1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  3. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2019 »
    Dismiss Notice
  4. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Banging your head against a brick wall

Discussion in 'Type 1 Diabetes' started by HeartlessHaxisal, Oct 12, 2019.

  1. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    18 years of diabetes and I’m once again at the point of wanting to bang my head against a brick wall, it always feels like I’m 10 steps behind my body.

    I was put on a CGM and pump combination earlier in the year and it’s made me realise how frequently my body changes, in a week my body can require huge alterations to deal with highs and lows, and it’s a constant battle that as soon as I think I’ve got sussed goes “Nice try, here’s a curve ball.”. Then my doctor tells me my HBA1c is good but I’m having to many highs/lows....no **** Sherlock, I just told you I was having issues.

    I’m on 31 units of basal (yeah, I know that’s ridiculously high), but I’m currently fighting highs. I know you guys can’t do much, but I just need to whine to people who understand...
     
    • Hug Hug x 5
    #1 HeartlessHaxisal, Oct 12, 2019 at 6:56 AM
    Last edited by a moderator: Oct 12, 2019
  2. MeiChanski

    MeiChanski Type 1 · Well-Known Member

    Messages:
    2,183
    Likes Received:
    1,182
    Trophy Points:
    158
    Hello, I wouldn’t say your insulin is too much, whatever works for you. Diabetes is indeed frustrating but you are doing everything you can and we just have to be detectives to figure out why these highs and lows are happening.
     
    • Agree Agree x 1
  3. Juicyj

    Juicyj Type 1 · Moderator
    Staff Member

    Messages:
    7,069
    Likes Received:
    5,992
    Trophy Points:
    198
    Hello @HeartlessHaxisal

    It can be quite over whelming dealing with the amount of information a CGM can give you, I was the same when I went onto the G6, it became firstly obsessive in regards to checking it but also over whelming handling the volume of information it throws out. It's taking a step back from the detail and reviewing the bigger picture that's the trick in managing this, I am similar to you in the fact every day is different, most days no rhyme or reason, different exercise, stress, hormone reactions can all trigger different responses, some days tickety boo and others off the rails. Don't let a doctors opinion affect you either they don't live with this, throw it back at them and ask them what they would do in your shoes, that tends to stop further comments. We all spike after eating it's where you are 2-3 hours later that counts so try not to over treat the spikes and ride them out.

    The point to all this is that we do our best each day, it's a difficult task yes and can be more difficult if we let it become so, try to find a balance, CGMs and pumps are there to help but shouldn't make it harder for us mentally, if it gets too much get outside and go for a walk or exercise or even talk to someone but try not to let it stress you out.
     
    • Like Like x 1
    • Useful Useful x 1
  4. LooperCat

    LooperCat Type 1 · Well-Known Member

    Messages:
    4,521
    Likes Received:
    6,724
    Trophy Points:
    198
    Hi and welcome! I know that feeling all too well, it’s easy to get overwhelmed by it all. That’s not a ridiculous amount of basal either, and anyway, you need what you need. The actual number is irrelevant.

    What tech are you using? I’m using an omnipod and a Libre.
     
    • Friendly Friendly x 2
    • Like Like x 1
    • Agree Agree x 1
  5. becca59

    becca59 Type 1 · Well-Known Member

    Messages:
    1,522
    Likes Received:
    1,971
    Trophy Points:
    178
    I think there are many more Type 1s where individual management is needed on a weekly and even daily basis. Myself included. I strongly resist from saying how much insulin s required to match my carbohydrates. It definitely is not static. I had an A and E doctor ask me last week how much bolus insulin I take everyday. Err however much I feel will be best.
     
    • Agree Agree x 5
  6. JAT1

    JAT1 Type 1 · Well-Known Member

    Messages:
    279
    Likes Received:
    205
    Trophy Points:
    103
    How many carbs in a day do you usually eat?
     
  7. smc4761

    smc4761 Type 1 · Well-Known Member

    Messages:
    900
    Likes Received:
    1,680
    Trophy Points:
    178
    Hi @HeartlessHaxisal it is a constant battle unfortunately but at least now we have better insulins and more tech to at least help us along our daily lives. I have been doing this for 38 years now, times were when all we had were needles the size of small javelins, no blood tests, we had to pee on a stick.Even insulins nowadys are far better.

    Like you I am also on 31 Basal units a day for my pump as well as ratios of 1:4 for carbs. We are all different, if that is the amount of Basal you need so be it.

