I am now 2 and a half months into my diagnosis of type 1 after a nasty ketoacidosis experience. There’s a bunch of stuff I wish I’d known then - stuff that I expect people were telling me and I didn’t quite hear - that I thought I might write down a few random thoughts in case useful for others. I’m conscious that some of what I say may seem nonsense to those who are months ahead of me and so please read it in the spirit in which it is meant. Also pls do correct me if you think I've got stuff wrong - I know I am still a novice in managing diabetes.
1. You’ll be inundated with people who know someone [usually friend of a friend, relative of a friend] with type 1 and who say it’s totally fine, not a big deal. To start with you’ll hope this is true. Then you may worry that you are inadequate because that’s not how you are finding it. Then you’ll find yourself telling people that “it’s totally fine, not a big deal” whilst knowing that this isn’t true (right now anyway) but it’s easier to say that than to actually unpack how you feel. And you’ll then realise this is how the stories of the friends of friends etc got made. (And maybe one day you’ll be telling people it’s fine and not a big deal because that’s how it feels – and I v much hope that this turns out to be the case. But don’t expect it for a while.)
2. You’ll also come across a bunch people who don’t know very much but who want to give you somewhat random advice, usually vaguely relevant to type 2 (and sometimes just wrong…sometimes also right!). Your irritation with these will grow. One day you’ll likely learn to smile and move the conversation on. (The managing to smile and move the conversation on hasn’t yet happened for me but I live in hopes of becoming a better person.)
3. Using a finger prick test will feel impossible the first few times you do it. And giving yourself an injection may feel terrifying (I kept doing it with my eyes shut because it felt so traumatic for the first day or so). Within days you’ll likely find it’s so easy you can do it without a blink and wonder why you were so incompetent. You weren’t incompetent. It was just new and you were a bit scared.
4. You may find yourself thinking idly about how much you are looking forward to diabetes “being over”. This won’t be a well-formed thought but is just habit from being used to illnesses having a finish date. Every time it dawns on you that it’s never going to be “over” will be hard. Expect to be unhappy / grumpy / depressed. It’s a crappy thing and so of course you should feel that.
5. At the beginning you might think: “on the plus side, I always liked jelly babies”. This enthusiasm will pass quite quickly as hypos become a regular ish part of your life. There are other options and a bit of variety is a bit helpful but still… Watch out that M&S jelly babies have less sugar in and so you’ll need to eat more. Carry far more of everything than you think you might need (I once went on a hike with just four jelly babies as I thought that was the “dose” and it was very challenging when that was used up v quickly). And of course if you choose all the “nice” jelly babies when you open the packet you’ll find the hypos for the second half of the packet are even less pleasant (so resist the urge to pick the yellow ones out first).
6. Check your blood glucose numbers before bed. If you are below 8, you might want to have something to eat. Toast or digestives are what I’m currently settling on. You won’t see any immediate impact but that’s how it is supposed to be (I know this sounds obvious but I remember when it wasn’t). If it is below 5, I’ll nudge it up with some jelly babies too. You may find yourself over-dosing pre-bed and then soaring during the night and it’s easy to feel bad about this. Try not to.
7. Exercise is a peculiar one and is seemingly different for everyone. A spin class in the morning before breakfast does wonders to keep me at a nice level all day but then means that on days when my routine is out, then I struggle to stay at an even keel. Normal walking is disconcertingly hard (because it always makes me drop), and some longer-acting carbs beforehand (without injecting) have worked well for me – when I remember, though perhaps unsurprisingly I often still don’t. On the plus side, this is a great way to bring down your BG if you are too high and don’t want to go for a correction dose of insulin. Gentle yoga is the worst for making me drop my BG numbers fast. I’m still musing on how to manage this.
8. Alcohol is complicated and I’m glad I cut it out completely for the first month. Lots of people (some of those mentioned in 2 above) will tell you it’s fine and all balances out. That may be the case for some people, but it hasn’t been for me. The three keys to success have been (1) limited quantity (2) with food (even if only an oat bar or some such) (3) only wine or a spirit and (4) not immediately before bed.
9. Sometime or other you’ll be given a “real” coke when you asked for a diet one, and you’ll drink it without realising and then have a melt down when you see your BG soaring. I am not sure I have anything consoling to say about this other than you should expect this to happen (it’s happened to me three times already even though I could not be clearer when I order about the importance of it being diet) and it’s not the end of the world – try and work out how much you had and then inject.
10. You may find yourself susceptible to more infections that you’d normally get and that when you have them they’ll be harder to fight off than they’d usually be. I’ve had three chest infections and an eye infection since being diagnosed and they’ve all been quite bad. Several doctors have told me that this is something to just expect, but it’s weird because I can’t really find any confirmation of this online. I plan to get private Covid and flu vaccines…
11. When I was first diagnosed I was trying to find some positives, and mused that this was likely the moment for me to become healthier including thinner. I then found a bunch of stuff online which suggested this wasn’t the case and it felt like my last silver lining was being taken away. The reality is – as one of you said – that it’s just more of a phaff to eat than it was, and though I end up eating more food for hypos than I would like (and in not an enjoyable fashion), I am pretty confident that I’ll end 2024 a much better weight for me than I’ve been most of my life. Also on the plus side, having counted calories / been on WeightWatchers for a significant amount of time turns out to have been perfect training for carb counting. I find – even in what are comparatively early days – that I find it pretty easy to accurately guess the carb content of something (obviously I’ve tempted fate by saying this).
