Type 1 diabetes

Hi there
I am trying this site not so much as a weight loss tool (although a little loss would be a bonus) but more as a way to track carbohydrates as part of my diabetes management and make me a bit more accountable with food!
I am keen to hear from any others in this situation? I have Type 1 diabetes and am struggling to get the motivation back and look after myself well.
Cheers

Replies

  • Hi, I am doing exactly what you have just joined to do! I started about a month ago. I've found myfitnesspal really useful to monitor closely my carb intake, I've also used it to record and motivate me to exercise more. So far I've reduced my novo rapid after meals off the back of a reduced carb intake, and reduced my lantus too. I am experiencing more hypos :-( as I try and master the changes needed to my insulin levels. All looking good so far though!, Have you been on DAFNE?
  • Welcome. I'm not in the same situation as you, but am more than willing to lend my support. Feel free to add me as a friend.
  • ealr1
    ealr1 Posts: 7
    Hey that's relly great to hear! What is Dafne? I am on Lantus and Humalog and need to start at square one with actually counting the carbs at one meal as I really have to guess - sometimes that works and sometimes that doesn't.
    I too hope the exercise thing will be cool to record. Think I might need to get a phone with apps so I can be more mobile with the full use of the carb counting.
    Stay in touch.
    Cheers
  • Hi, DAFNE stands for Dose Adjustment For Normal Eating. It's a one or two day course run by "some" health authorities to teach you how to carb count and safely adjust your fast acting insulin accordingly. It is good, ask your GP if they do it in your area (I presume your in the UK?).

    Good luck. Add me as a friend if you want to stay in touch. Always happy to try & answer any questions.

    Watch the old Hypos! I'm struggling at moment with Hypos about 2am after exercising at around 6pm, sure I will get it sorted :-)
  • 47 year old female here. I also joined as a way to better track carbohydrates as part of my Type 1 diabetes management. I have been Type 1 (actually, my endocrinologist calls me "Type 1 & a half") for about 7 years following pancreatic surgery (partial Whipple procedure - 30% of my pancreas removed due to benign pancreatic tumor). I am currently on Lantus and Humalog but am actively pursuing moving to an insulin pump. In order for me to do that, I need to get my numbers under better control. My A1C would often be 9+, but my last A1C was 8.0. By no means good, but at least I'm moving in the right direction!
  • I'm intrigued that they want you to get your numbers down before they consider a pump - isn't the whole idea that the pump helps you get better control? For me, I don't think the pump will make a lot of difference. The Lantus is such a good basal background and then the issues i have difficulty with (ie- food selection, motivation to exercise etc) are not going to be helped by the pump. However, always interested in new ways of looking at it -what's the idea for you for a pump? My HbA1c used to be in the range of 7.0 and when I was pregnant with my 2 children, I managed to get it to between 5-6%. wow, the power of motivation! Unfortunately it now sits mostly in the range 8.5-9% which is not great as you know. Well done on getting yours to 8%.
  • Are you on Lantus? I was forever having troubles with early morning hypos (5 or 6am) and then they tried me splitting the dose from 1 daily dose to 2x smaller doses and that has made a massive difference. No more annoying hypos waking me up!!:smile:
  • Chandra_W
    Chandra_W Posts: 9 Member
    Same here for me. I'm 26, and have been Type 1 since I was 12. Currently I'm on the pump, but I'm also on Metaformin (among a bunch of other prescription drugs) because of a high insulin antibody. My Endo has already warned me that losing weight (while necessary) will be a uphill battle because of ALL the medications I'm on. So I figured I would just start by tracking carbs, and tracking calories will just be a positive side effect.

    Not to be a Debbie Downer (because I don't want to not motivate anyone) and not to be fishing for compliments or a pity party- but my biggest problem isn't the weight, or whatever, it's the FACT I'm diabetic. I hate it so much, it literally brings me down whenever I think of it. I try to think positive about it...but my diabetes has caused me so much self-hatred, depression, and anxiety I don't think I'll ever get to a point where I'm "okay" with it. I'm not to the point of "ignore it and it will go away" - because I know that will only make things worse. I just, despise every time I do anything diabetes related. SO - I know that is the biggest hurdle with weight loss or taking care of myself or whatever. Anyone else feel like this?
  • My father is a diabetic and has lost 20 some lbs in the last month simply doing healthy protein shakes for breakfast and lunch ..then eating a fairly healthy meal! The doctor has cut back on alot of his medications (insulin,etc) and was encouraged by the results he's having from using them!

    I can also attest.. im not diabetic but i was 235 lbs in april and using shakes as well .. along with doing some standard exercise( treadmill plus play volleyball) i am now at 185(50 lbs) .. and feel amazing!

