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.

@Andrés Javier, it is difficult to advise, because we all have different ways of seeing life, but in case you are encouraged, I can tell you that my daughter started when she was 5 years old, she is 37, and the tests and the fundus of the eye continue to come out perfect, and she is not obsessed with control, if she has to eat an extra meal, she eats it, faster and that's it. The glycos are at 6 with something, but she lives very calmly.

I almost see being prone to depression as more of a problem, I am, and taking an antidepressant helped me a lot, especially as a result of my daughter's diagnosis, because 30 years ago this was much more worrying.

But the treatments have been improving, better insulins, better pumps, and they already have modified insulin-producing cells. In China, the latest advances have managed to implant insulin-producing cells and there are already those who have been "cured", at least for a good while.

I believe that they have already achieved the most difficult part, and the pumps will also become practically autonomous.

Try to live more relaxed and, if you need antidepressants, take them, which help not make problems worse.Obsession takes life from us.

A hug.

@Andres_Javier: take care of that depression.I leave you a link about the relationship between diabetes and depression in case it can be of help.

Link

I don't know what glucose you have with a type 1 @Regina lets go, my daughter is at 6 with something but she lives calmly, 6, whatever it is, it's a great control, I with type 1 am at 6.3 which is a glucose in a non-diabetic person with prediabetes, mild hyperglycemia on an empty stomach would be 133 on average in 90 days, yes it is true that a glucose of 133 to 90 days for years could cause complications butThe statistics are greatly reduced with that average, here I see people with glycations of 5.8 or 5.9, which are glycations bordering on normality with averages of 120 in 90 days, I mentioned it to my endocrinologist and he said "yes, but how many hypoglycemias does a diabetic person have with that average?"If you are type 2, okay, but type 1 with a size of 5.8 or 5.7?Good luck @Andres_Javier

@Andres_Javier I think depression is what you should treat.It doesn't make you see that diabetes is with you, but it doesn't limit you.

We are all like you, with continuous control.I debuted 11 years ago, at 41.9 years old and it was a radical change but it has made me "prioritize myself" and be more energetic because of burning glucose.

I thought that any other illness was better, until I got cancer.

Today I can tell you that life is wonderful and that my life is not just mine, it belongs to all those who love and appreciate me.We owe it to them.

You are incredible, all of you who have answered me have encouraged me a lot. I know that I am not alone and I am still in the fight in the debate. In two weeks I have a visit with the doctor because right now I am on sick leave due to depression and we will see in which direction we go. Thank you all very much.

Andres Javier, you have every right in the world to feel this way, it happens to all of us and if you want to express it freely you should do so.I also know depression intimately and I wish you a speedy recovery.

I don't keep quiet: the days I'm screwed I say it, the rest I say "I'm fine and reasonably happy."More important than being good is feeling good, I tell everyone.

A hug.

@Andres_Javier said:

You are incredible, all of you who have answered me have encouraged me a lot. I know that I am not alone and I am still in the fight in the debate. In two weeks I have a visit with the doctor because right now I am on sick leave due to depression and we will see in which direction we go. Thank you all very much.

Diabetes accompanies us and we give it importance.

I try to be in "good" values ​​but it is not always possible, so for me the important thing is to have a clear conscience, I have done everything possible, yes, well nothing, as long as I don't have 250 hours, fine.I correct it with insulin and that's it.

You have to know yourself and do what you can to have a clear conscience.It is not possible to be at normal values ​​for 24 hours, we are diabetic and blood glucose is susceptible to many factors.

You will see how you overcome it.

@Andres_Javier said:

You are incredible, all of you who have answered me have encouraged me a lot. I know that I am not alone and I am still in the fight in the debate. In two weeks I have a visit with the doctor because right now I am on sick leave due to depression and we will see in which direction we go. Thank you all very much.