12. And finally, the mental health toll is not to be under-estimated and some support is a good idea.
1. You’ll be inundated with people who know someone [usually friend of a friend, relative of a friend] with type 1 and who say it’s totally fine, not a big deal. To start with you’ll hope this is true. Then you may worry that you are inadequate because that’s not how you are finding it. Then you’ll find yourself telling people that “it’s totally fine, not a big deal” whilst knowing that this isn’t true (right now anyway) but it’s easier to say that than to actually unpack how you feel. And you’ll then realise this is how the stories of the friends of friends etc got made. (And maybe one day you’ll be telling people it’s fine and not a big deal because that’s how it feels – and I v much hope that this turns out to be the case. But don’t expect it for a while.)
2. You’ll also come across a bunch people who don’t know very much but who want to give you somewhat random advice, usually vaguely relevant to type 2 (and sometimes just wrong…sometimes also right!). Your irritation with these will grow. One day you’ll likely learn to smile and move the conversation on. (The managing to smile and move the conversation on hasn’t yet happened for me but I live in hopes of becoming a better person.)
3. Using a finger prick test will feel impossible the first few times you do it. And giving yourself an injection may feel terrifying (I kept doing it with my eyes shut because it felt so traumatic for the first day or so). Within days you’ll likely find it’s so easy you can do it without a blink and wonder why you were so incompetent. You weren’t incompetent. It was just new and you were a bit scared.
4. You may find yourself thinking idly about how much you are looking forward to diabetes “being over”. This won’t be a well-formed thought but is just habit from being used to illnesses having a finish date. Every time it dawns on you that it’s never going to be “over” will be hard. Expect to be unhappy / grumpy / depressed. It’s a crappy thing and so of course you should feel that.
5. At the beginning you might think: “on the plus side, I always liked jelly babies”. This enthusiasm will pass quite quickly as hypos become a regular ish part of your life. There are other options and a bit of variety is a bit helpful but still… Watch out that M&S jelly babies have less sugar in and so you’ll need to eat more. Carry far more of everything than you think you might need (I once went on a hike with just four jelly babies as I thought that was the “dose” and it was very challenging when that was used up v quickly). And of course if you choose all the “nice” jelly babies when you open the packet you’ll find the hypos for the second half of the packet are even less pleasant (so resist the urge to pick the yellow ones out first).
6. Check your blood glucose numbers before bed. If you are below 8, you might want to have something to eat. Toast or digestives are what I’m currently settling on. You won’t see any immediate impact but that’s how it is supposed to be (I know this sounds obvious but I remember when it wasn’t). If it is below 5, I’ll nudge it up with some jelly babies too. You may find yourself over-dosing pre-bed and then soaring during the night and it’s easy to feel bad about this. Try not to.
7. Exercise is a peculiar one and is seemingly different for everyone. A spin class in the morning before breakfast does wonders to keep me at a nice level all day but then means that on days when my routine is out, then I struggle to stay at an even keel. Normal walking is disconcertingly hard (because it always makes me drop), and some longer-acting carbs beforehand (without injecting) have worked well for me – when I remember, though perhaps unsurprisingly I often still don’t. On the plus side, this is a great way to bring down your BG if you are too high and don’t want to go for a correction dose of insulin. Gentle yoga is the worst for making me drop my BG numbers fast. I’m still musing on how to manage this.
8. Alcohol is complicated and I’m glad I cut it out completely for the first month. Lots of people (some of those mentioned in 2 above) will tell you it’s fine and all balances out. That may be the case for some people, but it hasn’t been for me. The three keys to success have been (1) limited quantity (2) with food (even if only an oat bar or some such) (3) only wine or a spirit and (4) not immediately before bed.
9. Sometime or other you’ll be given a “real” coke when you asked for a diet one, and you’ll drink it without realising and then have a melt down when you see your BG soaring. I am not sure I have anything consoling to say about this other than you should expect this to happen (it’s happened to me three times already even though I could not be clearer when I order about the importance of it being diet) and it’s not the end of the world – try and work out how much you had and then inject.
10. You may find yourself susceptible to more infections that you’d normally get and that when you have them they’ll be harder to fight off than they’d usually be. I’ve had three chest infections and an eye infection since being diagnosed and they’ve all been quite bad. Several doctors have told me that this is something to just expect, but it’s weird because I can’t really find any confirmation of this online. I plan to get private Covid and flu vaccines…
11. When I was first diagnosed I was trying to find some positives, and mused that this was likely the moment for me to become healthier including thinner. I then found a bunch of stuff online which suggested this wasn’t the case and it felt like my last silver lining was being taken away. The reality is – as one of you said – that it’s just more of a phaff to eat than it was, and though I end up eating more food for hypos than I would like (and in not an enjoyable fashion), I am pretty confident that I’ll end 2024 a much better weight for me than I’ve been most of my life. Also on the plus side, having counted calories / been on WeightWatchers for a significant amount of time turns out to have been perfect training for carb counting. I find – even in what are comparatively early days – that I find it pretty easy to accurately guess the carb content of something (obviously I’ve tempted fate by saying this).
12. And finally, the mental health toll is not to be under-estimated and some support is a good idea.
). I find it's sometimes quite hard to know what a Diet Coke will taste like when it comes from a pump made with syrup, and because I almost never drink full-fat Coke I have nothing to compare it against.
