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Lacking motivation Hba1c 103

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philly1991

Well-Known Member
I've always struggled with accepting my condition ever since I was diagnosed and I've had some awful experiences with my medical team which have furthered these negativities. I thought I had conquered this in achieving a Hba1c of 44 but went off the rails again and my Hba1c is back up at 103.
My latest medical team have been really good and have seen me fortnightly to provide me the support I need to continue taking my insulin and discuss my negative feelings to try and overcome this and get back to where I was. However I realise that it is not realistic to see them ever two weeks in the long run. I have been put forward for DAFNE but this isn't until December so any support I can get would be greatly received.
Is there anybody else out there who lacks motivation, even with something so important? Or has anybody experienced it themselves before but overcome it?
Hope everyone is well!
 
Hello @philly1991 and welcome to the forum

A good starting point would be to do the Bertie course, free and online: https://www.bertieonline.org.uk/

A good book to buy is 'Think like a pancreas' written by a type 1.

One thing i've learned is that running high blood glucose levels practically fuels low mood, so too much glucose in your system slows down your thinking and makes you sluggish, hence why keeping good levels is good for body and mind, whenever i've swung high/low it's compounded my emotions, so keeping stable levels is really important, in regards to testing have you been offered the libre for testing ? It takes the pain out of testing and it's easy to spot patterns with your control, it's not as accurate as a blood glucose meter but used correctly and it's incredibly useful.

There's many here who have different experiences, it's good to have support in whatever form that takes, so please use the forum as much as you need
 
Thankyou for your advice and recommendations, I've definitely noticed a relationship between low mood and high blood glucose and feel so much better when I'm hitting my targets, physically and mentally, which is what makes it all the more frustrating when i try to ignore my condition and fall off course. Hopefully with the right support i can reach a healthy Hba1c and maintain this.
The libre was mentioned at my last appointment, however much of the time I don't have an issue with testing but anything that would make it easier to manage I would definitely be willing to try out.
 
Hey @philly1991. Sorry to hear about your struggles with your T1DM. We all go through burnout at some stage and I second what @Juicyj says about mood changes with high BGL's. I've been there recently. Since Christmas my motivation to control my T1DM has been very low to the point where I just wanted to throw away my pump and not have to even think about it. But, of course that is just silly, as we need insulin to survive. It's only been just recently that I've started to get a grip on reality and get motivated. My consultant have in the past also referred me to health psychology. This is a great service as it did make me behave more kindly towards myself. And, the support was tremendous!

The thing is, when out BGL's are steady, our bodies and minds are healthy too. I follow a LCHF lifestyle, which is great for BGL levels. I've recently started a blog about my diabetes journey...called Dear Dia-BULLY. This may give you a little motivation to keep going. It is hard, but what I've learnt over the years is that this condition will never leave us so we have to be kind to ourselves and take each day as it comes. I find it easier having a CGM sensor that I wear daily. It links to my Medtronic 640g so I can keep track of my BGL's 24/7. I only finger prick 3x per day now instead of the 7+ times I used to, although if I'm having a hypo or heading for one I do finger prick to check my levels and calibrate my pump.

Let us know how you get on. Take care and don't be too hard on yourself. This condition is hard enough without us beating ourselves up over it. x
 
Hi @philly1991 and welcome to the forum...
You had your HBA1C down to 44 once....no reason why you can't again
As you are aware with high HBA1Cs come added problems with T1D.
Take a look at my signature for my A1C's.... It can be done
Good on you for coming and trying to get some advice/info. Good advice off @Juicyj once again
 

I will definitely take a look at your blog and keep you all updated! I have my next a1c check in August which gives me something to aim for though I'm not sure what peoples thoughts are on living appointment to appointment? I guess at the minute that's my coping strategy, right or wrong.
 
Hi @philly1991, would you mind telling us what a typical day might be for you, including work and what you mean by going off the rails? Is it that you just eat what you want and wildly guesstimate your insulin or do you just ignore everything, become reckless with your insulin and hope for the best? It sort of helps us to try and help you, with some of it anyway. Sometimes I think (like many other people diabetic or not) we can just go into what we know is self destruction mode, like a dieter say who thinks I've had a cake so I might as well have 10!!!! I do feel for you, it's a horrible condition that's for sure and although well meaning people say 'you can do it, get over it, etc', sometimes it's not that easy and I reckon it's a question of trying to sort your mental state out first. x
 
Hi @philly1991 Part of my management is taking ownership for my condition and not relying on my team, there's a few reasons for this, firstly it's my body and only I know better than anyone else what works and what doesn't, I also have a bit of a control freak in me and cannot give the reigns to my control to someone else, also I decided after getting diagnosed that I wanted to become an expert so picked up anything I could read or learn about t1, so I knew as much as I could to make good decisions, also early days I got frustrated in waiting for a call back, it could take up to a week for someone to contact me back and I couldn't wait around getting down about something that needed changing.

