Diagnosed Yesterday With Type 1 Diabetes!

[AJB9341]

Hello everyone! I am 22 and have been diagnosed with type 1 diabetes yesterday and honestly when I got told the news, without sounding melodramatic I honestly thought my world was crumbling in front of my eyes. Please someone reassure me this is normal? I’ve never felt so up in space in my life. I was at the doctors at 8:20am and had been sent up to the hospital by 8:45am and by 10am it felt like 2:30pm. I’m guessing this due to the shock and upset?

I’ve stumbled across all you guys after reading up on lots of information and honestly, just from reading a few posts...I feel so much better and relaxed. I keep breaking down into floods of tears still getting used to the idea of having to learn how to live with diabetes and how much my lifestyle/diet has changed so rapidly in the space of 24 hours!

I’ve been told to eat at certain times, check my blood and take my insulin so today was the first day I had to eat alone because my parents would’ve been eating later on and again, I broke down crying like..is this how my life is now? I’m going have to sit down and eat by myself every night? I’m sure I’ll get things under control and learn how to time things correctly.

I’m soooo new to this I’m unsure of what I can eat, what I can’t eat? When can I eat, when can I not eat? I’m going to the hospital again on Monday to see a specialist to go through everything so I’ll have a wiser head on my shoulders on Monday afternoon. I had to text my mum earlier asking if it was okay to eat a banana as a snack! Like, it’s made me feel like 8 years old again. I feel so vulnerable. Luckily, my mum is a a diabetic nurse so I’m in the best care I could ask for!

Sorry the long post, I just wanted to join you all on this journey of diabetes and have constant reassurance that I will be okay and I will eventually get used to living this life and it be second nature!

Lots of love,
Alexandra, your newly diagnosed diabetic x

 

[Dark Horse]

Diagnosis is a big shock. It's normal to be confused, angry, upset, frightened etc. etc. It will get better as you learn to manage the disease. Eating at fixed times isn't something that you'll have to do forever - it's just while you're learning. You'll gradually learn how to adjust your insulin depending on when, how much and what you eat and you'll be able to eat with the rest of the family, as before. Keep reading - information is your ally - and good luck on Monday.

 

[AJB9341]

Thankyou!

 

[Diakat]

The feelings described in your post are perfectly normal.
Once your insulin needs settle you'll be able to eat pretty much when you want - hypos excepted.
Give yourself some time, it will start to feel better.

 

[Scott-C]

Hi, @AJB9341 , I was dx'd at 21, more or less the same age as you, and yes, it is perfectly normal to go through all that you're experiencing just now.

That'll carry on for a while - fear, uncertainty, anger, how unfair it all seems, all sort of emotions.

Parents and docs telling you it'll all be fine sometimes actually makes it feel worse, but let them do it - it makes them feel better - and just nod politely.

I went through all that in the months after my dx, we all have.

But then it settles down. It's not so new anymore, we get back on our horse, we start to understand the complex relationship between insulin, food, exercise, and a few other things and we get on with it.

I thought that my life was going to be really restricted when I was dx'd, special diabetic food and all that.

Didn't happen. I had to spend a few months learning the basic rules of how insulin and food work together, and it's right that your docs will have you on a relatively tight regime for a while till you get used to a few of the basics, but, after that, once you learn some rules, it's surprisingly unrestricted.

A few adjustments need to be made, and a bit of planning ahead, but it is do-able.

For example, if I go to the movies, I'll have the salted popcorn, not the sweet. One of those overpriced tubs of icecream in the foyer is still an option because I know how many carbs are in it, I know that the fat in it will slow down the absorption of the sugar into my bloodstream, so I can figure out how much insulin is needed for that and how to time it. The full fat sugary coke to go with it is out, but that's no biggy because diet coke no longer tastes like TCP (believe me, the early diet drinks were yeuch).

You will still be able to walk into any restaurant on the planet and choose anything from the menu, but you might find out, with experience, that some options are best left out - white rice and potatoes can be really unpredictable, for example.

You will still be able to go out for a few drinks - I'm propping up a bar in a pub at the moment - but you might find that sugared Red Bull and fruit based cocktails ain't a good choice, and decide on other options.

I've been away backpacking for months on end in Asia. I've been ski-ing in whiteouts in the Scottish mountains. I've had to think in advance about how to do those things safely but that really just involves making sure I've got my insulin and some sweets handy. My life didn't crumble, it just had another thing to think about added to it.

There's some amazing technology now which makes the whole gig a lot easier - ask your dsn about freestyle libre. It's starting to become available on the NHS, but still a postcode lottery. It lets you see your blood glucose levels all the time so that you can tweak them with small adjustments, instead of strips which just give you a small snapshot.

Good luck!

 

[Flora123]

Can’t advise as I’m T2 (they think) but it will get better and yes, a huge shock. My advice is read, read, read. There will be some lovely people along shortly who can advise on T1. Big hugs xx

 

[Scott-C]

Alexandra, I'll tag a few people who've got an upbeat attitude to this darned T1 thang and might be able to pick you up a bit and give a few steers for the future.

