personalised instructor

[pondita]

Hello all. I've been a LADA Type 1 since November 2020. I've taken the online courses, and studied studied. I've paid close attention to my diet. I've done all the research I can find to teach myself how to control my blood sugars. I've done all I can think to do on my own. But still, so often, I feel like I'm guessing how much insulin to give, how it relates to my exercise, etc. I've asked the professionals, and they tell me that it's a learning process, just trial and error. But too often, I feel like I'm working in the dark. I feel like there are key points that I'm missing to help me understand my own personal reaction to exercise, insulin, and diet. So I would like to hire someone to do some individualised tracking with me, to help me see better what I need to do for me personally. Does such a person like that exist? Suggestions, please. Thank you.

 

[Robin]

Hello all. I've been a LADA Type 1 since November 2020. I've taken the online courses, and studied studied. I've paid close attention to my diet. I've done all the research I can find to teach myself how to control my blood sugars. I've done all I can think to do on my own. But still, so often, I feel like I'm guessing how much insulin to give, how it relates to my exercise, etc. I've asked the professionals, and they tell me that it's a learning process, just trial and error. But too often, I feel like I'm working in the dark. I feel like there are key points that I'm missing to help me understand my own personal reaction to exercise, insulin, and diet. So I would like to hire someone to do some individualised tracking with me, to help me see better what I need to do for me personally. Does such a person like that exist? Suggestions, please. Thank you.

Have you looked at the runsweet website? I know a lot of our sporty members have recommended it in the past.

: Home

Boost your wellbeing and overall health with in Lower Shiplake Henley-on- Thames.

www.runsweet.com

 

[ColinUK]

There are certainly personal trainers with diabetes who specialise in "full package" training and look at the complete lifestyle of their client. It's likely to be something offered at the top end of the market though.
Whereabouts are you based?

 

[pondita]

Have you looked at the runsweet website? I know a lot of our sporty members have recommended it in the past.

: Home

Boost your wellbeing and overall health with in Lower Shiplake Henley-on- Thames.

www.runsweet.com

Thank you. Yes, I have looked at the runsweet website, but the forums I've found are older. I've been unable to find what I need.

 

[pondita]

There are certainly personal trainers with diabetes who specialise in "full package" training and look at the complete lifestyle of their client. It's likely to be something offered at the top end of the market though.
Whereabouts are you based?

Thank you, Colin. I'm not really interested in training, per se. I want to live the life I have now, but have a better understanding of how it all goes together. I think I need someone to look over my shoulder in a way, to help me understand why I react the way I react to food and exercise. PS, I live near Dover.

 

[grovesy]

I don't know if you have read the book titled Think like a Pancreas, or Type 1 Diabetes for Children, Adolescents, and Young People.

 

[pondita]

I don't know if you have read the book titled Think like a Pancreas, or Type 1 Diabetes for Children, Adolescents, and Young People.

I'll get it! Thank you.

 

[grovesy]

Although the second is titles for young people it is applicable to all ages.

 

[Flower]

Hi @pondita

Not what you're asking but do you use Abbotts Libre glucose sensors so you are able to get a picture of what's happening to your glucose levels around the clock, before, during and after exercise. Apologies if you are using Libre but if you're not that information gives you an excellent insight into what's working with insulin doses etc and where to focus your attention to improve control.

 

[pondita]

Hi @pondita

Not what you're asking but do you use Abbotts Libre glucose sensors so you are able to get a picture of what's happening to your glucose levels around the clock, before, during and after exercise. Apologies if you are using Libre but if you're not that information gives you an excellent insight into what's working with insulin doses etc and where to focus your attention to improve control.

Hi Flower. Yes, I have a Libre, and I can't imagine not having one! The trouble I'm having is when I don't react like I think I will, then I can't explain why it went wrong, so to correct it next time. So I feel like all I'm doing is making one educated guess right after the other. Educated, sort of, but still a guess. I'm the kind of learner who needs to see the whole picture, down to the pathophysiology.

 

[JJay]

Don't be so hard on yourself - when things go awry it's not necessarily down to anything you've done wrong.
Have a look at this:
42 factors that affect blood glucose

 

[pondita]

Don't be so hard on yourself - when things go awry it's not necessarily down to anything you've done wrong.
Have a look at this:
42 factors that affect blood glucose

Hi JJay. I actually read through the 42 factors within the first month after my diagnosis, and have referred back to it since. It's not that I'm being hard on myself. It's that I want to understand, and I don't feel like I'm there yet. It's almost like I can't see the forest for all the trees.

 

[JJay]

Hi JJay. I actually read through the 42 factors within the first month after my diagnosis, and have referred back to it since. It's not that I'm being hard on myself. It's that I want to understand, and I don't feel like I'm there yet. It's almost like I can't see the forest for all the trees.

Yes, there is such a thing as "too much information"! My point was rather that there are outside factors that you can't control and you can follow all the rules but diabetes will still throw you a curve ball now and then. Accept it's not your fault, shrug and move on.

 

[rebrascora]

If you were able to find such a person.... say a retired DSN... you could spend a small fortune and be no further forward. Even if they lived with you and watched everything you ate and every bit of exercise you did, and how long you slept, there are still things they can's see or account for. Stresses within the body, fluctuating hormones, emotional stress, infection brewing or being fought off, how well or poorly you slept, gut biome.. a whole host of stuff which all factors in and makes things unpredictable
Biological systems are messy. They don't follow x+y=z rules

I think one of the biggest things to learn with diabetes is that you will never have perfect control and never understand/explain what is going on quite a bit of the time. It is one of the reasons why it is so frustrating, particularly for people who like to be in control or are logical.

I think a lot of Diabetes clinicians are partly responsible for promoting unrealistic expectations and I think the Freestyle Libre with it's TIR concept, rather than a rigid range, is great for giving you a more realistic expectation of what can be achieved. ie it acknowledges that there will be times when you drop too low or too high and 70% in target (and a wider target than the previous 4-9) means you should be more accepting of the variability which is pretty well inevitable with diabetes.

I could understand if you wanted what my friend from my DAFNE course calls a "Diabetes Nanny" who will take over all the day to day planning and cooking of food and calculating boluses etc. to have a break from the grinding responsibilities of it all, like a "holiday" from diabetes, but I think what you are wanting is perfect knowledge and understanding of why things don't always go as you expect and my feeling would be that you are shooting for the moon.
I think that is what @JJay is trying to say. You need to accept that you can't get it right all the time or even understand why you don't get it right and nor can anyone else, even a DSN or consultant. By all means feel free to have a rant about why it doesn't make sense... we all do that occasionally, but you have to accept that sometimes it just doesn't and it is not necessarily a lack on knowledge on your part, it is just a messy biological system.
The person who is ultimately the expert on your diabetes is you. It takes time to build up that knowledge, through trial and adjustment but only you can do that because only you live with it every day (and night).

 

[everydayupsanddowns]

I’m not sure that anyone offers a service like that - though it’s a lovely idea! I also think it would be a bit of a big ask - for all the reasons @rebrascora suggests. So if anyone *is* offering it, I’d be a bit wary of handing over any cash because it might end up being all promise and no delivery.

I think it’s about managing your own expectations for your diabetes management, and realising that this is a lifelong learning project. You will come across new discoveries all the time, and constantly have to relearn old lessons because your diabetes will keep changing the rules, and behaving differently!

You are still at the very early stages of your diabetes career, and you should congratulate yourself for how much you have learned already, and how effectively you are performing much of the role of a major organ!

Over the years you may find you develop positive relationships with a consultant or DSN who could perform the role for you - I’ve certainly met with consultants (who I would have really liked to be my own!) who I can see would be very thoughtful and insightful in conversations about specifics of management, and what the latest research suggest.

You just have to hope you get a good one!

