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Frustration

H

hjm1986

Member
Messages
7
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!
 

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."
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 


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
 
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
 
@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.
 
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!
 
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”
 
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 !
 
Yeahhhh truth xxxx
 
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!
 
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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 .
 
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