awww thank you for sharing this! i hate those times when it feels just so out of control, even though I try my best. i appreciate your attitude and it felt so good to groan about diabetes with you!
Ah thanks Michelle! I'm pleased it resonated, although it's rubbish that so many of us have to navigate these frustrations. hope this week is being kind to you!
Thank you for sharing this. I recently told a friend how trying to control blood sugars can sometimes feel like such a full-time job. Friends and family just don't seem to understand. I live alone and that time between when you treat a low and then wait to see if it worked is so nerve-wracking. I use a CP machine, and when my sleep is interrupted by a low, I don't get enough rest and the next day is such a challenge. What a roller coaster ride.
Ahhh Helen, I'm with you, it really is a full time job. I remember a few years ago going on holiday with a friend and she said 'I had no idea how constant this was' because we'd never been together around the clock and it definitely reminded me that I'm doing ok given the circumstances! I hope you're giving yourself some grace for all the work you're doing, and that those lonely lows aren't visiting too often. I know that vulnerability so well, and that fatigue after a night of lows - oh my! Big hugs to you x
I am LIVING for these story time videos. My goodness gracious - I basically had a very similar experience to yours over the last few weeks - except in the opposite direction (high-o-rama over here) - just want you to know how darn seen I feel and not alone in this big ol' diabetes world as a result of your willingness to be open and vulnerable with your fears and experience. I LOVE these story-time loose videos and can't tell you enough - I want more!!!! I hope things settle out and that you're feeling more yourself now on every level - just know - no matter where your bg is, you're a queen in my eyes - and ALWAYS an inspiration baby!!! 💙
Haha she tells a LONG story! I hope your BGs have settled a bit my love (given that our 'summer' seems to have been very fleeting!) and RIGHT BACK ATCHA - never stop doing what you're doing, you're a shining light around here! xxx
Hi Jen. Really useful to hear these vicissitudes. I share your vlogs with friends to help them understand me because you say it so well! After 52 years with T1D and living in Canada for 35 years with temperature extremes -20 deg C winters to + 30 deg C in summer find 2 basal programmes essential for ‘Hot and Cold’. Variable months a challenge. Good luck, as a retired (since Covid) psychiatrist/psychoanalyst have discovered self doubt/terror of living alone and depressive thoughts always come when low. As you say when at most vulnerable during night and extended low our attachment response seeks a secure base: with another! But we thankfully all survive with Dexcom G6 and , for me tandem and CIQ now, which lessens risk of prolonged hypos, but still happen. Good luck and thanks for your optimism.
Ah Jane, thank you for such a kind message and thank you for being so generous in sharing your experiences too! I'm honoured that you share my vlogs; very often I just think I'm chatting nonsense! It's so reassuring to hear that they connect. I'm so sorry for your recent experiences with Covid, I completely resonate with everything you've said - to go from feeling strong and independent to feeling very exposed and vulnerable is so tricky to process, and even harder in the depths of erratic blood glucose levels. Those Canadian seasons certainly must add to the challenges of living with type 1! I have the utmost respect for you for managing this for 52 years, and it sounds like you've had a fascinating career too. I hope the pressures of Covid are easing for you, and that you are finding connection and purpose in new ways as this new chapter of your life unfolds. It's great to hear that the technology is also bringing a sense of safety for you - it's definitely been crucial to me at times, particularly as my base shifts, whether that be professional, personal, geographical or otherwise! Big hugs and lots of love to you x
Ah Cathy! You're so welcome, I do hope you've found a few people in the online space that you can chat to! It's not easy wading through this thing is it? Sending big hugs to you x
Thank you for opening up. I'm a T1D of many donkeys. I've had and have similar weird weeks that defy logic or physics or dextrose tabs. Your personality is very good for presenting diabetes as it really is, without scaring the bejebus out of us. Hope you're well at the moment. 🙂
I completely hear you. I've been type 1 for 35 years. It can be so defeating when it feels like you're doing everything right and you end up still feeling on a roller coaster lol. Glad you figured out something that worked 😊
Thanks Katherine, it's reassuring to know I'm not the only one who sometimes gets frustrated, even momentarily (sometimes a lot more than momentarily!) I hope type 1 is being kind to you this week :)
Thanks Jen. I'm T1D 35 years, Can relate to so much of your story. I live alone too. I think I look after myself well. Diabetes can be challenging sometimes, and requires a lot of thought and preparation. You have to be kind to yourself. I Have been using DIY loop for nearly 2 years, it helps a lot, also great for sleeping! I rarely get overnight lows now.
@@Ladygriz11 here is the one I use loopkit.github.io/loopdocs/ , also this one using Android phone is very popular androidaps.readthedocs.io/en/latest/
Hi Andrew! Ah thanks so much for watching and for sharing your insights - it's so helpful to hear from others. Someone else on loop told me their overnight hypos had completely stopped! Amazing. I'm not quite ready to dive into looping but I know it will come soon enough. Sending all the good vibes your way - you're so right we must be kind to ourselves, none of this is easy! Take care
You are AMAZING! I have two kiddos with Type 1. A 23yr old & a 12yr old.. My eldest has just moved out on his own. He is know where near as organised or health conscious as what you are. He is still on pens & refuses to keep up with technology. I pray for each & everyone of you beautiful souls having to deal with this medical condition. I made my 12yr old watch this latest podcast as she is a bit off with the fairies dealing with diabetes. I just want her to understand the seriousness of it all, but at the same time, it's hard for her to understand the sheer scope of it all - being that she is, only 12.. Bless you & I thank you for each & every podcast you share, from Australia xx
Ah thank you so much that's very kind! I'm sorry for the stresses you must be going through with this, it's a lot for you to carry as well as your children - I have the utmost respect for you handling this from afar because you are living through this just as much as we are. I found in my teens and early 20s I was much more disconnected, and sometimes that wasn't great but also sometimes I just had to do what I had to do. I've no doubt they'll get there in their own way (wherever 'there' is! I still don't have it figured out!) and it sounds like they have an amazing parent guiding them too
Thank you so much for sharing this. I have had an almost identical experience and as I have only been diagnosed type 1 for a couple of years I blamed myself for the crazy numbers. So good to know that even someone with your experience can still have unexplained crape days or even weeks. Blessings
Hi Wendy! Ah I'm sorry to hear you've had a rough ride too. It never ends does it... fingers crossed things are more settled for you. The ups and downs continue over here, but thankfully nothing quite as intense or ongoing as that week! Keeps me on my toes if nothing else! Sending hugs your way
Your videos are so grounding and human and relatable. It's just so lovely to listen to people going through similar things (but not so lovely about all of your lows). Your positivity and attitude are tremendously inspiring so thank you! Wonder if you've ever thought about getting a wee hypo dog for some company/help when low?
