Newbie

[Ladyk]

Hi I’m another newbie. Was diagnosed last year as T1 as result of another rare condition. Being blunt: I’m struggling. Have 110% support of hubbie but feel everything he teaches me is always changing. I feel lost, and stupid for not grasping this condition.

 

[rebrascora]

Hi and welcome. You have come to the right place for help and support. It is great that your other half is behind you all the way.

I am another late starter with Type1 and like you, I was diagnosed last year. The advice and support from the experienced members of this forum has been second to none in getting to grips with this condition and managing it well.

It is a big learning curve in the beginning and there is a lot of conflicting information out there both from official sources and the internet in general so it is not surprising that your husband's advice has been changing. That happened to me too when I thought I had things figured out and then it turned out I hadn't quite understood. It can also be confusing between Type 1 and Type 2 diabetes advice as that can be significantly different. The members here live with diabetes day to day and therefore understand it better than many of the health care professionals, so I tend to rely more on the advice I get here, although that can still be conflicting as we are all individuals with different tastes and our bodies respond slightly differently and as I said, some are Type 1 and some are Type 2 so their strategies for managing their diabetes can vary.

Which insulins are you on and have you had any courses like carb counting or DAFNE (Dose Adjustment for Normal Eating)? Are you on multiple daily injections or an insulin pump? Do you have Freestyle Libre which is the sensor that goes on your arm and saves you having to finger prick so often?

Look forward to hearing more about you and if you have any questions feel free to fire away with them.

 

[Ladyk]

Blimey, being new to a forum I was unaware how quickly and friendly people respond. As you would have gathered I’m just going to write T1 (for Type 1). I’m on Levemir and yep do have 1 of those handy Libres. I won’t bore you with the finer details but I got diagnosed a week before leaving a rehab unit (been there 4 weeks) as had to learn to walk again due to a rare condition (SPS) for which I was in hospital for for 3 months. If that not enough also have epilepsy. I’ve had to fight /recover from these 2 conditions so to be what I feel bluntly told you have diabetes wasn’t great. Hubbie is fantastic but he has been exposed to Diabetes for a while As in family. My issue is that he can read the Libre graph at a click of a finger and chop and change recommended doses. I haven’t got a bloody clue: if it is too high you take insulin, if too low you need sugar. That’s about as far as I feel my medical support has gone. Everytime I feel I have got the grasp of something (I try & keep a diary), conflicting info is told to me. Example: told (medically) Levimer kicks in within about 15-20mins, not with me - try 30-40mins. Was told look at “sugar line” in food, when it should be the “carb” line. Does it make sense that I feel lost and “alone”? This morning I looked at carbs in cereal and using notes worked out should have 2.5 units - nope just 1! I haven’t got a clue!!!

 

[rebrascora]

Hi. Sorry to hear about all your illnesses. That sounds really serious! I hope you are making good progress with your mobility now.

Diabetes can be very confusing and an awful lot to take in.

Levemir is what is known as a basal insulin. It is long acting and actually takes about an hour to get going and each injection lasts for about 18hours. It is usually recommended to be injected morning and evening as a split dose. Is this how you use it or do you just inject it once a day? It is injected to cover the glucose produced by your liver to keep your vital organs going in between meals and overnight. The liver is kind of like the back up battery to keep your heart and brain and lungs etc working when the main fuel (food in the form of carbohydrates) is not available.
Carbohydrates from food tend to break down in a matter of an hour or two and flood the blood with glucose and you are usually prescribed a "fast" acting insulin like NovoRapid to cope deal with that. It is referred to as a bolus insulin. Do you have a quick acting "bolus" insulin like NovoRapid as well as the "basal" insulin Levemir? NovoRapid is an orange pen and the Levemir is green if that makes it easier to figure out but there are other bolus insulins which are probably in other coloured pens.

 

[Ladyk]

Hi. Sorry to hear about all your illnesses. That sounds really serious! I hope you are making good progress with your mobility now.

Diabetes can be very confusing and an awful lot to take in.

Levemir is what is known as a basal insulin. It is long acting and actually takes about an hour to get going and each injection lasts for about 18hours. It is usually recommended to be injected morning and evening as a split dose. Is this how you use it or do you just inject it once a day? It is injected to cover the glucose produced by your liver to keep your vital organs going in between meals and overnight. The liver is kind of like the back up battery to keep your heart and brain and lungs etc working when the main fuel (food in the form of carbohydrates) is not available.
Carbohydrates from food tend to break down in a matter of an hour or two and flood the blood with glucose and you are usually prescribed a "fast" acting insulin like NovoRapid to cope deal with that. It is referred to as a bolus insulin. Do you have a quick acting "bolus" insulin like NovoRapid as well as the "basal" insulin Levemir? NovoRapid is an orange pen and the Levemir is green if that makes it easier to figure out but there are other bolus insulins which are probably in other coloured pens.

