stress and emotion tend to push BSLs up. If I am stressed I hold my breath at times. In doing so my thoughts freeze up. If I train myself to breathe evenly, not too deep, rapid or shallow, my thoughts 'free up' and I can better find ways around a problem or concern. You can see this breathing and other behaviours in a lead up to a soccer player shooting a goal.
Mistakes, mistooks, boo-boos: All of us make mistakes, we estimate something wrong, give too much or too little insulin, a hyoo, eat something which puts the BSL up too much etc etc - you either beat yourself up about it or learn from the mistake and try to prevent or minimise it in future. And, expect perhaps for those on very fancy insulin pumps and feedback systems, no T1D's BSL will be perfect day in, day out. Just look at Type 1 Diabetes'R Us thread to se this. And there are enough us on forum who have made enough mistakes to 'educate' all!!!
I shall stop there. Read the posts here and on other threads as often as you need to ; there is lots to take in but step by step.
Keep asking questions, we have all at some time asked a basic question whose answer seems obvious later, that does not matter, it is learning what you need to know NOW and near future which matters!!
Best Wishes to you and family and again, welcome, fellow warrior.

 

[Jollymon]

Welcome Jon! Learn to count carbs!

 

[daisy1]

@Jonlennon

Hello Jon and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it helpful. Ask questions when you need to and someone will be able to help.

BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
  
  
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
  

 

[SueJB]

Hi and welcome on board @Jonlennon
Don't hit me for saying this but, you'll be fine. It IS a lot to get your head round and there IS a lot to learn and manage but you can do it. I did. I agree with what everyone's said especially about eating and carbs.

 

[Jonlennon]

Hi @Jonlennon, Welcome to a great forum site and a bunch of really impressive people. And thank you for the tag @Diakat !
As a T1D, not as professional advice or opinion:
I was diagnosed with Type 1 Diabetes (T1D) at age 13, 52 years ago - yes there is life after diagnosis!!
Compared to now there were no fancy insulins, pens, pumps, glucose meters back in 1966!
Yes, it changes your life and outlook but I exercise and have done some pretty crazy things as a diabetic including week long canoe trips through wilderness country, days long hiking trips, travelling solo around NZ (I am an Aussie), cycling, sailing.
I have 5 children, am recently retired from a busy and productive career and still indulge the child within!!
My diabetes specialist says that these days he asks all newly diagnosed T1Ds whether they have a decent normal age retirement plan or advises them to obtain one when they start work. Now ... first days and weeks ;
Step at a time: the amount of information and emotion can be overwhelming.
Place the most urgent issue to you first. Work through each thing as it comes up or is needed to save being caught in an avalanche.
Food and insulin: I and many T1Ds I have spoken with do link eating food with high blood sugar levels (BSLs). It seems to make sense to withhold food but .. the key word is balance; food in increases BSLS, insulin in lowers BSLs. Ideally the BSLS stay in range. Insulin in and no food in gives low BSLs - not fun! If you type 'hypoglycaemia' (= low glucose in the blood) into the search box right upper section on Home page of this site, you can read about low blood sugars, how to recognise them - and what to do about them - you need your partner, family relatives and close friends to become au fait with this information. And if you eat piecemeal it is more difficult to match insulin and food. That leads onto:
Routine: for the beginning keeping things regular such as time of injections and meals (and amount of food) to a regular schedule makes the balancing act easier. Over time you can build in more flexibility.
Support: your health team is your go-to advisors and support and of course family and close friends. And good on you for reaching out to this forum!
Breathe: stress and emotion tend to push BSLs up. If I am stressed I hold my breath at times. In doing so my thoughts freeze up. If I train myself to breathe evenly, not too deep, rapid or shallow, my thoughts 'free up' and I can better find ways around a problem or concern. You can see this breathing and other behaviours in a lead up to a soccer player shooting a goal.
Mistakes, mistooks, boo-boos: All of us make mistakes, we estimate something wrong, give too much or too little insulin, a hyoo, eat something which puts the BSL up too much etc etc - you either beat yourself up about it or learn from the mistake and try to prevent or minimise it in future. And, expect perhaps for those on very fancy insulin pumps and feedback systems, no T1D's BSL will be perfect day in, day out. Just look at Type 1 Diabetes'R Us thread to se this. And there are enough us on forum who have made enough mistakes to 'educate' all!!!
I shall stop there. Read the posts here and on other threads as often as you need to ; there is lots to take in but step by step.
Keep asking questions, we have all at some time asked a basic question whose answer seems obvious later, that does not matter, it is learning what you need to know NOW and near future which matters!!
Best Wishes to you and family and again, welcome, fellow warrior.

Thanks, really appreciate you taking the time.

 

[Juicyj]

Hi @Jonlennon and welcome

I was diagnosed 6 years ago and yes the shock and trauma of being diagnosed stuck with me for a while, I needed a bit of support to sort myself out, since then I raise money for JDRF who support t1 research and I now run 3-4 times a week, something I would never of done previously, I have found exercise a brilliant way to keep fit mentally and physically and keep BG levels controlled, also the release of endorphins is a bonus too, I also cycle, ski, work, am a parent and all of it is manageable, talking helps so keep a good dialogue with your DSN, mine have always been amazing

 

[Type1Newb]

I was diagnosed 2 weeks ago and am still trying to get my head straight after all the information I've had. I do feel better though and that's the main thing. Try not to overload yourself, and if you're feeling stressed do something to take your mind off it for a while.
And eat! I'm still the same now, would rather not eat as I'm not sure what will affect levels bit if I don't try I won't know.

Hope all goes well for you.

 

[MPezz]

Hi I'm Jon,

I was took into hospital earlier this week to be diagnosed with type 1 diabetes absolutely gutted as I've always been active and have a family that rely on me. Just feeling a bit lost at the minute as it's a tough blow, I'm even scared to eat when I'm hungry. Thought I would join here for a bit of support.
Thanks,
Jon

Hi Jon, take it one day at a time. I was diagnosed 6 months ago, less than a week before my baby son was born! Its a shock but it gets easier. Don't shut your family out, or hide anything. They will get you through this.

If you're looking to get active, have a look on facebook for groups that are about exercising with type 1 diabetes. Loads of friendly people out there who will give you advice. Also look for type 1 athletes for inspiration; I listened to a few podcasts from gameplant1d and hearing what they could do gave me the confidence to get back out there and do some exercise.

Marcus

 

[bmtest]

No need to be gutted the family can still rely on you and you can still be active, all you have to do is inject calculate what you are about to eat or do thats it, its not a game changer by any means unless your not up for it.