Also, due to the paradoxes of life, I debuted when I was 50 years old and right at a stage where my father's failure to take care of himself (type 2 diabetes) ended very badly, but what you have to do is take care of yourself and move on. I can assure you that there are other much worse illnesses and that it doesn't matter if you take care of yourself or you don't end up badly if you can get along well.greetings and much encouragement

Hello Andrew

If you think about it coldly, any of us are subject to certain vital obligations: eat, sleep, work or have some form of subsistence.... Unfortunately, we have an additional one, it is what it is, we have to assume it.

To see the positive side, I am fitter and eat better since I am a type 1 diabetic, since sport regulates my blood sugar level a lot, and collaterally I find myself with more energy and stronger.On the other hand, I have acquired certain knowledge in nutrition that I did not have before and, the truth is, I have to admit that it is a topic that I like, since, although for us more, it is fundamental for any human being.

The depression thing you mention is another issue, and possibly much more important than being diabetic.Try to find some motivation that fulfills you personally, some help from a professional... Although now you see it very dark, there are many motivations, some hobbies, friendships, a partner... It is putting effort into wanting to move forward.I know that when you're down, it's not so easy to be optimistic, but you have to be willing.

Cheer up buddy

@Andres_Javier hello!how is everything going...?

I am very glad that you dared to write what you feel.

Diabetes is not only about numbers and treatment... it is also sometimes about "not being able to take it anymore", "not wanting to continue and wanting to throw in the towel"...

It's one day waking up optimistic and maybe the next day thinking that everything "sucks" (literally - sorry for the words -).

I have been Diabetic for 36 years, since I was 4. There are streaks and streaks.Don't let them fool you.Also each one has their character and their way of facing things in life.

Each Diabetes is a world.Don't get carried away by "Perfect Diabetics" and lives that are not.

We are Diabetics and humans.We are not perfect machines.

I invite you to continue sharing with us how you feel about Diabetes, and above all, to continue going to the psychologist.I am not hiding: I have needed and need a psychologist and a psychiatrist.AND?

Sometimes thousands of things from everyday life, our character or certain periods come together that don't help us overcome it... and add Diabetes... Let yourself be helped, don't be so hard on yourself and be a little condescending.

A professional will help you, and if at any time you need medication: nothing happens... Shouldn't we take ibuprofen if something hurts?Don't we take antibiotics for an infection...?

I work with oncology patients, and that has helped me a lot to see things from another perspective, but be careful, because there are worse diseases, do not belittle and do not let others do yours.

You feel what you feel and it is legal.Completely.

So cheer up, here we are.Life is beautiful even if sometimes it becomes dark.You will find the light, you will see!

Hello good!!!

I don't know if your depression was caused by DM1?

In our case, I don't have it, but my daughter has had it for 1 year and debuted at 10 years old, which changes the life of those who suffer from it, well yes!But who lives with it also changes.Is it hard?Well too!There are better days and worse days.Which is mentally exhausting... Too!But there are also everyday things that are also everyday things, but you have to think that this life is wonderful, that you have thousands of possibilities.Look for hobbies, I don't know if you have pets, everything you love!You have to rely on that, today there are thousands of groups in which you can search to do thousands of things that you are passionate about if the people around you do not share your same tastes.Whether it's doing some type of sport (routing, gym, CrossFit, paddle tennis...), painting, cooking... Whatever!Get out of your comfort zone that will help you a lot mentally.And above all... sharing your illness with more people who also live it, helps you feel understood, to bring out what you have inside, because many people who are not living it 24/7 do not understand it and that exhausts you mentally.Psychologists and psychiatrists help you a lot, but support groups and talking directly with people who are going through the same thing as you help a lot and even more so when you are so low in spirit, I tell you this from my own experience.

I don't know if I've helped you, but cheer up!And you are not alone... There are thousands of possibilities you just have to find it 💪

@Marabunta said:

Hello Andrew

If you think about it coldly, any of us are subject to certain vital obligations: eat, sleep, work or have some form of subsistence.... Unfortunately, we have an additional one, it is what it is, we have to assume it.