RC

Hi. Sorry to hear about all your illnesses. That sounds really serious! I hope you are making good progress with your mobility now.

Diabetes can be very confusing and an awful lot to take in.

Levemir is what is known as a basal insulin. It is long acting and actually takes about an hour to get going and each injection lasts for about 18hours. It is usually recommended to be injected morning and evening as a split dose. Is this how you use it or do you just inject it once a day? It is injected to cover the glucose produced by your liver to keep your vital organs going in between meals and overnight. The liver is kind of like the back up battery to keep your heart and brain and lungs etc working when the main fuel (food in the form of carbohydrates) is not available.
Carbohydrates from food tend to break down in a matter of an hour or two and flood the blood with glucose and you are usually prescribed a "fast" acting insulin like NovoRapid to cope deal with that. It is referred to as a bolus insulin. Do you have a quick acting "bolus" insulin like NovoRapid as well as the "basal" insulin Levemir? NovoRapid is an orange pen and the Levemir is green if that makes it easier to figure out but there are other bolus insulins which are probably in other coloured pens.

Thats a lot more info than I’ve ever been given. All I’ve ever been told is that the Levimer is my “base” / never been told why that name but is the “slow release” one. I have it as 1 dose. I slso have Novarapid - I did have the orange pen but we (well, more hubbie than me) discovered 1 unit extra could be too much and 1 unit less too little. By chance we had a meeting with a particular diabetes nurse who said they do do 1/2 unit pens, so rather than the orange one (originally was) am now on a blue pen. It’s great because sometimes I only need 1/2 unit. Apparently I need pitiful amounts - think at most I’ve only had 3 Levimer and 2 Novarapid.

thank you for asking - my recovery has gone well. I can walk fine now - occasionally need a stick if tough terrain. I never imagined I would miss the school walk so much - even on rainy days

 

[Bruce Stephens]

Thats a lot more info than I’ve ever been given. All I’ve ever been told is that the Levimer is my “base” / never been told why that name but is the “slow release” one. I have it as 1 dose.

I think most of us take two doses (about 12 hours apart). Levemir's slow acting, but isn't really 24 hours long.

There are education courses (DAFNE's the best known but different CCGs may offer their own variant with a different name). There's also https://www.bertieonline.org.uk and https://mytype1diabetes.nhs.uk.

Handling this is hard (especially for women) but it's learnable.

 

[Bruce Stephens]

(especially for women)

That could easily be misinterpreted, but I didn't mean it that way...😉

 

[rebrascora]

That could easily be misinterpreted, but I didn't mean it that way...😉

My hackles were just rising Bruce 😉 .... when you sort of recovered yourself.... although I'm not sure in what way you could mean it other than the way I interpreted it.... The important thing is that no offence was meant rather than that women are less capable of understanding science and maths!!

In case you can't read it in the tone of my text, this is tongue in cheek!

 

[rebrascora]

@Ladyk

Good to hear that you are now doing so well with your walking. It is great exercise for us diabetics and I imagine all the more appreciated after not being able to do so due to ill health.

Interesting that you need such low doses and it makes sense that they would not split your dose of Levemir when you need so little. Great that you have a half unit pen. They are really handy even for the likes of me who needs quite a bit more insulin. I have them for both my NovoRapid and my Levemir.
I did wonder about your doses when you said that you only needed one for breakfast cereal as it is very carbohydrate rich and most people would need at least 3 or 4 for a normal size portion..... Out of curiosity, are you very petite.... if you don't mind me asking?.... please don't feel obliged to answer if you don't want to.... just wondering if that ties in with needing so little insulin.

 

[Bruce Stephens]

although I'm not sure in what way you could mean it other than the way I interpreted it

Diabetes is apparently harder to manage in women (regardless of who's doing the managing). (About twice as many women as men have pumps, for example, and that's apparently not particularly because women care more about their health and ask for them or anything, it's just that women more often qualify for a pump.)

 

[Bruce Stephens]

Interesting that you need such low doses and it makes sense that they would not split your dose of Levemir when you need so little.

