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diabetes and guilt

hollyslot

hollyslot

Well-Known Member
Messages
167
Location
London, United Kingdom
Type of diabetes
Type 1
Treatment type
Insulin
I hope this doesn't sound too moany,
but I often feel very guilty about how I care about my diabetes. Even though I try really hard and never neglect it, I feel like I am never doing it right, and I should try harder. For example, if I go low at school, I get really fatigued and it kind of puts me off for the rest of the day. I feel guilty for not injecting the right amount even though I am very mindful. Like I feel embarrassed, I often fall asleep in class when this happens and my teachers realise. I don't think they know why I get so tired though.
I guess I feel like my diabetes affects me too much, especially when I don't want it to, and I feel guilty for not getting it right when I imagine others have it much more 'under control' than I do.
can others relate?
 
Hey Holly, I understand where you are coming from, I have felt at times the same about hypos, I almost want to switch off once I have one and just go to sleep I find them very draining. I think it also depends on the severity of the hypo too. I very often inject with a bit of guesswork however I do low carb so even eating a high protein/veg meal is guesswork as i'll still convert to glucose, so in that respect I don't feel like i'm doing justice to my diabetes as it's hard sometimes to work it out.

It sounds to me like your running high a fair amount ?

Have you tried keeping a diary ? If you can do this you will start to take some control back, it sounds like you're feeling out of control so just guessing your doses and it's draining you mentally as you're then running high and then this is making you feel bad. If you can get a diary going to log your carbs/doses/times it will help you to see patterns and start to act on them, i use Diaconnect on my phone - if you have a smart phone this will help a massive amount. Taking control will help you feel much better.

Try not to feel guilty though, it's something that you can manage but it shouldn't define how you feel ;)
 
Hello Holly!
There are people in this forum who are diabetic unicorns. Their blood sugar levels are beyond perfection.
I, too, would like to reach this stage of knowing my condition so well. But, I try to keep reminding myself that these people have had diabetes for more years than I am alive.

Do not be so strict on yourself. We will get there. It takes patience and observation and time.
Be kind to yourself. Things will, eventually, work out.

Like you, I also run either too high or too low… there seems to be no in-between and I have not managed to figure out how to achieve these beautiful, balanced numbers. I try to remind myself that it is a process. Diabetes teaches us patience and perseverance.

As for feeling embarrassed, please do not be.
There is nothing embarrassing in feeling tired from trying to help yourself and to balance your condition, even if this means that you feel sleepy in class and your teachers see you. You are sleepless or tired because you are tackling an important matter in your life (not because you were waiting until late for a phonecall from a random boyfriend whose name you probably won’t remember in 2 years time).

I cannot give you an advise on how to handle your diabetes as I am still in the process of trying to figure things out myself; but, I can give you an advise about your relationship with others in regards to your diabetes.

Do not allow others to set the boundaries for you when it comes to your diabetes.
Instead, you set the boundaries and force them to respect them and also to respect your condition.

Do not expect people to understand diabetes and what you are going through (unless they are diabetics themselves.)
Do not hope for people to be understanding, this will never happen (or, at least, has not happened to me.) Instead, force them to respect your condition even if they do not understand it.

To give you an example, there are people out there who catch a cold and have a stuffy nose and are complaining for a whole week that they cannot sleep properly and that their cold is such a torture! Everyone is usually so compassionate. But. God forbid, if we dare complain about our chronic, degenerative condition… we are described as needy, grumpy, attention-seekers… you name it.

So, do not expect to be understood (if it happens great! But do not aim for this).
Aim to be respected for the effort you make.

And if your teachers don’t understand, or your friends don’t understand, or your peers, family, colleagues don’t understand well, that’s not the point. Make them respectful towards your diabetes. If you need to sleep and skip morning class, if you need to take a break, if you need to calm down and focus and check in the middle of the street, class, cinema room, if you need give yourself time, do it. And force people around you to respect your needs.

No one is more important than yourself.
Nothing has greater priority than you feeling well so as to keep the good fight!

Regards and compassionate hugs
Josephine
 
Juicyj said:
Hey Holly, I understand where you are coming from, I have felt at times the same about hypos, I almost want to switch off once I have one and just go to sleep I find them very draining. I think it also depends on the severity of the hypo too. I very often inject with a bit of guesswork however I do low carb so even eating a high protein/veg meal is guesswork as i'll still convert to glucose, so in that respect I don't feel like i'm doing justice to my diabetes as it's hard sometimes to work it out.

It sounds to me like your running high a fair amount ?

Have you tried keeping a diary ? If you can do this you will start to take some control back, it sounds like you're feeling out of control so just guessing your doses and it's draining you mentally as you're then running high and then this is making you feel bad. If you can get a diary going to log your carbs/doses/times it will help you to see patterns and start to act on them, i use Diaconnect on my phone - if you have a smart phone this will help a massive amount. Taking control will help you feel much better.

