4yrs diabetes T1 - sleep anxiety

[Littlefoot]

Hi all,
my son has had T1 now for 4 yrs. It is well controlled. He has Libra sensors and a pump ( but with Covid n coming home he has gone back to injections - not really sure why).

He is struggling with anxiety... docs not sure how wrapped up that is with T1 or not. One outcome is he is frightened of going to sleep. Worries will take him ages to go to sleep and so his mind can't relax n go to sleep. Often he gets lows when he finally drifts off .so sleep patterns are wrecked....Has become nocturnal....but still with broken sleep n big angst about whole thing. He is exhausted n depressed with whole sleep thing.

Is being treated with medication by doctors on top of T1 meds.

I am sure the T1 issues are a big cause of this....He says his anxiety about sleep stems from the day he first became ill ..a few months before collapse and final diagnosis.

Any ideas please as to how to help him. I have already got Dexcom CGM but he won't use....says will make him more anxious. I have said for a while we will test him at night...but he doesn't want us to do. He keeps glucose by his bed. Normally has a snack before bed.... Although over a day he eats way to little. ..I think just being plain hungry won't help ...Doc given him sleeping tablets to get him back into routine and so eat/ exercise etc but minimal benefit .tips all the sleep routine ideas to relax. He's had CBT n is now having video call therapy....and he's too big to cuddle to sleep....much as I would if I could !!

He and us are out of ideas...sleep deprivation is pants.!!! And he is asking us parents to help.......but what with ,apart from reassurance he'll be ok. Has never been hospitalized since diagnosis , clinic happy with his control etc.....

Covid doesn't help matters either! Especially now with the death rate headlines! Urghh.


He has been struggling with this now for 2 yrs.living away from home...wanting to sort by himself....become a self viscous circle . Only now v apparent how bad it is since he came home to stay cos of Covid lockdown.

Any tips please how we can help him and he can help himself get out if this horrible rut and so improve his quality of life.

Thank you

 

[Littlefoot]

Whoops I am talking about my adult son....who is 23!

 

[brisr949]

I would of thought testing at night is the key, surely if he knew the lvl then he could adjust accordingly and maybe rest a little easier, not testing i think his subconscious is toying with the unknown so will not let him fully relax through fear of hypo through the night.
Adam.

 

[Thebearcametoo]

I think lockdown etc is messing with many people’s sleep routines so it may well be a combination of factors.

Mindfulness and meditation can help. If bedtime is a difficult time then doing meditation earlier in the day around anxiety and relaxation can be good. There are lots of free resources for guided meditations. Some exercise can help too.

Listening to podcasts, gentle music, audio books etc when trying to get to sleep can give your brain something else to latch onto so you’re not cycling through worries. Libraries have free audio books, audible has some free to listen stuff at the moment and spotify, bbc sounds etc all have free podcasts.

If you can help him with keeping his glucose levels in target that’s good and you’ve already suggested helpful things like offering to test in the night. It can be tempting as a parent to want to offer fixes, sometimes though it’s about listening and letting them know their feelings are valid as much as sorting the problem.

 

[Inka]

He’d be reassured if he would use the Dexcom and set alarms for lows. He could also link you up via software so you could check too. If he won’t do that, then he could do what I used to do before I got my pump - set an alarm for 2am (or around there) and test. He will then be reassured and able to eat a bit extra if needed.

Another thing that helps the sleep is keeping to a strict schedule eg lights off by 11pm, get up at 7.30am (even if he’s tired). Also, avoid iPads, phones and x boxes etc in the 2hrs before sleep.

Finally, would he join here? Talking to others in a similar situation might ease his fears. It sounds like he’s stressed and in denial, along with a bit of diabetes burnout. It must be hard for him.

P.S - if the injections are making him more stressed, see if he could switch back to the pump.

 

[SB2015]

I think many are finding that Covid and lockdown are causing levels to be a bit all over the place. I know that I am having to adjust my basal insulin a lot more than usual.

Along with the important suggestions of getting into a good routine for each day, I would suggest that that includes eating his evening meal earlyish. I eat at 6:30 every evening so that all my Bolus insulin is done and suited before I go to bed. That means I only have to deal with the background insulin. It feels like one less variable to deal with overnight.

