Hi! I am eagerly awaiting the safe return of my partner who discovered he was T1D in a dramatic and traumatic way- was admitted to ICU abroad and discharged yesterday after 7 very long days. I have tried to educate myself about T1D, and I’ve so far read what feels like more than I did for my law degree, and still feel clueless. Any advice on how to support my man when he does eventually come home- for the first few days. No idea what his body felt like, or how he must feel emotionally. Any help welcome. Thank you in advance xx
@dizzylodds First EM, Welcome to the Breakthrough T1D Community Forum! You have xome to the right place to ask questions and receive tips and suggestions prom persons affected by diabetes; we don’t offer “medical advice”. You can get some really helpful information by clicking on the Resources tab on the homepage ans selecting any of the headings.
Learning about diabetes and how to help - you and your partner in in for a long journey on a road with many bumps, and much will be self-taught as no two cases are exactly alike and “best treatment” methods shift as new medicines, tools, and medical theory progress. I’ve been on this journey for seven decades and still learning.
My thought for you when he arrives back with you; listen to him, let him share where he is [physically and mentally], do not push him too hard. And, continue the investigation you have already begun. Use trusted people and sources and help him to find the beat diabetologist in your area gor professional guidance, a lead medical professional for diabetes is frequently an endocrinologist. If he is open to your presence, it might be good for you to be with him at first doctor visit(s) to be a second set of ears - new terms, words, etc. can be a lot to take in and get right.
Best wishes, and good luck. Keep us posted.
Hi. Welcome to the forum and thanks for writing. You might get started on some leg work to find endo’s in your area. You’ll need to find one who handies Type1 - many are familiar with Type2 which is much more prevalent and don’t really understand Type1 management. You might find it helpful to go with him if he’s okay with that - it would be a good way for you both to learn and be on the same page.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful, and when I read it I found it to be an easy read - at least for a medical book. A new edition just came out this summer.
You’ll hear about keeping glucagon on hand for low blood sugars - it’s used when a person can’t take in something orally and hopefully you will never need to use it. Prescription is required so he/you will want to discuss it with his doctor. Traditionally glucagon has been administered via injection - which can be tricky for a bystander or loved one who may be panicking. It now comes in a nasal spray called baqsimi so you may want to ask for that.
All the best to you both. When does he get back?
Hi @dizzylodds Welcome. Well… diabetes can be as simple as “carbohydrates make your blood sugar go up- insulin makes your blood sugar go down”. At least for now. It takes about a year to learn the new language and to start to learn the finer points of blood sugar control. With respect, diagnosis is a trauma and so post trauma things (anxiety, depression, denial, and anger) are all in play and can be either really big issues or manageable issues. For many, acceptance of this new normal can take some time. please come often, ask questions use this forum for all of our collective knowledge as best as you can! 
Dennis, thank you. I am trying myself to science the arse out of it, but a week hasn’t been enough, if I’m honest, it’s so complicated, I’m not sure a lifetime would be. I know when he is home he will feel safer, and he comes to me at times he’s overwhelmed or stuck and we work it through. This time he needs more than I have right now, which is the arms out, palms up, shoulder shrug, dunno, one. Not good enough. Thank you. Listen, gentle, be patient and find an endo. Fabulous advice, that would probably have been omitted. Thank you for your time and your concern, Dennis. X
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Hey! Thank you for posting. Finding an endo was off my radar, and now it’s a high priority. Thank you, already so glad I’ve joined the forum.
I ordered that book but it took two days to arrive, so I got it on audible and sat 11 hours to listen to it. Got to the end, and am going through it again, this time with a note book- it is so helpful.
He’s back tomorrow. It’s the longest we’ve spent been apart. He was a bit sick the night before he went, but pushed himself to get on the plane to not ruin his brothers birthday plans. After his second night he was a bit quiet on the phone…. I then got a call to say he was in ICU and it wasn’t looking good. It’s been the worst week of my life, so I have no idea how he is feeling. I just hope I can hold myself together enough to make him feel safe when I see him. Thank you, for your time in replying. It means lot xx
Ahhh, Joe- the simplicity of your opener is the one thing, so far that makes sense and I can remember. Thank you for your response, and you time in doing so. He’s a mountaineer, and so has grit built in to his core… but this is a different kind of climb and both caught off guard. Thank goodness, I can say both. Never knew how devastating Beeties could be. So grateful I didn’t lose him…. Just want to be ready to have his back with this, going forward. Xx thanks for your support
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Glad to help. I love how supportive this community is, and you both will find you’re not alone in your feelings. The learning curve is steep - including learning your own body’s responses. It’s only been a matter of days - things will connect with time Some of it is frankly trial and error and it can take time to get it right - or something close.
