Not recently diagnosed but new to forums and reaching out

[dietcokelover]

Hey yall,
So alittle about me , I live in the US, I was diagnosed with type 1 diabetes when I was 3 months old making it almost 33 years now.
Growing up was lonely, I'm the only diabetic in my family and never had any diabetic friends. The last time I was around more than 1 diabetic was when I was 9 and I went to diabetes camp. I was raised not to bring attention to it so it couldn't be used against me, and never use my diabetes as an excuse.
Recently I've been dealing with some would call DIABETES DISTRESS for last 3 months and no matter how much I talk about it with family and friends none of them understand what I'm going through makes it that much harder. So I decided to look up forums, reach out and connect, something I wouldn't have done 3 years ago. I got some help with actually telling people and opening up about my diabetes. Interacting with the few diabetics I've met in person in recent has been awkward to say the least. So I thought the internet would be easier ? Even writing this took a pep talk and some time
So yeah
Hi

 

[Lily123]

Welcome to the forum

 

[rebrascora]

Hi and welcome.

So pleased you have come to the forum for support. Talking about the frustrations of diabetes and comparing notes is one of the most important features of this forum and especially if you are struggling with "burn out" because it really helps to know that other people experience this and perhaps learn which techniques worked for them to overcome it. Not sure I would still have my sanity without the wonderful folks here to use as a sounding board and learn from. It is literally a gold mine of experience and support without being judgmental.

Can you tell us a bit about your diabetes management and if there is any particular aspect of it that is causing you particular difficultly? So for instance, are you on Multiple Daily Injections (MDI) and if so which insulins do you use? Or perhaps you are on a pump? Do you have a CGM to monitor your BG levels or are you finger pricking.
Are your levels being particularly erratic at the moment and not playing ball or are you just struggling with the daily tedium of how much brain power it takes up every day, with all the decisions we need to make. Do not ever underestimate the huge mental toll that managing diabetes day and night can be and make sure to acknowledge every small triumph that you achieve.... this is another aspect of the forum.... celebrating each other's little victories and achievements like just waking up on a good number in the morning or managing a small reduction in HbA1c. It is easy to beat yourself up when diabetes doesn't play ball and it all goes haywire, but it is important to remember that there are something like 42 factors which impact BG levels and many of those things, we have no control over, so we have to accept that sometimes despite our best efforts it all goes wrong or the goal posts move and we have to learn new strategies to start winning the game again.

Anyway, I hope you feel at home here and are able to offload the issues you are dealing with because likely as not, some of us will relate to them and be able to tell you how we managed to work through them into smoother waters again.

 

[Lucyr]

Hi and welcome. Whilst I’ve not been diabetic as long as you (14 years) I’ve definitely gone through periods of it being difficult to take my insulin etc. Are there any particular aspects making it difficult or is it just the whole thing together?

 

[SB2015]

Welcome to the forum @dietcokelover I am very pleased that you have joined us. TI can be a very lonely route as we are a rare breed, and it hard for people to understand what it is like dat by day.

I am a newbie in comparison to you (15 years) but have already experienced a bout of burn out. It is not uncommon. I am not sure whether these will help but these are some strategies I found helped.

Successful strategies so far in dealing with depression and Diabetes

I found it tempting to hide away over the last couple of months. After 9 years of Diabetes I finally hit a wall as HbA1c reached the mid 40s and so no longer improved, spinal stenosis gave me numb feet over night, an MRI showing lesions on the brain and I watched my Mum die of Dementia...

forum.diabetes.org.uk

There is a lot of support to tap into on here. It helps us if you are happy to tell us how you manage your diabetes: injections or pump, do you use a sensor and what insulin(s) do you use?

Keep in touch. It definitely helps.

 

[Inka]

Welcome @dietcokelover I find the support here fantastic. It’s not just the practical suggestions, it’s being amongst people who understand. It makes you feel less alone with the diabetes.

Do you know if any particular thing triggered your diabetes distress?

