A month in to diabetes type 1 and can't get my head around it

[RoseShiel]

I'm sitting here writing this crying my eyes out, rushed to hospital on Christmas day with DKA with the doctors repeatedly telling my family how sick I was, we had no idea what was going on, that day has changed my life forever, currently battling heart disease aswell having open heart surgery in 2017 and that also killing me, and now this, I'm anxious about everything now, I'm stressed about it all, it's out of my control and I hate not being in control, my heart medication mask out hypos so I've only experienced symptoms of one out of seven, this scares the **** out of me cause we no how dangerous not treating hypos can get, the only place I feel safe is in my own home. I'm also Coeliac so carb counting has been very hard for me and confusing, that's had a stop to it until I see a nurse, insulin seems to be helping bring down my sugars now, my bilirubin in my liver is borderline and my hba1c bloods were 80% but apparently this is normal considering I've known about this a month!! Please someone tell me this get a easier, it's all very well my family saying there here for me and it will get better, but they aren't going through it! Hardest thing ever for to get my head round. I keep hoping it's just a dream them bam reality kicks in!

 

[Rachox]

Hi Rose and welcome. I’m so sorry it’s in such difficult circumstances. I’m Type 2 so can’t help with the specifics so I’ll tag in some type 1s who may be able to help you. @Diakat , @Juicyj , @helensaramay , @Mel dCP , @Jaylee , @kitedoc

 

[RoseShiel]

Hi Rose and welcome. I’m so sorry it’s in such difficult circumstances. I’m Type 2 so can’t help with the specifics so I’ll tag in some type 1s who may be able to help you. @Diakat , @Juicyj , @helensaramay , @Mel dCP , @Jaylee , @kitedoc

Thank you

 

[sarahdennis87]

Hello. I’m a newbie to the forum but I’ve been type 1 for almost 16 years. It does get better! It becomes second nature but it is a lot to get your head around in the beginning, especially with the carb counting. Even now I get it wrong, I can never get pasta right! Don’t be so hard on yourself. Take one day at a time. It will all come in good time.

 

[Scott-C]

Deep breaths, @RoseShiel , deep breaths!

Yes, it does get easier, but how long that takes varies from person to person.

You'll go through a slew of emotions over the next few months, but the vast majority of us just kinda grow into it in stages.

It can be unpredictable at times, that's just the biology of it, but as time goes by we learn more about how insulin works and it does get a lot easier to match insulin dosing and timing to meals.

Once you get some of the basic rules under your belt, there's remarkably few restrictions food wise - I regularly go out for curries, Chinese buffets and a few beers at the weekend, although obviously being coeliac as well will make it trickier for you (sorry, I know nada about coeliac).

What you say about your heart medication masking hypos opens up some possibilities. There's small unobtrusive devices called cgm - continuous glucose monitors. They're small plastic devices about the size of a 2 pound coin, which get stuck on your arm and they then ping blood glucose readings to your phone every 5 mins.

If the app reckons your bg is dropping too low towards hypo land, the phone will ring long before you are hypo, you can then have a look at the graph and decide whether you need some glucose to tail off the drop.

It lets you stop a hypo long before it happens, or at least make it a lot milder than it would otherwise be. They do lots of other useful things too, showing a continuous 24 hr graph so you can make better judgment calls about what doses and meals work for you.

The reason I mention this is that one of the conditions for getting cgm free on prescription is if you are hypo unaware. If your heart doc was to talk with your diabetes doc and was able to confirm the heart drugs are masking hypo awareness, you might be in with a shout. If not, it's about £100 per month (a version called libre is going to be more widely available from April on script so watch this space - libre can be turned into cgm quite easily for £150).

DKA almost killed me, I was unconscious for a day. A year later, I was standing on a ski slope in the Scottish Highlands, a sunny spring day and blue skies. Not dead. Enjoying a days skiing. Being T1 was irrelevant. You'll find your mountain moment at some stage!

 

[RoseShiel]

Deep breaths, @RoseShiel , deep breaths!

Yes, it does get easier, but how long that takes varies from person to person.

You'll go through a slew of emotions over the next few months, but the vast majority of us just kinda grow into it in stages.