Doctors usually recommend two devices: continuous glucose monitors (CGMs) and insulin pumps. Absolutely, positively get a CGM - you can see constantly where your numbers are - and if they are moving - rather than sticking your fingers each time you need to know. Dexcom and Freestyle are the big players. Dexcom lets you share your numbers, which you both might find helpful, at least at first. Freestyle might too but I’m not sure.
Imsulin pumps are considered the best way to manage diabetes, and there are people who simply cannot manage lows or highs without one, so for them it’s a must. But not everyone has that level of need, not everyone wants a pump, and frankly some people do better on injections! Your guy just had a crisis but it remains to be seen where he falls on that spectrum once things are more “settled.”
I’ve had Type1 for over 60 years and while I love technology I believe in knowing how to “go old school” as well even if you do choose to embrace it. His choice of course but learning to manage on injections is a good skill to have. A pump is an investment and you typically have to keep it for 4 years (with the exception of Omnipod) so if it’s an iron and not an absolute necessity it’s best to go in thoughtfully and certain you want it.
Your guy’s a hiker so his physical fitness served him well during his emergency. He was in a better place to start than someone who has always been sedentary, and I imagine he’s already conscious about fitness and eating well - that will serve him well. There are some other hikers on here - here’s a link to a discussion. In time he He’s may well be able to get back to it at the same level as before. T1D and Hiking - #6 by MatthikesT1
I’ll let you get back to counting down the hours to his arrival. He’s blessed to have you. Happy reunion, and take things one day at a time. I’ll keep him and you in prayer if you like.
Hi. Just checking in to see how things are going.
Hey!!! I’m so sorry for reaching out and then dropping off the radar. It’s been absolutely full on trying to get him integrated into the system having started abroad. It’s been a nightmare getting kit as still awaiting diagnostics from the hospital in Spain, and then getting your head around everything, as well as trying to function on basic things, I don’t think I’ve be en brushed my teeth yet today!!! The great news is he’s home, and tackling this bad boy head on. I couldn’t be prouder and I’m secretly so proud that I managed not to bust into tears when I did see him!!! He’s rocking the freestyle libre 2 device (which I can view, meaning no more checking levels during the night, or having anxiety about hypos during the night, well, not so much anxiety anyway). All the advice I’ve had from here has been amazing. I managed to get my head around stuff enough I think by closely monitoring patterns and spikes to speak to the Beeties nurses to say I think we need to go down from 6 units to 4 for the bolus (?) mealtime jabs and they agreed! So, I think, as we near the end of week 2….. having him critically ill in keotoacidosis this time a fortnight ago- I’m pleased to report, I think- a strong start has been made. May I thank you all again for supporting me here, in the first few scary days when I was absolutely blindsided by this and felt completely overwhelmed and had no idea where to turn, or how to begin supporting him with this. I really did come to the right place, and I’m so grateful to all of you for your help this far, and no doubt going forward. Who knows, I may perhaps become of some use to someone on here one day. I’ll keep reading, learning and hopefully vicariously evolving with this thing. I think the cleaner eating and my partners choice to cut alcohol (which I’ll support him with) may even put me in better shape too. The stress is no fun, but if I can lose a few pounds as an exchange, I’ll take it as a silver lining! Xx thank you again, to those who put a hand out to me in what felt like my darkest hours. I have such newfound respect for those with diabetes who manage- it’s really quite an art! Xx
Thanks EM @dizzylodds for the update. While you are stressing yourself while caring for him and maybe neglecting your health, please do take a bit of time for yourself. You do mention a positive side effect - while you are examining what he eats and drinks, your eating habits might take advantage the knowledge you gain.
