Diabetes

[nhr]

Hi. I’m new to the forum but not new to diabetes. I’m a T1 having been diagnosed 5 years ago (when I was 36).

I’m really struggling. I’m caught in a cycle of sticking to my regimen, getting mentally tired of it, breaking rules / missing injections, eating badly because I’m miserable, having super high blood sugars, getting moody and irritable, having arguments with my wife, feeling bad, going back to sticking to my regimen then starting the whole cycle again.

I can’t break it. I can’t get away from the feeling of being stuck. The never ending need to stick to rules. The constant pressure to do the right thing. The time. The effort. The demands. The consequences of it. The desire to have a break from it all. The feeling that so few people understand. The belief from others that it’s just about sticking a needle in you a few times a day.

I’m miserable. I feel alone. I can’t stand it.

 

[rebrascora]

Hi and welcome.

I am so sorry to hear you feel like this but very pleased you have found the forum to talk about it and hopefully feel like you are normal and what you are feeling is normal albeit frustrating and challenging. Managing diabetes with insulin is a huge mental strain and it is very difficult for others to comprehend just how much "bandwidth" we have to devote to it, day and night and not just for those moments where we inject insuiin but all the times in between. I think it was calculated by someone that we average about 100 decisions a day about our BG management. Some of those things we learn to do semi automatically but it still takes up brain power.

I think just sharing these feelings with people who "get it" is a big relief in itself. I visit this forum regularly because it helps me feel normal and I take support and tips and advice from people who have been in my shoes and figured out ways to get through it. Some of those tips might not work for me but some will and it gives me ideas of what I can try in order to make things easier.

For me, Libre has been a "game" changer and I mean that literally as well as metaphorically. I now treat my diabetes management as a game of keeping my BG levels "in range" rather than a health condition that I have to manage. My controls are fast acting glucose and insulin and the challenges are negotiating meals and exercise and my computer game is played out on Libre. I focus on the here and now but I look towards achieving a new personal best TIR when I get near enough to possibly achieve it, then I go back to a maintenance level until things are going well enough to try for another personal best. There is definitely an ebb and flow to diabetes management, but it sounds like you are at the extreme of that, so it is either really good or not good at all. Maybe you need to lighten up and aim for "good enough" but not great. Find some middle ground which is sustainable and be kind to yourself and acknowledge that achieving that level with consistency is really good and far better than the all or nothing situation which is currently going on.

Something else which might help is a DAFNE course or whatever your local equivalent is, if you haven't had one? It gave me the knowledge and confidence to adjust my basal insulin doses and that has made a huge difference to how effective my diabetes management is. My basal needs change a lot due to a variety of factors but exercise/activity is the major player, although not so much during or just after exercise. For me it is the night and day following increased activity which impacts my levels the most and adjusting my basal doses for that makes a big difference to how much less frustrating balancing my levels is.

Anyway, I am conscious that I am starting to ramble.... I think you need to seek support from your diabetes clinic, ask about an intensive education course like DAFNE if you haven't had one, get Libre or other CGM if you don't currently get one prescribed but hopefully you do and come here and talk about the issues you are having and pick up tips on how to make life a bit easier.

 

[SB2015]

So sorry to read how you are feeling about your diabetes @nhr , but very pleased that you have found the forum. It is not uncommon to feel as you do, as what we are doing day by day is indeed hard work and takes up a lot of bandwidth in our heads, and we each need to find a balance that works for ourselves. There is plenty of help to tap into on here from others that ‘get it’.

Where you are in the cycle you describe it may be helpful to just focus on sorting out one thing At a time. Perhaps breakfast, and to get in the habit of always testing and injecting for that. It is often the easiest meal to have as a consistent meal, even if only during the week, so the carbs are fixed and that makes it easier to sort the insulin needed.

Work on things step by step, and definitely don’t expect perfection. That is doomed to failure since it is impossible. It took me a long time to accept that and I set myself totally unrealistic targets, before accepting the advice of others on here.

It will help us to adapt our answers to your needs if you are happy to let us know what insulin(s) you are using. I am guessing that you are on a basal (background) / bolus (quick acting) regime which can make life more flexible, but still takes time to adjust to suit what you need.

As @rebrascora has suggested a DAFNE course can be very helpful. Not only for learning how to make adjustments to your own insulins but also in meeting others who are dealing with this day to day. If you have not had access to that course yet do ask your team about it.

Have you been offered a Libre sensor. This can help when trying to make changes to your engine and help to show you the impact of these changes.

There is a wealth of experience to tap into on here. No questions are considered silly, so please ask. Share whatever info you are happy to and we will help where we can.

 

[Tdm]

Plus, get into habits. If you know what breakfast you eat and what you bolus for it, you don't have to think. You are on autopilot. Less decisions, less stress.

 

[Vonny]

As a simple T2, I can't offer any advice, but I want you to know that I'm in utter awe of all you T1s out there. As a T2 my diet is limited as I can't compensate with insulin to eat "nice" things! But it's really easy for me and I don't know how you all cope with the basals and boluses, and my heart goes out to you. Hopefully some of the useful and in depth support from other T1s will help xx

 

[Spathiphyllum]

I can’t get away from the feeling of being stuck. The never ending need to stick to rules. The constant pressure to do the right thing. The time. The effort. The demands. The consequences of it. The desire to have a break from it all. The feeling that so few people understand. The belief from others that it’s just about sticking a needle in you a few times a day.

I’m miserable. I feel alone. I can’t stand it.

You are absolutely not alone. All of the things you're feeling-- as far as I can tell, many or most of us have felt like that. We have our very own special mental-health conditions: 'diabetes-related distress' and 'diabetes burnout'.

I was diagnosed less than 9 months ago, and already I've felt all these things; and I know they can pop up at various points in a T1 life. In a strange sort of way, I'm lucky in that I was diagnosed with an anxiety disorder and started seeing a clinical psychologist before I was diagnosed with T1. So, when 'diabetes-related distress' hit, I already had someone to help.

Have you talked to your local diabetes team? They should be able to help; diabetes-related distress and burnout are well-known problems.

Also, I agree with Barbara and with SB2015 about two more things:

- If you don't have a Libre or other CGM, get one; it will make life a little easier.

- See whether you can get on a DAFNE (or similar) course. Just spending time with other T1s, people who *do* understand, helps.

And-- do you have a pump? If not, have you thought about it? That could make your life easier too, helping to ease the practical and psychological burden.

The main thing, I think, is-- if you haven't talked to your local diabetes team about this, you really should. Sending you all sympathy and best wishes.

 

[everydayupsanddowns]

Sorry to hear you are having such a tough time @nhr

It does sound like you are going through periods of diabetes distress / diabetes burnout.

And perhaps difficulties with adjusting to your diagnosis - and the ‘grieving’ process that can involve (with surges of anger, denial, bargaining, depression acceptance). I think some of the annoyance, and almost self-destructive behaviours you have described could fit with that intensity of diabetes-grief?

Do you think there might be a mid-point between full-on intensive management and skipping injections while eating high carb foods? A way of just keeping things ticking over when you are having a tough time?