I know what you mean about the forum support. I definitely do better when I talk about things but feeling like a "bad diabetic" I buried my head in the sand and am only just getting a real grip on things again.
Besides the forum have you looked into any counselling/mental health services near you? Lots are online now and I found they can help you process things. Good luck!
Written by Stephen Ponder and from the sugarsurfing.com website, this extract is what all newly diagnosed type 1’s should be told, please share:
Type 1 diabetes often arrives totally unexpected. Shock, denial, fear, and sadness are usual first reactions. For most, the maelstrom of negative emotions swirling around the person and family will significantly influence what happens next. The following are the top 5 things I feel are essential to convey early into the diagnosis: if not at the very first encounter in the emergency room, hospital, or clinic. These points are based on 35 years of caring for hundreds of newly diagnosed persons with type 1 diabetes of all ages. They are tempered by my own 55 years of living with type 1 diabetes. They are not necessarily in order of importance, except for perhaps the first.
1. No one caused this. Many persons harbor feelings of guilt that something they did (or did not do) led to diabetes. Type 1 diabetes is the result of an autoimmune action taken against the insulin-producing beta cells in the pancreas. No acts of volition or omission cause this to happen. That must be made clear from the start. There is no room for guilt and shame in diabetes and it is vital to dispel this at the beginning. I aim for this to be the first thing I teach. Often there is an audible sigh of relief after this information is shared. This makes it easier to introduce the other key points.
2. A normal life is the goal. Life with type 1 diabetes has never been brighter. With ongoing support and diabetes education, all of life’s opportunities remain within the grasp of persons with diabetes. When complemented with emerging tools and technologies, the person with diabetes should expect a fulfilling life and career in whatever field of endeavor they seek. Barriers still exist in a dwindling number of professions, such as active combat military service. The future has never been brighter for the person or child with type 1 diabetes to excel in whatever life path they set upon.
3. There is no good or bad. Life is a never-ending series of grades, ratings, and report cards. Diabetes can easily get become overrun with self-judgment or the unnecessary judgment of others. No matter how well meaning, there is no morality in diabetes. This is a metabolic disorder not of a person’s choosing. It requires knowledge, experience and understanding to manage it from day to day. Diabetes care is a process, not an outcome. Since diabetes is overrun with numbers, it is a seductive trap to use words like “good” and “bad’ in association with these, either with oneself or in front of loved ones with the condition. Aim to avoid using “good” or “bad” to describe diabetes or its management. Blood sugars can be “in range”, “high” or “low” and A1C results can be “in target” or “out of target”.
4. Diabetes care is defined by one’s choices. It is said the average adult makes 35,000 discrete choices each day. Over half of these choices are habit-driven (i.e., we are not always aware of them) and the rest are consciously made. But the total number remains staggering. Our everyday lives are defined by these choices, both those we act upon and those we do not. Acts of omission weigh heavily in the world of diabetes. Just imagine the effect of not taking a scheduled dose of insulin, or not checking a blood sugar value before a critical activity. What about not eating a meal after taking a dose of rapid-acting insulin? Choices are the currency of effective blood sugar self-management.
5. Do not compare yourself to others. You are unique. We live in the post-social media world. Many of us constantly share intimate details of our everyday lives and innermost feelings online with strangers through online platforms. Whether through a post, image, or video clip, we aim for others to see us the way we wish them to, and vice-versa. The diabetes online community can be invaluable as a means of support for persons with diabetes. But it can also be viewed by some as a yardstick upon which we measure ourselves. This leads to unfair comparisons, and at times envy. It can also be a source of bullying and shaming. Everyone’s diabetes is different in thousands of ways. Avoid comparing your life (or the life of your loved one with diabetes) to others. Like the good-bad trap, comparisons typically lead to jealousy and frustration.
Hello @Lynnzhealth
It depends on the exercise for me too - digging or mowing drops me like a ton of bricks but a steady run for 40 mins keeps me flat. It’s best not to have any quick acting insulin onboard when you do more strenuous activity or have a carby snack beforehand and stop every 30 mins to test and check, exercise is good for mental well-being though so always make sure you have a plan before you do anything so you are prepared.