They're, hmm, what's the best way of saying this without getting punched in the face, older than you but as young in spirit...

They all do stuff which a lot of newly dx'd people think in the early days surely T1s can't possibly do, but done it they have.

@Fairygodmother - lived in Africa for a while and has some great stories about riding camels in the desert.

@helensaramay - climbs rocks, sails, skis, extensively travelled, I'm sure she's been in the SAS at some point but can't tell us for security reasons...

@Mel dCP - rides motorbikes, can handle herself in a mosh pit, but hasn't yet had a shot of her brother's jet..

 

[Madmaureen]

Hello everyone! I am 22 and have been diagnosed with type 1 diabetes yesterday and honestly when I got told the news, without sounding melodramatic I honestly thought my world was crumbling in front of my eyes. Please someone reassure me this is normal? I’ve never felt so up in space in my life. I was at the doctors at 8:20am and had been sent up to the hospital by 8:45am and by 10am it felt like 2:30pm. I’m guessing this due to the shock and upset?

I’ve stumbled across all you guys after reading up on lots of information and honestly, just from reading a few posts...I feel so much better and relaxed. I keep breaking down into floods of tears still getting used to the idea of having to learn how to live with diabetes and how much my lifestyle/diet has changed so rapidly in the space of 24 hours!

I’ve been told to eat at certain times, check my blood and take my insulin so today was the first day I had to eat alone because my parents would’ve been eating later on and again, I broke down crying like..is this how my life is now? I’m going have to sit down and eat by myself every night? I’m sure I’ll get things under control and learn how to time things correctly.

I’m soooo new to this I’m unsure of what I can eat, what I can’t eat? When can I eat, when can I not eat? I’m going to the hospital again on Monday to see a specialist to go through everything so I’ll have a wiser head on my shoulders on Monday afternoon. I had to text my mum earlier asking if it was okay to eat a banana as a snack! Like, it’s made me feel like 8 years old again. I feel so vulnerable. Luckily, my mum is a a diabetic nurse so I’m in the best care I could ask for!

Sorry the long post, I just wanted to join you all on this journey of diabetes and have constant reassurance that I will be okay and I will eventually get used to living this life and it be second nature!

Lots of love,
Alexandra, your newly diagnosed diabetic x

Hello Alexandra
I really feel for you now as I was diagnosed at 21 and felt devastated.
My.life had just.began and then in a way my past life had to move onto an unknown one!!
But I now congratulate myself as today I like myself and have forgotten what I was like when I was first diagnosed.
Believe me it does improve and you learn that you have to rule diabetes and don't let it beat you.
I have always given myself that message and I am type 1 for 48 years!
Still going strong with two beautiful sons and a wonderful family.
You can do it go live life to the full like I have. Take care and best wishes to you remember the best is yet to come regardless of diabetes.

 

[Brillpaul]

Yes familiar emotions indeed. Diagnosed 2 years ago aged 67.....not overweight and no family history. Just another challenge so follow the wise advice of all the above. All the best.

 

[LooperCat]

Oh mate. Welcome to the shonky pancreas club. Not a great place to be but survivable, and not a death sentence. I’m incredibly drunk, having just got home from a wedding, but will (hopefully) be able to contribute something halfway sensible tomorrow. At some point. Thanks for the tag @Scott-C if not for the appalling timing.

 

[alphabeta]

Can i get to tag @daisy1 this time?

 

[Daibell]

Hi. Yes, it's a shock to most of us at first particularly if you are T1 and started on insulin. The good news with insulin as opposed to T2s on tablets is that it is very controllable as long as you take the insulin. Now you are new to this and haven't seen the consultant yet. You should have been put (or will be) on two insulins one to take once or twice a day the (Basal insulin) and one to take at meal-times (Bolus). Now many people are started on a fixed amount of Bolus for meals. After a while you will start carb-counting where you adjust the amount of insulin in your meal to match the carbs in it. This allows much greater flexibility in what you eat at each meal. My nurse started me on this immediately some are asked to go on a course; ask your Mum or the consultant for guidance. You don't have to have meals at fixed times; I'm not sure why you were told that but do ask. It does make sense initially to have some meal planning in place to get used to remembering to inject etc. Basically you can eat what you like especially once you start carb-counting but try to keep the carb content down to avoid weight gain and large blood sugar swings. Bananas are not ideal as they are high carb but not banned. Be aware that DNs vary in how up to date their knowledge is and hopefully any advice from your Mum is in line with the posts on this forum!

 

[daisy1]

@AJB9341

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

BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

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.
  

 

[A kyriacou]

Hi you are just trying to understand and adjust to changes, that is a great and podsitive step in the right direction. I wish i was the same, stay awesome x

 

[Deleted Account]

@helensaramay - climbs rocks, sails, skis, extensively travelled, I'm sure she's been in the SAS at some point but can't tell us for security reasons...

Nearly all correct ... and I am not telling you the bits which are true or false. Although you did miss my running away to the circus trip. Also known as an afternoon on the flying trapeze.