Ahhh Izzy that's such a generous comment thank you so much! I absolutely hear you, it's such a comfort to know we're not alone but it's also sad to know that we're all facing these daily challenges. I've definitely considered getting a pet in general for sure, but at the moment life is quite up in the air and I hope to be travelling again soon - fingers crossed once settled! Do you know anyone with a hypo dog? I can't say that I do! Hope your BGs are being kind to you this week x
I felt every word of that! I've lived alone throughout diabetes, like my independence too much. But I know that dead of night hypo, when the entire world is silent, and no amount of eating the entire contents of my cupboards will shift it, and you have that brief moment of fear. I hate feeling that way and no explanation as to why it's so low doesn't help!! Thankfully it doesn't happen often, and I can dust myself off and move on, but hearing your story of similar experiences definitely helps. Guess we're not so alone when we're alone (if that makes sense?)
Betty! Oh you describe it so well! The minutes between taking in sugar and it kicking in feel like an eternity... and then the worry comes of 'have I overcorrected? Oh balls, I've definitely overcorrected...' Annnnnd on it goes! I so appreciate you sharing your experiences - we're ABSOLUTELY not alone in being alone! That vulnerability really hits different in the dead of night doesn't it? Sending you the biggest hugs, I hope your BGs are being kind to you this week.
I also had one of those inexplicable three hour night time hypos recently. They suck and I felt and thought everything you described there! I almost called an ambulance but thought I would look really stupid if it skyrocketed by the time they got to me…so I called my mum instead 🤣
Oh Jonathan, there is nothing wrong with calling your mum! 😂 I know what you mean, you know at *some* point the numbers are going to move, and likely very dramatically too, and then it's all over as soon as it begun. Such a rollercoaster! You definitely wouldn't have looked stupid though; we've got to keep ourselves safe. Hope you're having a better week of sleep this week!
My body also reacts the same way to hot weather lows and post exercise highs. I have been living with this disease for 38 years and the amount of information we get and know has been so helpful to juggle it all.
Wow 38 years is a lot of juggling, respect to you! I'm definitely more knowledgable than I ever have been, but I also know that I'll never stop learning and there will always be days when things just don't make sense. I hope you're having a steady week, thanks so much for watching :)
Jen, I spent that whole episode nodding and wryly laughing along with your experiences, which I've shared. I also live alone & hate it when the "Am I safe?" question seeps into my brain. It's the sudden illogicality of it which is most frustrating. One day things are going along quite nicely then Wallop! And to top it all, just when you need to think really clearly, your brain turns to mush...... Glad you are feeling better.
Ahhh, I'm nodding to this whole comment! Totally with you, I get very frustrated when those questions start to creep into my otherwise very independent brain; and it's always when my blood sugars are at an extreme end of course, which just compounds the feelings entirely. Hope you're doing ok, thank you so much for watching x
This, absolutely. I'm almost 60 and love living alone but these long nights of wondering what's next can be disheartening. hypos are the worst. Thank you for the videos!
Thanks Jen, thought just me as had that other week. Also live alone and now on Libre 2 so getting alarms and why do they happen at 2 or 3 in morning. Can't do the basal changes as on MDIs but considering a pump as on MDIs can be issue in this changeable odd weather, especially in Highlands. Had to explain to non diabetic colleague about the weather causing issues and not convinced they believed me. Am considering a pump, but will probably have to self fund as normally "too controlled". what a fun condition this is. 🙂 Keep safe Jen and thanks for sharing as means a lot. ❤️
Hey Rob! How are you doing? Thanks so much for such a generous comment. Those Libre 2 alarms are INTENSE! I found them a bit too much of a shock, especially in the night, but I'm so happy the option of alarms is now there for people who want them. Argh the 'too controlled' justification is so frustrating! It shouldn't be an obstruction to having access to improved technology. Would you get it under the NHS or in the country you're in? There is a justification under the NHS around 'fear of hypos', which cannot be disproved, and should qualify you no matter what your control is. From these comments it's very clear that a lot of us have a serious fear of hypos - it's just something we've had to learn to live with, like so much of this condition. Take care
@@JenGrieves I must admit tend to turn the high one off at night, low one is reassuring though. thanks to weather having BG all over the place. In Scotland so may investigate more, but otherwise may stump up cost, other thing they don't realise is how many jabs sometimes to keep that control. Definitely a pin cushion at times lol. Still doing research on options if do pay want to make sure right choice for me. Keep up the great work Jen.
Yep the basal profiles are Amazing! My tandem ranges from .1u per hour from1-4pm, all the way up to .7 for a few hours(1am-4am. Probably 9 variations throughout the day.
oh ya been there. jusr this week i put in a new dexcom and it takes 3 days for the numbers to jive with finger pricks. had a trip from hell many years ago and my bs wouldnt go up. hours if it. it is good to tell these stories.so many people say Oh you look so good. guess how come I want to say. it is a 24 hr disease and never easy. so glad you made it through it all. WE NEED YOU. love Wendy
Hi Wendy! Hope you're keeping well? You're so kind to say such lovely things, I'm sorry to hear you've had some of these experiences too. I guess they're inevitable over the years but they're certainly not ones I want to keep repeating. You're so right it's 24 hours, 7 days a week and we're all pretty amazing to keep on moving forward. Thanks so much for watching, sending you big hugs! x
Thank you I’ve been there more often then I wish, along with the feeling unsafe. HATE IT 😏yet I’m alive. I’m glad your here to help others to ❤️🩸relate on UA-cam👍🏼😃👍🏼
Thank you for sharing your experiences Sarina. I'm so sorry you've had those feelings too - but it is helpful to know that we're not alone in this. I find they're made worse because of the erratic blood sugar too, so it compounds those vulnerabilities which I just really dislike! Hope you're feeling safe and your BGs are steady at the moment. Big hugs to you!