I totally understand how you are feeling. I was first (mis)diagnosed as Type 2 when I was 69 in 2017. I totally changed my lifestyle (Keto) and managed to keep my A1C in the normal range and blood results were great, with no meds and no insulin. Suddenly, without warning, I went into a Diabetic Ketoacidosis episode and ended up in the ER in bad shape. There I was given the specialized test and I turned out to be T1 at 71. Unbelievable. I went through every emotion imaginable and had to learn everything all over again. Because the hospital doesn't understand just what diabetics should be eating, it totally threw me back into my old ways. It took me at least 9 months to get back on track. Now, I'm following a very low carb, protein, veggie way of eating. Trust me, many times I want to throw in the towel, too. I did not realize until just recently (nearly 73) just how badly it affected me for the past two years. I do have ups and downs with BG, and it boggles my mind. I find if I eat more protein my BG is better. My last A1C had come down from 7.6 to 7.1. Needless to say, my Diabetic Educator told me that that's a good range for me. No, I don't think so. I follow Dr. R. Bernstein's diabetes solution, other doctors who also have diabetes and know my A1C can be lower than that. She also doesn't like the Keto/low carb way of eating. I shake my head sometimes that the health professionals still think the old way is good. I can't believe the number of people I see where I live that follow their way and end up with amputations, heart problems and kidney dialysis and then die young. That is not for me. I only have one kidney and can't afford to tamper with that. My DE also told me not to worry about complications because they won't happen for probably 20 years. I couldn't believe she'd say that. If I eat carbs like she suggested my BG shoots up very high and it's hard to get it down. So, I don't do what she suggested. I also cook and bake following the Keto/low carb recipes in Dr. B's book and online from other followers of his and low carb lifestyle. It is definitely a roller coaster ride, however, I am learning what I need to do to keep me safe. Especially when I'm walking the dog, doing yard work or shovelling snow, etc. I also have data sheets where I keep track of readings before and after meals and the amts of insulin I take for each. That really keeps me on track. I was prescribed the glucose monitor/sensors because of my age, I suppose. I LOVE it. I really, really hope that you can figure out what you can eat or not eat and continue to take insulin. You need that to survive, being a T1. You are not alone here, although many days it sure feels like it. Take care and I hope you can figure out what you need to do. HUGS!!Since being diagnosed with type 1 and having insulin injections I gave put in a phenomenal amount of weight. I’m blaming the insulin as my Carb Manager app says I very rarely go over 1000 calories a day. I need to lose weight as it is making me thoroughly miserable. I hate having diabetes type 1. I’m seriously considering not eating carbs and not having insulin. I know what will happen as before diagnosis I was hardly eating anything as food tasted foul but my weight was good. Then diagnosis, but my blood glucose is rarely within range it’s nearly always high so have to have large doses of insulin. I have spoken to my diabetes team so often but I still don’t understand what the hell is going on with my rotten body..
If we are advised to nit have fast acting insulin before exercise as exercise reduces our glucose levels what is going on? If our body doesn’t produce insulin how does the glucose get into our cells without insulin? I just don’t get it.
If we are advised to nit have fast acting insulin before exercise as exercise reduces our glucose levels what is going on? If our body doesn’t produce insulin how does the glucose get into our cells without insulin? I just don’t get it.
Since being diagnosed with type 1 and having insulin injections I gave put in a phenomenal amount of weight. I’m blaming the insulin as my Carb Manager app says I very rarely go over 1000 calories a day. I need to lose weight as it is making me thoroughly miserable. I hate having diabetes type 1. I’m seriously considering not eating carbs and not having insulin. I know what will happen as before diagnosis I was hardly eating anything as food tasted foul but my weight was good. Then diagnosis, but my blood glucose is rarely within range it’s nearly always high so have to have large doses of insulin. I have spoken to my diabetes team so often but I still don’t understand what the hell is going on with my rotten body..