Seriously, the best thing I was told upon my diagnosis was "diabetes should not stop you doing what you want".
I may not be 21, but that hasn't stopped me testing this mantra on many occasions: trekking in Nepal, via ferrata in Italy, tracking gorillas in Uganda, walking up a mountain in Venezuela in the pouring rain, sailing across the Channel, sky diving, drinking, drinking a little bit more, drinking more than anyone should, starting a new career (had to leave the SAS at some point as it was impacting my social life), dating, canoeing down the Wye, trying out new foods, flying to Seattle to present to an unhappy customer at less than 25 hours notice, ... to me, it's all part of a normal life and diabetes has not stopped me doing any of it.

There are a few additional things I have to remember but when you get used to it, those things are no different to putting on your sunscreen, taking hayfever medication and seasickness tablets (everything my partner had to do when we canoed down the Wye).

But don't just take my word for it - Halle Berry copes with busy filming schedule and Type 1, Este Haim gigs around the world with Type 1, Henry Slade plays professional rugby with Type 1 and Theresa May (with her Libre) has type 1 and is always on the news (not sure what she does though...).

Being diagnosed with diabetes is a huge shock.
But it is not the end of your life as you know it.

 

[Knikki]

@AJB9341 Just want to say Hi and welcome to the "pancreatic challenged club", can't anything more than what the others above have said but jump in ask questions it is the quickest and easiest way to learn

Take care.

 

[KK123]

Hi AJB, all I would say is that you will be able to be more flexible about what and when you eat after the first few weeks or months as I'm sure your Mum will tell you. At first they like it to be 3 meals a day at set times so that they can see how much insulin you need for your 'normal' diet etc. Once that settles down they tend to move on to how much insulin you need for how many carbs, that is when I found I could be flexible as it meant I could eat at a time that I wanted to eat. It all sounds complicated at first (and it is) but you WILL get used to how your body works with it all and wow, you have a MUM who is an expert! Mind you, give it 6 months and you will be telling her what to do.

 

[_becs]

Hi and Welcome!

It may not be a club you wanted to join to but it's full of great people!
I won't add anything already said as you're probably on overload! I was diagnosed at 16yo just after exams and school finishing and it is hard at 22 because you know what life was like before.
One thing I will say is there are lots of 'diabuddies' out there who can help when you feel like you're on your own ie here, Instagram and blogs - there is definitely a lot of support if you just ask and nothing is stupid to ask!
At first I did just stick to a small diet until I got used to the carb counting, finger pricking and injections, but I'm sure your mum will be a huge help for you. Eating on your own is not forever, a routine will just help you get to grips with everything- after all you get to celebrate two birthdays a year now, your own and your 'diaversary'!
If you get chance to go on a DAFNE (Dose Adjusting For Normal Eating) course GO I found it so helpful!
All the best x

 

[tomrose]

Hello everyone! I am 22 and have been diagnosed with type 1 diabetes yesterday and honestly when I got told the news, without sounding melodramatic I honestly thought my world was crumbling in front of my eyes. Please someone reassure me this is normal? I’ve never felt so up in space in my life. I was at the doctors at 8:20am and had been sent up to the hospital by 8:45am and by 10am it felt like 2:30pm. I’m guessing this due to the shock and upset?

I’ve stumbled across all you guys after reading up on lots of information and honestly, just from reading a few posts...I feel so much better and relaxed. I keep breaking down into floods of tears still getting used to the idea of having to learn how to live with diabetes and how much my lifestyle/diet has changed so rapidly in the space of 24 hours!

I’ve been told to eat at certain times, check my blood and take my insulin so today was the first day I had to eat alone because my parents would’ve been eating later on and again, I broke down crying like..is this how my life is now? I’m going have to sit down and eat by myself every night? I’m sure I’ll get things under control and learn how to time things correctly.

I’m soooo new to this I’m unsure of what I can eat, what I can’t eat? When can I eat, when can I not eat? I’m going to the hospital again on Monday to see a specialist to go through everything so I’ll have a wiser head on my shoulders on Monday afternoon. I had to text my mum earlier asking if it was okay to eat a banana as a snack! Like, it’s made me feel like 8 years old again. I feel so vulnerable. Luckily, my mum is a a diabetic nurse so I’m in the best care I could ask for!

Sorry the long post, I just wanted to join you all on this journey of diabetes and have constant reassurance that I will be okay and I will eventually get used to living this life and it be second nature!

Lots of love,
Alexandra, your newly diagnosed diabetic x

Hi Alexandra,

I was diagnosed back in July (exactly 10 weeks ago) and I can tell you it gets easier. I am 27 and consider(ed) myself very fit and healthy. Also... my mum is a diabetic nurse! You are so lucky to have that as a resource, she will be able to help you when it comes to adjusting your insulin. Don't feel bad about asking for help!

I didn't change my diet too much to start with, perhaps just stick away from the obvious things (sugary drinks, sweets, sugar in your coffee etc.).

It seems scary, horrible and just too much at the start, but unfortunately it is what it is and it will get better as you accept it and learn what you need to do. I'm sure everyone feels for you.

Tom