Three weeks in — having lows — feeling sad and scared

[jasmine]

Hi everyone,
I have a bit of a vent if that’s okay. It’s been a bit under 3 weeks since I got diagnosed, and I’m feeling super down and scared. In the beginning it was more of a shock, but now it’s settled in that this is something that i’ll have to worry about for the rest of my life, and I’m pretty miserable about it.

Nurses have upped my slow and rapid doses twice now, and now my bloods are mostly back in range and not super high, I’ve gone low a few times. It’s always about 60-90 mins after eating, and it’s happening even though i’m trying to be conservative with my insulin dosages. Like, last night I took 3 units for a large meal, rice and curry and chocolate — dsn said to take 5 units with a large meal, but I've just been ignoring her because that feels like way too much. Good thing too, because an hour later I was at 2.6. It’s the lowest I’ve been yet — it was super scary and to be honest I feel slightly traumatised by it, the number kept going down and I was terrified it wouldn’t get back up. but I also feel silly for being so scared when this is I assume going to become part of my life now — I need to get used to it.

Other highlights included going low in a theatre right before a show started (so had a ton of fun blood pricking and beeping in the dark lol) and walking through a park that was about to get locked up and having to sit down in the freezing cold and wait (luckily they didn’t lock the gates). I’ve stopped prebolusing to see if that would stop the 60 minute post-meal drop but that hasn’t helped, and I’m taking less insulin than I was weeks ago for the same meals. I’m not sure if I’m more sensitive to insulin/honeymoon period is being weird/it’s just because my basal has brought me down and therefore I need less mealtime insulin. The nurse is meant to call me tonight or tomorrow so I’ll see what she says.

It just sucks. Since I started going low, I feel uncomfortable eating, and taking insulin, and leaving my house. I’m always scared I’m going to drop, and I feel like a failure when I’m high. I feel anxious all of the time, I don’t want to go out with my friends or do normal things, and I'm super frustrated with myself for that. I feel like I need to just get a grip and get over it — this is my life now, I don’t want to be over-anxious or for diabetes to rule my life, but I’m just scared, especially after that 2.6 last night. I haven’t really been able to focus on work since my diagnosis (I’m self employed, so not the end of the world, but I will need to get back into it sometime), and I feel incredibly guilty about that. I feel very out of control, and like I’m handling this really poorly, and I'm just very physically and emotionally tired.

 

[mashedupmatt]

Sorry to hear you've been struggling @jasmine - it is very difficult at first but I promise it does get easier - do you have a CGM (Continuous Glucose Monitor) such as a Libre or Dexcom? If not you definitely should have one - going so low so soon after food does indicate that you may have taken too much mealtime insulin and possibly your basal insulin is a bit too much - but it's all about trends for me - I make a few minor tweaks and look at trends and see how/if the adjustments are working - I was hyper-sensitive to insulin for a year or so after diagnosis, until the honeymoon period started coming to an end so that may be a factor (but everyone is different) - try not to get too down over it - you are so new to all of this, and you will have a few bumps in the road, and definitely don't feel guilty about anything - you are trying your best to work with the cards you have been dealt and it is hard but reaching out here is the best thing you can do (we all "Get it") - and you are definitely not handling it poorly, it definitely gets easier

 

[HayleyR]

Hi @jasmine feel free to have a rant here as we can relate to what you're going through. Diabetes certainly can be a pain in the bum and some days can be particularly frustrating. In the beginning it takes time to get used and I can remember feeling so stressed and alone at times as friends and family just don't understand what it like to have to deal with it 24/7! Honestly please believe me when I say it will get gradually better just takes a bit of time to get used it and it's early days for you; I was so overwhelmed when I was first diagnosed.... I think you would find a blood glucose sensor really helpful, that way you can see if your blood is going high, low or stable. These weren't available years ago, you can get a free sample from Abbotts which lasts 2 weeks, has been a game-changer for me - https://www.freestyle.abbott/uk-en
I also have lucozade glucose tablets dotted around everywhere, house, car, handbag, bedroom so that I can deal with any hypos straight away. Do let me know how you're getting on and feel free to vent! 😉

 

[Thebearcametoo]

Well done for coping with your first hypo and for dealing with hypos in stressful situations.

It will get easier and you will get more confidence but you’re in such early days it’s normal to feel out of your depth.

We found rice was more likely to cause hypos to begin with. Not so much now. Are you carb counting yet?

 

[Inka]

You were proved right in ignoring the nurse’s dose advice @jasmine Take that as a positive thing - that you’re getting a feel for your diabetes. A couple of things: a ‘large meal’ is too vague to be helpful. You need to measure the carbs even if it’s only, for example, measuring how many tablespoons of rice you have. Make a note of this and the dose that works for you, so when you eat that meal again you can check your notes and see ‘have X rounded tablespoons of rice and bolus Y units of insulin’. Another thing to say is that, depending on the rice, the carbs can be released more slowly, so if you have all your insulin before the rice meal, it can start working before all the rice carbs have been released, thus risking a low.

All this is experience, but it will get easier. Keeping meal/insulin/timings notes is an easy way to keep on top of things and give yourself confidence.

Another important thing to say is that often after diagnosis, and after a few weeks of insulin, your own damaged beta cells get a bit of a rest and manage a brief, temporary recovery and to make a little insulin of their own. This can mean the amount of injected insulin you need is less.

It’s completely normal to be worried and shaken by hypos. I still am decades after diagnosis. Go carefully, go cautiously and know that with each passing week you’re gaining more experience.

 

[SimonP]

Good for you for trusting your gut re reducing bolus, as @Inka says you may find large meals are absorbed slowly so you might need to take multiple smaller injections to cover them. While it's good to get advice, you will become the expert on your diabetes, which is a good thing and very empowering.

I still sometimes manage to go low immediately after eating supper (I've only been practising for 39 years) though this is a good excuse to eat an ice cream.

Re going low in theatres, while wandering home through parks and the like, been there, done that. It's annoying - emergency snacks are probably the best bet (pack of mini skittles in a pocket and another in each coat/jacket, then also stashed in the car, and bags or friends' bags, etc.), also listen to your gut and if you think you might go low treat early and aggressively if out (ideally without needing to dip into the emergency snack, i.e. get something to eat/drink wherever you are even if you don't end up finishing it, buy something in a newsagent as you wander past, etc.) - the worst that will happen is you'll run a bit high and need to correct when you get home. This is vastly better than being hypo while walking home and/or needing to get up part way through a show/film/etc.

The one good thing about having gone low a few times is that you hopefully have more of an understanding of both what it feels like to start dropping and what it feels like to actually be hypo (and work out how to function to make it home for example.) In the dim and distant past this was the way to do it - I never used to take a blood tester out with me in the evening when I was a student 25+ years ago.

One last thing to note, if I go out (shopping, film, night out) I did and still do always need much less insulin that I would for the same food/drink/level of activity had I stayed at home (say half the quantity). You may find something similar happens.

 

[katesypoop]

Hi everyone,
I have a bit of a vent if that’s okay. It’s been a bit under 3 weeks since I got diagnosed, and I’m feeling super down and scared. In the beginning it was more of a shock, but now it’s settled in that this is something that i’ll have to worry about for the rest of my life, and I’m pretty miserable about it.

Nurses have upped my slow and rapid doses twice now, and now my bloods are mostly back in range and not super high, I’ve gone low a few times. It’s always about 60-90 mins after eating, and it’s happening even though i’m trying to be conservative with my insulin dosages. Like, last night I took 3 units for a large meal, rice and curry and chocolate — dsn said to take 5 units with a large meal, but I've just been ignoring her because that feels like way too much. Good thing too, because an hour later I was at 2.6. It’s the lowest I’ve been yet — it was super scary and to be honest I feel slightly traumatised by it, the number kept going down and I was terrified it wouldn’t get back up. but I also feel silly for being so scared when this is I assume going to become part of my life now — I need to get used to it.

Other highlights included going low in a theatre right before a show started (so had a ton of fun blood pricking and beeping in the dark lol) and walking through a park that was about to get locked up and having to sit down in the freezing cold and wait (luckily they didn’t lock the gates). I’ve stopped prebolusing to see if that would stop the 60 minute post-meal drop but that hasn’t helped, and I’m taking less insulin than I was weeks ago for the same meals. I’m not sure if I’m more sensitive to insulin/honeymoon period is being weird/it’s just because my basal has brought me down and therefore I need less mealtime insulin. The nurse is meant to call me tonight or tomorrow so I’ll see what she says.

It just sucks. Since I started going low, I feel uncomfortable eating, and taking insulin, and leaving my house. I’m always scared I’m going to drop, and I feel like a failure when I’m high. I feel anxious all of the time, I don’t want to go out with my friends or do normal things, and I'm super frustrated with myself for that. I feel like I need to just get a grip and get over it — this is my life now, I don’t want to be over-anxious or for diabetes to rule my life, but I’m just scared, especially after that 2.6 last night. I haven’t really been able to focus on work since my diagnosis (I’m self employed, so not the end of the world, but I will need to get back into it sometime), and I feel incredibly guilty about that. I feel very out of control, and like I’m handling this really poorly, and I'm just very physically and emotionally tired.

I don't have any helpful advice, as was also recently diagnosed (told probably type 1 on 14th Feb, recently confirmed) so just wanted to share solidarity with feeling overwhelmed and upset. I have found this forum unbelievably helpful, everyone is so friendly and kind. So don't be afraid to ask more questions and rant more! Hugs

 

[Riggers]

Hello Jasmine, welcome to the club. Believe what has already been said it will get easier to deal with. You are doing great already, listening to your gut instinct. I’m 18 months into this and still remember the shock of that diagnosis.
The first hypo was scarey, but I’m now used to having jellybabies with me all the time and can usually head them off.
This forum has been an amazing source of help and support, so it’s great that you have landed here.
You will find ways to incorporate this into your life it does become our new normal. And you will find ways to deal with YOUR diabetes because we are all different! One size does not fit all!

 

[jasmine]

Sorry to hear you've been struggling @jasmine - it is very difficult at first but I promise it does get easier - do you have a CGM (Continuous Glucose Monitor) such as a Libre or Dexcom? If not you definitely should have one - going so low so soon after food does indicate that you may have taken too much mealtime insulin and possibly your basal insulin is a bit too much - but it's all about trends for me - I make a few minor tweaks and look at trends and see how/if the adjustments are working - I was hyper-sensitive to insulin for a year or so after diagnosis, until the honeymoon period started coming to an end so that may be a factor (but everyone is different) - try not to get too down over it - you are so new to all of this, and you will have a few bumps in the road, and definitely don't feel guilty about anything - you are trying your best to work with the cards you have been dealt and it is hard but reaching out here is the best thing you can do (we all "Get it") - and you are definitely not handling it poorly, it definitely gets easier

Thank you so much for the kind words! I don’t have a CGM yet, when I asked my DSN they said that we’d talk about it after I have my next endocrinologist appointment, but that won’t be until July :/ I think they're waiting for the antibody tests to confirm? But I can try asking again, or maybe I can just ask my GP to prescribe?

 

[jasmine]

I don't have any helpful advice, as was also recently diagnosed (told probably type 1 on 14th Feb, recently confirmed) so just wanted to share solidarity with feeling overwhelmed and upset. I have found this forum unbelievably helpful, everyone is so friendly and kind. So don't be afraid to ask more questions and rant more! Hugs

Aww thank you! You beat me by twelve days

 

[jasmine]

Good for you for trusting your gut re reducing bolus, as @Inka says you may find large meals are absorbed slowly so you might need to take multiple smaller injections to cover them. While it's good to get advice, you will become the expert on your diabetes, which is a good thing and very empowering.

I still sometimes manage to go low immediately after eating supper (I've only been practising for 39 years) though this is a good excuse to eat an ice cream.