Was it your son’s choice to switch back to injections or his therapist? I would find it much more stressful not being on a pump, and as others have said the CGM with alarms can give peace of mind at night. Otherwise an alarm during the night to do a quick test is good and could just become part of his routine, with any necessary correction or jelly babies or equivalent.

As @Inka suggested would he feel able to join here. I have found. It very helpful when things get wobbly to have support from others who ‘get It’ and also to know that having wobbles is ‘normal’.
It has also been useful to see that others are finding that their levels just don’t behave at times in spite of everything we do.

 

[Littlefoot]

thanks everyone . All helpful .. 🙂 .. gives me things to talk about with him .... which he is now willing to do ... a step forward at 3.30 am this morning when he was still awake and feeling miserable - is urghh to see him so distressed - worse for him .... .

Diabetes nurse is focusing on encouraging him .... and I think I need to listen to him ( especially re his feelings) more as suggested here ... and then gently filter in the ideas as just that - ideas ... .... otherwise he gets into a tiss with me thinking I am ' telling' him ... and that makes his stress and so BG higher! Viscious circles .urghh .

I will try again with suggesting the forums - had no luck with it so far .... I know disrupted sleep is an issue for T1 and with anxiety etc .... ..... so the empathy + all the great ideas could help.

THANK YOU AGAIN ... X

 

[trophywench]

Let's be honest - most of us joined a diabetes forum in the first place since we were having some difficulty with our diabetes and therefore our lives, that we just didn't know how to solve alone. So we arrive and say hello and keep quiet for a bit while we're reading up some of the links and reading matter the forumites have suggested to other PWD, whilst assessing whether we think they were sensible suggestions! If we do, we stick around and then decide to share our problem …..

He can join - and NEVER put a single Post on the forum if he doesn't want to - don't think it's compulsory!

 

[everydayupsanddowns]

Sorry to hear your lad is having a tough time @Littlefoot

Diabetes can certainly be relentless, and it’s much harder to manage when you are deprived of sleep and not really on top of your game.

it sounds like there are some psychological challenges around your son’s diagnosis and relationship to his diabetes that need unpacking - and he may benefit from specialist psych support and counselling to do that.

In particular, anxiety about information (wearing Dexcom for alarms at night) seems striking. It feels like he is not so much worried about the numbers themselves, as being told about them.

It also feels as if perhaps he doesn’t feel empowered to change what those numbers are. And feels judged by them as a measure of how ‘well’ (or otherwise!) he is doing. But the numbers are just information, to help decide what to do next, and to look for patterns about broader changes and strategies that might be worth trying. They will always change, ebb and flow, and ’perfect numbers’ aren’t possible.

We just have to take the information they provide and use it to make tweaks and changes for what seems to be happening with our diabetes at the moment.

Has he ever had structured education in diabetes management (eg DAFNE or BERTIE) either in person or as an online course?

Has he ever been taught to basal test so that he can adjust basal insulin (or even better... pump basal profile) to reduce hypo risk overnight and improve meal/correction ratio outcomes during the day?

 

[Nannybear]

My son who is twenty suffers from poor quality/fractured sleep , made worse by his student life style. covid, lockdowns, self isolating, related anxiety and no face to face specialist appointments certainly haven’t helped. As a parent of a young adult you want to help but not step on their toes and seem too bossy. Best if he could speak to one of his specialist clinicians, my son did recently and it gave him a chance to share the load.

 

[Leadinglights]

My son who is twenty suffers from poor quality/fractured sleep , made worse by his student life style. covid, lockdowns, self isolating, related anxiety and no face to face specialist appointments certainly haven’t helped. As a parent of a young adult you want to help but not step on their toes and seem too bossy. Best if he could speak to one of his specialist clinicians, my son did recently and it gave him a chance to share the load.

The OP has not been here since may 2021

 

[Amity Island]

Hi all,
my son has had T1 now for 4 yrs. It is well controlled. He has Libra sensors and a pump ( but with Covid n coming home he has gone back to injections - not really sure why).

