Hello to All - Type 1-2 and the rest of you

[Ready to Give Up]

Hi Everyone

After 41 years of nothing but the Type 1 continuum that remains a continuous flash-back through flash-forward of what the rest of my life may be, I thought it was time to gain the opinion of others.

I am at this point 57 and thoroughly unimpressed by the progress made in support of Type 1 diabetics. There are days where I reflect and think, 'Gees, if only I were Type 2' but we are all aware that there is far more to it than; 'what we eat'.

Indeed, I literally eat 1 or 2 meals a day, do not touch sweets, chocolate or cakes and check my glucose levels more than 10 times a day.

I have had Cortisol checked, indeed a wide range of tests to no avail'. For me, I am now at the point where I genuinely feel that; 'enough is enough'.

I am now using the Libre 2 system and all that does is constantly tell me that the system could not connect, provides extreme glucose readings or simply falls off my arm.

Could someone please advise, have you experienced similiar problems? If yes has anyone tried the Dexcom system?

Thanks

 

[Leadinglights]

I can't help with those but it seems like you have not had good, if any support from your diabetes team to give you an insulin regime which allows a 'normal' eating pattern.
Do ask your questions about what might help you.
What insulins and regime are you on as that will help people make suggestions.
Welcome to the forum by the way, there is a whole mixture of the newly diagnosed to people like yourself who are long diagnosed.

 

[rebrascora]

Hi and welcome.

Sorry to read that you are so chewed off with your diabetes and lack of support in managing it. I can assure you that many Type 2 diabetics are treated as second class citizens when it comes to diabetes so I am not sure if one is any better than the other apart from there being a hope of remission with Type 2 but it takes hard work to achieve and maintain it, so it is still an ongoing battle.

As regards your diabetes, often people who have been diagnosed a long time have missed out on intensive education courses like DAFNE (Dose Adjustment For Normal Eating). The title makes it sound like a carb counting course but it is so much more than that and spending a week with other Type 1s is in itself a real benefit and in the same way as this forum, you learn such a lot from each other. If you haven't been offered such a course then do ask. I follow a low carb way of eating (so not exactly normal eating) which very nearly put me off attending but I learned a huge amount, particularly gaining confidence with regard to adjusting my basal insulin and that makes a massive difference for me as my basal needs change quite a lot, sometimes on a daily basis. Thankfully I am on Levemir which allows me to make adjustments in real time, rather than the longer acting basal insulins which take several days to implement the full effect of any changes.

Which insulins are you using and do you have any particular problems with either of them?

As regards Libre, I still use the original Libre (mark I) which doesn't have the alarms and I use a reader rather than my phone as I find that more convenient and really reliable. I think using a phone brings in quite a lot of other possible problems like NFC and BT connections and software updates. My reader successfully scans every time apart from yesterday (for the first time in over years) when my levels were falling too fast for Libre to cope with it. You have to understand the limitations of Libre and know when to double check with a finger prick and I have learned a lot about it from others on this forum but also from the Libre Academy which I was required to complete in order to get Libre on prescription. As regards it coming off, skin prep is rather important and many of us find that applying it after a shower before bed gives it the best chance of adhesion. I also use an arm strap which has a 3D printed "watchface" which fits over the Libre with an elastic strap holding it in place. This has made a real difference to me for improving adhesion and I now grimace whilst trying to prize it off on day 15 when it is still stuck like a limpet. I say day 15 because many of us find that applying the sensor a day before we need it and allowing it 24 or even up to 48 hours to "bed in" gives more accurate results from day one when you eventually activate it. The 14 day countdown doesn't start until you activate it so it isn't a problem to apply it a day or two early once you get the adhesion issue sorted. I lost 5 or 6 in the first 8-10 months but since getting the strap I haven't lots a single one. The strap sometimes pings on clothing as I am getting dressed/undressed.... sports bras and door frames are Libre's nemisis, but now the strap pings but the Libre is still firmly in place. My strap cost £8.95 off ebay and was money well spent. Some people over tape with Tegaderm dressings or I used to use micropore before I got my arm strap.

I hope some of those suggestions are of help to you but if you have any particular questions do ask..... or feel free to have a good moan as that is another function of the forum. We all understand the need to let off steam sometimes. I don't need to tell you how frustrating diabetes can be sometimes but it is hard for non diabetics to fully understand how challenging it can be at times.

 

[everydayupsanddowns]

Sorry to hear you have been having such a rough time.

T1 can be a frustrating, fickle, and relentless swine of a condition at times for sure.

And while part of me thinks that the gadgets are one of the best things about it, man they can be annoying when they don’t work well, glitch, or have a user interface designed by a sack full of bickering baboons!

I have been using Dexcom for around a year. Not cheap to self fund, but it’s one of the better CGM systems I’ve tried.

Have you been able to access Dafne or Bertie (or a local equivalent insulin management course)? Is there a reason why you are limiting your food choices? Which insulins are you using, and how are you finding they work for you?

 

[SB2015]

Welcome to the forum @Ready to Give Up
So sorry to hear that your diabetes is having such a big impact at present.

The Libre can be a useful tool but can also be an overload of information.
First if they are falling off it couod be worth putting extra tapes over it to keep it in place. If it is constantly reading High are you checking this against finger pricks. That way you would know whether the information is reliable.

When I first started using Libre sensors I found them helpful to:
- find out the impact of certain foods and make adjustments to reduce spikes after meals
- head off hypos, especially when I was doing exercise
- be safer when driving as I knew which direction my levels were going in
- make informed adjustments to my insulin doses

There is a lot to think about every day in managing our diabetes, so it is no surprise that it can get us down. I know I hit Burnout after just 12 years. I eventually asked for help both on here and through my team. I found people on here came at things with a different perspective and encouraged me to try different approaches, which helped to put me back on. Y feet with some more realistic targets. Do ask for help. You are not alone.

I have not tried Dexcom sensors but have used both Libre and now Medtronic Guardian 4 sensors which work for me. It is a case of finding something that works for you.