Re going low in theatres, while wandering home through parks and the like, been there, done that. It's annoying - emergency snacks are probably the best bet (pack of mini skittles in a pocket and another in each coat/jacket, then also stashed in the car, and bags or friends' bags, etc.), also listen to your gut and if you think you might go low treat early and aggressively if out (ideally without needing to dip into the emergency snack, i.e. get something to eat/drink wherever you are even if you don't end up finishing it, buy something in a newsagent as you wander past, etc.) - the worst that will happen is you'll run a bit high and need to correct when you get home. This is vastly better than being hypo while walking home and/or needing to get up part way through a show/film/etc.

The one good thing about having gone low a few times is that you hopefully have more of an understanding of both what it feels like to start dropping and what it feels like to actually be hypo (and work out how to function to make it home for example.) In the dim and distant past this was the way to do it - I never used to take a blood tester out with me in the evening when I was a student 25+ years ago.

One last thing to note, if I go out (shopping, film, night out) I did and still do always need much less insulin that I would for the same food/drink/level of activity had I stayed at home (say half the quantity). You may find something similar happens.

Thank you so much for all the tips! I guess I’ve been trying to stay ‘in range’ when I’m out and about, but that often seems to end up with me going low, so I’ll start treating earlier if I feel I’m dropping down. Like you said, better to be high than low when I’m out. And I’ve been amazed at how fast just walking around can bring my sugar down!! Thank you!

 

[jasmine]

You were proved right in ignoring the nurse’s dose advice @jasmine Take that as a positive thing - that you’re getting a feel for your diabetes. A couple of things: a ‘large meal’ is too vague to be helpful. You need to measure the carbs even if it’s only, for example, measuring how many tablespoons of rice you have. Make a note of this and the dose that works for you, so when you eat that meal again you can check your notes and see ‘have X rounded tablespoons of rice and bolus Y units of insulin’. Another thing to say is that, depending on the rice, the carbs can be released more slowly, so if you have all your insulin before the rice meal, it can start working before all the rice carbs have been released, thus risking a low.

All this is experience, but it will get easier. Keeping meal/insulin/timings notes is an easy way to keep on top of things and give yourself confidence.

Another important thing to say is that often after diagnosis, and after a few weeks of insulin, your own damaged beta cells get a bit of a rest and manage a brief, temporary recovery and to make a little insulin of their own. This can mean the amount of injected insulin you need is less.

It’s completely normal to be worried and shaken by hypos. I still am decades after diagnosis. Go carefully, go cautiously and know that with each passing week you’re gaining more experience.

Thank you! Yes I started carb counting (again, against the nurses advice… she told me ‘you don’t have to worry about that yet, we’re trying not to overwhelm you, just focus on the size of your meal…’ but obviously I am more overwhelmed by just taking stabs in the dark lol). I’ve been doing fine on a 1:25 ratio, but then the night I got the 2.6 I’d done 1:30 to be conservative, and still dropped, so that was pretty uncomfortable. It was brown rice so maybe that was why? Spoke to the nurse and she said I should only take max 2 units at a time, and no insulin at all if I’m under 6, until we work out how sensitive I am. Thank you for the kind words

 

[mashedupmatt]

Thank you so much for the kind words! I don’t have a CGM yet, when I asked my DSN they said that we’d talk about it after I have my next endocrinologist appointment, but that won’t be until July :/ I think they're waiting for the antibody tests to confirm? But I can try asking again, or maybe I can just ask my GP to prescribe?

I would definitely ask again, particularly if you are going hypo from time to time - you can see which way your BG is going so you can fend the hypos off with a quick boost of glucose if you need to - they should have given you one as soon as they put you on insulin therapy - I think that your GP would need to be advised by the DSN to prescribe one so I'd definitely put forward your case to your DSN - you're doing great though - well done

 

[helli]

Thank you so much for the kind words! I don’t have a CGM yet, when I asked my DSN they said that we’d talk about it after I have my next endocrinologist appointment, but that won’t be until July :/ I think they're waiting for the antibody tests to confirm? But I can try asking again, or maybe I can just ask my GP to prescribe?