    If you need to vent or scream or just need to talk come and join us on the Type 1stars R Us forum on here. very knowledgeable people who offer great advice and support as well as good place to talk about life in general
     
    • Agree Agree x 1
  8. Robinredbreast

    Robinredbreast Type 1 · Oracle

    Messages:
    17,223
    Likes Received:
    26,248
    Trophy Points:
    298
    Hi @HeartlessHaxisal sorry to read about your problems. We are all different in the amount of Insulin we take and I too have been going through highs and lows lately, even though nothing has changed in my diet.
    I am now on tablets for my back, after a hospital procedure of trigger point injections in my back. It's frustrating and annoying too. Sometimes just telling someone else, members on the forum, can help.
    Take care x
     
  9. SueJB

    SueJB Type 1 · Well-Known Member

    Messages:
    2,749
    Likes Received:
    3,563
    Trophy Points:
    198
    You're brilliant so don't let your body tell you otherwise. You've done a fantastic job for sooooooooo long so your body ie pancreas, thinks it needs to show you who's boss. Well after 18 years, I think you can kick it back into line. It's good to have a moan now how a blast of a Saturday
     
    • Like Like x 1
    • Winner Winner x 1
  10. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    I’m on the Guardian Sensor 3 with the Medtronic 640 pump which in themselves are a hassle. The sensor causes me problems regularly, the only reason I’m still on it rather than requesting to go back on the libre is that it talks to the pump and can suspend my basal if I happen to drop too low overnight.
     
    • Like Like x 1
  11. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    Honestly it varies hugely. Some days it can be about 40g, some days it can be 100+. And it doesn’t seem to necessarily affect my bloods.
     
  12. LooperCat

    LooperCat Type 1 · Well-Known Member

    Messages:
    4,521
    Likes Received:
    6,724
    Trophy Points:
    198
    I’ve not heard great things about the Medtronic sensors, is it not accurate for you? I’ve set up a DIY version with my Libre and Pod, it (as long as my basal settings are spot on) keeps my running relatively smoothly without too much input.
     
  13. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    Personally I’ve found the accuracy to be pretty good, I had problems when I first started using it but having spoken to my Medtronic representative who is diabetic himself and uses the sensor I followed his advice of inserting the sensor in my arm the same way you do the libre rather than in the stomach as the manual and my diabetes nurse suggested. Accuracy went up hugely after that.

    Sensors do still have a rather annoying habit of failing and not accepting calibrations. It then allows calibration after 15 minutes of this error but it rarely works after that, you should leave it about an hour. And if it does fail due to the calibration requirements for the first day if it does mess up you have to wait until the next morning to insert a new one, unless you want to be woken up in the early hours of the morning for calibration!
     
  14. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    Tell me about it, it really feels like doctors think we’re some kind of machines, Christ I don’t think I’ve had two days in a week where my bolus has been the same! What do they think you eat the exact same carb quantity every day? I know some diabetics use low carb diets and are strict with themselves but jeez not all of us are.
     
  15. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    Our bodies really do like making life that little bit more difficult for us, don’t they?

    Oof, I hope your back feels better soon, and you’re so right. Sometimes it helps to scream into the void, even if the void doesn’t respond XD.
     
    • Friendly Friendly x 1
  16. HeartlessHaxisal

    HeartlessHaxisal Type 1 · Member

    Messages:
    21
    Likes Received:
    6
    Trophy Points:
    43
    Can’t say I’m sorry I missed those days, but I’m glad treatment for it has updated so much, when I was first diagnosed it was insulin pens and the doctors telling me if I got my bloods under control well enough I would only have to blood test two times a week!

    I’m already having to look at slashing my basal. Two weeks of having it and fighting highs the whole time as well, I’m now fighting lows! I just wish my body would make up its mind for a considerable amount of time!

    I’ll try and join you over there sometime! I’m generally not that talkative over my diabetes, I don’t think I can offer much by way of advice or support to anyone for people so I try to stay out of the way.
     
  17. becca59

    becca59 Type 1 · Well-Known Member

    Messages:
    1,522
    Likes Received:
    1,971
    Trophy Points:
    178
    @HeartlessHaxisel my basal dose is 8/9/10 it changes every 3 weeks or so. Am on 10 at the moment following illness. It is this fact that got me the Libre on the NHS. I had been self funding for 2 years and wouldn’t be able to constantly change like this without doing regular during the night blood basal testing. Impractical!
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook