Type 1 Diabetic depression

[T1D]

I was diagnosed a few months ago and I still cant get over the grief.

I’m avoiding my friends and parents as I don’t feel better after talking to them about how I feel.

i feel awful, can’t get the doses right, going into hypers for no apparent reason and it stays up.
I feel guilty about mentioning it to my family (husband and kids) but I do it anyway. I work from home part time but I just feel I’m living with no meaning in life and everything is just so dull.

I go to the gym and love reading. Sometimes I’m happy like that but other times I get so lonely.

going on holiday in a few weeks time but have no clue how to carb count in restaurants and I’m really not looking forward to it.

How have people with T1D navigated themselves with their new diagnosis?

Didn’t want to read and run. I’m not type 1 myself but my husband is. It is a very tricky illness and the mental load is full on. But it does get easier.

Firstly, it is impossible to have “perfect” sugar so try not to feel like you did something wrong when you have random hypers or hypos. Sometimes they just happen.

Have the hospital offered you a course on counting carbs? My husband found that incredibly helpful. He didn’t get to do it until he was about 18 months post diagnosis but it did help.

Also having a pump really helps if you are on the waiting list for one of them. i appreciate it isn’t always easy to get one. It doesn’t reduce all the mental load of carb counting but it does help.

Are you going away with anyone. I know my husband finds it very helpful to chat to me about it and we will often chat about how much carbs and what dose he should give himself. So the decision making isn’t all on you all the time and you can bounce ideas of someone else? Can someone close to you learn about it as well and help with some of the decision making?

It will get easier, and if you can find a couple of people you trust to chat to about it then it can help reduce the alone feeling.

Sorry to hear you’re feeling so down. It’s not surprising though as it’s such a major thing to navigate. Have you got a Diabetes Nurse Specialist you can talk to? Some diabetes centres have psychologists or counsellors they can refer you to and there may be a self referral pathway in your area if you could check online.
If you are finding it difficult to control your blood glucose levels again your diabetes nurse should be able to give some advice.

Often after the initial diagnosis - “honeymoon” phase when your pancreas is producing a little bit of insulin things run quite smoothly but after a while this stops and then your diabetes control can become quite tricky for a while. Definitely ask for support and as the PP said, if you haven’t already done so, then look into attending a carb counting session and/or a course such as the Dafne (dose adjustment for normal eating) course. There are also lots of online forums and plenty of information on the DiabetesUK website. Don’t get despondent as no one is perfect and help is available. Wishing you all the best

You can do the online Bertie course to learn how to adjust your doses better, but you’re not aiming to be in range all the time, 60/70% or more is seen as amazing. Have you got the carbs and cals app or book for helping to count carbs when out?

Was also diagnosed as an adult, the shock and depression is real. There are some great books, Think like a Pancreas and Dr. Bernsteins classic Diabetes Solution ( make sure you get an up to date edition as the tech moves fast)

do you have a CGM yet? And I’ve found the safest thing when you are not sure about carb counting is to eat less carb, have bigger portions of protein and healthy fats, I usually halve the carb portion I’m served in a restaurant, and inject at least half the insulin I’ve calculated before I start eating. Usually hyper numbers are more of a timing thing than an incorrect dose, even so- called fast insulins are 20 mins or so to start acting

I think you’re meant to check blood sugar, inject then wait until you see a measurable drop in numbers (only small) before you take your first bite. Bit of trial & error especially in restaurants where you don’t know when food will arrive, so always have a snack handy

and do get tested for coeliac as they often go hand in hand

Bit different because I've been diagnosed with type 2 in the past month. I know what you mean about it being a shock. I also have Crohn's and Bile acid malabsorption syndrome which complicates matters. My blood sugars are all over the place and I often have no idea what I should eat. The diet I need for crohns and Bile acid malabsorption is the exact opposite to what I need for diabetes.

I hope that you have better support than I currently have from diabetic nurse. She does not understand the impact of changing my diet at all. It's really not easy to manage all of the conditions together.

Have you been supported well by nurse/GP?

Thank you for this post, I needed to hear it. I was diagnosed over 25 years ago and it's all second nature now, but I was surprised how shit I felt recently when my consultant said my time in range was "OK." It felt like a personal attack when I think how much effort and hour-by-hour decision making it takes me to get 70% in range.

I was diagnosed as a child and don't remember much about it, so no advice for the OP. All I can say is it gets MUCH easier.