 

[dietcokelover]

I use the FreeStyle libre (1) sensors and a blood sugar monitor to check. Recently I've been using the monitor more because I'm starting to doubt everything including the senor
I switched to insulin pens 3 years
I use tresiba for my slow release and humalog for fast acting
It's been tough learning to use different insulin to say the least
Since I'm on my feet at work and I'm becoming really sensitive to low blood sugars I use a different carb to insulin ratio and a different correction scale while at work . I also keep it alittle higher at work under my last doctor's orders. But now I've thrown everything outthe window. I've been adjusting everything to see what works better and what doesn't.
I switched jobs about 3 months before the stress start. I did the right changes and everything was going fine even great for while. And then one week it was like my humalog was working like how it should. I found myself using more and more everyday . I started questioning my carb counting , I even had someone check a few meals for me to see maybe I was doing it wrong . I've cut alot of bad stuff out of my diet thinking it would help keep my sugars in a good range , and it's barely helped
I take 9 units of tresiba
My carb to insulin ratio is 15g to one unit both at work and off work now
I used to use 12g to 1 unit when i wasn't at work. At some point it was to much insulin but now it seems the 15:1 is not enough
my correction dosage for work
200 -1 and then every 75 points ater that get 1 unit
off of work
starting at 150. I give 1 unit after every 50 points
before bed ( this has changed the most )
I start correcting it if it's 230.
Honestly I take it one day at a time right now but use the system I just listed as a sounding board i guess
A few things that are triggering my distress:
I can no longer trust my body . I've depended on my body my whole life . But since my sugars are running high my body is used to it.I start feeling like I'm low when I have a good blood sugar ( I know how bad that is) I could always trust my body so it's killing me mentally that I can't
Another is my new doctor. I had to switch because I moved so I've only had one appointment with her ( my next is at the end of this month ). I don't have a connection and trust with her just yet . I've had horrible experiences with doctors so I can be guarded . that's adding the lonely feeling. Hopefully after explaining everything to her I'll feel more supported and if not I'll probably be looking for a new one .
I had a great medical team before I moved . They were my support system
With all the highs and drops I'm judt mentally, emotionally and physically drained.
I think I might have gone off script .

 

[Bloden]

Hi @dietcokelover and welcome. 🙂 So glad you’ve found us! Sorry to hear about your diabetes distress. This condition is 24/7 so we all feel burned out from time to time. I never really talk to friends and family about my diabetes either - they don’t understand what I’m talking about most of the time anyway! So I hang out here for advice, support and silly jokes, lots of silly jokes. 🙂 Make yourself at home...

 

[TheClockworkDodo]

Hi @dietcokelover and welcome to the forum 🙂

There are lots of people here who will understand, so do keep coming and talking about what you're going through, it really helps.

One thing you may find baffling if you read other threads, as you're in the US and this a UK-based forum, is that our meters measure blood sugar in mmol/L rather than in mg/dL so the blood sugar numbers most people here quote will be different from yours - for instance most people here will start correcting at around 12 or 13 ... but that's exactly the same as your 230 ...

Carb to insulin ratios and units of insulin are exactly the same here though 🙂

I have the opposite problem from you, can't stop hypo-ing and can feel like I'm high when I have good blood sugar 🙄

I hope your new doctor is good, I know what it's like to move away from an excellent medical team, and I struggle with explaining my complicated medical issues to new doctors (I now have a written summary to give them, which I found helps).

 

[everydayupsanddowns]

Welcome to the forum @dietcokelover

And thanks for sharing with us.

Diabetes distress is increasingly recognised as being a significant challenge of managing such a complex and demanding long term condition.

Have you come across the concept of basal testing? It’s more usually associated with people who use an insulin pump, but when I discovered it it made a huge difference to the reliability of my doses on injections. For me it seems that my basal just being a unit or two out over the course of a whole day can stop my meal doses acting as I would expect them to, and can leave me chasing my tail and either fighting hypos, or correcting like crazy.

There’s a write-up here if you think it might help

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!

www.mysugr.com