It can be unpredictable at times, that's just the biology of it, but as time goes by we learn more about how insulin works and it does get a lot easier to match insulin dosing and timing to meals.

Once you get some of the basic rules under your belt, there's remarkably few restrictions food wise - I regularly go out for curries, Chinese buffets and a few beers at the weekend, although obviously being coeliac as well will make it trickier for you (sorry, I know nada about coeliac).

What you say about your heart medication masking hypos opens up some possibilities. There's small unobtrusive devices called cgm - continuous glucose monitors. They're small plastic devices about the size of a 2 pound coin, which get stuck on your arm and they then ping blood glucose readings to your phone every 5 mins.

If the app reckons your bg is dropping too low towards hypo land, the phone will ring long before you are hypo, you can then have a look at the graph and decide whether you need some glucose to tail off the drop.

It lets you stop a hypo long before it happens, or at least make it a lot milder than it would otherwise be. They do lots of other useful things too, showing a continuous 24 hr graph so you can make better judgment calls about what doses and meals work for you.

The reason I mention this is that one of the conditions for getting cgm free on prescription is if you are hypo unaware. If your heart doc was to talk with your diabetes doc and was able to confirm the heart drugs are masking hypo awareness, you might be in with a shout. If not, it's about £100 per month (a version called libre is going to be more widely available from April on script so watch this space - libre can be turned into cgm quite easily for £150).

DKA almost killed me, I was unconscious for a day. A year later, I was standing on a ski slope in the Scottish Highlands, a sunny spring day and blue skies. Not dead. Enjoying a days skiing. Being T1 was irrelevant. You'll find your mountain moment at some stage!

It's just so so scary and I just don't no how to deal with it, I seem to be at a reasonable stage with my insulin now, I have alarms set everyday so I have it around the same time every day, it's just getting the right food in me with Coeliac aswell it's so tough I have lost 11 pounds in weight though so I must be doing something right I guess but that could also be the stress of everything and I literally just eat 3 meals a day now no snacks and 1 portion is salad and 1 is veg. That sounds very interesting but I don't see my cardiologist until August it was my gp who told me my beta blockers mask out hypos so I've got to be more vigilant with it all. I'm on top of it as much as I can be but it's exhausting at the moment. I literally saw a diabetic nurse for half hour just to sort my insulin out cause my sugar levels were staying in the upper teens 20 bracket so felt like I was just left to it. Here what you need off you go.
Erghh the DKA was savage I hope I never have to go through that again. Wow your inspiring and hopefully I will get there too.

 

[Antje77]

Please someone tell me this get a easier

Yes, it does!

I'm also Coeliac so carb counting has been very hard for me

Why is that? Carb counting is mainly just look up the carb content of what you will eat. It doesn't make a difference if you eat food without gluten. You'll learn to adjust the amount of insulin you need to the amount of carbs.

I've only experienced symptoms of one out of seven, this scares the **** out of me

Is there any way you could get a CGM or a Libre? Either self funded or via your insurance? How low were the hypo's you didn't feel, what happened?

the only place I feel safe is in my own home.

I'm so sorry you feel this way. A bad hypo outside isn't more dangerous than a bad hypo at home. Confining yourself to your home isn't necessary. But please always take your meter and hypo treatment with you where ever you go. If you do, you'll be as safe outside as at home.

Hope things will get better for you soon!

 

[RoseShiel]

Yes, it does!

Why is that? Carb counting is mainly just look up the carb content of what you will eat. It doesn't make a difference if you eat food without gluten. You'll learn to adjust the amount of insulin you need to the amount of carbs.

Is there any way you could get a CGM or a Libre? Either self funded or via your insurance? How low were the hypo's you didn't feel, what happened?
I'm so sorry you feel this way. A bad hypo outside isn't more dangerous than a bad hypo at home. Confining yourself to your home isn't necessary. But please always take your meter and hypo treatment with you where ever you go. If you do, you'll be as safe outside as at home.

Hope things will get better for you soon!