    Anybody can add me.. ill be happy to talk to you more about which products i used and exactly what i did.. but i just wanted to share my dad's story since it fit the post..
  • Hi DiaBUDDIES I am in the same boat as all of you and here for the same reasons!!! feel free to friend request me and Pm me anytime about Diabetes..or anything else
  • @Kittyiris, definitely can relate. Logging is my biggest issue. It is a daily battle to make a point bec the help I get improves the diabetes management if the team knows what is going on, and if I don't, due to my disliking diabetes altogether, then who wins?
  • I use the mobile version to track all my intake. It helps determine how much insulin I need.
  • Sorry all for my delay in replying.

    ealr1: I initially had the same reaction you did about getting on the pump for better control vs. getting my numbers down before getting on the pump. But in order to utilize the pump most efficiently, I need to know my insulin-to-carb ratio and correction factor (so that the pump is correctly programmed with this information), and the only way to know those items is to manage my numbers better before getting on the pump.

    Why a pump? I’m constantly out of the house at work, dining out and doing sports, so I want to avoid having to give myself insulin injections by yanking out my Lantus (yes, I’m on Lantus) and Humalog in public. With the pump, I just have to test my blood (and the number from my meter is sent wirelessly to my pump) and then enter the number of carbs I’m eating (if any), and the pump does the rest of the work calculating how much bolus insulin is recommended at that moment. And all of the insulin from the pump is short-acting. No more long-acting (which I also split into two smaller doses since I used to wake up high in the morning). The pump automatically gives a small basal amount every hour. And the pump can give more precise units of insulin.

    And the good news is: I started on the pump last Thursday! And so far, so good. It has only been pumping saline so far (while I get used to it, learn to use the buttons, etc.), but it goes live with insulin tomorrow! I will be adding a continuous glucose monitor (CGM) in a few weeks (once I get used to the pump) which will test the liquid that surrounds the body’s cells - rather than blood – every five minutes) so that I can see if/when I’m trending high or low. I will still need to test my blood, but the CGM will give me continuous insight on where I’m at.

    Chandra_W: I’m sorry to hear your feelings about being a diabetic. When I was first told seven years ago that I would have to give myself insulin injections for the rest of my life, I was ticked off. Big time. Why me? But then I watched two of my friends lose their battles with cancer, and another friend become paralyzed from the waist down following a car accident, and I adopted the attitude that at least my disease is treatable. And it forces me to be more attentive to my food intake (which is actually a good thing). So the attitude I have adopted is that everyone has their crosses to bear, and mine is diabetes, which isn’t so bad in the grand scheme of things.
  • piggynugget
    piggynugget Posts: 4 Member
    Hi. Just thought I'd introduce myself. It never hurts to share diabetes tips!

    I've just gone on an Omnipod pump after being on Lantus and Humalog for years. Like some of you I had those pesky 3-4am hypos with Lantus and had to split it. Still couldn't get it stable (HbA1c never been lower than 9%) and still had hypos so been moved over to the pump. I honestly cannot praise it enough!!!

    If anyone has the opportunity to go on a pump, do it! It took me about 2-3 years of carb counting course, carb counting follow up, dose adjusting, pump trial, getting pump funding from my PCT and then pump training. I'm so much more stable now!

    And also use this app to help with carb counting. Another useful app is Carbs and Cals, which is avaialble as an app, book and ebook (got all 3 just so I don't lose it). Doing carb counting I've found I'm quite reliant on having good carb counting tools, because guess work doesn't quite work.

    Treating hypos quickly is something my nurse can't emphasise enough. The longer you leave your hypo, the more your body pumps hormones around to trigger your glucose stores to be used up. You'll get the symptoms, have a load of sugar and then an hour later have a massive hyper. I used to treat my hypo with whatever my next meal was, but apparently that's no good because the food takes longer to bring it up. You need straight glucose. I find Glucotabs the most convenient to carry around, and there's no temptation for anyone (including me) to munch on them.

    Blood sugars are a must as well! I used to be terrible at doing blood sugars (maybe once a month at my worst - teenage years). But now I do them at least 4 times per day. Because you're constantly telling the pump what to do whenever you eat, it doesn't feel like such a hassle doing the bloods. Plus there's only 1 injection every 3 days rather than 5-6 everyday, so you feel less like a pin-cushion.

    Being on injections I can understand your frustration with motivation. Maybe ask your consultant for a different treatment option so you feel like you have more control? Or the nurses? My nurses are brilliant! Hopefully you have good ones too.

    Just for general info: I'm a 27y/o girl, type 1 for 14 years, based South East England. :-)
  • piggynugget
    piggynugget Posts: 4 Member
    Sorry for the epicly long message...
  • Diabetes can be a frustrating and depressing thing. I am 41 years old and have been a diabetic for 26 years. I am currently on insulin pump and have two young children. The best suggestion I have is try not to let the diabetes define who you are. You are who you are and diabetes is just a small part of it.
  • Type 2 diabetic here & I understand how awfully tough we are facing with this lifelong illness. I was diagnosed as full blown type 2 diabetic last 2009 when I was at my heaviest weight. Even though I'm no longer fat, I'm using this site more on tracking my macros esp carbs.

