1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2022 »
    Dismiss Notice
  3. 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 »

Frustration

Discussion in 'Type 1 Diabetes' started by hjm1986, Jan 19, 2021.

  1. hjm1986

    hjm1986 · Member

    Messages:
    7
    Likes Received:
    6
    Trophy Points:
    23
    Hi can anyone else relate? I’m not meaning to disrespect fellow diabetics here, but does anyone else get really annoyed when you visit Diabetic forums and it’s constantly full of “perfect diabetic” posts?
    E.g. “I’ve had diabetes for x years and I’m able to keep my insulin units to practically zero when I eat and my HBA1C is below 42 / 6%. I rarely hypo and my levels keep below 8.0 practically all the time.............”
    I’m exaggerating - but it emphasises my point. I just get so annoyed and frustrated that no matter what I try, I struggle with my levels and always have since diagnosed as a child, and yet it looks like everyone else’s diabetes simply conforms and goes to plan?
    For example my a1c is estimate 81mmol / 9.6% which for me isn’t that bad to be honest when I’ve previously had high a1c at 14% etc......... I’ve worked my bum off to get my a1c lower. During the summer my a1c dropped to around 72mmol / 9.2% but that’s probably the best it’s been monitoring it via Libre. But I come onto the forums and all I see is people worrying over a BG level of 8.0............. seriously? I woke up this morning and my BG was 26.0. I hypo at least once a day, and I’ve been on the pump list at my hospital since 2010!!!!!
    But don’t get me wrong I am super happy that everyone else’s diabetes is going fine for them, but I always just feel so disheartened when I check the forums and see all these comments about how someone’s diabetes is “terrible” because their glucose test was 8.2. Seriously? I WISH my my BG was 8.2 on a daily basis! Sorry for the rant everyone, just one of those days I guess!
     
    • Hug Hug x 15
    • Like Like x 1
    • Winner Winner x 1
  2. Jaylee

    Jaylee Type 1 · Moderator
    Staff Member

    Messages:
    16,660
    Likes Received:
    12,039
    Trophy Points:
    298
    Hi,

    Sorry you feel that way..
    If it's any consolation to you. I remember sitting in a waiting room at a hospital consultants back in the days of pee tests.
    Feeling disparaged by all the "no fillings today mum" pat on the heads coming out the doc's door & feeling "what's the point. I may have well stolen a car?"

    Fast forward.
    I self fund my Libre & have been trying to tell my Endo that my basal insulin is no good regardless of recomended storage, unstable & like I haven't injected it. Though my reaction to the Bolus is good.

    You're a breath of fresh air. I've seen a few numbers in the same ball park. (Till I change my basal cartrige.) It's always "easier said than done." ;)
     
    • Like Like x 3
  3. searley

    searley Type 1 · Moderator
    Staff Member

    Messages:
    1,750
    Likes Received:
    667
    Trophy Points:
    173
    I know what you mean... I've struggled lot for about 10 years tried absorbs and still hba1c about 8.9.. I started a pump a few months back along with dexcom.. and it's been much better and still getting better as time passes

    Estimated hba1c now 6.9 hopefully slightly better still when I get a blood test
     
    • Like Like x 2
  4. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

    Messages:
    940
    Likes Received:
    1,265
    Trophy Points:
    178
    I found there was one even more irritating type of comment. Something to the effect "I don't know why people [diabetic] can't just keep themselves controlled. It's not rocket science." Just reading things like that would have elevated my blood sugar. I think it is worth remembering that most of the worrying over a level of 8.0 is that in a non diabetic that figure woud be somewhere about 5.4%. If a patient has, as in many cases on the Forum, had to have eye surgery or suffers neuropathy or kidney malfunction, they are going to do everything they can to keep the level as near perfect as possible. So an average of 8 would trouble them. especially because higher readings than 10 come into the mix. I don't think the majority are in any way trying to belittle your achievements. Judging from your hypoing daily and having readings of 26 would suggest that your insulin doses are out of kilter with your carb intake. I am unable to advise on this, but I feel certain life could be made a lot more tolerable for you with some adjustments. 26 may simply be your body warding of a virus or infection. I used to work in a school until Covid literally shut it down, but if, for example, a stomach bug went round, generally I would not get the bug, but my BG would hit a figure like 26 with no warning. Obviously you are trying hard to keep yourself healthy and I would hope you could find just as many posts that might help you along the way. The very best of luck.
     