 

[pondita]

Hi all. I really appreciate your input! I'm kind of feeling like I'm not expressing myself well... LOL... so I thought I'd say that I am actually being kind to myself. I realise it's all a process which I'll learn over time. I do understand how I react to different things in life will affect my blood sugar and insulin needs.... my covid vaccine being one recent example! The problem I'm having is that when things don't go as I expect, I often don't know what to try next time. One example: I was having a Zoom chat with the community diabetes nurse, telling her about how my blood sugars are all over the place, even with the same food (leftovers). She first told me what everyone tells me, it's all trial and error. I told her what I'm saying now, but what should I try next? She thought a while, and asked me where I inject my insulin. I told her I give my shots in different locations (arms, thigh, abdomen) because I knew I'm supposed to rotate injection sites. She said to give my shots in my abdomen before meals, so I can have a consistent uptake. Viola! I hadn't thought of that, and having that injection site consistency has helped a lot. My concern is that I don't know options. I often don't know what else to try for my "trial and error". How can I learn what works for me unless I try different things to see if it works? And if I don't know different things to try, then how can I learn about what works for me? Make sense?

 

[rebrascora]

For that sort of information I found this forum hugely beneficial. Just reading lots of posts and learning from what other people said and trying those things to find what worked for me.

I was only advised to inject in my stomach when I was first started on insulin. I was told that other sites were possible but I wasn't encouraged to try them and as a result I was reluctant to experiment because my stomach was what I was told to use and rotate around my belly button. It was a comment on this site which encouraged me to try my thighs and now my buttocks. It is generally believed/accepted that the stomach is a faster absorption site than the others so best reserved for bolus insulin and other sites used for basal where slower absorption is less of a problem.
Just regularly visiting this site and reading other people's posts was where I got this information. Sometimes I would ask particular questions and often you get a whole array of answers and have to figure out which one suits you best, but it is the general increase in knowledge from reading other people's posts which has helped fill in so many of the gaps for me. Things that I wouldn't necessarily have thought to ask but that made sense when I read them.
Attending a DAFNE course was also extremely useful. Particularly spending 5 whole days with other Type 1 diabetics of varying experience as well as the educators and guest speakers was a real eye opener. It makes you realise how significantly differently diabetes affects individuals. We all had different issues from a lady who had had it for 50 years and was having regular and severe nocturnal hypos despite only using 2units of insulin and then high all day the next day, to a fit 76yr old newly diagnosed man who was having hypos after he had been out running to a newly diagnosed young woman in her mid 20s who was on a 1:8 ratio with her insulin and calculated every meal perfectly despite eating quite a lot of carbs and had never had a hypo since starting on insulin 6 months before and all her readings were spot on in range!... We were all jealous!!

Anyway, my suggestion would be to spend more time on the forum reading and asking questions and perhaps invest in a book or two. The Ragnar Hanas book Type 1 Diabetes in Children, Adolescents and Young Adults is often recommended as a great reference book and appropriate for any age despite the title and Think Like a Pancreas is another one which is often mentioned.
I have gained almost all my knowledge from daily visits to the forum and the sage advice from other member's experiences. I learn something new almost every day and some people who have 50 years in with diabetes say they still learn new stuff here too, so save yourself some time searching for that mystery "diabetes coach" and money paying them when you do, grab a cuppa and set yourself some time to have a browse of the forum. That would be my advice and enroll on any courses you can but I would highly recommend DAFNE.

 

[helli]

@pondita have you thought about having a "diabuddy".
Not someone who has all the qualifications and theory but someone else who is experiencing some of the same things as you that you can chat to rather than pay.
They may not have the answers but talking to them about what they have tried and their approach can give you ideas ... and vice versa.

I was a member of another diabetes forum. Over time, I realised it wasn't for me. Thankfully, five others, all with type 1, decided the same thing at about the same time. We have become friends and share experience.
We come from different walks of life, different ages, have different hobbies, had diabetes for different lengths of time but that all helps - someone mentions inconsistecies, someone else says they always inject in their belly, someone says they think they experience DP and someone else suggests they try a Libre to see if their blood sugars rise during the night.