    I dunno if it works for type 1 also but in my case strength training help me a lot in controlling blood sugar since our muscles need the glucose to repair itself after a weight lifting session & also to maintain itself. Since I started getting serious on lifting heavy, I feel much better plus my blood sugar went down from 200+ to an average of 140.
  • keeponkickin
    keeponkickin Posts: 1,520 Member
    Hi,

    I'm a type 1 diabetic for 33 years now. No complications. I have used a pump for about 16 years. Anyone is welcome to add me.
  • Hi everyone so glad I found this post! I'm 25 type 1 diabetic since 3 years of age. Since changing from cloudy insulins about 7 years ago I was put on novo rapid and lev emir through injections, no pump. Going to be completely honest here I didn't give a **** about my diabetes would have days without my insulin and just think I could survive that way... Till I found out I was pregnant! What a reality check I got finding out I was pregnant with a hba1c of 13+! The day I found out was the day things changed and miraculously I got my hba1c down to 5-6% and thankfully and gratefully ended up with a healthy baby. But this was the turning point in my life for my diabetes I now had a child to look after and she was relying on me so from then on started carb counting and got on top of my diabetes and feel so much happier and healthier for it. After putting on a stone though about 6 months ago roughly I decided enough was enough I couldn't bear not fitting in my clothes and looking like I did. Been using mfp and lost a stone now and as we'll as my weight it's made me realise them little bits of food and chocolate I nibble on through the day are having a big impact on my diabetes. I choose healthier foods for my meals and if I have a hypo I use this as an excuse to treat myself with something sweet. I do record it on my app though just so I'm aware of my calories and to get an honest reflection of them rather than ignoring them.
  • Just wanted to say with losing the stone I've gone from 2 injections of levemir to 1 dropping from 60 units a day to 17 and my ratio for my breakfast novo rapid has also dropped from 3:1 to 2:1.

    Really hate to read posts about people moaning about having diabetes, don't get me wrong I know it's frustrating and hard work but we are so lucky to have a condition that can be managed and controlled, going back 50 years it would have been a different story and diabetes would have been fatal!
  • piggynugget
    piggynugget Posts: 4 Member
    Hey ktd1987, I used to be just like that! I was diagnosed at 13 though so already in the teenage rebellion stage, haha. I would skip insulin as much as I could when I realised it was making me gain weight. Discovered a few years after doing that, that it's actually an eating disorder, diabulimia. That made me realise what an idiot I was being... I thought I was being clever beating the system...

    Was glad to hear you had a healthy baby! That bit scares the **** out of me! Especially as I'm at the age where I've got to start doing it or not have them at all :-/ How did you get your HbA1c down to 5-6%? Mine's never dropped below 9% even after trying to be sensible :-( Although now I've got a pump I'm hoping it'll be 7-8%, one month more of good control before the blood test :-)

    Just wondering, has any other type 1s here had ketoacidosis (DKA)? I've had it quite a few times as a result of my stupidness (hospitalised 5 times with it, self treated at home about 10 times), and I felt even more stupid when I discovered that only 1 other diabetic on my carb counting course has had it and that was only when they were diagnosed. I was honestly surprised when I realised it wasn't a common thing. Just wondered if it's the same for any of you?
  • ealr1
    ealr1 Posts: 7
    HI there
    While I haven't yet managed to record anything on here, I too am sure that the little bits of food here and there that wouldn't be a big problem if I wasn't diabetic, are in fact, contributing a lot to my carb intake and majorly impacting on glucose control. Just need to work out how to start.....as in, motivation!
  • ealr1
    ealr1 Posts: 7
    HI piggynugget
    I've had diabetes (Type 1) 25 years and haven't had any episodes of DKA. I don't have excellent control at moment (HbA1c are in the 8-9% range) but when my blood sugars get up in those teens I just feel so yuk that I take extra insulin.
    On a positive note, I have 2 healthy children and managed to get my blood sugar control to that of a non-diabetic when I was pregnant - amazing what motivation being pregnant is!! I'm sure you too will manage that when you absolutely need to.
  • Chandra_W
    Chandra_W Posts: 9 Member

    Chandra_W: I’m sorry to hear your feelings about being a diabetic. When I was first told seven years ago that I would have to give myself insulin injections for the rest of my life, I was ticked off. Big time. Why me? But then I watched two of my friends lose their battles with cancer, and another friend become paralyzed from the waist down following a car accident, and I adopted the attitude that at least my disease is treatable. And it forces me to be more attentive to my food intake (which is actually a good thing). So the attitude I have adopted is that everyone has their crosses to bear, and mine is diabetes, which isn’t so bad in the grand scheme of things.

    I know it sounds like "pity me" - so I really don't talk about how I feel about my diabetes a lot. I know there's always someone out there with something worse, and when I do talk about it, I usually get a response like yours. I get a lot of "well, my __(insert relation here)__ would have loved to have diabetes instead of __(cancer, death, addiction, etc)__". I guess my thing is it's just aggravating, since I've had it since I was young, I feel like it's been the controlling factor in my life and I have no choice or control in the matter, everything is dictated through my diabetes. I'm going to therapy for it now (because apparently my problem is extremely common), so maybe I can re work my brain to feel like it needs to about the whole situation.
  • Hi piggynugget,
    A good way to monitor your ketones is to get a blood ketone monitor. I have Precision Xtra blood glucose and ketone monitoring system. It lets you know if you have ketones in your blood rather than checking ketones in your urine. I do not use it to check my blood glucose since I have another brand of meter for that. I hope this information helps you out.