You shouldn't have to wait.
I think your GP should be able to prescribe a CGM if you are diagnosed with Type 1 (at least that is the case in England). They should be available to everyone with Type 1 so I would be surprised if they need to be advised by the DSN.
If you want to get ahead of the game (temporarily, at least), you could apply for the free Libre trial for 15 days. THis is available from their website.

Once you get your CGM, the default low alarm is usually 4.0 (or it may be 3.9). The recommendation is to set it higher - somewhere around 5.0 - 5.5. This will give you time to react and avoid a hypo before it happens.

As others have said, it does get easier but in the meantime, feelings of frustration, sadness and scared are common. We get it - all of us with Type 1 have been there and lived those feelings.

Good luck.

 

[Proud to be erratic]

@jasmine, yes do ask your GP to write the prescription for CGM. In Apr '22 NICE updated their Guidance (NG17) and quite specifically (and quite rightly, long overdue in my opinion) placing the authority for prescribing the lower cost CGMs with GPs in England. At that time there had previously been only one lower cost standalone CGM officially recognised by the NHS tariff, from Abbott with its Libre 1 - in transition to Libre 2 - and that CGM was not then in the gift of a GP to prescribe. They were responsible for prescribing but Consultant had to provide an authority by making a recomnendation to a GP.

The revise of NG17 acknowledged more options (choices) were needed; this is in line with any other medication; not everyone can tolerate every medication and this is true of CGMs. By chance this was my experience: I got Libre 2 in Feb '21 and for 12 months it became increasingly clear that my body was incompatible with Libre 2 and as I read the proposed revise to NG17 I was determined to get my Libre changed to any other, but from the reviews then the original Dexcom One seemed a front runner alternative.

The revise included that CGMs should also routinely be provided to those of us who are insulin dependent. 3 other types were added to the low cost tariff of which 2 are commonly found today: Abbott's Libre 2+ and Dexcom's One+. The tech is pretty rapidly changing right now!

There were some constraints within the NG17 revise, but these are relatively mild. You, with both basal and bolus insulins, fully qualify. In mid '22, delays inevitably arose, partly as these things can take a while to be distributed, and thus implemented; also partly because funding wasn't immediately in place. All of that should now no longer be an excuse - if you are in England. I simply don't know how the other 3 nations manage CGM prescribing.

So do gently pester your GP to step up and do the right thing. However you can take a tiny consolation that your last 3 weeks without CGM will have given you the experience and confidence to manage with only finger pricking and a test meter. CGMs do go wrong either as individual sensor failures or from software glitches; these failures are real, not just theoretical and when they happen turning back to fps is a nuisance but far less stressful if you already know that it's a process that can be workable. I worry for those who get their CGM on day oone of their diagnosis and then find weeks/months later that the latest software change has instantly made their CGM useless for a protracted period.

 

[everydayupsanddowns]

Thank you! Yes I started carb counting (again, against the nurses advice… she told me ‘you don’t have to worry about that yet, we’re trying not to overwhelm you, just focus on the size of your meal…’ but obviously I am more overwhelmed by just taking stabs in the dark lol). I’ve been doing fine on a 1:25 ratio, but then the night I got the 2.6 I’d done 1:30 to be conservative, and still dropped, so that was pretty uncomfortable. It was brown rice so maybe that was why? Spoke to the nurse and she said I should only take max 2 units at a time, and no insulin at all if I’m under 6, until we work out how sensitive I am. Thank you for the kind words

You are doing amazingly well @jasmine - and are developing the intuition, perseverance, and experimentation/review mindset that will really help you keep your diabetes in it’s little corner over the coming years - at least most of the time.

Scary hypos like that can really shake you up, and it would often take me a week or two to get my confidence back. It was almost like my body had ‘betrayed’ me, and I just couldn’t trust it any more.

I wonder whether your flagging beta cells are having a bit of a second wind now that they are supported by the injected insulin. What happens to your BGs overnight? Do you see much drop from bed time to waking? Might be worth having an early evening meal (say 6ish) and then just having your background (basal) insulin active overnight. Ideally your BG levels would only drift up or down by about 1.7mmol/L throughout the night. You may even want to set an alarm at 3am and check then to get a fuller picture.

