Sorry, MDI is Multiple Daily Injections, as in the approach you are on, the most common treatment of type 1. I'm on a pump now.
Hey Morris, where are you? The care you mention is beyond bad, it's frightening.
I'll take it that care around you might be really lacking in general. There is one good thing though, and that is that you can be really quite self sufficient with this condition, although finding a good doc for the medical side (tests, changing meds or insulins etc) really is very beneficial. You should try and see an endocrinologist - they are specialists who deal with diabetes - either regularly (3 month or 6 month or the like) or, if you can find a general doctor who is willing to travel with you somewhat in your diabetic travels, in getting regular blood tests, discussing your control and taking care of medecine etc, then that's an option too.
But the vast majority of the work must come from you, in the way you handle this day to day. So in a way, although you've been through a truly terrible induction, it's good to be finding your feet and your strength yourself, anyway.
First, a couple of comments from my perspective.
Your tweaking off your own bat, shows you are emminently suited to dealing with this condition and well set up to find really good solutions that will lead to control and a minimisation of the condition in your life. If you are someone who has an internal compass about what is responsible tweaking, if you trust yourself to be in charge - that's fantastic. Know, that this is likely to give you run ins with the medical fraternity from time to time. Understand that this grief is not at all uncommon for those who know they need to take control, but come up against a system that's not appreciative or receptive of them taking control of their health (and life).
This again feeds back to the medical help you should seek (and it can be a long search indeed) - the kind of endo or GP who listens to your findings, and is supportive of intelligent, reasonable self management. If you don't get those indications, then move on.
Ok. Lets talk a bit about the dosaging method you've been put on. it's quite outdated, the idea that you can take a one size fits all, guestimate roughly the same carbs per meal, and maintain good control. It really doesn't work that well for many. OK, right now I will just put in a qualifier there that some people seem to use it well, especially after years of experimentation. But, I think you might do well to skip it entirely.
Now, what you are doing with it sounds perfectly sensible - tweaking it to produce the best results. But, thing is, you can only get so far with that, it's like playing with big mittens on.
One of the big reasons it would be good to get one of those books, (Amazon should have them) is to really read up on the practise of carb counting and using that to dose for each meal. You really wnat a doc to be suportive of that too, if possible. I'll come to the question of "must I weigh everything" in a bit. Here's how carb counting works as a system:
You arrive at a central number for yourself, the number of grams of carbs, that one unit of your insulin will "cover". There are a few ways to arrive there, and people can vary quite a lot in what I:C ration they require. Once you have ballpark you can adjust this at any time.
A typical example might be an insulin to carb ratio of 10:1. So for every 10 grams of carbs, you need one unit of insulin administered.
Then, having counted up the grams you eat for the meal or snack, you can then mathematically deduce a dise to cover that meal. Eating 25g of cereal and 10g of milk? That's 35g.
35g / 10g = 3.5 units of insulin required for that meal.
If you had a big pasta being 50g, and couldn't help but have some huge dessert, 40g, then that's 90g.
90g / 10g = 9 units required for that meal.
If you eat a salad sandwich for a snack between meals, you see from the pack that each slice is 10g and the veggies you feel don't really count, then that's 20g.
20g / 10g = 2 units for the sandwich.
etc etc.
Now, one of the beauties of this system is that instead of thinking of adjusting for each meal, each food, each time, each... etc etc, you can adjust your I:C ratio and make changes across the board with a minimum of fuss.
Now, I:C and carb counting is by no means foolproof, in fact some find it frustratingly doesn't provide good answers. And, I think it is likely you'll need to modify your approach for different carbs - eliminate some, restrict others, dose more for this, dose less for that. For many others it provides a very good springboard to arrive at a decent dose, I guess I am suggesting it may well be a good thing for you to look into as you try and sort out how to make insulin work for you. I would want you to learn more about it through a solid source, make up your own mind and decide for yourself how to go about shifting to that system if you want to.
As for weighing: yes, weighing can be very useful. But, there are a few ways you can get to at least a good approximation of carbs: read the label, depending on service size etc, you can divide it up physically to keep track of the carbs. Have one of those cheap little books you can get that have carb ratings, to look up. Sit down with your favourite foods and use the search engine on such sites as
CalorieKing - Diet and weight loss. Calorie Counter and more and write yourself a little short list to carry or have around.
Pretty soon you start to get more familiar with carb amounts, and it's not so important to weight every time, you develop other tricks. And that's coming from someone with a terrible memory.
Speaking of memory. I would not find it surprising if your memory has been affected by recent events. The sickness that comes with diagnosis can be hard of the body. Adjusting your blood sugars down again can be hard on the body. Fluctuating blood sugars can be hard on the body. And, by extension, all of that applies to the mind. I guess don't stress if you find yourself a bit flaky until you get to some more even BG (blood glucose) control. Ok, so that will happen by - being less flaky and not stuffing up and being smart about it, you say, and that's true. But try to concentrate on slow improvement and taking it easy on yourself, sure and slow progress is bound to happen. It is a bit of a balancing act, instead of stressing and rocking the boat, you need to believe a bit in the stabilizing power of gravity I guess
That said, be sure not to double your long acting dose or anything, maybe for the moment you can have some kind of "I've done it" system like a tick on a piece of paper, or moving your gear somewhere different once it's done.
Lets just assume for a moment you are a bit like me though, and don't generally have a great memory for detail (I am similar in that I will remember every detail sometimes and be clueless other times). It's good to try and find a way to log at least some of your findings through the day, so that you can look back on it and draw some conclusions, make progress. I admit I've had a lot of trouble over the years trying to do that consistently, I lose log books, forget to do it, etc etc. I guess you gotta just give some approaches a go and see if you can get some joy. it really helps to build on the bits and pieces of knowledge you gain.
You can see that it helps to be motivated and try things, but may well be a negative thing to be a perfectionist, when it comes to this condition. It's good for a type 1 to foster some zen, even while they get frustrated as how issues can thwart the best control, and even while they do their best to do some good work and stay committed. The whole motivation game is a whole other thing. Persistent positivity (if grounded by practicality) is in my opinion, by far the best weapon.
Re the honeymoon period, it's pretty common to get a period of a few weeks up to a year where insulin needs are much less as the pancreas still produces. It's hard to say with individual cases, for example we can't look at the doses you have mentioned and say "you are in honeymoon" because people's bodies can need wildly varying amounts of insulin just "because". Well, if you mentioned just taking a couple of units of insulin, it may be fair to guess you were in honeymoon. But as it is it's not right to guess from the surface.
You can get a test done to check your pancreas function, called a C-peptide. It's not all that common, but know that it's possible. Again, might be something to take up with an endo.
But, in the end, what you'll be dictated by - always, is insulin needs to stay as in control as possible. So, just say you are in honeymoon and you fall out of it, you'll find your insulin is inadequate and will need to adjust dose up to compensate. It's messy, tricky... at least it was for me... there is really no way to do it except good judgement and trial and error.
I just wanted to mention there can be other factors with insulin therapy that can throw spanners in the works. Rather than try to list them, its more a suggestion to speak up, here, at the docs, do the research, on specific issues you are having.
As for feeling lost in reply, don't worry about it in the least. You seem to be doing a great job making sense out of this. It's safe to say that many people get stuck - for example, consider the prevalent attitude that the doc knows best at all times, and you must never change dosage without their 100% blessing, no matter how much your judgement tells you to take control - those people in the wrong situation are royally stuffed.
Breath, you're doing great, take your time thinking about and tackling these issues.
