New Type 1 - Have no idea.

[Lizzy78]

Hi all.

So a couple of weeks ago I ended up in hospital with Diabetic Ketoacidosis and have been diagnosed with T1 Diabetes. To say I am shellshocked is an understatement.

So I now feel like I am basically starting my life from scratch again and trying to figure everything out. I am on levemir and novorapid.

Everything is just so overwhelming for me at the moment, and I guess I am just writing this for a little comfort and reassurance that I can live some sort of normal life with this. I have a wee 8 year old boy and I'm just fearful for my future. I am also an active person, and had only just started things like hillwalking and love sports. I am already a bit frustrated that when I am walking about the shops and stuff, my sugars seem to drop, and that's not even going a proper walk!

I have been lucky enough to be able to take a couple of weeks off work, and wondering should I get back now and try establish some sort of routine. Also does it take time for my body to feel normal again now that my sugars are coming down to a normal level, as they have obviously been running high for a while without me knowing.

Sorry if I'm randomly asking all these questions, my head is just full.

Any thoughts would be much appreciated.

Xx

 

[Bruce Stephens]

Also does it take time for my body to feel normal again now that my sugars are coming down to a normal level, as they have obviously been running high for a while without me knowing.

Sorry if I'm randomly asking all these questions, my head is just full.

There's a lot to learn (and a lot to keep track of). Yes, changes in blood glucose change how you're feeling, and it'll be a while until you feel normal again.

With any luck once it's all settled down again you'll feel better than you have for a while, though life will be more complex since we need to consciously maintain blood glucose levels. Presumably you'll have been referred to a hospital diabetes team, so expect to spend quite a bit of time at various appointments.

It's certainly possible to do things like hillwalking and sports; you should ask your healthcare team for advice.

Similarly, when you feel comfortable going back to work I can't imagine that would be a problem. Maybe take a day or two so you can consider whether there's anything likely to be an issue. (Seems sensible not to try to rush it.)

 

[Lizzy78]

Thank you for your reply.

I think that's the thing, I am consciously having to think about things that I just took for granted before, like eating and going for a walk. It just feels like every day is overwhelming at the moment.

 

[Bruce Stephens]

I think that's the thing, I am consciously having to think about things that I just took for granted before, like eating and going for a walk. It just feels like every day is overwhelming at the moment.

Obviously practice helps, and routine as you suggest. (I suspect we all carry around emergency food of some kind, since now and again we'll need it.)

After eating breakfast I test before setting off for work (I usually walk about 30 minutes to work), and similarly before walking home. And we all have to pay more attention to what we're eating. In the summer, I had to decrease insulin levels a little (hot weather tends to do that for me), and now it's getting colder that changes things a bit (I tend to walk a bit faster). (Using a Freestyle Libre has made a big difference to me: I can (and do) scan it several times during walks, and between dances when I'm out dancing. And at work, and whenever I wake up during the night.)

And holidays throw things out (since I have to eat slightly different things).

It becomes something you'll handle more easily, of course. It's always there, but I don't think it's prevented me from doing anything significant that I wanted to. Can't really stay overnight anywhere without a bit of preparation (I don't carry my Levemir around, or the various pills). (Once in a while my blood glucose is stubbornly low for what feels like far too long, and I just need to sit still and wait until it's back to normal.)

 

[Lizzy78]

That's good to know that it hasn't stopped you from doing anything that you've wanted to. I guess it's going to take me some time to adapt to this new way of life. I have a summer holiday booked next year and already I'm dreading it.

I'm going to have to try be positive though and hopefully become more confident through experience.

 

[Bruce Stephens]

I have a summer holiday booked next year and already I'm dreading it.

Please don't dread it! Presuming it's a regular holiday, it'll be fine. (If the plan is to walk across a desert carrying all your supplies, that might be a bit challenging.)

I'm sure the Diabetes UK website has general suggestions, and I'm sure your healthcare team can offer advice. And you can ask here.

 

[Northerner]

Hi all.

So a couple of weeks ago I ended up in hospital with Diabetic Ketoacidosis and have been diagnosed with T1 Diabetes. To say I am shellshocked is an understatement.

So I now feel like I am basically starting my life from scratch again and trying to figure everything out. I am on levemir and novorapid.

Everything is just so overwhelming for me at the moment, and I guess I am just writing this for a little comfort and reassurance that I can live some sort of normal life with this. I have a wee 8 year old boy and I'm just fearful for my future. I am also an active person, and had only just started things like hillwalking and love sports. I am already a bit frustrated that when I am walking about the shops and stuff, my sugars seem to drop, and that's not even going a proper walk!

I have been lucky enough to be able to take a couple of weeks off work, and wondering should I get back now and try establish some sort of routine. Also does it take time for my body to feel normal again now that my sugars are coming down to a normal level, as they have obviously been running high for a while without me knowing.

Sorry if I'm randomly asking all these questions, my head is just full.

Any thoughts would be much appreciated.