OK, now I'm really upset. My laptop is not working properly and the post I had just written disappeared. I will start again. I haven't been on this forum for about two years. Today I decided to check in and saw this post on the 5 things I need to know. I thought I was managing the emotional part pretty well, however, it seems I'm stuck in shock, fear, sadness and anger. I was just asking myself this week what did I do to get diabetes? I follow the LCHF lifestyle and get so frustrated when my BG goes up even though I'm not eating carbs. I so want to go out and eat something really 'normal', like a great big order of chips. I was (mis)diagnosed with T2 in March 2017, at 69, went on LCHF and everything was going well until a severe bout of DKA knocked me down in May 2019. I was then diagnosed T1 and am now on insulin. I'm now 72. My DE said I'm on the lowest doses that she's seen and doesn't understand when I tell her I'm not eating carbs. No sugar, no regular flours, nothing. I feel sometimes that I'm alone in this battle. I really need to reach acceptance so I can get rid of the sadness and anger, before it kills me. And, I know I need to be more regular on here because I need the support that I can't seem to find around here. I would really appreciate some tips from folks who are or have gone through all these emotions. Thanks. Stay safe and stay healthy.
We could be. lololol Scared the heck out of me as I'm sure it did you. I definitely wasn't prepared for that. I am still confused. I was on very low doses of bolus at meals, however, this past few months it seems I need more, so I've been experimenting. I eat very low carb and when my BG goes up higher than I want, then I get frustrated. For instance, if my BG is 7.7 before lunch and I dose 1.5u and 2 hrs after my low carb lunch it is 13.7, I'm frustrated because that is out of range. I really want to be more consistent and stay within range. So, does that mean I didn't take enough? And, if my BG before lunch is 9.3, I dose 2.5u and 2 hrs after lunch my BG is 7.7, does that mean I dosed too much? My A1C in Sept. was 7.6. I want it to be lower, as in around 5. I live in Canada and we do the #s differently. And, if I don't eat as much protein as I need, would that make a difference? I have been reading Dr. Bernstein's book and trying to keep my BG down to avoid all the complications, however, I feel like I'm missing something. Any help would be appreciated. Stay safe and stay well.
I'm glad your sister has your support, DanutaMorks. I have to say with all the ups and downs that my latest A1C was 7.1. YIPPEE! As long as it keeps going down I'm happy. I have to get back to reading Dr. Bernstein's book because things slip through the holes in my memory. And, I have been eating more protein and that helps a lot. A funny thing, though. I'm not sure if anyone else experiences this, however when I do heavy exercise, like shovelling, my BG goes up. I can walk along with my dog at a less strenuous pace and it goes down. I have been feeling better this past month, so that's a good thing. Good luck to all in this journey. Stay safe and stay well.
I am on the Libre flash glucose monitoring, and have just moved onto Libre 2 which has an alarm built in, but is presently reading very high for some odd reason I think. Yesterday morning it was 12.1. It has not been this high since I was first diagnosed so I am shocked.
One thing that comes to my mind is that I try to ensure my BG is around 6 mmols before having any meal. If it is higher, if I can, practically, I will wait it out until it goes down a bit. Lunch for example I would usually have around 12, but there are times when I have postponed it as late as 14.00. That is of course not always practical, but if I can I do postpone. For Low Carb regimen, as I am on (mostly), I usually only have 1 unit a few minutes before eating. My basal at this time is 4 units. I think a minimum of animal protein works for me, particularly in the evening. If I have too big a portion of say, salmon, I find my BG can go rather high over night. I am working my way through Bernstein too!
Well, Lynnzhealth,
Snap!!
I am now 69, and I was also misdiagnosed with Type 2 in 2019. I also ended up with DKA and was rushed into hospital. I am also on low doses of insulin and on LCHF, and my last A1C was 47. But like you sometimes my BG goes high nevertheless. I am on the Libre flash glucose monitoring, and have just moved onto Libre 2 which has an alarm built in, but is presently reading very high for some odd reason I think. Yesterday morning it was 12.1. It has not been this high since I was first diagnosed so I am shocked.
I also struggle with depression and anxiety and a mood disorder! We seem to be in very similar situations?!