That's true. Not much point in splitting 3 units.

 

[rebrascora]

Diabetes is apparently harder to manage in women (regardless of who's doing the managing). (About twice as many women as men have pumps, for example, and that's apparently not particularly because women care more about their health and ask for them or anything, it's just that women more often qualify for a pump.)

Ah, I didn't know that about more women qualifying for pumps but I guess it makes it easier managing hormonal cycles etc Thankfully not an issue for me. Not having had to manage diabetes through that phase of my life, I forget how much it will impact other Type 1 women who are diagnosed younger.

 

[Ladyk]

@Ladyk

Good to hear that you are now doing so well with your walking. It is great exercise for us diabetics and I imagine all the more appreciated after not being able to do so due to ill health.

Interesting that you need such low doses and it makes sense that they would not split your dose of Levemir when you need so little. Great that you have a half unit pen. They are really handy even for the likes of me who needs quite a bit more insulin. I have them for both my NovoRapid and my Levemir.
I did wonder about your doses when you said that you only needed one for breakfast cereal as it is very carbohydrate rich and most people would need at least 3 or 4 for a normal size portion..... Out of curiosity, are you very petite.... if you don't mind me asking?.... please don't feel obliged to answer if you don't want to.... just wondering if that ties in with needing so little insulin.

Yep, your intuition is correct - I’m only 5’3.

 

[rebrascora]

Is there anything particular you are struggling with? Is it figuring out your insulin doses?

 

[Ladyk]

Is there anything particular you are struggling with? Is it figuring out your insulin doses?

It’s the doses that i’m struggling with.

It’s as if my body hasn’t yet settled down into diabetes and one day can be simple and the other not. I’m also at the “early naive” stage where you think you HAVE to avoid sugar and carbs, rather than just carefully monitor and adjust doses accordingly. Logic dictates it will come in time and become 2nd nature but that “in time” seems a long way away. And that ultimately is the cause of why I get so upset etc etc

 

[rebrascora]

It sounds like you might still be in the honeymoon phase where your pancreas is still producing insulin but perhaps in dribs and drabs and with you needing so little insulin that is certainly likely but it does make things quite unpredictable so don't be hard on yourself.
Your husband obviously has a head start on you with his family experience of diabetes and you have had to deal with so many other health issues that your system is probably overwhelmed. Having to learn to walk again is a huge step for your brain to cope with, without a masters degree course in Diabetics thrown on top of that at short notice so cut yourself some slack... you will get there and if you are anything like me, this forum will be a big part of that learning process.

Do you feel reasonably confident assessing the amount of carbs in a meal and do you know your carb to insulin ratios for each meal? Some people have the same ratio for every meal but some people find that they are not so responsive to insulin on a morning and need a higher ratio then but others need more later in the day. The goal posts with diabetes are 3 dimensional and constantly moving, so hitting the back of the net is a skilled art form, that only comes with practice and never perfection.
Your reading when you inject is another relevant factor to take into consideration when you calculate your insulin. If you are too high or too low to start with then you need to take that into consideration and add or subtract insulin accordingly. There are also correction ratios to consider so it's not as simple as thinking I am too high so I will add one unit. You need to know how much one unit of insulin will bring your levels down and how much 10g carbs will increase your levels.

To top it off, if your Levemir dose isn't correct, it will not hold you steady, so trying to get the NR dose correct is even more difficult.

Timing of your NovoRapid (referred to as NR from now on) is also quite important. For instance I need to inject as much as an hour before I eat breakfast in order to prevent my BG levels going skyward and then coming crashing down later when the insulin gets going but other people might only need 10 mins. For lunch and dinner I only need to inject 20mins before eating, so there are lots of variables.

As I said, it is the equivalent of doing a masters degree in a very short space of time, so don't worry about getting it wrong sometimes.... nobody here is perfect in their management but you do get better the more experience you have and sometimes the best way to learn is to make mistakes.
.

 

[Ladyk]

It sounds like you might still be in the honeymoon phase where your pancreas is still producing insulin but perhaps in dribs and drabs and with you needing so little insulin that is certainly likely but it does make things quite unpredictable so don't be hard on yourself.
Your husband obviously has a head start on you with his family experience of diabetes and you have had to deal with so many other health issues that your system is probably overwhelmed. Having to learn to walk again is a huge step for your brain to cope with, without a masters degree course in Diabetics thrown on top of that at short notice so cut yourself some slack... you will get there and if you are anything like me, this forum will be a big part of that learning process.