    • Agree Agree x 4
    • Like Like x 2
  5. Maco

    Maco Type 1 · Well-Known Member

    Messages:
    278
    Likes Received:
    109
    Trophy Points:
    63
    Yep I completely agree with you, diabetes especially type 1 has got to be the most frustrating & complex disease. I honestly struggle to believe half the people who preach to be 'perfect' diabetics. I eat the same food Monday-friday all week every week, not a single carb calorie or portion size is different however one day my control is really good & the next im off the scale. Yesterday for instances my reading didn't go above 10.5, but today same food same carbs same insulin amounts my readings peaked at 18.0mmol. Pre breakfast 8.0mmol after breakfast 14.0mmol, back down to 10.0 before dinner & 3hrs later upto 17.
     
    • Like Like x 4
    • Agree Agree x 1
  6. Shiba Park

    Shiba Park Type 1 · Well-Known Member

    Messages:
    164
    Likes Received:
    132
    Trophy Points:
    83
    Do you believe these claims? I call it Facebook syndrome. Everyone on Facebook has an amazingly perfect life in every way, reality is different!
    Don't believe everything you read and take comfort in doing your best; no-one can ask or expect more. Especially those not walking in your shoes.
    Shiba.
     
    • Agree Agree x 5
    • Like Like x 3
  7. sleepster

    sleepster Type 1 · Well-Known Member

    Messages:
    696
    Likes Received:
    335
    Trophy Points:
    123
    I know what you mean @hjm1986, it seems the harder I try, the worse my control gets. My libre graphs are like an epic rollercoaster most days o_O
     
    • Like Like x 2
    • Agree Agree x 2
  8. TashT1

    TashT1 Type 1 · Well-Known Member

    Messages:
    309
    Likes Received:
    149
    Trophy Points:
    103
    I wouldn’t say this particular forum is bad for that type of poster, there tends to be a good mix.

    Some diabetics might exaggerate because it’s a way of getting positive attention, others might be working on only their diabetes & nothing else so do have perfect control, or are like myself & still getting a boost from their existing insulin production.

    For newbies like me it’s very helpful to ‘see the future’ with posts like this so I know what my levels could be like once my insulin production runs dry. It’s important to see both the diabetic for 40yrs & this is how I control it alongside those that still struggle. Reading about other people’s struggles helps to not panic when things go wrong & the successes help to guide you to better control.

    My diabetic future is very much in my thoughts since my consultation yesterday. Which 100% confirmed I’m T1 but with middling insulin production. My control is good now but I’m warned it won’t stay that way for long, I should expect things to be unpredictable & not to be too hard on myself with 8-10 readings.

    At the end of the day everyone is in their own battle with diabetes & as much as we try to understand & support one another our experiences will never be exactly the same. What’s important is how you feel and keep striving to stay healthy.
     
    • Like Like x 3
    • Agree Agree x 2
  9. Daibell

    Daibell LADA · Master

    Messages:
    12,434
    Likes Received:
    7,368
    Trophy Points:
    298
    Hi. I've been a user of this forum for many years and have not seen too many of the type you mention although recently there have been a few more with non-diabetic levels. All we can do is advise that they are fine with their current diet/meds etc. My HBA1c is 56mmol and I struggle to keep it down to that level but it's better than the 12.5% when diagnosed.
     
    • Like Like x 2
  10. JAT1

    JAT1 Type 1 · Well-Known Member

    Messages:
    335
    Likes Received:
    243
    Trophy Points:
    103
    It's nice to know there are others out there struggling. In the past I seemed to have good control (and maybe I was boasting about it) but lately for reasons beyond my understanding that's not the case. I also eat a monotonous diet. I don't sleep well and I'm sure that's part of the reason, other times I'm sure it's the cold or wind and most of the time I attribute it to getting older.
     
    • Like Like x 2
  11. Maco

    Maco Type 1 · Well-Known Member

    Messages:
    278
    Likes Received:
    109
    Trophy Points:
    63

    Been diabetic can be really frustrating, again today same foods same carbs same insulin I’ve never been above 10. Averaged around 6mmol all day, only raise is when I went to the gym and did some heavy weight training. Tomorrow will probably be completely different again
     
    • Like Like x 2
  12. rochari

    rochari Type 1 · Well-Known Member

    Messages:
    154
    Likes Received:
    215
    Trophy Points:
    83
    You’re doing OK, hjm1986 but I understand your frustration. Fifty-six years on insulin here but never would I describe my diabetes as perfect. There are many good and bad days regarding test results and I nodded when I read maco’s comments. Now retired, I too eat the same foods, carbs and take the same dose of insulin and NEVER are those test results, day-to-day, the same and sometimes not even remotely similar.

    In so many ways I’ve learned to manage it all as best I can but even that can be a mess sometimes!