Late to this vid. I'm 1 Yr diagnosed this year, I'm 33 and had a mother who was type1. I don't know how she did it, it is so frustrating and always feels like you're doing something wrong. So good to hear I'm not alone in this struggle
Oh bless you, you must have felt truly rotten through all that 😔 I have been the opposite...heat appears to make me run high 🙄 I'm starting on a pump in a couple of weeks...I'm looking forward to being able to have different profiles to deal with these idiosyncrasies x
Hi Shirley! Thanks so much for your comment and for sharing your experiences. I've certainly had times where heat has sent me skyrocketing - it's all so tricky to predict isn't it! Have you started on your pump? That's super exciting! Temporary basals have helped me prevent so many hypos, and the accuracy of the insulin doses blew my mind at first - I went from whole units to 0.05 increments! I hope it's all going well for you - it took me about a month to suss it out but then I never looked back. Sending you big hugs!
Hi Jen, yes I've started on my pump now (TSlim) 😊 Been on it about 3 weeks and I'm slowly getting to grips with when I can use a temp basal and the basic mechanics of the pump. All been a big adjustment and I still feel a little overwhelmed by it and changing sets etc. Only had diabetes just over a year, so I'd just about got my head around that and now it feels like I'm starting all over again! But it's definitely better than injections and I'm sure I'll get used to it eventually. Thank you for sharing your experiences, I have learned so much from you 💜
Hi Jen ... thanks for sharing your story. What to say ... it seems quite normal to me .. that s one of the reason why I dont rely on what many of us call the magical formula insulin to carbs ratio...it wouldnt work for me at all!! insulin sensitivity keeps changing ... for instance in the last few weeks I ve had an impressive insulin sensitivity and I ve been eating up to 300 g of carbs a day with 35 insulin units a day ...I m 73 kgs and do some sport but not too much... to me a low fat diet along with plenty of sleep increase my insulin sensitivity and for some reasons I just like it ...a Hypo is easier to correct than a hyper
Hi Stefano, thanks so much for your insight, that's super interesting to hear and I completely agree! As I'm on an insulin pump I adjust my temporary basal rates all day long because there is no perfect basal setting that works for me from one day to the next - too many factors affect my insulin requirements and I like that the pump allows for that. Sounds like you're doing well which is great to hear as we all know how much effort that takes! Hope you're having a great week.
This was good to hear, really bad couple of weeks with my diabetes- bad night hypos then massive rebounds Bad low too whilst driving-now pretty sure I’m going to lose my licence Worst control I’ve ever had having had diabetes for 24 years
Hi Jen thanks for sharing your experience with a bad week of T1. I have been T1 and on Omnipod for over 10 years and had similar incidences similar to yours. It was far worse on MDI as you have no control over how much insulin is still active in your body. I agree with other comments that using DIY Loop is a game changer at least for me. Its not FDA or CE mark approved and you do need some technical skill along with a Mac, iPhone, and Rileylink to make it work. I found it was totally worth the effort as my occurrence of highs and lows improved dramatically. My A1c is a now 6.7 with Omnipod/DIY Loopl and maintained that number when my insurance caused me to switch to Tandem Tslim X2 with Control IQ which is FDA/CE mark approved. I can sleep knowing the pump watches over me and will stop insulin delivery for a predicted future low. I still occasionally have nighttime lows but they are not nearly as hard to correct due to IOB being much lower. I have found Loop and Tslim X2 very similar in control benefits. I had never used a tubed pump before Tslim X2 so that was an adjustment that didn't take too long and weighed against the benefits was well worth it.
It happens to me a lot my Bgs are shit a lot of the time cause I need completely different basal rates and I don’t get a new pump till April GRR In the heat I get Hypos always as I live in Canada 🇨🇦 and it happens to me every summer
Hi Debbie! I'm sorry to hear about the challenges you're facing, that must be very frustrating. Are you currently on injections? I hope you're able to keep well and look after yourself. Thank you so much for watching x
As soon as you said that it involves heat I knew what you meant I will forever remember further Ventura as I dipped in 1 day no joke 14 times I by the end of the day was crying while eating a bag of sweets I don’t want anymore it ended up I had to do no insulin throughout my trip when I got home up to hi as soon as I got home I am rubbish in the summer so I know how you feel so much xx feel bad for you xxx
Definitely relate 😢 except when my T1d goes off the rails I go HIGH…my graph for 24 hours makes a roller coaster look fun! I’ve learned I have cycles of increased or decreased hormones (not sure which) that cause this about every other month. I have a setting for that called high-mones! Nursing low in middle of the night though rarely ever happens to me but when it does it’s definitely my most vulnerable time I catch myself thinking is this when I just fade out once and for all but then my Alarm goes off like a fire engine siren….thank god for this technology.
I have diabetes type 1 from 2020 my age now is17 and I always think to just surrender to diabetes and do not take treatment I always tell my parents how it’s going with me but they don’t understand me and they tell me you don’t have family to take care of it and that I’m a spoiled boy
I hear you Jen. Luckily I have a libre and miaomiao to let me know. I have been considering a pump because it may help as I don't feel rubbish but do stress over my highs and lows. Not sure heat for me affects me being in Australia but the long CoVid lockdown is certainly causing diabetes stress. Like you comments on running, prebolus and insulin. I understand your pain but a positive of dealing with T1d I feel builds resilience for dealing with the pandemic and other issues.
I really here you There, I get my pump on Tuesday to try and stop these nighy time highs, I go to bed at 9mmol and wake up at 22mmol, so sick of them and fast acting insulin just dosent wanna work, feel tired crap and everything else dosent care, but hey that T1D for ya......