To see the positive side, I am fitter and eat better since I am a type 1 diabetic, since sport regulates my blood sugar level a lot, and collaterally I find myself with more energy and stronger.On the other hand, I have acquired certain knowledge in nutrition that I did not have before and, the truth is, I have to admit that it is a topic that I like, since, although for us more, it is fundamental for any human being.

The depression thing you mention is another issue, and possibly much more important than being diabetic.Try to find some motivation that fulfills you personally, some help from a professional... Although now you see it very dark, there are many motivations, some hobbies, friendships, a partner... It is putting effort into wanting to move forward.I know that when you're down, it's not so easy to be optimistic, but you have to be willing.

Cheer up buddy

It hurts a lot when someone suggests that "with will or willpower" the depressive syndrome is resolved, if your neurotransmitters are at a minimum....

A hug.

Hello Andrew,

You have done well to write here, reading us and sharing helps a lot in this disease.Totally, DM1 makes you be aware of your body 24 hours a day.I've only been with her for two years, but the beginning was horrible and I had the same thoughts as you.

For me, it is key to detect what wears me out the most and learn how to solve it in my body, especially by reading this forum, books, articles (certain things could have been taught to me by nurses, I believe, but that was not the case).What has helped me the most is that I can disconnect from DM1 most of the day, with glycemic stability logically being key:

FEEDING

-Reading The Glucose Revolution, by Jessie Inchauspe.They are concepts that most of us know related to food, but it explains the chemical/biological process of each one to internalize it well and also practical cases.Following the guidelines in this book has helped me a lot to stabilize.(I have it in pdf if you want it).

-Reduce the intake of processed foods and carbohydrates and know when to take them.Not a keto diet, I consider that carbs are necessary, but in my daily life, I have a routine quite adapted to this, and I have managed to keep my glucose stable throughout the day.This is what relieves me the most mentally, because I don't have to be aware of ups and downs every day.Then on the weekends, this changes, I usually make some pizza at home, arepa, hamburger, (even if it is "fast food" with quality ingredients and as natural as possible)... and I have to pay attention until about 4-5 hours after having eaten them.

ACTIVITY

-Strength and cardio exercise.I have always done it, for physical and mental health, now with even more reason.In fact, on my debut they told me not to exercise, and it was terrible for my mind not to be able to use this.Also, if one week I can't do sports, it is immediately reflected in my graph.Or if I go to the gym but the rest of the day I'm sitting or lying down, too.I don't go in much more here because it's a drawer, the most important thing next to food.

INSULIN

-Adjust the slow insulin to the millimeter.Also key for me, although it may sound obvious, there are times when I would get overindulged and although I didn't reach hypoglycemia, I would feel hungry all day and looking at the app, I didn't feel well.

-Party bowling.As I told you before, this may be taught by nurses, but they never gave me "the class" on rapid insulin.I learned to use it in my body by feeling (with head).For the weekends, when I eat mainly carbohydrate meals, I prick myself 3 times, once before, once an hour, and once after two hours, normally 2.5/1.5/1, I set the timer on the activity bracelet, it vibrates gently, I prick that and 0 roller coasters.Before, I waited to see if it went up and down in the app, and by the time it acted it was too late.When it is something specific, such as snacking on one of these large cookies, with one puncture I usually have enough if I am more or less active.

SENSORS

-Put the sensor on my buttock (especially in summer).This seems silly, but for me it was a before and after when I read in the forum that Ruthbia was wearing it in this area.It works the same (good and bad) as it does on the arm, and it helped me stop people from asking me what that was (it was always followed by a talk trying to explain what DM1 was, the typical thing where your habits are questioned when the other person's are worse, etc.).Honestly, since I share the disease less or not at all with non-diabetics, I save myself a lot of anger.