Yes, continue to ask his nurse and don’t take advice from my suggestions but I do offer some of what I’ve learned. Mealtime insulin dosing, what we call I:Cr [Insulin to Carbohydrate ratio] for those who count carbs, can vary drastically from meal to meal during the day - for instance, for breakfast, my ratio is one unit of insulin for 8 crams of carb [ 1:8 ] and 1: 18 for my evening meal. The heavier morning dose needed most probably is due to the dump of adrenalin my body makes to wake me up.
Another bit of information, often misunderstood is that DKA or axidosis poisoning is not caused by high blood sugar levels, but rather by not injecting/infusing enough insulin to cover the basic body needs and foods eaten. The hard part here is he will need sufficient insulin injected BUT not so much to drive him into hypoglycemia - my personal choice over 69 years is to accept a LITTLE higher blood sugar and avoid going too low.
Keep up your good work!
No apology necessary! I know you’ve been busy getting things set and learning. You’re doing great and he is blessed to have you. Keep us posted.
Hopefully he will get a CGM (Continuous Glucose Monitor) soon and will be able to see how carbs affect him - watch out for rice, pasta, and potatoes
There are also online Zoom groups for Type 1’s and caregivers - check your local Breakthrough T1D for events near you
Hi EM, just want to check in to see how things are going. I liked your comment about managing is an art. It really is.
A good education resource is tcoyd.org The organization is run by a couple of endos with T1D. They do a good job addressing the emotional side and including who they call “Type 3” - those that live with people who have T1D.
Since your partner is recently diagnosed read about FDA Approves Tzield—A Watershed Moment for the T1D Community and if you partner wants to check out Type 1 Diabetes Clinical Trials - Breakthrough T1D . There’s a lot of trials for newly diagnosed T1D people right now. Some are drugs, many are how to make education better.
Chris…. Thank you for your message. Please don’t let the time taken to respond be any measure of how it landed. It was so welcomed…. And SO helpful. I wonder what the mortality rate is for the Type 3 folk, though?! A couple of times, I slept with one eye open, as I thought if I woke him up one more time when he was having a hypo, I would regret it. Jeeeeez, this is hard. We’re 5 weeks into diagnosis and whilst he’s doing incredibly at managing- the emotional impact on us, separately and together is devastating. Somewhere between me trying too hard to support him, and his frustration with having his autonomy and all the other things he’s dealing with, put into question- we’ve drifted. Whilst I know my role as his emotional rock is to support him, all hours of every day- it’s too hard to describe the upset caused, by being snapped at all the time and the brunt of everything. In the 20 years since I met him, this is so different. It’s really hard to not take it personally, especially with family dynamics, who were also, obviously, terrified of almost losing him. It feels now I’m losing him on another level. We even spent Christmas apart.
I’m sure it will get better, and I’ve held off from sending this message, as things were just biting on a new level when it landed- I’m hopeful things will get easier with time.im so sorry if this sounds like this is about me, i know im just caught in the edge of his vortex- i cant imagine how it feels for him. And, it goes without saying, I’m forever grateful he’s still here (the most important thing) and to you all for your support- wherever you are, whatever your story- I appreciate this so much.
I will check those links, as a priority. Xx
Hope you all had a lovely Christmas and my very best wishes for 2026 xxx
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I’ll repeat myself just one more time, a diagnosis is a traumatic event. Post traumatic stress is very difficult, the very first symptom is anger. Your post should be about you, you should not tolerate unacceptable behavior so please take care of yourself. Are you keeping up with your healthcare? Eating and exercising regularly? @dizzylodds this is of utmost importance. The human body is designed to wake up in a hypoglycemic event, I’m not saying don’t worry but rest assured (quite literally) that when you get low blood sugar it creates an adrenaline reaction that is nearly impossible to sleep through. Look into a CGM I am positive that the NHS pays for at least the Freestyle Libre. Which can be set to alarm for a hypo. Please take care of yourself!
Hypos are frightening - for those looking on as well as those in the midst of them - and perhaps particularly so if you’re woken up to one in the middle of the night. If that’s happening frequently it means his insulin regimen needs to be changed. The initial dosing the doctor prescribes is the baseline but chances are they need to be changed based on patterns you observe. If he’s going low frequently overnight - or there are other patterns - he should tell his doctor so they can adjust. It’s a team effort for now and he may not like going to his doctor for instruction every time, but in time he may well be able to do it on his own.