This is super helpful to hear. I'm lucky to have adult onset, so have not been dealing with this my whole life. I discovered my type 2 was a miss diagnosis when I had DKA and sepsis and nearly died. So I'm only a few years dealing with this and often feel lost and confused. Not in a sad way, just a bit lost and confused. This made me think of a question that hadn't occured to me before. Do basal insulin needs change with the seasons. I'm on injection not a pump, but do you know you'll automatically move to new numbers with the seasons? I've been mistified as to why my needs will suddenly change after months of stability and nothing in my life to explain it. Many thanks, N
Oh my goodness I'm so sorry that happened to you! Adult misdiagnosis of type 2 seems to be far too common, that must have been such a scary time for you. I'm pleased you've got some answers now. I'm not a doctor but I would say yes absolutely the change in seasons would affect me, as does stress, sleep, my cycle etc - basically anything hormone related! Would it be helpful to chat through with your diabetes team? They should hopefully have some insight. Take care x
I understand how you feel! I was also expecting it with the heat but for the first time, I've been ok sorry! :-) don't want to rub it in! :-) hope you feel better soon and have more long runs ! My temperament is terrible if like the week you have had! And like I keep saying we can never judge insulin it as its days to us or week I personally would have binned the insulin!
Haha you're totally fine, you've got to take those wins when you can! This condition often keeps me guessing - things I think will go wrong won't, and things I think I've got sussed go completely haywire! But hey, keeps me on my toes I guess... :) Hope your BGs are being kind to you today!
Anyone who's likely to be negatively affected by some unpleasant realities probably shouldn't read this. A couple of years ago I lost a close colleague to type 1, after she'd been diagnosed in her mid twenties. I say "lost to type 1" because she simply couldn't handle it, and by that I mean she couldn't handle exactly the things Jen is describing here. For the benefit for anyone who hasn't at least been around someone with type 1, the first thing the medical professionals do to recently diagnosed people who go out of range is a stern lecture about the risk of all sorts of horrendous complications, as if that isn't in the forefront of one's mind at that point. I witnessed them do that and they are not gentle about it, despite the fact that perfection is impossible. After tolerating it for a bit less than a year my colleague decided she'd had enough. Because it's so hidden and people put on a brave face, type 1 is easy to overlook. The reality is horrific beyond belief and anyone who manages to put up with it long term has my undying respect. I think many medical people mishandle it badly and sometimes that has very serious consequences.
Sounds like your basal insulin is way too high. I had a 2 hour hypo on my Tresiba after working out. If I don't exercise my need is 13 units of Tresiba, 7u at night, 6u in the morning. If I workout I only need 2u at night after exercise and 3u in the morning. I like you had easily 60g of carbohydrates at night a full roll of glucose tablets about 48g of glucose and a small granola bar the 100 calorie snack type. I don't normally eat carbs, generally I eat less than 25g a day, that night alone I ate 3 days worth of carbohydrates and I felt horrible. I got heartburn for hours in the morning. Even after the 60+ g of carbs I woke up in the normal range around 4.6, but without proper sleep.
Oh what a stressful experience for you, I'm so sorry you went through that! Thank you for sharing your experience. As tough as it is to know that others are dealing with these challenges, it's helpful to know that we're not alone. It sounds like you have an amazing understanding of your condition, that's very inspiring to hear about. Thank you so much for watching.
@@JenGrieves I think fundamentally the two most important questions a T1D should be able to answer about their illness/treatment plan should be: 1. How much 4g of glucose (carb) raises my blood glucose? 2. How much 1U of insulin drops my blood glucose perhaps also applies to the basal insulin as seen in my case. For me 4g of glucose raise my blood glucose 20-22 mg/dl. 1U of Humalog drops my blood sugar 53 to 56 mg/dl, basal insulin appears at least during the night that 1U will drop my glucose 31 to 33 mg/dl. Ex my basal take at night is 7u , if I take only 6u I tend to wake up at 115 mg/dl, if I take 7u I expect to wake up 84 to 82 mg/dl. If I take 8u most likely my blood sugar would drop below 50 any time between 2am to 3am. Kinda crazy right?
This is why I need a CGM. I would prefer the lows if I had a cgm to alert me. I run high every night because I'm a heavy sleeper and have to much fear of dead in bed. Right now my lows scare me and sneak up on me so I take almost half of my prescribed insulin at night so I won't go low. Without a CGM I feel like I am always chasing my blood sugar instead of being on top of and or ahead of it. I'm starting to chart my time in range but with only 4 blood strips a day for my glucometer on insurance.... Welp yeah. No CGM no pump no money. I feel that's how the pharmacy in America puts the *just die* in diabetes.
I completely understand how scary and frustrating that is, I'm so sorry for what you're going through. To know that the technology exists but to not be able to access it is horrific, especially when it's affecting your life as you describe. I know it doesn't help, but sending a virtual hug across the pond in any case. Take care
The day I came across Dr IGUDIA UA-cam channel was the day I started living a more comfortable life again after using his herbs medication in curing my Diabetes disease
Yes, I did bring my basals down around 20% later in the week and it helped. But also just one of those weeks in the mad world of type 1! Thanks so much for watching :)
Love your story! So glad Andrea sent me your way. I’ll be following you!
awww thank you for sharing this! i hate those times when it feels just so out of control, even though I try my best. i appreciate your attitude and it felt so good to groan about diabetes with you!
Ah thanks Michelle! I'm pleased it resonated, although it's rubbish that so many of us have to navigate these frustrations. hope this week is being kind to you!
Miss your videos. My son is Type 1 and your videos have been so helpful for us. Please consider sharing your tips & news once again. THANK YOU
Thank you for sharing this. I recently told a friend how trying to control blood sugars can sometimes feel like such a full-time job. Friends and family just don't seem to understand. I live alone and that time between when you treat a low and then wait to see if it worked is so nerve-wracking. I use a CP machine, and when my sleep is interrupted by a low, I don't get enough rest and the next day is such a challenge. What a roller coaster ride.