-Activity bracelet.I originally bought it for swimming training, but it has turned out to be the best substitute for the sensor alarm.It can be configured as a mobile notification mirror, but I only have FreeStlye calls and alarms active.The cell phone is always silent.I set alarms at 70 and 120 in the free app, and I receive an alarm on the bracelet with a soft vibration, with time to act.I try to look at the app as little as possible, only when it vibrates, and this puts a lot of stress on my mind.To do this you also have to have a mobile phone with good connectivity with the sensor, I recently changed to a €150 Xiaomi and it is great, with the previous one I couldn't have done this because it always disconnected.It's also wonderful at night, although I try not to go to bed with destabilized glucose (eat dinner early), if it rises at 4 in the morning, my bracelet vibrates without an alarm that would give me a heart attack or wake up the neighbor.

MIND

-Read this forum.

-Sport.

-Be with people with DM1.I have only been with 3 more or less close people with the disease, and simply exchanging a few sentences, sharing some nonsense, showing them the app, makes me feel the world inside.

-Prioritize yourself before all activity.Another point that helped me, which I never know how to explain well, is to try to change the approach to the illness, instead of thinking, for example at work, "it's a shame to stop because I have to take care of my glucose externally", thinking that this is time that you dedicate to yourself, because you are more important than anything you are doing.

In short, a set of many habits/lifestyles, which at first overwhelmed me a lot but which I have already internalized and are part of my routine, simply to have more glycemic stability and not have to spend 24 hours looking at the app, which in the end is what unloads me mentally.

Maybe there are many things that are obvious to you, you have been living with this for more years, but I hope something helps you.

Good luck ❤️‍🩹

Hello Andrés, here is another one who feels very identified with you.

This September it will be 10 years since I was diagnosed and I still relive the first day as if it were yesterday.Furthermore, at the beginning, because of the diagnosis, the poor management that was done of the units that I had to put on, the moment in life I was in and the extreme self-demands that I imposed on myself, I ended up with agoraphobia.For half a year I was unable to leave the house, and being at home also made me panic, eating, sleeping, even showering.Everything I did was a very rapid change in my blood glucose levels.Later, I discovered that I only noticed hypoglycemia when they were <50 and without a sensor that was a lottery, every now and then it was at 30 or 20 and the feeling of dying was horrible.

To overcome agoraphobia I had no choice but to choose between controlling my glucose or my peace of mind.After always being hypoglycemic, I started to be afraid of it and wouldn't let my values ​​go below 200, and that plus the stress led me to be at +300.In the end I chose my peace of mind, and not demanding so much from myself, 150 was going to be bad, but it was going to be much better than 200-300 or 30-20.You can't imagine the change that decision meant.I got out of agoraphobia in the next 6 months and, although control still took me a couple of years, to this day I still say that "I'm still alive, it's not bad."I have a glycosylated 6.3 (not that bad).

After all these years, and having been quite well, I have also reached a point where I feel exhausted, both physically and mentally.Additionally, over the years I have been diagnosed with several more autoimmune diseases and I am reaching my limit again.It's non-stop.A year or so ago I decided to take the step and order an insulin pump. I think it will take me away from being so attentive, and that the 800 small decisions and corrections that we have to make every day will make me feel relieved.I know that I am going to continue having to count portions, and enter what I am going to eat, but not having to adjust the slow speed every now and then, not having to puncture myself a zillion times, or enter the data into a separate calculator... I really hope that all of this will take a weight off my shoulders.In the end, the pump thing was also complicated for me and they didn't put it in until June, but we are already on our way.

I'm telling you this last thing because I think that sometimes all we have to do is change.Mine, for now, is that.Maybe yours is finding a hobby that keeps you busy, or writing a journal;Play, puzzles and forcing myself to go outside so I could walk my dog ​​again helped me a lot during agoraphobia.Try to find something that you really want.

Lastly, I think these are streaks, and they come and go, but you have to take care of yourself!

Thank you for sharing something with which we feel so identified.

A hug!