I only suggest this, because sometimes when my meal doses are misbehaving it ends up actually being my basal insulin that’s out of whack. I can’t explain it mathematically, but time and time again a fraction of a unit-per-hour change in basal up or down can get my meal doses to work ‘properly’ again.

Keep going! T1 is such a steep learning curve in the beginning - it’s not easy having to pretend to be your own pancreas. You are doing amazingly, keep it up.

 

[jasmine]

You are doing amazingly well @jasmine - and are developing the intuition, perseverance, and experimentation/review mindset that will really help you keep your diabetes in it’s little corner over the coming years - at least most of the time.

Scary hypos like that can really shake you up, and it would often take me a week or two to get my confidence back. It was almost like my body had ‘betrayed’ me, and I just couldn’t trust it any more.

I wonder whether your flagging beta cells are having a bit of a second wind now that they are supported by the injected insulin. What happens to your BGs overnight? Do you see much drop from bed time to waking? Might be worth having an early evening meal (say 6ish) and then just having your background (basal) insulin active overnight. Ideally your BG levels would only drift up or down by about 1.7mmol/L throughout the night. You may even want to set an alarm at 3am and check then to get a fuller picture.

I only suggest this, because sometimes when my meal doses are misbehaving it ends up actually being my basal insulin that’s out of whack. I can’t explain it mathematically, but time and time again a fraction of a unit-per-hour change in basal up or down can get my meal doses to work ‘properly’ again.

Keep going! T1 is such a steep learning curve in the beginning - it’s not easy having to pretend to be your own pancreas. You are doing amazingly, keep it up.

Thank you, that means a lot I don't really know what's going on with my dosage at the moment, but I do think my basal is probably wrong? Because I'm waking up high, but sometimes dropping after meals, the nurse told me to up my basal and drop my bolus -- she says it's better to be high than low, so I shouldn't ever take more than 2 units bolus at a time to avoid going low. But I remember the endo telling me basal should be about 50% of my total insulin, and right now that puts me at 14 units basal and about 5 units bolus total a day, which seems.... wrong. Also being told not to take more than 2 units bolus at a time is just sort of limiting the amount of food I can eat really, especially when she also said I shouldn't take more than one bolus injection every four hours -- doesn't really give me any time to snack? I don't know, I feel like what I'm being told to do is wrong but I don't know how to fix it...

It all seems very unpredictable. I've been working off around a 1:25 carb ratio, and when I check 2 hours later, sometimes I'm in range, sometimes I've shot up and am high, and sometimes I've dropped down to 4. I feel like I'm banging my head against a wall.

I usually go to bed high (because since she dropped my bolus, I'm obviously not taking enough for dinner) and drop a couple points in the night, but still wake up high.

 

[Woodywoodpecker]

Thank you, that means a lot I don't really know what's going on with my dosage at the moment, but I do think my basal is probably wrong? Because I'm waking up high, but sometimes dropping after meals, the nurse told me to up my basal and drop my bolus -- she says it's better to be high than low, so I shouldn't ever take more than 2 units bolus at a time to avoid going low. But I remember the endo telling me basal should be about 50% of my total insulin, and right now that puts me at 14 units basal and about 5 units bolus total a day, which seems.... wrong. Also being told not to take more than 2 units bolus at a time is just sort of limiting the amount of food I can eat really, especially when she also said I shouldn't take more than one bolus injection every four hours -- doesn't really give me any time to snack? I don't know, I feel like what I'm being told to do is wrong but I don't know how to fix it...

It all seems very unpredictable. I've been working off around a 1:25 carb ratio, and when I check 2 hours later, sometimes I'm in range, sometimes I've shot up and am high, and sometimes I've dropped down to 4. I feel like I'm banging my head against a wall.

I usually go to bed high (because since she dropped my bolus, I'm obviously not taking enough for dinner) and drop a couple points in the night, but still wake up high.