    I stopped reading Diabetes UK’s magazine (Balance) years ago after I got weary of the letters they published from subscribers saying how ‘perfect’ their control was. I sincerely say well done them but not everyone is like that and never will be.

    Bill
     
    • Like Like x 2
    • Agree Agree x 1
  13. philly1991

    philly1991 Type 1 · Well-Known Member

    Messages:
    139
    Likes Received:
    73
    Trophy Points:
    88
    @hjm1986 I can totally relate though I am extremely happy for these individuals. There will be so many people who have been through the same struggles to get where they are now and it is 100% achievable for yourself. I guess we should avoid making comparisons like with many things in life though I completely understand that this is easier said than done as I myself am guilty of this.
     
    • Like Like x 2
  14. UK T1

    UK T1 Type 1 · Well-Known Member

    Messages:
    334
    Likes Received:
    170
    Trophy Points:
    103
    Completely understand, though more than once I've then clicked on the user profile to see they're not type 1, which then massively helps me put things into context too. So I am more cautious when reading posts now!
     
    • Like Like x 3
  15. Ushthetaff

    Ushthetaff Type 1 · Well-Known Member

    Messages:
    534
    Likes Received:
    399
    Trophy Points:
    123
    Have to say I can see exactly where your coming from ! I’ve been in the place ! Scared to go to the hospital for an appointment cos I know my results were terrible so sometimes didn’t go ! Diabetes isn’t easy ,for me to keep my blood sugars perfect-all the time would mean me doing nothing else, , than take my blood sugar and worry when it went up to 9 .1 instead of it being 5 .
    Haaa I know exactly what happens when your bloods are totally out of control , so now I don’t try to be perfect as I know it’s not possible ! I live a great life I am in good health ( apparently) and I try to keep my bloods under 10 , I don’t work any more so I now have the time to test my blood ! Plus technology helps that too, it’s not a competition , I find this forum a breath of fresh air to be honest as there is such genuine advice available , from people who understand that diabetes isn’t all about “ perfect numbers”
     
    • Like Like x 2
    • Agree Agree x 1
  16. jaywak

    jaywak Type 1 · Well-Known Member

    Messages:
    392
    Likes Received:
    271
    Trophy Points:
    123
    I've been type 1 for 46 yrs and can perfectly relate to all theses comments , I'ts never been easy sometimes up and down like a yo yo for no reason , Since I had the covid vacine last week i've gone from 2.5 to 19 , Last night before bed I was 3 so thought I would have a very small piece of my wives birthday cake , big mistake woke this morning to 17 , I'ts been high in the morning since having the jab so i'me hoping it will get back to normal soon !
     
    • Like Like x 2
  17. annliggins

    annliggins Type 1 · Well-Known Member

    Messages:
    209
    Likes Received:
    114
    Trophy Points:
    83
    Yeahhhh truth xxxx
     
  18. jaywak

    jaywak Type 1 · Well-Known Member

    Messages:
    392
    Likes Received:
    271
    Trophy Points:
    123
    Wasn't that much better this morning 16 for no explainable reason !
     
  19. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

    Messages:
    3,939
    Likes Received:
    5,492
    Trophy Points:
    198
    I can totally empathise with T1 frustration, it’s why some of us think living with T1 is like living with a toddler: unpredictable and time consuming. It’s really great when blood sugars are as close as possible to ‘normal’ but the fantastic effects of ‘normal’ on mood and energy bring with them the pain that blood sugars aren’t always so compliant. It must be wonderful to be ‘normal’ all the time!
    I’ve lived with the diabeast for 51 years. Recent tech advances have made a huge difference and I wouldn’t want to be without the Libre, a Miaomiao and a watlaa. It still takes time, and lots of juggling but I wouldn’t like to be back in the pre-tech-and-better-insulin times when I was well acquainted with highs in 20s or even 30s and debilitating glucagon needed hypos. Horrible. Embarrassing too sometimes. Ugh! I’ve not been offered a pump, but really hope you get yours. I gather some have set up a loop with a pump that helps them to keep their blood sugars in range.
    I really hope you get the tech too @hjm1986 - push the medics, or seek others and ask, ask, ask!
     
    • Like Like x 3
    #19 Fairygodmother, Mar 4, 2021 at 10:15 AM
    Last edited: Mar 4, 2021
  20. jaywak

    jaywak Type 1 · Well-Known Member

    Messages:
    392
    Likes Received:
    271
    Trophy Points:
    123
    I have asked at the diabetic clinic I attend once a year for my annual review about being put on a pump only to be told that I control my diabetes well enough that there would be no advantage for me and a similar answer from my Dr when i've asked about a Libre .
     
    • Hug Hug x 3
  • 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