I think the carb counting has been hard for me because to be honest I really don't understand it and I'm not the best at maths either, and adjusting my insulin to it was to much for me so they put me on set doses and taught me about correction doses when needed. I was having sugar readings at 1.6 but i didn't have any symptoms at all apart from my first one which I had sweat pouring off me, trembling, migraine and I felt really sick and dizzy, this was also a reading of 1.6. I take everything I need with me anywhere I go so I no if I need it it's there. It's just so much to take in, but scary knowing I've got to control all of this by myself.
I think I'm more scared about returning to work cause of the work I do ( working with young adults with challenging behaviour, autism etc) alot of lone working so if I have a hypo whilst in this situation I'm putting myself and a vulnerable adult at risk specially if I don't realise I'm having it. I may be looking far to into it but I just can't help but think about the negatives at the min but I think that's because I'm trying to adjust to my new life style

 

[Chook]

I'm Type 2 but when i was on insulin and worked in the same job as you i wasn't allowed to be a lone worker for exactly the reason you said.

Have you spoke to your manager as she/he must do a risk assessment for you to work with vulnerable adults and they need to make adjustments for your condition.. I got moved from 4 on 4 off 12 hour nights working in a 1 to 4 ratio house to working 8 hour 2-10pm shifts in a 4 staff to 5 service users ratio unit. I didn't lose hours or pay.

 

[Scott-C]

Here what you need off you go.

Yeah, the amount of face time with docs etc leaves a lot to be desired.

If you've got a kindle, there's a couple of useful books which a lot of us recommend to fill in the gaps.

Think Like a Pancreas, by Gary Scheiner, he's a T1 and also an endo, so he's dealing with it personally and professionaly. It's a useful reference book covering most aspects of T1, so you can take things in at your own pace.

The other is Sugar Surfing by Stephen Ponder. It's more to do with using cgm well, but still has a lot of detail about how insulin works.

The DKA is behind you. I have only ever had it once, at dx. Most people who get it again after dx do so because they've gone off the rails and decide to ignore it and not use insulin. A bit of care and attention and it's pretty easy to avoid dka.

Snap on the bit you wrote about folks saying it'll be fine! That's exactly what happened with me, my parents telling me it'll be fine, me getting angry saying how do they know, they've not got it.

But, they were right, that stage does fade, I got past it after the initial shock wore off, and it'll likely pan out the same for you too. You just don't know when at this stage.

Try not to worry too much about levels right now. Longer term, the aim is to be roughly around the 5 to 7 mark between meals, but you've got time to practice so higher levels ain't a big deal for the moment. As time goes by, you will likely start seeing connections between insulin amounts and certain types of food and that'll help in tightening up ranges.

Even making mistakes can be useful. If you're trying to figure out dosage for a particular meal and you end up hypo, step back, think about how you'll play the meal next time and decide whether a smaller dose would suit it.

A doc once said that T1 is "the ultimate self treated condition" because we have to make so many darned decisions. It likely seems so scary at the moment because you haven't learned the decision making rules yet, but it's extraordinary how often we see posts from newly dx'd who say after only a couple of months or so things like, "ah, I see now, didn't know that before but I do now". It'll make more sense as time passes.

Good luck!

 

[RoseShiel]

I'm Type 2 but when i was on insulin and worked in the same job as you i wasn't allowed to be a lone worker for exactly the reason you said.

Have you spoke to your manager as she/he must do a risk assessment for you to work with vulnerable adults and they need to make adjustments for your condition.. I got moved from 4 on 4 off 12 hour nights working in a 1 to 4 ratio house to working 8 hour 2-10pm shifts in a 4 staff to 5 service users ratio unit. I didn't lose hours or pay.

I no I have a health risk assessment in place due to my heart condition but I'm not sure as to what they will be doing about my diabetes one for the time being. They have put in place for the time being that I'm not to lone woke, I'm guessing if they can't put this in place for the future i will have to find a different kind of job, I inject 5 times a day, and then the testing to I don't see around being able to do that lone working, I will chat with them with my concerns as I'm seeing them tomorrow. Thank you

 

[EllieM]

I no I have a health risk assessment in place due to my heart condition but I'm not sure as to what they will be doing about my diabetes one for the time being. They have put in place for the time being that I'm not to lone woke, I'm guessing if they can't put this in place for the future i will have to find a different kind of job, I inject 5 times a day, and then the testing to I don't see around being able to do that lone working, I will chat with them with my concerns as I'm seeing them tomorrow. Thank you

If you're at risk of hypos then you absolutely need to test, I can do a test in less than a minute so it's quicker than a toilet break. I agree with @Scott-C that a cgm with alerts going to your phone is a definite possibility.