Xx

Hi Lizzy, welcome to the forum 🙂 Sorry to hear about your diagnosis, it really does come as quite a shock, doesn't it? I was 49 when diagnosed and due to run a marathon that week, but ended up in hospital with DKA instead. The good thing is that things get much better from that point on, when you are given insulin and can get thse blood sugars back under some semblance of control 🙂 There is a very steep learning curve, so your head will be spinning, but try to get the basics done and keep asking as many questions as come into your head, we will be happy to answer them 🙂

The first thing I would recommend is getting hold of a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - don't be put off by the title, it's suitable for all ages (as I said, I was pushing 50), and is a fully comprehensive reference to all aspects of living with Type 1. You can just browse it or go straight to and topic that you are unsure of 🙂 I would recommend getting the latest edition as things do change fairly rapidly.

As for sports, walking, playing with your little boy - all will be fine, so don't worry. I have run many half-marathons since diagnosis and really it's more a case of a bit of forward planning that I have to do now, rather than anything standing in my way. Try not to worry about getting everything sorted straight away - much will be down to experience as you learn how you react to different meals, activities, seasons etc. and as you say, your confidence will grow in time I am sure 🙂

Let us know if there is anything that is confusing or worrying you, and we will be happy to help 🙂

 

[Lizzy78]

Hi Northerner

Thanks for your kind words.

My head feels as if it's spinning with everything I am having to take in. Just didn't see it coming but I guess no-one knows what's round the corner. I will definitely have a look at that book, thanks for the recommendation. One thing I would like to ask is about walking. Before diagnosis I really enjoyed just getting my headphones on and going a walk for around an hour. What would be the best preparation for this. I know to take hypo stuff out with me, but should I eat something at a specific time before I plan to walk? Should my sugar level be at an ideal level and what is that? I have been a short walk and also been out Xmas shopping and the activity has dropped my sugar levels, so I'm wondering what I could do to keep them at safe levels?

I know it might seem trivial, but I like to be out and about and moving. I know it will be mostly trial and error but any advice would be appreciated.

 

[Lizzy78]

Please don't dread it! Presuming it's a regular holiday, it'll be fine. (If the plan is to walk across a desert carrying all your supplies, that might be a bit challenging.)

I'm sure the Diabetes UK website has general suggestions, and I'm sure your healthcare team can offer advice. And you can ask here.

Its a 2 week holiday in Orlando, we take our boy to the Parks, so it's pretty active and in very warm temperatures.

 

[KARNAK]

Hi Lizzy welcome to the forum 🙂. A little bit different at first but well controllable, children help keep you focused a reason to continue. DKA not nice been there but still here, read and learn as much as you can on this friendly and informative forum. As @Northerner says in his post 49 when diagnosed, I was diagnosed last year and was also 49, I`m 64 this year, guess what I failed at school? . Take care.

 

[Lizzy78]

Hi Lizzy welcome to the forum 🙂. A little bit different at first but well controllable, children help keep you focused a reason to continue. DKA not nice been there but still here, read and learn as much as you can on this friendly and informative forum. As @Northerner says in his post 49 when diagnosed, I was diagnosed last year and was also 49, I`m 64 this year, guess what I failed at school? . Take care.

Hi Karnak and thank you for the welcome.

It's amazing to read about so many people diagnosed around a similar age. It's good to know there is support here and it's nice to hear about people's positive stories. It gives me hope, which is all I'm really looking for in these early days.

 

[Bruce Stephens]

I have been a short walk and also been out Xmas shopping and the activity has dropped my sugar levels, so I'm wondering what I could do to keep them at safe levels?

Mostly trial and error, I'm afraid. But if you're below about 6, eat something before you start walking. And maybe try to plan a walk with a convenient cafe halfway through so you can test and (if needed) sit down and eat something. Then next time you'll have a better idea of what you might need. (I'm assuming you have the usual glucose meter and test strips.)

It might be easier after a meal, so a walk after lunch, say, where glucose levels would normally be going up a bit.

 

[Lizzy78]

Mostly trial and error, I'm afraid. But if you're below about 6, eat something before you start walking. And maybe try to plan a walk with a convenient cafe halfway through so you can test and (if needed) sit down and eat something. Then next time you'll have a better idea of what you might need. (I'm assuming you have the usual glucose meter and test strips.)

It might be easier after a meal, so a walk after lunch, say, where glucose levels would normally be going up a bit.

Thanks Bruce. If it's below 6, roughly when should I eat before walking? Would something like half a banana be ok to take? I will initially just be walking around my local area and not too far from home, and yes standard meter etc.

 

[SB2015]

Hi Northerner

Thanks for your kind words.

My head feels as if it's spinning with everything I am having to take in. Just didn't see it coming but I guess no-one knows what's round the corner. I will definitely have a look at that book, thanks for the recommendation. One thing I would like to ask is about walking. Before diagnosis I really enjoyed just getting my headphones on and going a walk for around an hour. What would be the best preparation for this. I know to take hypo stuff out with me, but should I eat something at a specific time before I plan to walk? Should my sugar level be at an ideal level and what is that? I have been a short walk and also been out Xmas shopping and the activity has dropped my sugar levels, so I'm wondering what I could do to keep them at safe levels?

I know it might seem trivial, but I like to be out and about and moving. I know it will be mostly trial and error but any advice would be appreciated.