Hi I was diagnosed last April, after a couple off weeks had to match my bolus with amount off carbs. I find mornings I need more bolus to stop spike so take 4.5 units for 26 carbs, but do find I start going lower about hour and a half later so have a snack. Lunch and tea tend to take less depending what I am eating. I started on 12 units basal morning and night, but now on 5 units each time. Bed time I have a snack digestive biscuit, but everyone’s needs are different. I struggled in the beginning with lows, I still don’t like them but getting better with them. I was like you very anxious about going out and getting back to work, also put off eating out. My work let me go back reduced hours, slowly got back to going out and eating out. I’m still not a 100% with it all but a lot better than what I was in the beginning. I’m in the honeymoon period, it does sometimes feel like a rollercoaster ride, in time you will get more confidence with it all

 

[Tdm]

Thank you, that means a lot I don't really know what's going on with my dosage at the moment, but I do think my basal is probably wrong? Because I'm waking up high, but sometimes dropping after meals, the nurse told me to up my basal and drop my bolus -- she says it's better to be high than low, so I shouldn't ever take more than 2 units bolus at a time to avoid going low. But I remember the endo telling me basal should be about 50% of my total insulin, and right now that puts me at 14 units basal and about 5 units bolus total a day, which seems.... wrong. Also being told not to take more than 2 units bolus at a time is just sort of limiting the amount of food I can eat really, especially when she also said I shouldn't take more than one bolus injection every four hours -- doesn't really give me any time to snack? I don't know, I feel like what I'm being told to do is wrong but I don't know how to fix it...

It all seems very unpredictable. I've been working off around a 1:25 carb ratio, and when I check 2 hours later, sometimes I'm in range, sometimes I've shot up and am high, and sometimes I've dropped down to 4. I feel like I'm banging my head against a wall.

I usually go to bed high (because since she dropped my bolus, I'm obviously not taking enough for dinner) and drop a couple points in the night, but still wake up high.

A few things..
Forget the ratio bolus to basal. I also thought the 2 should related at first, from what i read. They don't. You need the basal you need and it is, for any individual, unrelated to bolus.
Your levels will rise in the morning due to the dawn effect/foot on the floor. I take 1 unit on waking to cover if not having breakfast.
Your bolus may change between days of the week, or different times. I'm 1 to 9 when working, 1 to 18 weekends.

You WILL get there. The early days can be upsetting and scary but it does get easier

 

[Wendal]

Thank you, that means a lot I don't really know what's going on with my dosage at the moment, but I do think my basal is probably wrong? Because I'm waking up high, but sometimes dropping after meals, the nurse told me to up my basal and drop my bolus -- she says it's better to be high than low, so I shouldn't ever take more than 2 units bolus at a time to avoid going low. But I remember the endo telling me basal should be about 50% of my total insulin, and right now that puts me at 14 units basal and about 5 units bolus total a day, which seems.... wrong. Also being told not to take more than 2 units bolus at a time is just sort of limiting the amount of food I can eat really, especially when she also said I shouldn't take more than one bolus injection every four hours -- doesn't really give me any time to snack? I don't know, I feel like what I'm being told to do is wrong but I don't know how to fix it...

It all seems very unpredictable. I've been working off around a 1:25 carb ratio, and when I check 2 hours later, sometimes I'm in range, sometimes I've shot up and am high, and sometimes I've dropped down to 4. I feel like I'm banging my head against a wall.

I usually go to bed high (because since she dropped my bolus, I'm obviously not taking enough for dinner) and drop a couple points in the night, but still wake up high.

Hi Jasmine,
As others have said you are doing really well and the first few months can be very scary as things settle down but in many ways the tougher it is short term can prove a much better experience in the longer term as you gain so much confidence and experience from your learnings.
Am not sure your basal/ bolus ratio seems right to me as think it is more normally anticipated to be closer to 30% though individuals need different ratios depending on their specific situation.You only get there by advice and experimenting.
Some endos will try and control your diabetes by mainly basal at least initially as it can be a simpler routine while you gain experience and it is important to try and get some parts as a constant while you experiment with other variables.
However at end of the day it is imo important for yourself to try and manage it best yourself and again you should not have to wait until July for a CGM and your GP or DSN should be able to provide you one straight away which will make your job in managing your diabetes much easier.
BW