I feel trapped in my own illness

Hello everyone,

It is the first time I write here and I do it because I can no longer continue carrying this in silence.

I have had type 1 diabetes for about 7 years and am obviously insulin dependent.I have been feeling for some time that my life revolves around the disease 24 hours a day: measuring, calculating, correcting, anticipating... and honestly, it is exhausting me physically and mentally.I feel like there is never any rest.

Added to this is that I have been dealing with depression for many years, and lately everything is becoming too difficult for me.It is difficult for me to find meaning or motivation when I perceive my daily life as a constant struggle without respite.Even thinking about whether the request for euthanasia is possible.I do not consider that I came into the world to bear this burden or punishment.

That's why I write here: I need to hear from people who really understand what it's like to live with this.

How do you deal with the mental burden of type 1 diabetes?
What helps you not feel “tied” all the time?
Have you gone through moments when you felt like you couldn't take it anymore?What helped you get out or sustain yourself?

I'm not looking for perfect answers, just real experiences, tools, or even ways of looking at this that may be eluding me right now.

Thanks for reading me.

I feel a little like that too.And even more so when my life is going very badly, for all this effort, and then to continue having my shitty life.

When my life is going less badly, I don't think about it and I just keep going.

And what helped me, well, the psychologists a little at the beginning, although they didn't do much either, they consoled me a little and that's it.But sometimes it is needed.

And then looking to the future, what helps me is seeing what companies like Eledon are doing that are already curing diabetics.If it weren't for that hope I would have stopped pricking myself a long time ago.

Hello Andrés.I'm sorry to hear about the harshness of your experience with Diabetes, but I think that in our own way, all of us who live with it share it.

It's hard.Very hard.And I think it's very good to say it, recognize it and let our close circle and the rest of the people know it, to better understand the mental load, the daily effort, the mood swings...

I was diagnosed when I was 8 years old, in 1997, and one of the things that hurt me the most was hearing so many times that "there is a lot of research, there will be a cure in no time," because it took me a while to accept that this was going to be for a very long time.Another comment that you have probably heard on more than one occasion didn't help me much either: "Well, but you already have it under control" or "You get stuck and eat everything, right?"Only a person with Diabetes knows how hard day-to-day life is with this, but I think it is what it is, and we have to play with our cards as best we can.

In my case, sport saved my life.Not only because it helped me a lot with insulin sensitivity, but from a psychological point of view.These are moments when I don't feel "sick."I try to learn from each sensation, from how insulin influences my body, from what hypoglycemia feels like when I pedal and I am able to overcome it when a non-diabetic person is left in the gutter by a bird.

Nowadays I don't practice as much sport as I did a few years ago, when I participated in races, trained and competed regularly, but I still use sport as a mental escape, to improve my health and feel good.At this moment I try to take care of myself as much as possible from a physical and mental point of view, with good habits, food, rest... I try to adapt everything I have learned from Diabetes and the discipline that I have been forging to incorporate healthy habits and maintain a healthy life, enjoying feeling good and healthy, but beyond this, I maintain other hobbies and look for hobbies that help shape my identity beyond being a Diabetic 24/7.

One of the greatest learnings from my Diabetes has been to assume that both in life and in the course of the disease, everything is ups and downs, but we must ensure that these are as least pronounced as possible (physically, psychologically and in the blood glucose itself).

Good luck on the road.

Hello @Andres_Javier,

I'm sorry you're going through these hard times.Managing diabetes is already exhausting in itself, and if we add a case of depression on top of that, everything becomes more complicated.

I feel identified with your words that this disease does not give us rest, it is present in our minds throughout the day.The only time I forget is when I'm sleeping (if no meter alarms go off).

What I take worst is the variability.It changes constantly, with the time of year, with the mood, with the sport, depending on whether we have rested, when you are sick, with the medications,... and this can mean that the dose of insulin that worked yesterday is no longer adequate for today.

The personality of each one is a determining factor.In my case I want to have everything under control and although at the moment I have excellent results, the price I pay is very expensive.I've only been on insulin for a year and I already feel the exhaustion and wear and tear that you mention.I don't think I'll be able to maintain this pace for the rest of my life, so I'll have to learn to be less picky and understand that spending a few hours a day out of range and not having perfect glycation isn't the end of the world.Maybe we have to look for that middle ground that allows us to have reasonable values ​​without falling into obsession or indifference.

I don't know if you are using insulin pens or a pump.A closed-loop pump system could help you offload some of this mental load by delegating basal management and corrections to the algorithm.I have been put off by wearing something with tubes attached to my body, but the Omnipod 5, which is a patch-type pump (without tubes), will soon arrive at social security, and I may consider trying it later.

Another alternative is to look for diabetic associations in your city and participate in an activity or event that allows you to interact and exchange opinions and experiences with people who go through the same things as you on a daily basis.If you do not have this option, use the forum as you have done, and ask for advice since there are people with a lot of experience who can surely help you.

It also helps me to see that there are people with and without diabetes who have more complex situations than me and keep going.In the forum there are people with cancer who have undergone chemotherapy treatment, women who despite the difficulties want to be mothers, fathers and mothers with babies with diabetes...

@Andres_Javier, good luck, I'm sure you can handle this and more.Don't throw in the towel and keep fighting.