Ahhh Helen, I'm with you, it really is a full time job. I remember a few years ago going on holiday with a friend and she said 'I had no idea how constant this was' because we'd never been together around the clock and it definitely reminded me that I'm doing ok given the circumstances! I hope you're giving yourself some grace for all the work you're doing, and that those lonely lows aren't visiting too often. I know that vulnerability so well, and that fatigue after a night of lows - oh my! Big hugs to you x
I am LIVING for these story time videos. My goodness gracious - I basically had a very similar experience to yours over the last few weeks - except in the opposite direction (high-o-rama over here) - just want you to know how darn seen I feel and not alone in this big ol' diabetes world as a result of your willingness to be open and vulnerable with your fears and experience. I LOVE these story-time loose videos and can't tell you enough - I want more!!!! I hope things settle out and that you're feeling more yourself now on every level - just know - no matter where your bg is, you're a queen in my eyes - and ALWAYS an inspiration baby!!! 💙
Haha she tells a LONG story! I hope your BGs have settled a bit my love (given that our 'summer' seems to have been very fleeting!) and RIGHT BACK ATCHA - never stop doing what you're doing, you're a shining light around here! xxx
Crazy about you both❤
Hi Jen. Really useful to hear these vicissitudes. I share your vlogs with friends to help them understand me because you say it so well! After 52 years with T1D and living in Canada for 35 years with temperature extremes -20 deg C winters to + 30 deg C in summer find 2 basal programmes essential for ‘Hot and Cold’. Variable months a challenge. Good luck, as a retired (since Covid) psychiatrist/psychoanalyst have discovered self doubt/terror of living alone and depressive thoughts always come when low. As you say when at most vulnerable during night and extended low our attachment response seeks a secure base: with another! But we thankfully all survive with Dexcom G6 and , for me tandem and CIQ now, which lessens risk of prolonged hypos, but still happen. Good luck and thanks for your optimism.
Ah Jane, thank you for such a kind message and thank you for being so generous in sharing your experiences too! I'm honoured that you share my vlogs; very often I just think I'm chatting nonsense! It's so reassuring to hear that they connect. I'm so sorry for your recent experiences with Covid, I completely resonate with everything you've said - to go from feeling strong and independent to feeling very exposed and vulnerable is so tricky to process, and even harder in the depths of erratic blood glucose levels. Those Canadian seasons certainly must add to the challenges of living with type 1! I have the utmost respect for you for managing this for 52 years, and it sounds like you've had a fascinating career too. I hope the pressures of Covid are easing for you, and that you are finding connection and purpose in new ways as this new chapter of your life unfolds. It's great to hear that the technology is also bringing a sense of safety for you - it's definitely been crucial to me at times, particularly as my base shifts, whether that be professional, personal, geographical or otherwise! Big hugs and lots of love to you x
Thank you so much for these stories! I learn so much as you are the only one I know with type 1. Please keep posting!!!!!!
Ah Cathy! You're so welcome, I do hope you've found a few people in the online space that you can chat to! It's not easy wading through this thing is it? Sending big hugs to you x
Hello Cathy, besides Jen, your the only one I know with type 1.
Lol T in US.
Well done Jen proud of you love you and your videos
Thank you for opening up. I'm a T1D of many donkeys. I've had and have similar weird weeks that defy logic or physics or dextrose tabs. Your personality is very good for presenting diabetes as it really is, without scaring the bejebus out of us.
Hope you're well at the moment. 🙂
Thanks for sharing. It's good to know others get bad weeks too. I can relate.
I completely hear you. I've been type 1 for 35 years. It can be so defeating when it feels like you're doing everything right and you end up still feeling on a roller coaster lol. Glad you figured out something that worked 😊
Thanks Katherine, it's reassuring to know I'm not the only one who sometimes gets frustrated, even momentarily (sometimes a lot more than momentarily!) I hope type 1 is being kind to you this week :)
Did you suffer from any complacationes?
@@maimahmoud4405 all kinds haha. I've had surgery for retinopathy. Also gastropererisis and was on dialysis for 8 years.
Thanks Jen. I'm T1D 35 years, Can relate to so much of your story. I live alone too. I think I look after myself well. Diabetes can be challenging sometimes, and requires a lot of thought and preparation. You have to be kind to yourself.
I Have been using DIY loop for nearly 2 years, it helps a lot, also great for sleeping! I rarely get overnight lows now.
What is DIY loop?
@@Ladygriz11 here is the one I use loopkit.github.io/loopdocs/ , also this one using Android phone is very popular androidaps.readthedocs.io/en/latest/
Hi Andrew! Ah thanks so much for watching and for sharing your insights - it's so helpful to hear from others. Someone else on loop told me their overnight hypos had completely stopped! Amazing. I'm not quite ready to dive into looping but I know it will come soon enough. Sending all the good vibes your way - you're so right we must be kind to ourselves, none of this is easy! Take care
You are AMAZING! I have two kiddos with Type 1. A 23yr old & a 12yr old.. My eldest has just moved out on his own. He is know where near as organised or health conscious as what you are. He is still on pens & refuses to keep up with technology. I pray for each & everyone of you beautiful souls having to deal with this medical condition. I made my 12yr old watch this latest podcast as she is a bit off with the fairies dealing with diabetes. I just want her to understand the seriousness of it all, but at the same time, it's hard for her to understand the sheer scope of it all - being that she is, only 12.. Bless you & I thank you for each & every podcast you share, from Australia xx
Ah thank you so much that's very kind! I'm sorry for the stresses you must be going through with this, it's a lot for you to carry as well as your children - I have the utmost respect for you handling this from afar because you are living through this just as much as we are. I found in my teens and early 20s I was much more disconnected, and sometimes that wasn't great but also sometimes I just had to do what I had to do. I've no doubt they'll get there in their own way (wherever 'there' is! I still don't have it figured out!) and it sounds like they have an amazing parent guiding them too
Sounds like a wonderful week of Type 1 ;). Really enjoyed listening to your experiences and some were very relatable 🥲
Thanks Noah! Appreciate you watching :)
Thank you so much for sharing this. I have had an almost identical experience and as I have only been diagnosed type 1 for a couple of years I blamed myself for the crazy numbers. So good to know that even someone with your experience can still have unexplained crape days or even weeks. Blessings
Bless your heart! I have had a rough couple of weeks also, but nothing like yours. Sending positivity your way!!