I appreciate I am very lucky to have found this crowd. But maybe there are others on here or maybe someone who your DSN could introduce you to who could be your diabuddy.

 

[pondita]

For that sort of information I found this forum hugely beneficial. Just reading lots of posts and learning from what other people said and trying those things to find what worked for me.

I was only advised to inject in my stomach when I was first started on insulin. I was told that other sites were possible but I wasn't encouraged to try them and as a result I was reluctant to experiment because my stomach was what I was told to use and rotate around my belly button. It was a comment on this site which encouraged me to try my thighs and now my buttocks. It is generally believed/accepted that the stomach is a faster absorption site than the others so best reserved for bolus insulin and other sites used for basal where slower absorption is less of a problem.
Just regularly visiting this site and reading other people's posts was where I got this information. Sometimes I would ask particular questions and often you get a whole array of answers and have to figure out which one suits you best, but it is the general increase in knowledge from reading other people's posts which has helped fill in so many of the gaps for me. Things that I wouldn't necessarily have thought to ask but that made sense when I read them.
Attending a DAFNE course was also extremely useful. Particularly spending 5 whole days with other Type 1 diabetics of varying experience as well as the educators and guest speakers was a real eye opener. It makes you realise how significantly differently diabetes affects individuals. We all had different issues from a lady who had had it for 50 years and was having regular and severe nocturnal hypos despite only using 2units of insulin and then high all day the next day, to a fit 76yr old newly diagnosed man who was having hypos after he had been out running to a newly diagnosed young woman in her mid 20s who was on a 1:8 ratio with her insulin and calculated every meal perfectly despite eating quite a lot of carbs and had never had a hypo since starting on insulin 6 months before and all her readings were spot on in range!... We were all jealous!!

Anyway, my suggestion would be to spend more time on the forum reading and asking questions and perhaps invest in a book or two. The Ragnar Hanas book Type 1 Diabetes in Children, Adolescents and Young Adults is often recommended as a great reference book and appropriate for any age despite the title and Think Like a Pancreas is another one which is often mentioned.
I have gained almost all my knowledge from daily visits to the forum and the sage advice from other member's experiences. I learn something new almost every day and some people who have 50 years in with diabetes say they still learn new stuff here too, so save yourself some time searching for that mystery "diabetes coach" and money paying them when you do, grab a cuppa and set yourself some time to have a browse of the forum. That would be my advice and enroll on any courses you can but I would highly recommend DAFNE.

Hi Rebecca. I've been signed up for the DAFNE course, and wish I could take one. But they were cancelled with the pandemic started, and when I spoke with the dietician about it in January, she said they were still cancelled until further notice. They don't want to do them online because the sharing and hands on are so important in the class. She said they hope to catch up with the back log eventually. Sooooo.....

I will definitely begin to read this forum on a more regular basis; good idea. And I have already bought the book "Think Like a Pancreas". It just came in the mail yesterday and is right now sitting at my elbow. 🙂 Yes, I think a "general increase" in knowledge to help fill the gaps is what I think I'm needing.

 

[pondita]

@pondita have you thought about having a "diabuddy".
Not someone who has all the qualifications and theory but someone else who is experiencing some of the same things as you that you can chat to rather than pay.
They may not have the answers but talking to them about what they have tried and their approach can give you ideas ... and vice versa.

I was a member of another diabetes forum. Over time, I realised it wasn't for me. Thankfully, five others, all with type 1, decided the same thing at about the same time. We have become friends and share experience.
We come from different walks of life, different ages, have different hobbies, had diabetes for different lengths of time but that all helps - someone mentions inconsistecies, someone else says they always inject in their belly, someone says they think they experience DP and someone else suggests they try a Libre to see if their blood sugars rise during the night.

I appreciate I am very lucky to have found this crowd. But maybe there are others on here or maybe someone who your DSN could introduce you to who could be your diabuddy.

Hi Helli. Diabuddy? I hadn't heard of that, but can see where that would definitely be helpful. I'll ask my DSN next time I speak to her.