ADHD/Neurodivergent and diabetes management

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CookieCat1

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Insulin
Hi,

I am neurodivergent and as a result really struggle to manage my diabetes. I regularly forget injections or to test my blood sugar when I’m hyperfixated, I set alarms and even if they go off I don’t notice if I’m working or doing other activities, or if I do notice I can’t always stop doing what I’m doing to test or give myself insulin.

I have asked many times to have a review on my glucose sensor to one that regularly takes readings for me so if I forget to scan, it is doing it for me already. I also struggle to do 4x injections a day due to sensory issues and a couple of other reasons, and my team just don’t understand this and think I am being stubborn or non compliant. My health is really suffering because I struggle to manage the combination of the conditions and I’m getting really frustrated with my doctors as they don’t seem to understand why I struggle and refuse to make reasonable adjustments to accommodate my difficulties.

I’m not sure what to do, I feel so unheard. Does anyone else have experience of this, and advice on what I can do?

Thank you
 
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Pipp

Pipp

Moderator
Staff Member
Messages
10,668
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hi, and welcome @CookieCat1

Do you live alone, or do you have someone around who can assist and / or advocate for you?
Do you take any other medication for your ADHD/ Neurodivergent condition?
Sorry to ask questions rather than provide answers, just trying to see a bigger picture.

Only thing I would suggest at the moment is that you seek help from your hospital PALS team. They are there to assist patients in all sorts of ways And could liaise with your medical diabetes team to help find a solution for you. You expressed yourself very well in your post here, so you could show them that.
 
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VashtiB

VashtiB

Moderator
Staff Member
Messages
2,287
Type of diabetes
Treatment type
Diet only
Hello and welcome @CookieCat1

As a parent of 3 neurodivergent kids and also a husband I very much sympathise. It can be very hard for those who are neurotypical to underestimate the extra challenges faced by those who are neurodivergent.

I don't have any real suggestions unfortunately. My three kids all have such different challenges that one size definitely does not fit all. I'm also not in the UK so don't know what facilities you have. My daughter regularly seeks a psych. If you also do they may be able to suggest some routines or ideas that may help.

I hope you are able to find some help-life is tough enough without extra challenges.

Good luck and welcome
 
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mentat

mentat

Well-Known Member
Messages
419
Type of diabetes
Type 1
Treatment type
Pump
Get someone to help you advocate for yourself, or change diabetes teams. There are plenty of things available that could help you (I think looping could be a game-changer for you) but your team does not seem interested in helping you find what works for you.

I also struggle with letting diabetes slide when I'm hyperfixated. Feel free to PM me if you'd like to chat.
 
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NikkiT1D

Member
Messages
5
Type of diabetes
Parent
Treatment type
I do not have diabetes
mentat said:
Get someone to help you advocate for yourself, or change diabetes teams. There are plenty of things available that could help you (I think looping could be a game-changer for you) but your team does not seem interested in helping you find what works for you.

I also struggle with letting diabetes slide when I'm hyperfixated. Feel free to PM me if you'd like to chat.
Click to expand...
Hi, I'm jumping on this post to try help my daughter. What is looping please?
 
mentat

mentat

Well-Known Member
Messages
419
Type of diabetes
Type 1
Treatment type
Pump
NikkiT1D said:
Hi, I'm jumping on this post to try help my daughter. What is looping please?
Click to expand...
Looping refers to a "closed loop" insulin delivery system, also known as an "artificial pancreas".

This requires the use of a continuous glucose monitor (CGM) and an insulin pump that adjusts insulin delivery based on current blood glucose level.

Not all insulin pumps have this feature. There are also unofficial projects such as AndroidAPS and Loop to achieve this.
 
N

NikkiT1D

Member
Messages
5
Type of diabetes
Parent
Treatment type
I do not have diabetes
mentat said:
Looping refers to a "closed loop" insulin delivery system, also known as an "artificial pancreas".

This requires the use of a continuous glucose monitor (CGM) and an insulin pump that adjusts insulin delivery based on current blood glucose level.

Not all insulin pumps have this feature. There are also unofficial projects such as AndroidAPS and Loop to achieve this.
Click to expand...
Okay thank you.
 
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TriciaWs

Well-Known Member
Messages
1,727
Type of diabetes
Type 2
Treatment type
Other
I am not T1 and not on insulin, but I do need to take other meds on a 'regular' pattern.
Yes it is very easy to ignore or turn off alarms - and I really rely on them to take meds and turn up to meetings on time.
One thing that may help is changing the alarm sound every week. other than that maybe try using the flashing lights used by deaf people?
https://rnid.org.uk/information-and-support/technology-and-products/alarms/

If you are techie enough, or have a techie friend, you could even change the colour of the light each week.

And here is a link for training about neurodiversity you can give to the Diabetes team! I've done training with them on behalf of one of the groups I work with, in order to explain the range of adjustments, etc. and found them very good. https://www.texthelp.com/resources/neurodiversity/
 
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