Oh poor thing - there is such a lot to learn and to take in, it’s such a mental load. It does get easier I think ( DH was diagnosed in his 20s)

downs followed by highs are really normal - liver releases sugar to counteract the hypo. So as you get used to this it will happen less often. But there will still be days

please don’t feel guilty about talking about it - I like to know as much as possible about DHs condition - then I can help, i can be aware , I can care. Keeping him fit and well is important to me after all. And he is in far better shape than most men his age. Don’t let it hold you back

diabetes UK. Charity might have some useful info

eating out is really really hard. Stick with simple stuff perhaps - you know what a handful of chips should look like. Restaurant food is often richer than home cooked which can mean sugar gets released more slowly.

try and get on the daphne (?) course

I have type 1, but am also a Crohn's sufferer. The diet thing is a total nightmare, white carbs are best for keeping my Crohn's quiet but terrible for my diabetes.

its a pain in the ass I understand I am also T1D - get yourself on a DAFNE course where you will be given more in depth info on how to control it and prevent the high and low bg.

Its better than struggling on your own, the condition is more than complex with a tremendous amount of causes to blood glucose fluctuations.

They discuss insulin to carbohydrate ratios, hypo awareness, correction doses for highs, sick day rules and more you also get a book with all this info in it which is useful to refer back to.

dafne courses are free.

Speak to either, a DSN ( diabetes specialist nurse), GP or hospital consultant about a referral if you want to.

D: Dose
A: Adjustment
F: For
N: Normal eating
E: Eating

I agree with this, but you do need to be very careful about waiting for it to drop, it can catch you out and end up hypo. OP, get yourself the Carbs and Cals app, that will help a lot while you're getting used to it.

Thanks for the comments everyone. I’m on the waiting list for Dafne but there’s apparently quite a long waiting list. I’ve had lessons on carb counting and to be honest my time in range isn’t bad at all, although I do feel like a complete failure if, even with the carb counting, the glucose level doesn’t quite come back down.

I suppose my problem is more about the emotional side of things. DH I must admit has been really supportive throughout and he learns with me and even has an app downloaded on his phone to keep an eye on my levels.

I just struggle to talk to people - I feel i don’t have the patience to listen to their stories when I’m feeling anxious about my levels. (To those that asked - I do have a cgm but not a pump, not even on the waitlist for that yet)

My best friend who lives hundreds of miles away was shocked to hear of my diagnosis and showed support, but once, just once I sent her a couple of screenshots of my cgm app to share with her what I ate and how my sugar levels behaved - so she could see the problems I’m facing day to day - she didn’t respond for over a week and now we’ve become quite distant. In hindsight sharing cgm screenshots might have been too much info.

Talking to my mum - she listens, but she also loves to talk so she’s easily distracted and forgets about my T1D. That’s fine, it’s not all about me and I understand, but to feel that I have to go with the flow when all I’m thinking is my condition, is draining.

And yes, I do see diabetic nurses, and they are really great.

You might find that there’s a local DUK (diabetes uk)peer support group near you? We have a what’s app group and everyone is really supportive. We meet up
monthly, have events with guest speakers etc and go to the pub etc- see if there is one near you (maybe search Facebook for where you live/Type 1)
Dont be too hard on yourself.
I was diagnosed at 45 and didn’t cope well at all!
I promise you that within a year nobody will
know more about your diabetes than you. A consultant said that to me and it was true! It will still challenge you, and the heatwave certainly isnt helping me!
I was diagnosed at 45 and I really struggled to come to terms with it.
I did a CBT via the NHS course called ‘living with diabetes’ that really helped me.
somebody has Probabaly already suggested up thread but get the carbs and Cala app. I believe you can now take a photo of your food for a carb estimate but don’t quote me on that. U
take care. I know what a shock it is but you’ll not always feel like this.

Sounds like you’re expecting too much of people? It’s your diabetes to manage, not your mums or your friends. I don’t think I’ve ever sent a non diabetic family member or friend a screenshot of my cgm readings!

It’s a lot of take in , and it’s hidden in a way / if you had lost a leg I think people would be more receptive

we are here though

I don’t talk about it or tell people I have it. I just get on with things. I was diagnosed at 41 while pregnant. I guess I was lucky in that as soon as they discovered it I was put on a different track and went to see the midwife then diabetic team afterwards every week, and got a lot of attention with them trying to manage my numbers because of the baby. However it’s amazing how experts get things wrong.
Frankly you just get used to adjusting your dose and recognising when you are going low or high. I make a rough calculation of carbs then dose for that and adjust later. Frankly so many things affect your numbers it’s not as simple as counting carbs accurately.
I have found the diabetic nurse less than useless.
Don’t forget to inform DVLA. You will be issued with a three year renewable licence. And if course the insurance.

You will probably learn at least as much, if not more, from this book

Audible sample
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Think Like a Pancreas (4th Edition): A Practical Guide to Managing Diabetes with Insulin
by Gary Scheiner (Author

than from the DAFNE course. Because it’s not just the number of carbs, but the type eg a small Mars Bar and a ripe banana have similar amounts of carb but react differently in my body because of the fat in the mars bar. And modern technology is really helpful, using an app to track your food such as My Fitness Pal, shows how much carb is in a meal or a food.