He is struggling with anxiety... docs not sure how wrapped up that is with T1 or not. One outcome is he is frightened of going to sleep. Worries will take him ages to go to sleep and so his mind can't relax n go to sleep. Often he gets lows when he finally drifts off .so sleep patterns are wrecked....Has become nocturnal....but still with broken sleep n big angst about whole thing. He is exhausted n depressed with whole sleep thing.

Is being treated with medication by doctors on top of T1 meds.

I am sure the T1 issues are a big cause of this....He says his anxiety about sleep stems from the day he first became ill ..a few months before collapse and final diagnosis.

Any ideas please as to how to help him. I have already got Dexcom CGM but he won't use....says will make him more anxious. I have said for a while we will test him at night...but he doesn't want us to do. He keeps glucose by his bed. Normally has a snack before bed.... Although over a day he eats way to little. ..I think just being plain hungry won't help ...Doc given him sleeping tablets to get him back into routine and so eat/ exercise etc but minimal benefit .tips all the sleep routine ideas to relax. He's had CBT n is now having video call therapy....and he's too big to cuddle to sleep....much as I would if I could !!

He and us are out of ideas...sleep deprivation is pants.!!! And he is asking us parents to help.......but what with ,apart from reassurance he'll be ok. Has never been hospitalized since diagnosis , clinic happy with his control etc.....

Covid doesn't help matters either! Especially now with the death rate headlines! Urghh.


He has been struggling with this now for 2 yrs.living away from home...wanting to sort by himself....become a self viscous circle . Only now v apparent how bad it is since he came home to stay cos of Covid lockdown.

Any tips please how we can help him and he can help himself get out if this horrible rut and so improve his quality of life.

Thank you

Hi Littlefoot

I would re-iterate what @SB2015 said.

For a worry free decent night's sleep, I would recommend eating tea early. Bolus insulin for meals can last up to 6hrs. This means for it (bolus) to be able to run it's full course of action before sleep, then the meal time bolus needs to be taken at 5pm and no later.

At 11pm blood sugar can be checked and on the libre whether the basal background readings are now levelling off on the graph. If at 11pm blood sugar was say 8mmol and running level, this would be safe to go to sleep on and should stay around 8mmol all through the night, provided the basal insulin is set correctly across 24hrs a day. If blood sugars are still rising or falling during the night, this indicates the basal insulin needs adjusting (the following day) to bring background blood sugars level.

The other thing to mention is, if at 11pm blood sugar is slightly high, then a brisk walk for 15mins would help lower this. If blood sugar is lower than 7mmol, then a small snack biscuit would bring it over 8 again. If lower than 4mmol, this is considered hypo and needs immediate glucose, a few jelly babies for example.

The key is don't eat too late and ensure basal dose is keeping blood sugars steady over 24hrs.

 

[trophywench]

I worked in a professional office where the hours were always 9 to 5 or 5.30. My husband worked in a factory - 7.30 to 4.30 or 8 to 6. No way Pedro could we have ever eaten - let alone prepared and cooked - an evening meal by 5pm.

 

[Littlefoot]

Just thought I'd get back to you .... life for my son has been pants ... last year - lock down etc ... Luckily - no real life threatening crisis ...but just under the surface still ..........

... but the good news ....last few weeks ... :
- some bad panic attacks = urgh
- new meds for anxiety as a result - that look to have helped 😉
- and trying new diabetes management / sleeping practises etc approaches as a result also .... 😉
..... caused a few pennies to drop for my son ... 🙂


All the good advice that has been relayed to him from so many and his won research -- including from here ... I think got picked up in his brain plus a few situations / real fluke of circumstance in the mix - so he worked out his own special recipe and lessons that makes things a bit better ... the improvement has been huge ...

A lesson for me re change ... sometimes .... it just takes time .... .. and luck of life ....

Am so glad you could all help me to help him . ... THANK YOU!

Am crossing fingers the progress continues. Early days ... so I am re reading all the good info to remind myself - to flag to him ... ! Never know when something sinks in and might just help ...🙂

So lucky to have you wonderful people. ! xx

 

[Inka]

Great news @Littlefoot 😎🙂 Thank you for the update. I hope things continue to go well.