Hi Wendy! Ah I'm sorry to hear you've had a rough ride too. It never ends does it... fingers crossed things are more settled for you. The ups and downs continue over here, but thankfully nothing quite as intense or ongoing as that week! Keeps me on my toes if nothing else! Sending hugs your way
Your videos are so grounding and human and relatable. It's just so lovely to listen to people going through similar things (but not so lovely about all of your lows). Your positivity and attitude are tremendously inspiring so thank you! Wonder if you've ever thought about getting a wee hypo dog for some company/help when low?
Ahhh Izzy that's such a generous comment thank you so much! I absolutely hear you, it's such a comfort to know we're not alone but it's also sad to know that we're all facing these daily challenges. I've definitely considered getting a pet in general for sure, but at the moment life is quite up in the air and I hope to be travelling again soon - fingers crossed once settled! Do you know anyone with a hypo dog? I can't say that I do! Hope your BGs are being kind to you this week x
I felt every word of that! I've lived alone throughout diabetes, like my independence too much. But I know that dead of night hypo, when the entire world is silent, and no amount of eating the entire contents of my cupboards will shift it, and you have that brief moment of fear. I hate feeling that way and no explanation as to why it's so low doesn't help!! Thankfully it doesn't happen often, and I can dust myself off and move on, but hearing your story of similar experiences definitely helps. Guess we're not so alone when we're alone (if that makes sense?)
Betty! Oh you describe it so well! The minutes between taking in sugar and it kicking in feel like an eternity... and then the worry comes of 'have I overcorrected? Oh balls, I've definitely overcorrected...' Annnnnd on it goes! I so appreciate you sharing your experiences - we're ABSOLUTELY not alone in being alone! That vulnerability really hits different in the dead of night doesn't it? Sending you the biggest hugs, I hope your BGs are being kind to you this week.
@@JenGrieves thanks Jen, hope you're having a good week too X
Y no recent activity?
Hi Jen as a T2D I understand your frustration. Diabetes is like a Pandora’s box.... always keeps you in check.
I also had one of those inexplicable three hour night time hypos recently. They suck and I felt and thought everything you described there! I almost called an ambulance but thought I would look really stupid if it skyrocketed by the time they got to me…so I called my mum instead 🤣
Oh Jonathan, there is nothing wrong with calling your mum! 😂 I know what you mean, you know at *some* point the numbers are going to move, and likely very dramatically too, and then it's all over as soon as it begun. Such a rollercoaster! You definitely wouldn't have looked stupid though; we've got to keep ourselves safe. Hope you're having a better week of sleep this week!
My body also reacts the same way to hot weather lows and post exercise highs. I have been living with this disease for 38 years and the amount of information we get and know has been so helpful to juggle it all.
Wow 38 years is a lot of juggling, respect to you! I'm definitely more knowledgable than I ever have been, but I also know that I'll never stop learning and there will always be days when things just don't make sense. I hope you're having a steady week, thanks so much for watching :)
Jen, I spent that whole episode nodding and wryly laughing along with your experiences, which I've shared. I also live alone & hate it when the "Am I safe?" question seeps into my brain. It's the sudden illogicality of it which is most frustrating. One day things are going along quite nicely then Wallop! And to top it all, just when you need to think really clearly, your brain turns to mush...... Glad you are feeling better.
Ahhh, I'm nodding to this whole comment! Totally with you, I get very frustrated when those questions start to creep into my otherwise very independent brain; and it's always when my blood sugars are at an extreme end of course, which just compounds the feelings entirely. Hope you're doing ok, thank you so much for watching x
This, absolutely. I'm almost 60 and love living alone but these long nights of wondering what's next can be disheartening. hypos are the worst. Thank you for the videos!
Thanks Jen, thought just me as had that other week. Also live alone and now on Libre 2 so getting alarms and why do they happen at 2 or 3 in morning. Can't do the basal changes as on MDIs but considering a pump as on MDIs can be issue in this changeable odd weather, especially in Highlands. Had to explain to non diabetic colleague about the weather causing issues and not convinced they believed me. Am considering a pump, but will probably have to self fund as normally "too controlled". what a fun condition this is. 🙂 Keep safe Jen and thanks for sharing as means a lot. ❤️
Hey Rob! How are you doing? Thanks so much for such a generous comment. Those Libre 2 alarms are INTENSE! I found them a bit too much of a shock, especially in the night, but I'm so happy the option of alarms is now there for people who want them. Argh the 'too controlled' justification is so frustrating! It shouldn't be an obstruction to having access to improved technology. Would you get it under the NHS or in the country you're in? There is a justification under the NHS around 'fear of hypos', which cannot be disproved, and should qualify you no matter what your control is. From these comments it's very clear that a lot of us have a serious fear of hypos - it's just something we've had to learn to live with, like so much of this condition. Take care
@@JenGrieves I must admit tend to turn the high one off at night, low one is reassuring though. thanks to weather having BG all over the place. In Scotland so may investigate more, but otherwise may stump up cost, other thing they don't realise is how many jabs sometimes to keep that control. Definitely a pin cushion at times lol. Still doing research on options if do pay want to make sure right choice for me. Keep up the great work Jen.
Yep the basal profiles are Amazing! My tandem ranges from .1u per hour from1-4pm, all the way up to .7 for a few hours(1am-4am. Probably 9 variations throughout the day.
What a lovely person.
oh ya been there. jusr this week i put in a new dexcom and it takes 3 days for the numbers to jive with finger pricks. had a trip from hell many years ago and my bs wouldnt go up. hours if it. it is good to tell these stories.so many people say Oh you look so good. guess how come I want to say. it is a 24 hr disease and never easy. so glad you made it through it all. WE NEED YOU. love Wendy
Hi Wendy! Hope you're keeping well? You're so kind to say such lovely things, I'm sorry to hear you've had some of these experiences too. I guess they're inevitable over the years but they're certainly not ones I want to keep repeating. You're so right it's 24 hours, 7 days a week and we're all pretty amazing to keep on moving forward. Thanks so much for watching, sending you big hugs! x
Thank you I’ve been there more often then I wish, along with the feeling unsafe. HATE IT 😏yet I’m alive. I’m glad your here to help others to ❤️🩸relate on UA-cam👍🏼😃👍🏼
Thank you for sharing your experiences Sarina. I'm so sorry you've had those feelings too - but it is helpful to know that we're not alone in this. I find they're made worse because of the erratic blood sugar too, so it compounds those vulnerabilities which I just really dislike! Hope you're feeling safe and your BGs are steady at the moment. Big hugs to you!
