The thing that still bothers me about having diabetes

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Amity Island

Amity Island

Well-Known Member
Relationship to Diabetes
Type 1
Hi,

I've lived with type 1 diabetes since 1998. To this day, the one thing that still bothers me and has always bothered me, is you never really switch off from it, not really. I'm stood chatting to somebody and often have occasional thoughts about blood sugar levels. Even now, with alarms on freestyle libre, I still get concerned. I often feel people I engage in conversation with become aware that my attention isn't always 100% no matter how interesting the conversation.

Just felt like sharing that. I can do all the management, needles, insulin, treating hypo etc, but still haven't got over not being able to be 100% present.

Anybody got any thoughts on this?
 
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I completely agree. I have a kind of ongoing constant monitoring going on in my head. Anything will cause an alert too - dry mouth - Is my blood sugar high? Talking too much - What’s my blood sugar doing? Feeling hot - Impending hypo? I often find myself thinking about the time too when I’m having a conversation eg I might wonder how close to lunch it is. Even when people suggest something like going for a walk, my first thought is instinctively the stupid diabetes rather than whether it would be nice or where to go.

Restaurants are a pain too. Total carb focus and wondering when the food’s arriving. Quite often I find myself thinking about the carbs when I’m chatting about other things, wondering how many potatoes it will come with, etc, etc.

I think the honest answer is that we can’t be present mentally all the time. It’s natural to do some mental monitoring. I don’t think we have a choice. I think it was Gary Scheiner who described it as having a second full-time job. Exhausting.
 
Totally agree. I thought it was just me being my usually over causous, over worrying self!
 
Yes, I can very much relate to this too. I am lucky in that I tend to switch off from it when I sleep. Early on I used to wake up every couple of hours and worry that I might have a nocturnal hypo. Once I had a few and realized that I can rely on my body to wake me up, I sleep really well now BUT I sleep with my Libre under my pillow, so if I do wake up I can scan very easily (I don't have L:ibre 2) and I am always conscious about where my Libre scanner is.
I can certainly recall having conversations with people where I can feel my levels are dropping and I keep thinking the conversation will end soon and I can go and treat this but then the conversation continues and I have difficulty finding a way to extricate myself to test and eat my hypo treatment, so I am not fully paying attention to the conversation whilst I am processing the situation and how to deal with it..... especially difficult when hypo brain is kicking in. It is OK with close friends and family of course who know because I can just say I am hypo but when you stop to talk to a neighbour in the street and then start to feel a hypo coming on and don't want to cause a fuss, it is more difficult and it happens to me a lot because my stable yard is in the middle of the village so lots of people stop to talk whilst I am working, and of course the physical nature of the work means that my levels can often drop unexpectedly.

I used to love eating out although opportunities were/are few and far between, but it does come with extra considerations now and that definitely takes the edge off the enjoyment off those rare occasions. And yes, going for an impromptu walk or arranging to meet someone and then suddenly finding that levels are dropping and I can't drive is a real frustration. Appointments in general cause me great anxiety..... having to be somewhere at a set time gets me really anxious to start with but having to think about my BG levels to get me there, adds a whole other level to it. In fact I often avoid making appointments because it is such a stress.

So, yes, I can totally relate to the mental impact you are talking about and as someone who really struggles to multitask (I'm clearly not a real woman) I find this aspect quite challenging.
 
Since I’ve switched from the Libre to Dexcom G6 I hardly ever get obsessed with worries about going low because I simply look at my watch. Or, to have a bit of fun, ask Siri to tell me what it is, or whether I’m going low. And if it’s in the middle of a conversation I just whip out my hypo fix of the day and carry on.

Or, from the opposite end of the spectrum I’ll give myself an injection wherever I happen to be. I’ve certainly done that at the football.

Otherwise, I’ve got better things to do than think about diabetes, it’s just part of the way I am, and it’s the least of my varied conditions that trouble me.
 
Along same line as Mike, worry far less nowadays about things like bg dropping than before thanks to pump & libre device, so can't say it's on mind during conversations or it effects them in anyway.

Having said that diabetes is a condition that takes up fair amount of mind space, no doubt about it, but compared to decades before it doesn't compare.
 
I’m like that too @Amity Island

I have a background monitoring system constantly running in my head questioning if I’m ok and what I feel like. It’s become more noticeable since losing hypo awareness about 15 years back, am I high, low, safe to go out, how long ago did I bolus, how long is this conversation/situation going on. The tech, pump, cgm, alarms are great and I can concentrate on things but a percentage of my head space is always distracted with diabetes stuff.
 
oh yes its quite offen even subconouslly on my mind when out and about(and at work). i sometimes describe type 1 as a full time job with no days off.
 