I've been diabetic T1 for 48 years, since I was 8, and I've never had a DKA (I was diagnosed extremely early by my T1 mother). I personally find hypos the most unpleasant part of the illness, but the technology available for avoiding them is getting better all the time. I was promised a cure in 10 or 20 years for most of my life, and while I no longer believe in this for me, I think for young T1s such as yourself the technology may get so good that it's nearly as good as a cure.

For some reason Coeliacs is more common among T1s than the general population, so you definitely aren't alone in being stuck with both these conditions.

Good luck, I know it must seem overwhelming at the moment but in the long term things should get easier.

Oh, just a thought, but have you been given a card to put in your wallet to say that you're T1 on insulin in case you need rescuing from a hypo? It's probably also worth having a medicalert bracelet with that info, it could save your life one day.

 

[Diakat]

@RoseShiel you have already had some great answers above.
Diabetes is not the end of your world - however much it feels like it now. Technology can help, but getting the basics like carb counting right will really help.

 

[Robinredbreast]

I'm sitting here writing this crying my eyes out, rushed to hospital on Christmas day with DKA with the doctors repeatedly telling my family how sick I was, we had no idea what was going on, that day has changed my life forever, currently battling heart disease aswell having open heart surgery in 2017 and that also killing me, and now this, I'm anxious about everything now, I'm stressed about it all, it's out of my control and I hate not being in control, my heart medication mask out hypos so I've only experienced symptoms of one out of seven, this scares the **** out of me cause we no how dangerous not treating hypos can get, the only place I feel safe is in my own home. I'm also Coeliac so carb counting has been very hard for me and confusing, that's had a stop to it until I see a nurse, insulin seems to be helping bring down my sugars now, my bilirubin in my liver is borderline and my hba1c bloods were 80% but apparently this is normal considering I've known about this a month!! Please someone tell me this get a easier, it's all very well my family saying there here for me and it will get better, but they aren't going through it! Hardest thing ever for to get my head round. I keep hoping it's just a dream them bam reality kicks in!

Hi, In time it will get easier and more manageable, also getting support, help, advice and making friends on the forum is a big help, as you are not alone. Take deep breaths, count to ten and take just a little step at a time, I also have coeliac.

Take care x

 

[Knikki]

Hello @RoseShiel from someone who has grown up with T1.

Lots of good info above so I wont any anything more other than always keep asking questions, and nothing is a stupid question plus there is usually someone around here that can give advice or help out

Take care.

 

[Deleted Account]

@RoseShiel Welcome to a very exclusive club.
Whilst none of us joined through choice, we do have fun and adventure together.
Like any club, some of the people, rules and equipment can be very daunting at first but over time, it starts to feel normal.
There is some great advice above so I won't repeat any of that.
I will tell you what my Diabetes Nurse told me when I was diagnosed: "Diabetes should not stop you doing what you want."
I've tested that advice on many occasions with travel, food, exercise, career, ..., and, with a little bit of planning, she was right.
There are some amazing inspirational people with type 1 diabetes (Steve Redgrave, Halle Berry, Theresa May*, ...) and thinking of them gives me a kick every so often when diabetes is getting me down.

*I'm not a fan of our prime minister but I do think it is incredible how type 1 does not appear to stop her.

 

[Juicyj]

Hello @RoseShiel

Try not to panic, it does get alot easier, as mentioned already just take it one day at a time.

My best advice is to learn as much as you can, knowledge is power, Scot has mentioned a great book already 'Think like a pancreas', also have a look at this website to help with carb counting: https://www.bertieonline.org.uk/

Most importantly be kind to yourself, there's a lot to take in but don't beat yourself up when things don't work out the way you planned, just take a deep breath and keep at it, having resilience to work through it will help you hugely. Keep talking to those around you and lean on your DSN to work out your ratios, support is vital, take care and keep us updated