I appreciate your words Jen Grieves. 💛👍🏼🩸
Late to this vid. I'm 1 Yr diagnosed this year, I'm 33 and had a mother who was type1. I don't know how she did it, it is so frustrating and always feels like you're doing something wrong. So good to hear I'm not alone in this struggle
Oh bless you, you must have felt truly rotten through all that 😔 I have been the opposite...heat appears to make me run high 🙄 I'm starting on a pump in a couple of weeks...I'm looking forward to being able to have different profiles to deal with these idiosyncrasies x
Hi Shirley! Thanks so much for your comment and for sharing your experiences. I've certainly had times where heat has sent me skyrocketing - it's all so tricky to predict isn't it! Have you started on your pump? That's super exciting! Temporary basals have helped me prevent so many hypos, and the accuracy of the insulin doses blew my mind at first - I went from whole units to 0.05 increments! I hope it's all going well for you - it took me about a month to suss it out but then I never looked back. Sending you big hugs!
Hi Jen, yes I've started on my pump now (TSlim) 😊 Been on it about 3 weeks and I'm slowly getting to grips with when I can use a temp basal and the basic mechanics of the pump. All been a big adjustment and I still feel a little overwhelmed by it and changing sets etc. Only had diabetes just over a year, so I'd just about got my head around that and now it feels like I'm starting all over again! But it's definitely better than injections and I'm sure I'll get used to it eventually. Thank you for sharing your experiences, I have learned so much from you 💜
Hi Jen ... thanks for sharing your story. What to say ... it seems quite normal to me .. that s one of the reason why I dont rely on what many of us call the magical formula insulin to carbs ratio...it wouldnt work for me at all!! insulin sensitivity keeps changing ... for instance in the last few weeks I ve had an impressive insulin sensitivity and I ve been eating up to 300 g of carbs a day with 35 insulin units a day ...I m 73 kgs and do some sport but not too much... to me a low fat diet along with plenty of sleep increase my insulin sensitivity and for some reasons I just like it ...a Hypo is easier to correct than a hyper
Hi Stefano, thanks so much for your insight, that's super interesting to hear and I completely agree! As I'm on an insulin pump I adjust my temporary basal rates all day long because there is no perfect basal setting that works for me from one day to the next - too many factors affect my insulin requirements and I like that the pump allows for that. Sounds like you're doing well which is great to hear as we all know how much effort that takes! Hope you're having a great week.
This was good to hear, really bad couple of weeks with my diabetes- bad night hypos then massive rebounds
Bad low too whilst driving-now pretty sure I’m going to lose my licence
Worst control I’ve ever had having had diabetes for 24 years
Oh, Jen! Hugs! Diabetes can be the absolute worst!
It absolutely can! But on we goooooooo... 😊 Hope you're keeping well x
Hi Jen thanks for sharing your experience with a bad week of T1. I have been T1 and on Omnipod for over 10 years and had similar incidences similar to yours. It was far worse on MDI as you have no control over how much insulin is still active in your body. I agree with other comments that using DIY Loop is a game changer at least for me. Its not FDA or CE mark approved and you do need some technical skill along with a Mac, iPhone, and Rileylink to make it work. I found it was totally worth the effort as my occurrence of highs and lows improved dramatically. My A1c is a now 6.7 with Omnipod/DIY Loopl and maintained that number when my insurance caused me to switch to Tandem Tslim X2 with Control IQ which is FDA/CE mark approved. I can sleep knowing the pump watches over me and will stop insulin delivery for a predicted future low. I still occasionally have nighttime lows but they are not nearly as hard to correct due to IOB being much lower. I have found Loop and Tslim X2 very similar in control benefits. I had never used a tubed pump before Tslim X2 so that was an adjustment that didn't take too long and weighed against the benefits was well worth it.
It's part of the game
It happens to me a lot my Bgs are shit a lot of the time cause I need completely different basal rates and I don’t get a new pump till April GRR
In the heat I get Hypos always as I live in Canada 🇨🇦 and it happens to me every summer
Hi Debbie! I'm sorry to hear about the challenges you're facing, that must be very frustrating. Are you currently on injections? I hope you're able to keep well and look after yourself. Thank you so much for watching x
As soon as you said that it involves heat I knew what you meant I will forever remember further Ventura as I dipped in 1 day no joke 14 times I by the end of the day was crying while eating a bag of sweets I don’t want anymore it ended up I had to do no insulin throughout my trip when I got home up to hi as soon as I got home I am rubbish in the summer so I know how you feel so much xx feel bad for you xxx
Definitely relate 😢 except when my T1d goes off the rails I go HIGH…my graph for 24 hours makes a roller coaster look fun! I’ve learned I have cycles of increased or decreased hormones (not sure which) that cause this about every other month. I have a setting for that called high-mones! Nursing low in middle of the night though rarely ever happens to me but when it does it’s definitely my most vulnerable time I catch myself thinking is this when I just fade out once and for all but then my Alarm goes off like a fire engine siren….thank god for this technology.
I have diabetes type 1 from 2020 my age now is17 and I always think to just surrender to diabetes and do not take treatment I always tell my parents how it’s going with me but they don’t understand me and they tell me you don’t have family to take care of it and that I’m a spoiled boy
I hear you Jen. Luckily I have a libre and miaomiao to let me know. I have been considering a pump because it may help as I don't feel rubbish but do stress over my highs and lows. Not sure heat for me affects me being in Australia but the long CoVid lockdown is certainly causing diabetes stress. Like you comments on running, prebolus and insulin. I understand your pain but a positive of dealing with T1d I feel builds resilience for dealing with the pandemic and other issues.
life changes changed part affect doesnt have to win take over stop achive dreams stop doing what want to to it wins if let it
I really here you There, I get my pump on Tuesday to try and stop these nighy time highs, I go to bed at 9mmol and wake up at 22mmol, so sick of them and fast acting insulin just dosent wanna work, feel tired crap and everything else dosent care, but hey that T1D for ya......