I make all my decisions now, it means i'm fully accountable to myself, it also means I feel more in control and empowered, I get high days and fairly good days, they are all different but I can analyse them now to see what went wrong and how. It still makes me laugh that I can eat the same breakfast every day and some days i'll stay in range and other days i'll go high, but i've accepted that's how it is and I don't get down about it now.
 

Your a1c results are fascinating, very similar to my own though without the drastic relapses. Thankyou for your comments, I'm optimistic that I can get back to where I was.
 

Hi, basically I become very reckless and negligent and eat what I want without checking my blood glucose or taking any insulin and in general just attempt to forget/blantantly ignore my condition which I know is a terrible way of dealing with it.
I know there are so many people who will be appalled by this but I've spent too long being embarrassed about it and it's time to finally start admitting it and trying to get the help I need and working towards acceptance because the alternative is to carry on how I have been doing which isn't an option. I'm more proud of myself for admitting it to myself and others because that's the first stage in getting the help I need.

An average work day is 8-8, I work in care and the shifts can be heavy. I've got into some good habits since my last a1c check but this is only recent and I want to make sure old habits don't start to creep back in.
 
Hello Welcome!
I think it is safe to say we all have struggled. I was diagnosed at a time with old insulins so I was running incredibly high as a kid and I was in hospital for DKA from 2004-2007. Thats when they introduced me to levemir-novorapid which has been by far better. If i'm honest, DKA was horrible - the symptoms, everything. I wouldn't wish it on my worst enemy to go through DKA. But my family had to watch me go through it all, it was never easy on them and I would never put them through it again.
It's good that you can see your team fortnightly, you can make most use out of it by doing so. I guess for the time being is to identity the triggers and find someone who is around to listen or if you see your GP he or she can refer you to a therapist who is trained to help with patient's long term health condition and struggles. I want to strive for 48 without a mass amount of hypos averaging it out - that would be my dream. Our control will never be a prefect straight line but we can obtain a control without complications and have an odd high or low. You're not alone we are always here, just a click away.
 

I feel like that's definitely a more positive way of looking at it. Any recommendations you have as for reading materials would be greatly appreciated. I definitely feel that it's a case of the more knowledge I have the easier I will find it, and have probably done myself a great injustice of not educating myself sooner, but it's never too late to start.
 
Just thinking back to the time I was diagnosed with Hba1c of 91 and comparing it with how I feel now - no matter what hoops you have to jump through - it is more than worth it.
I am totally diet controlled, and type two - to get from there to here I'd eat frogspawn - luckily I don't need to, but that is how much difference it makes for me.
 

I am already starting to feel the benefits of better control, especially not having to wake in the night to go to the toilet all the time. But it's only early days and i fear a relapse because I give it my all and reach burnout so quickly. Definitely need the support to stay on track and get to where I want to be.
I'm so glad it's working out for you and you're in a good place.
 
Perhaps you are being too frantic?
Can you be a bit more meditative? Make your mealtimes calm and composed. Have the testing kit and insulin where you can sit down and relax for a few moments, never be too busy or too rushed to look after your needs, always have it in mind that the time you are taking to manage well is far shorter than the time you'd spend feeling 'off' if you fail to keep everything in balance.
I should write the Zen guide to Diabetes.
 

In an ideal world but often it's a rush, particularly at work where I don't have set breaks as such and it can be hard to schedule mealtimes when I have a service user waiting to go out on an activity so don't always manage to test. Working progress though, have a lot to learn.
 
Get the ‘think like a pancreas’ book @philly1991 - it’s good reading for t1’s.

Keep coming back to the forum though, lots come here for one off advice and then disappear, if you star in touch with folk here it will help keep you focused on looking after yourself.

@Resurgam gave good advice about meal times, take time to manage your diabetes and it will help you stay in track, so make sure you inject when you eat and remember life does get a lot easier if you've got your diabetes under control
 

It's the first time I've joined, I've read a few posts previously and everyone here seems very approachable and supportive and also knowledgeable. I figure if anybody can help it'd be the diabetic community because you have the experience and can relate to my experiences.
 
Hi @philly1991
Just to add take some time and get your head around things step by step. Commit to testing first, a few seconds before entering the home of a user. Then work on injecting the right amount. Then look at things like timings.
We are aiming for long and happy lives - so fingers crossed we have some time to breathe, think and figure things out rather than rush to perfection. I’m betting that your team will welcome any lowering of the numbers.
You can do this, telling us about it has been the first step.
 

Thankyou for your advice, it's definitely a step by step process. Everything feels quite overwhelming at the minute so it helps to break it down. Had some great results over the past few days which have given me a greatbconfidence boost, hoping my next a1c results reflect this.
 
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