Finally, watch out for exercise, which often has a delayed effect. If I have a long day hiking, I’m often fine that day but crash out the next as my body will have used up the stored sugar from my liver to keep going. Consistency from day to day is better/more manageable than hard days and easy days with strenuous exercise

I was diagnosed as an adult just under 40 years ago now. I found out when they did the medical for a scholarship abroad - to a country where I didn't speak the language very well and pretty much no one spoke English. Then I ended up in umpteen different countries over the years, with very variable and not very good diabetes care for a lot of it.
It meant having to figure out everything pretty much on my own and was a VERY steep learning curve with quite a few mis-steps along the way.

First off, it does get easier as time goes by. You get more experience in carb counting/estimating and get to know better how your body reacts to everything.

Random thoughts, first off particularly for going on holiday.

1. If you don't already do this for travel, make a packing list!
   I have one I wrote about 20 years ago, printed out and still in use. I tick things off in pencil to make sure nothing is missed, then erase it later to reuse the list. Its in three parts: diabetes stuff (the only one I regard as crucial), always need stuff (like underwear etc), and one that is specifically for winter vs summer travel.
   For the diabetes stuff I calculated how much of each thing is needed for a week (including sweets to bring up lows), and that is written on the list so I don't have to recalculate it each time. When you pack, take TWICE what you calculated and then a tiny bit more.
   This might seem over the top, and you can probably reduce the extra if your holiday is not too far from home, but you never know what can happen. I was stuck in India for a week longer than planned when 9/11 happened (was living in the US at the time) and all flights were cancelled. And I was in the Netherlands when there was a volcanic eruption in Iceland and again all flights were cancelled...

2. If flying, all diabetes supplies with you in your carry-on and don't let it be separated from you for any reason.

3. If you are eating in a restaurant, don't take your insulin until the food is actually in front of you (unless there is already bread on the table!). Yes, that goes against the rules of good blood sugar control, but you have NO IDEA how long the food will take and how many carbs will actually be on the plate and the risk of going dangerously low is just to great if you inject in advance.

4. In a restaurant, try to order dishes where the carbs are more easily seen and thus estimated, and are not too large a component of the dish. The lower carb it is, the smaller the amount of insulin you need to take, and therefore the smaller
   the likelihood of going dangerously low or unpleasantly high. For example, something with potatoes on the side = relatively easy to see and estimate the carbs. Plate of pasta or risotto = a huge amount of carbs and who knows how many.

5. Maybe this is just me, but try hard not to compare. Not with other people, and not with how things used to be for you.

This is actually advice for all the time, but particularly on holiday, everyone around you will seem to be without a care in the world. Eating, drinking, exercising or whatever while you are having to calculate things and deal with shit that they are not.
Remember, many other people have struggles too, but you just don't see them, just as they don't see yours.

If their life has particular struggles, they are likely to not be out and about, or be unable to go on holiday at all, so you are not even seeing those whose life is actually more difficult.
For example, over the years I've known a couple whose child stopped mental development at about 6 months of age. He's around 30 now, cannot of course speak, is still in nappies, and has the strength of an adult. I don't think they have ever been on holiday.
I also knew someone who died of a brain tumour in his twenties, have a cousin suffering from Huntingdon's chorea, and the list goes on. If you MUST compare, remember also to compare with those who have it worse, not just those who have it better.

Finally, friends and family will NEVER fully understand. The only people who really will are others with Type 1. If you can find any kind of real life support group it really does help.

Sadly there’s no meet up groups where I live, but I’ll see if I can find a group on Facebook. I’ll also look into CBT on nhs. Thank you.

Yes, my bad for sending those screenshots. I’ve always been there for the friend during her hard times and she would go at length about them and I would listen without judgement. I’d say I’m in that position of needing support now, but as it’s so un-relatable to others around me I now try to stay positive (but this is what’s causing issues for me)

Thank you for your kind words

Informing dvla and insurance was one of the first things I did. And yes, it’s so much more than just counting carbs. Like I haven’t yet been taught how to bolus for protein and fat. Or when my cortisol or adrenaline levels go up.

I haven’t told many people either. They don’t get it anyway.

Thank you. I have a couple of books already but have always been keen on reading think like a pancreas. Audible sounds like a good plan - I can listen to it while I do my chores.

Your post made my eyes water (and trying to hide it from my kids!). - I think I needed to hear them. Thank you for the tremendous list. I’ll keep it in my notes.

I haven’t been able to reply to everyone, but thank you all for your comments. I think it really would help me to have someone with type 1 in real life. Hopefully I’ll meet someone at Dafne course.