Do you feel reasonably confident assessing the amount of carbs in a meal and do you know your carb to insulin ratios for each meal? Some people have the same ratio for every meal but some people find that they are not so responsive to insulin on a morning and need a higher ratio then but others need more later in the day. The goal posts with diabetes are 3 dimensional and constantly moving, so hitting the back of the net is a skilled art form, that only comes with practice and never perfection.
Your reading when you inject is another relevant factor to take into consideration when you calculate your insulin. If you are too high or too low to start with then you need to take that into consideration and add or subtract insulin accordingly. There are also correction ratios to consider so it's not as simple as thinking I am too high so I will add one unit. You need to know how much one unit of insulin will bring your levels down and how much 10g carbs will increase your levels.

To top it off, if your Levemir dose isn't correct, it will not hold you steady, so trying to get the NR dose correct is even more difficult.

Timing of your NovoRapid (referred to as NR from now on) is also quite important. For instance I need to inject as much as an hour before I eat breakfast in order to prevent my BG levels going skyward and then coming crashing down later when the insulin gets going but other people might only need 10 mins. For lunch and dinner I only need to inject 20mins before eating, so there are lots of variables.

As I said, it is the equivalent of doing a masters degree in a very short space of time, so don't worry about getting it wrong sometimes.... nobody here is perfect in their management but you do get better the more experience you have and sometimes the best way to learn is to make mistakes.
.

Thank you already for your words of wisdom
And reassurance. My body is so unpredictable at the moment it’s beyond belief. To give you an example, I / we have worked out insulin timing versus breakfast, but in the evenings it can hit literally straight away to the point I have to have lemonade because it kicked in before my meal. There is no predictability whatsoever and then of course you add in hormones and get: where’s the Masters Degree. I have been naive in the sense that out of all my conditions. I thought diabetes would be the easy one! Hubbie does have a good understanding of diabetes but the unpredictability of my body is driving him crazy / frustrated the lot. At the moment, I think I need to get rid of the “lost / useless feeling” and then start the battle. Yes I was diagnosed about a year ago, but my focus was getting stronger and being able to walk, so diabetes was pushed aside. Wrongly or rightly. My mobility and epilepsy is fine, so this is my next battle. Trying to keep a sense of humour and lightheartedness in my low moments I just have to tell myself I must be the love of the NHS With all
My silments I only registered today, but having people I can talk to without fear of sounding like a stuck record / irritating who I am talking to and not upsetting myself has been great. Thank you.

 

[rebrascora]

One of the most important aspects of the forum is to let off steam with people who understand why you need to.

Diabetes is incredibly frustrating and we all have those low days when we feel like crying because nothing works or we want to eat a whole 200g bar of chocolate or two because that was what we used to do pre diagnosis when we needed comfort, but now that is no longer an option. I admit that I resort to a glass or two of wine or a rum and coke occasionally when I need a bit of release. It is not ideal but it helps me through those low times and I know how to correct my insulin for the alcohol, so I don't feel it is risky, but coming here on the forum and reading other peoples' stories and trying to help them with the little info I have gleaned so far, helps me too, so it is a win, win situation.

Not sure I would still have my sanity if it wasn't for this forum and certainly not nearly as good control of my diabetes. In fact it was members of this forum who spotted that I had been misdiagnosed and needed insulin.... you can imagine how that went down with my GP when I rang and suggested it 🙄 (he was not impressed) .... but 3 days later the DSN came to the surgery to show me how to inject insulin and 2 months later I eventually got tested for Type1.

 

[Ladyk]

I only got tested because diabetes is a by product of SPS. I was praying it would come back negative - but no such luck.
I feel My other experiences have made me a better and stronger person, but at the moment that strength isn’t there because I don’t understand (and I want a break!) You’ve got to laugh though when you go into a chemist and you don’t have to say your name or anything before your prescription is in their hand. If I am in the honeymoon period and my body doesn’t have a clue what it’s doing then I could well need this forum as a place to let off steam and seek reassurance, aswell as guidance / advice / support

 

[SB2015]

Diabetes is apparently harder to manage in women (regardless of who's doing the managing). (About twice as many women as men have pumps, for example, and that's apparently not particularly because women care more about their health and ask for them or anything, it's just that women more often qualify for a pump.)

Glad you recovered yourself.
I wonder whether it is the monthly changes in hormones that just makes things more difficult as they have such a big impact on levels.