Amity Island said:
Hi @rayray119 I was going to ask you if there is a way around having to be aware of it. The answer is either a cure or some kind of work around, be it smart insulin or a proper closed loop system. That would take away the need to think about it.
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i believe even with a closed loop system you have aware of it sometimes(you still have to carb count I believe) and plus its technoglly as someone who did a computing degree i know that sometimes technogelly can trow a wobble every now and again. but yes less if it works.
 
Amity Island said:
I was reading your reply @rebrascora thinking yep, yep, yes.

Yes it is definitely the conversations with strangers that i can relate to the most on the thinking/concern on blood sugars etc like you say, you feel obliged to listen and trying to find ways to end the conversation . Even reaching in for a jelly baby makes you feel a bit self conscious and then you've got to offer them one too! Lol.
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Exactly! At the yard I actually keep all my gear in my bag in the feed room where it is safe (from Rascal mostly) 🙄 . The horses investigate anything that might resemble/contain food/treats very thoroughly and can be quite destructive in the process, so it gets hung up in the doorway when I go in and that reminds me to pick it up again when I leave and it is easily accessible unless someone stops to talk to me in the yard, so I usually can't even pop a JB in my mouth mid conversation when it happens to me..... and I keep them in little pots of 2 for hypo treatment so even if I have my bag with me it would feel awkward eating without offering, but no bag to offer. It just feels socially awkward.
 
Amity Island said:
I was reading your reply @rebrascora thinking yep, yep, yes.

Yes it is definitely the conversations with strangers that i can relate to the most on the thinking/concern on blood sugars etc like you say, you feel obliged to listen and trying to find ways to end the conversation . Even reaching in for a jelly baby makes you feel a bit self conscious and then you've got to offer them one too! Lol.
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gernally eat at work if I feel I need to thinking hey i need to do what i need to do and i can do my job netter. but any ask me question at the time that might look a bit awkward. now i do ted to wear a wrist band over clothes' wherever i go(including work) which is genially for in case anything happened)
 
I agree, it's never far from my thoughts.
Amusingly, last Saturday I was at a posh lunch drinks reception and our hostess was offering nibbles, which included cheese straws. I love these and took one, unthinkingly said "thank you, only 3.8 carbs" and carried on as if all quite normal. Our delightful hostess looked puzzled and slightly worried; I felt I had to briefly explain that carbs were invariably at the front of my mind - without getting too bogged down in "my world" .
 
I absolutely get this @Amity Island

As part of self-care, I’ve been trying some mindfulness type stuff for something like a year now - the idea that you train yourself to focus on the present moment that you are experiencing, and extricate yourself from your ’doing brain’ which is always planning, assessing, reviewing, trying to problem solve and fix things…

Quite early on in the practise, I realised that living with T1 and mindfulness was an uneasy alliance, because part of my brain is always on the lookout for ‘diabetes stuff’, sensations, signals, strategies, hypo warning signs yada yada yada. Plus of course then you add alarms into the mix…
 
Digressing slightly, but perhaps not .... I did a single module of mindfulness training earlier this year, thinking then it would not be appropriate for me (arrogance on my part).

I've found and got booked onto a 6 week course starting in June. My justification to myself is that stress is bad for DM; I find I get unnecessarily stressed over trivial matters; mindfulness could help me stop doing that; if I don't do a course and get myself into a sort of routine I won't bother to apply a technique which in my heart I know could be helpful.

So this will sit exactly as @everydayupsanddowns says as a potential contradiction to that 'alliance' unless I can make a mindful appreciation otherwise. To some extent the CGM technology and instant visibility worsens that continuous awareness of having DM; but I fear, if a cheese straw is near by, I will continue to always have that 3.8gm carbs moment!
 
The thing that still bothers me about having diabetes… is the fact that I still have it!

and that it takes up every corner of my mind. I wish it didn’t and I know it shouldn’t … but I can’t make it stop
 
Never been too good at acceptance, I’m more a one woman pity party type of gal lol

Hey anybody know why I can’t use any of the tabs at the top of my messages the bold, italic and emoji etc ?
 
@Amity Island .. just noticed your pic is from jaws which dredged a memory up from goodness knows where, remember when 3D jaws came out (not sure if your old enough) they sent out those red and blue 3D glasses in the newspaper, well we didn’t have enough for our whole family so my dad gave me a couple of wrappers off some quality streets and said they would be exactly the same… well they weren’t and I looked an idiot. So thanks inadvertently making me smile
 
EmmaL76 said:
Never been too good at acceptance, I’m more a one woman pity party type of gal lol

Hey anybody know why I can’t use any of the tabs at the top of my messages the bold, italic and emoji etc ?
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