We do seem to be. I'm going to check my family tree to see if we're related. lol I don't think I'm getting enough insulin, and I think I'm out of the honeymoon phase. My last A1C was 6.8 and my DE wasn't very happy. She thinks because of my age, etc, that it should be higher. Nope, because that's when complications start. I might be 73, but I still don't want to lose any limbs or have heart problems or whatever. She also does some algorithm thing and has me on such low doses that I go high if I look at food. I don't understand why she does that when she sees the records I keep. It proves that the low doses do not work anymore. She said I keep records better than anyone else she deals with. So why can't she understand? I would rather have a DE who actually has T1D so that they know exactly how we feel on this rollercoaster. So, I adjust my insulin depending on how high my BG is before meals. And, I've found out this summer that humidity and T1D do not play nice together. I walk the dog early, however, I've had to cut the walks short because my BG plummets quickly. I carry chocolate and dexcom with me. Thank goodness I have the Libre Freestyle monitor so I can check my BG when I'm out and about. And, I have to cut the grass or weed when it's not quite so humid. It bugs me that the things I could do in one day I now have to divide up. Of course, age might have something to do with that. I cooked some chicken breasts and steak in my air fryer this morning to wrap and freeze for meals. If I don't do that I don't eat enough protein. I'd rather sweets. My BG still shoots up sometimes after meals for whatever reason. My first reaction is - what the HECK?? However, I'm slowly learning not to panic. I hope both of us can get as good a handle on this as we can so we can live a longer, healthier life. Take care and stay safe.
Sometimes T1 blood sugars can be unpredictable (eg illness, fault with insulin or pen, stress, overuse of injection site,...) but I would also strongly recommend that you double check your sensor result against a glucometer if you are surprised by the result. They can be inaccurate.
There is also the possibility that if you were only diagnosed in 2019 you are still producing some of your own insulin, and that amount has recently gone down.
I find what you say about animal protein at night really interesting.
I have noted the exact same and I thought I was just missing something else. Thank you for sharing that.
Yes, I had a similar problem with the DE actually encouraging me to let the BG go UP after meals and not worry. Well, like you, I want to avoid complications later if I can, so I have also been quite meticulous about keeping BG records. Since going onto Libre 2, which indicates higher measurements than my Finger Prick results, and finding on the first morning after the new sensor that my BG was 12.1, I panicked. I cannot remember my BG ever being as high as this since I was first diagnosed in 2019! so I have upped my Levemir to 5 units each morning. One Consultant said categorically that I simply would NOT have complications because I was controlling my BG so well....Yet now I realise that Libre 1 was very much underestimating my levels! The medical professionals do not yet seem to understand the peculiarities of Libre, and I suppose it is up to the patients to teach them! They did not seem to appreciate or believe me when I told them it was under-estimating my BG....
Yes, I find too that I have to limit, and organise my day according to how my BG is doing, and what I eat. I have salads most of the time, and that means I can keep BG in reasonable order, but if I have a ready meal - twice a week usually, just for variety ---, then I have to monitor it much more closely as it tends to shoot up or down and is quite unpredictable.
Also, like you, I am learning not to panic, especially recently with these , for me, anyway, very high readings - in the 9s 10s, and one 12. My last A1C was 47 which I was disappointed with as Libre 1 told me I was 40, so add 7! This was frequently the case in the differential. I could not understand why the disparity, but now it becomes clearer that Libre 1 was reading low, as now, Libre 2 is reading High. So for my next A1c, hold your breath!!
Goodness, we do sound like we're having the same issues. If I think my Libre is too low/high, I check with a finger prick. Yesterday, my a.m. BG was 8.8, so I dosed 5 of Tresiba (long-acting) and 6 of Humalog. Two hours later it was 4.2 (while I was walking the dog). Then this a.m. my BG was 8.8 again. I knew I was taking the dog for a walk, so I dosed 5 of Tresiba and 5.5 of Humalog. Same exact breakfast as yesterday. Two hours later, my BG was 11. I can't figure out why it does that. So, I did some heavy yardwork and came in and checked, and my BG was 3.1!!! It is slowly going up now. I find it takes longer to get the BG down than it does getting it up. And, I read an article, on here I think, that having the Bariatric surgery makes a difference in the way/speed food is digested. So that affects insulin/glucose. I seriously want my BG to stay within the target range - 5-10. Maybe I'm delusional.
I'm bad about eating enough protein, but I am doing much better this week. I do like some salads, mostly Chicken Caesar. And, lately I've been having lightheaded spells when I get up from a chair. I just read a post about that on this site today. If I keep doing that I will have to go see my Doctor. If it's not one thing, it's another. T1D certainly keeps one on their toes.
Some days after all the decisions, the ups and downs and the stress of everything, I just want to crawl in bed, pull the covers over my head and stay there. Alas, I can't because I have a dog and cat and they wouldn't allow it. With that, I better get moving here. It's great talking with someone who is experiencing the same issues. Have an awesome weekend. Stay safe and stay well.
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