Hi Lizzy. Welcome to the forum that no one wants to need to join.

I was another late starter, being diagnosed with T1 at 53. As you say there is a lot to learn very quickly, but it really does get easier. Someone likened to learning to drive a car. It seemed like a lot to manage at first, but it becomes automatic, although you are on the watch for the unexpected.

The book by Ragnar Hanas that Northerner recommended is excellent, and 10 years in I still find it useful. It is clearly explained and I find it a good reference as it is well indexed.

With regard to walking, I make sure I take my hypo stuff (JElly Babies for me) as well as very diluted juice, which I can use to top up my glucose where the walking becomes more strenuous. It is as, @KARNAK says, a bit of trial and error but just stop and test if you are in any doubt.

When you return to work, it would be good to make sure that you talk to your line manager about how you will manage hypos. In the early stages these can be a bit more unpredictable, especially as you learn how your body manages specific food. I found it very useful to keena record of what I ate, alongside BG readings and what I was diong. I was surprised hw much impact different activities had on my BG.

Most importantly just keep in touch and ask any questions that you have. No question is considered silly on here, and there is plenty of hel and Support available on here.

 

[Bruce Stephens]

Thanks Bruce. If it's below 6, roughly when should I eat before walking? Would something like half a banana be ok to take? I will initially just be walking around my local area and not too far from home, and yes standard meter etc.

It's trial and error, sadly. 4.5 or below is (I think) technically hypo. So if you're below 5, have something to eat and wait 15 minutes. Above that you're probably OK (maybe have the half a banana and immediately go out). But really the details are individual. Also depends how fast you walk. Also when, relative to when you last injected a bolus and when you ate (and what). While you have good hypo awareness you're safe enough anyway: just eat something and pause for 15 minutes or so.

When you get the chance, it's worth talking about this kind of (arguably a bit daft) stuff with your DSN. Also the much less daft stuff like how to survive a two week holiday in Orlando.

 

[Lizzy78]

Hi Lizzy. Welcome to the forum that no one wants to need to join.

I was another late starter, being diagnosed with T1 at 53. As you say there is a lot to learn very quickly, but it really does get easier. Someone likened to learning to drive a car. It seemed like a lot to manage at first, but it becomes automatic, although you are on the watch for the unexpected.

The book by Ragnar Hanas that Northerner recommended is excellent, and 10 years in I still find it useful. It is clearly explained and I find it a good reference as it is well indexed.

With regard to walking, I make sure I take my hypo stuff (JElly Babies for me) as well as very diluted juice, which I can use to top up my glucose where the walking becomes more strenuous. It is as, @KARNAK says, a bit of trial and error but just stop and test if you are in any doubt.

When you return to work, it would be good to make sure that you talk to your line manager about how you will manage hypos. In the early stages these can be a bit more unpredictable, especially as you learn how your body manages specific food. I found it very useful to keena record of what I ate, alongside BG readings and what I was diong. I was surprised hw much impact different activities had on my BG.

Most importantly just keep in touch and ask any questions that you have. No question is considered silly on here, and there is plenty of hel and Support available on here.

Hi SB2015 and thank you for the welcome.

Of course I would rather not be here but that's been taken out of my control.

I am definitely going to invest in the book, will order it tomorrow. It's good to hear that things will get a bit easier with time.

Jelly Babies are also going to be my choice of hypo treatment. I'm dreading the first one to be honest. If my sugar dropped under 4 while walking, how many jelly babies should I take?

My work will be reasonable with adjustments I reckon. I have been off for nearly 3 weeks now (hospital admission included) and feel nervous about going back to the hectic schedule of doing a school run before I even get to work..But I know I can't keep putting it off.

 

[Lizzy78]

It's trial and error, sadly. 4.5 or below is (I think) technically hypo. So if you're below 5, have something to eat and wait 15 minutes. Above that you're probably OK (maybe have the half a banana and immediately go out). But really the details are individual. Also depends how fast you walk. Also when, relative to when you last injected a bolus and when you ate (and what). While you have good hypo awareness you're safe enough anyway: just eat something and pause for 15 minutes or so.

When you get the chance, it's worth talking about this kind of (arguably a bit daft) stuff with your DSN. Also the much less daft stuff like how to survive a two week holiday in Orlando.

Thanks for all of that Bruce. I'm just going to have to give it a go and see how it all pans out. I see the dietician and DSN on Thursday again so no doubt I will be armed with loads more questions.

 

[Lizzy78]

Can I also ask how long it should take for my eyes to adjust back to normal again? They have been a bit blurry, particularly at night. The DSN said they should adjust back in time.

 

[Bruce Stephens]

Jelly Babies are also going to be my choice of hypo treatment. I'm dreading the first one to be honest. If my sugar dropped under 4 while walking, how many jelly babies should I take?

See https://www.diabetes.org.uk/guide-t...ing-my-glucose-right/hypos/hypos---what-to-do. The usual guideline is 15g of carbs and wait 15 minutes. Don't know what 15g of jelly babies is. 5 or 6, at a guess?

 

[Lizzy78]

Yeah I think I was told 5, just wanted to double check.