Try not to feel guilty though, it's something that you can manage but it shouldn't define how you feel ;)
Click to expand...
Thanks,
I always write down my insulin and carbs and bg readings in "notes" on my iPhone, but don't use a particular diabetes app!
I am not running high but I think I'm having too many fluctuations, and often wake up in the night which could add too the tiredness. I think I feel my bg change quite a lot even if it's not for example going from 3-20! I go low quite a lot unfortunately.
Xx
 
Bluemarine Josephine said:
Hello Holly!
There are people in this forum who are diabetic unicorns. Their blood sugar levels are beyond perfection.
I, too, would like to reach this stage of knowing my condition so well. But, I try to keep reminding myself that these people have had diabetes for more years than I am alive.

Do not be so strict on yourself. We will get there. It takes patience and observation and time.
Be kind to yourself. Things will, eventually, work out.

Like you, I also run either too high or too low… there seems to be no in-between and I have not managed to figure out how to achieve these beautiful, balanced numbers. I try to remind myself that it is a process. Diabetes teaches us patience and perseverance.

As for feeling embarrassed, please do not be.
There is nothing embarrassing in feeling tired from trying to help yourself and to balance your condition, even if this means that you feel sleepy in class and your teachers see you. You are sleepless or tired because you are tackling an important matter in your life (not because you were waiting until late for a phonecall from a random boyfriend whose name you probably won’t remember in 2 years time).

I cannot give you an advise on how to handle your diabetes as I am still in the process of trying to figure things out myself; but, I can give you an advise about your relationship with others in regards to your diabetes.

Do not allow others to set the boundaries for you when it comes to your diabetes.
Instead, you set the boundaries and force them to respect them and also to respect your condition.

Do not expect people to understand diabetes and what you are going through (unless they are diabetics themselves.)
Do not hope for people to be understanding, this will never happen (or, at least, has not happened to me.) Instead, force them to respect your condition even if they do not understand it.

To give you an example, there are people out there who catch a cold and have a stuffy nose and are complaining for a whole week that they cannot sleep properly and that their cold is such a torture! Everyone is usually so compassionate. But. God forbid, if we dare complain about our chronic, degenerative condition… we are described as needy, grumpy, attention-seekers… you name it.

So, do not expect to be understood (if it happens great! But do not aim for this).
Aim to be respected for the effort you make.

And if your teachers don’t understand, or your friends don’t understand, or your peers, family, colleagues don’t understand well, that’s not the point. Make them respectful towards your diabetes. If you need to sleep and skip morning class, if you need to take a break, if you need to calm down and focus and check in the middle of the street, class, cinema room, if you need give yourself time, do it. And force people around you to respect your needs.

No one is more important than yourself.
Nothing has greater priority than you feeling well so as to keep the good fight!

Regards and compassionate hugs
Josephine
Click to expand...
Thank you for this,
I have had it for 16 years (I'm almost 20- still at school due to having a lot of issues in my teens with quite a bad eating disorder) I guess because diabetes isn't visible it's hard to say you feel bad when maybe you look fine! I just always have this nagging feeling that it shouldn't be 'that' hard! And I guess comparing myself to others isn't always great :) I'm quite shy about it and I know I shouldn't be. I totally agree with you about how people complain about having a cold and that being more socially acceptable than someone complaining about their chronic illness! Xx
 
Hi Holly,
This is not unusual at all. Different personalities will affect how we view and treat our diabetes. I am obviously a lot older than you as you mention school and have been T1 for a very long time. I have had just about every possible incident from paramedic attending hypos due to unconsciousness and convulsions as well as hospital admissions due to DKA. I was going through a stage where I was having a disabling hypo probably once or twice a month at night and still getting up and going to work the next day as I didn’t want to feel I was ill or that my colleagues at work wouldn’t understand. I deliberately abused my diabetes to hurt myself when suffering from depressive episodes as well as just trundling along doing the bare minimum to keep myself functioning without getting sick.
It has generally been a negative experience on my life but has also changed the way I am. But all the way through my life I have felt guilt and even sometimes shame about being T1 even though it is obviously not my fault. You are shaped by your own experiences and if these are negative they affect the way you are. In my first few days in hospital I was severely reprimanded by a nurse for doing my own blood test without supervision (I was 9 years old) and was always told by relatives and family that I was “not supposed to eat that” etc . I have had strangers make comments to me about “injecting myself being disgusting” My wife is the only person who has ever engaged properly with me about the condition in my life. My parents, siblings and friends don’t ever talk to me about the condition and as a result I pretty much carry this difficult thing around with me the whole time like a monkey on my back.
It was only in the last few years when I was having therapy for anger issues that the realisation came that a lot of my issues are related to carrying the burden alone and constantly punishing myself for it. I am far better controlled now than I have ever been due to carb counting, pump and the help I get from this forum but still almost daily I will have a BS reading either above or below what I would like and I beat myself up about it. My wife tells me that I am too hard on myself because of this and I know I am. But every little thing makes me feel like a failure with T1 due to my own and other influences.
But the point I am trying to make here is that neither you nor I am a failure. If anything we are both actually bloody superheroes. I would love some of the “normals” to come and walk in our shoes for a week to see what it is like. And when the week is up you could say to them “Nah go on do it for another week and then another and then another ad infinitum” until they had years and years of seeing what it is like.
You sound like you have your head screwed on and don’t worry about thinking you are worse than anyone else. Just concentrate on doing your own thing and remember there are probably millions of T1’s around the world that are doing a far worse job of it than you. You’re brilliant and don’t forget it!
 