Keep doing more videos on Libre what you on ?:)
This is super helpful to hear. I'm lucky to have adult onset, so have not been dealing with this my whole life. I discovered my type 2 was a miss diagnosis when I had DKA and sepsis and nearly died. So I'm only a few years dealing with this and often feel lost and confused. Not in a sad way, just a bit lost and confused. This made me think of a question that hadn't occured to me before. Do basal insulin needs change with the seasons. I'm on injection not a pump, but do you know you'll automatically move to new numbers with the seasons? I've been mistified as to why my needs will suddenly change after months of stability and nothing in my life to explain it. Many thanks, N
Oh my goodness I'm so sorry that happened to you! Adult misdiagnosis of type 2 seems to be far too common, that must have been such a scary time for you. I'm pleased you've got some answers now. I'm not a doctor but I would say yes absolutely the change in seasons would affect me, as does stress, sleep, my cycle etc - basically anything hormone related! Would it be helpful to chat through with your diabetes team? They should hopefully have some insight. Take care x
I understand how you feel! I was also expecting it with the heat but for the first time, I've been ok sorry! :-) don't want to rub it in! :-) hope you feel better soon and have more long runs ! My temperament is terrible if like the week you have had! And like I keep saying we can never judge insulin it as its days to us or week I personally would have binned the insulin!
Haha you're totally fine, you've got to take those wins when you can! This condition often keeps me guessing - things I think will go wrong won't, and things I think I've got sussed go completely haywire! But hey, keeps me on my toes I guess... :) Hope your BGs are being kind to you today!
@@JenGrieves Will they ever be fine :-) ? :-) we can only keep trying. Hopfuly Dexcom comes back on so I can go for a cycle in the sun !
Happy World Diabetes Day Jen you doing anything to support it 🇬🇧💉🧸🎗⚕️⚕️⚕️
Anyone who's likely to be negatively affected by some unpleasant realities probably shouldn't read this.
A couple of years ago I lost a close colleague to type 1, after she'd been diagnosed in her mid twenties. I say "lost to type 1" because she simply couldn't handle it, and by that I mean she couldn't handle exactly the things Jen is describing here. For the benefit for anyone who hasn't at least been around someone with type 1, the first thing the medical professionals do to recently diagnosed people who go out of range is a stern lecture about the risk of all sorts of horrendous complications, as if that isn't in the forefront of one's mind at that point. I witnessed them do that and they are not gentle about it, despite the fact that perfection is impossible.
After tolerating it for a bit less than a year my colleague decided she'd had enough. Because it's so hidden and people put on a brave face, type 1 is easy to overlook. The reality is horrific beyond belief and anyone who manages to put up with it long term has my undying respect. I think many medical people mishandle it badly and sometimes that has very serious consequences.
on libre now happier brave steing 🤘🤘🎗🎗🎗
Sounds like your basal insulin is way too high. I had a 2 hour hypo on my Tresiba after working out. If I don't exercise my need is 13 units of Tresiba, 7u at night, 6u in the morning. If I workout I only need 2u at night after exercise and 3u in the morning. I like you had easily 60g of carbohydrates at night a full roll of glucose tablets about 48g of glucose and a small granola bar the 100 calorie snack type. I don't normally eat carbs, generally I eat less than 25g a day, that night alone I ate 3 days worth of carbohydrates and I felt horrible. I got heartburn for hours in the morning. Even after the 60+ g of carbs I woke up in the normal range around 4.6, but without proper sleep.
Oh what a stressful experience for you, I'm so sorry you went through that! Thank you for sharing your experience. As tough as it is to know that others are dealing with these challenges, it's helpful to know that we're not alone. It sounds like you have an amazing understanding of your condition, that's very inspiring to hear about. Thank you so much for watching.
@@JenGrieves I think fundamentally the two most important questions a T1D should be able to answer about their illness/treatment plan should be:
1. How much 4g of glucose (carb) raises my blood glucose?
2. How much 1U of insulin drops my blood glucose perhaps also applies to the basal insulin as seen in my case.
For me 4g of glucose raise my blood glucose 20-22 mg/dl. 1U of Humalog drops my blood sugar 53 to 56 mg/dl, basal insulin appears at least during the night that 1U will drop my glucose 31 to 33 mg/dl. Ex my basal take at night is 7u , if I take only 6u I tend to wake up at 115 mg/dl, if I take 7u I expect to wake up 84 to 82 mg/dl. If I take 8u most likely my blood sugar would drop below 50 any time between 2am to 3am. Kinda crazy right?
This is why I need a CGM. I would prefer the lows if I had a cgm to alert me. I run high every night because I'm a heavy sleeper and have to much fear of dead in bed. Right now my lows scare me and sneak up on me so I take almost half of my prescribed insulin at night so I won't go low. Without a CGM I feel like I am always chasing my blood sugar instead of being on top of and or ahead of it. I'm starting to chart my time in range but with only 4 blood strips a day for my glucometer on insurance.... Welp yeah. No CGM no pump no money. I feel that's how the pharmacy in America puts the *just die* in diabetes.
I completely understand how scary and frustrating that is, I'm so sorry for what you're going through. To know that the technology exists but to not be able to access it is horrific, especially when it's affecting your life as you describe. I know it doesn't help, but sending a virtual hug across the pond in any case. Take care
Try taking in more proteins for better stability.
Better laugh about it
world life without diabetes didnt exist yey 🎗🎗🎗
The day I came across Dr IGUDIA UA-cam channel was the day I started living a more comfortable life again after using his herbs medication in curing my Diabetes disease
World Diabetes Day Monday 14th what you doing :)🎗🎗🎗
Too much basal maybe?
Yes, I did bring my basals down around 20% later in the week and it helped. But also just one of those weeks in the mad world of type 1! Thanks so much for watching :)