Auckland Canary said:
Hi Holly,
This is not unusual at all. Different personalities will affect how we view and treat our diabetes. I am obviously a lot older than you as you mention school and have been T1 for a very long time. I have had just about every possible incident from paramedic attending hypos due to unconsciousness and convulsions as well as hospital admissions due to DKA. I was going through a stage where I was having a disabling hypo probably once or twice a month at night and still getting up and going to work the next day as I didn’t want to feel I was ill or that my colleagues at work wouldn’t understand. I deliberately abused my diabetes to hurt myself when suffering from depressive episodes as well as just trundling along doing the bare minimum to keep myself functioning without getting sick.
It has generally been a negative experience on my life but has also changed the way I am. But all the way through my life I have felt guilt and even sometimes shame about being T1 even though it is obviously not my fault. You are shaped by your own experiences and if these are negative they affect the way you are. In my first few days in hospital I was severely reprimanded by a nurse for doing my own blood test without supervision (I was 9 years old) and was always told by relatives and family that I was “not supposed to eat that” etc . I have had strangers make comments to me about “injecting myself being disgusting” My wife is the only person who has ever engaged properly with me about the condition in my life. My parents, siblings and friends don’t ever talk to me about the condition and as a result I pretty much carry this difficult thing around with me the whole time like a monkey on my back.
It was only in the last few years when I was having therapy for anger issues that the realisation came that a lot of my issues are related to carrying the burden alone and constantly punishing myself for it. I am far better controlled now than I have ever been due to carb counting, pump and the help I get from this forum but still almost daily I will have a BS reading either above or below what I would like and I beat myself up about it. My wife tells me that I am too hard on myself because of this and I know I am. But every little thing makes me feel like a failure with T1 due to my own and other influences.
But the point I am trying to make here is that neither you nor I am a failure. If anything we are both actually bloody superheroes. I would love some of the “normals” to come and walk in our shoes for a week to see what it is like. And when the week is up you could say to them “Nah go on do it for another week and then another and then another ad infinitum” until they had years and years of seeing what it is like.
You sound like you have your head screwed on and don’t worry about thinking you are worse than anyone else. Just concentrate on doing your own thing and remember there are probably millions of T1’s around the world that are doing a far worse job of it than you. You’re brilliant and don’t forget it!
Click to expand...
Thank you,
It sounds like you have really been through a lot with it, and I'm so sorry about how others have acted! I'm lucky as I've not had any negative experiences with other people (aside from the unavoidable awkwardness and looks and questions while I'm injecting around someone I don't know that well). That's a good point about how others don't know what it's like (sometimes I wish either everyone was diabetic or at least people could experience it once haha!) anyway thanks for the responses as i often feel alone with it (like you!) and it's good to hear from others!
 
hollyslot said:
Thank you for this,
I have had it for 16 years (I'm almost 20- still at school due to having a lot of issues in my teens with quite a bad eating disorder) I guess because diabetes isn't visible it's hard to say you feel bad when maybe you look fine! I just always have this nagging feeling that it shouldn't be 'that' hard! And I guess comparing myself to others isn't always great :) I'm quite shy about it and I know I shouldn't be. I totally agree with you about how people complain about having a cold and that being more socially acceptable than someone complaining about their chronic illness! Xx
Click to expand...

Diabetes IS hard. Please don't ever think you're not doing well enough or are somehow failing while every other person with diabetes is doing great. That's not true at all!

Looking after diabetes 24/7 can be exhausting. Even when things are going well it's always hard work thinking about what you're eating, how much insulin to have, etc, etc. Someone here said they needed a second brain to think about it all and I totally understood what they meant. It's like having a full-time job aswell as everything else that's going on in your life.

Don't ever beat yourself up about how you're doing. Like every person with Type 1 you should be proud. We all know how cr*p it is and how hard it can be. Do the best you can and ask for help when you need it. If you feel you're struggling, just try to improve one tiny thing each day. It can make you feel more in control.

And moan all you want here! We get it :)
 
I think with these experiences it's what makes you a stronger person, having to deal with other people's inadequacies or complexes, that's their issue. A good friend once squealed when I injected in front of her and made a big issue about it in front of others, unfortunately that put me off that friend, as I felt ashamed by their response.

Yes you are certainly not alone and it sounds like your doing a wonderful job, try downloading Diaconnect as it's a good tracking app. Also it's good to know you can feel your fluctuations as that will help you act on it. Can you speak to your diabetic team about your lows ? Maybe see if you can get a CGM for a week to test your BG and see what's going on ? Talk about your feelings, get things off your chest and stay positive, we are always here for you ;)
 
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