Struggling to cope and avoiding my insulin

Catherine4188 said:

Hello all,

I’m having a tough time at the minute and I’m feeling so conflicted about my diabetes management and what I want at the minute. Here’s my story of you have the time to read, any advice or just a sounding board would be helpful.

I’m a T1 diagnosed about 18 months ago. Since diagnosis I had a beautiful baby boy whom I worked extremely hard to get my hba1c down in order to conceive safely and then for 9 months worked tirelessly to keep my levels perfect for, with the final few months hba1c of 32. After having his i breastfed and struggled to stop myself from hypoing and stopped taking insulin for about 2 months. Slowly I needed insulin again but I had little control due to breastfeeding and I was struggling to remember to take insulin and often feared hypoing whilst alone with my kids. I plodded on knowing I wasn’t managing it well but still took my insulin.

Then in June my husband admitted to me that he had very severe depression and to cut it down to the bare bones, he tried to kill himself as s result of his depression. I spent 2 months forgetting about anything I needed a just focus on getting him away from this darkness and keeping my kids going by myself. All the time I put my diabetes to one side and hardly tested or took insulin only when I ‘remembered’. After these 2 months I broke and I’m now also on antidepressants. Part of my depression is linked to my diabetes which I just feel so angry and resentful of. I know it’s ridiculous but not taking my insulin has made me feel like I have some control or say in what is happening to me, because in reality at home my mood, energy, tasks are dictated by my husbands illness and my 2 very amazing but very all consuming children. Not taking my insulin feels good (this is honestly now I feel even though I know I shouldn’t). I’m not taking any insulin at all unless I know I am having something very high in carbs but I just take a small dose. My average level is around 15-18 but I do hit 25-27 at times after eating. I just see the test result and think ‘oh well, don’t want to inject’. I’m having symptoms e.g losing weight about 7-10lbs, tiredness, thirst and lots of night urination. My hba1c was 69 2 weeks ago but I was taking some insulin then.

My conflict comes from knowing I’m damaging myself and being so angry that I’m doing this but feeling an absolute need to have control over something and not taking my insulin. The weight loss is also helping with my body image after gaining so much weight during my pregnancy. I feel like if I just keep doing this a little longer I’ll be back at my happy weight.

I know I need to call my DSN team but I don’t want to admit it to them because then I might have to tell my husband and I can’t face making him feel bad or any more guilt than he already does. I know some of you will read this and think I’m being stupid. The thing is I know I am but my mind just can’t make me feel like I want to manage my diabetes at the minute. It’s so hard to explain how I feel. I just know I do not want to take my insulin and that not taking it makes my mind feel good.

If you’ve been through anything like this I’d love to hear your stories and advice. I feel very much alone right now.

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Hi Catherine
Please dont feel stupid you have been through so much and I can only sympathise and take myself back to my life and I have also been punched and beaten.by diabetes.but I try to fight.back if I can!
Its hard and at.times you must feel desperate like I did but remember you have to control IT dont let it beat you.
Rest and try to fight back if u can once again there is a lot of support on the forum keep in contact it will help a lot.
Hope u are okay soon.

I do sympathise but there's no sugar coating to this. These glucose levels are most likely doing you some serious damage even if you are not yet aware of it.

If you are losing weight and weeing a lot, have you checked for ketones?

Please ask your medical team for assistance with the psychological aspects of managing the condition, you are not the only one, they will have met people with similar fears before.

Hi,
You've been thru such a lot, I'm sorry life has been hard for you. Here to listen anytime.
Please phone your dsn, lots of people have been in denial. Please take care of yourself and don't feel guilty.
A friend I worked with was a type one, she didn't want to accept she had diabetes either. Counselling and CBT really helped her.
Your GP could refer you.
Do you have any other family support?
You'll get stable with the help of your team, please let them help you. I don't want you to get any diabetic complications.
Take care

Catherine4188 said:

Thank you for taking the time to read and reply. It’s nice to know it’s not just me. I’m trying to get the strength to call my diabetes team tomorrow whilst my little boy naps. I just don’t want to tell my family what’s going on. I know they are aware of me not taking total care of my diabetes but they don’t have any idea how much I’m feeling about it. I think my husband knows but is too busy with his own health to be able to take on my burden.

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Thats your first move done.brilliant!
Soon it will get better you'll see.
No one understands my diabetes only us on the forum it is camaraderie which each one of us needs.
Keep going Catherine remember do it for you no one else be proud of yourself at this moment. Well done...

Hi @Catherine4188, Guilt can be a paralysing feeling, particularly when we find fault with ourselves.
But think about what you achieved during your pregnancy with your diabetes control. That is a marvellous effort !!!
The following is based on my experience over 51 years of being on insulin. it is not professional advice, or opinion.
One important lesson I learnt some years after being diagnosed at 13.
Some health professionals, intentionally or inadvertently, tend to promote fear of complications as a motivating tool to get patients to 'comply with treatment'. I was subtly or more openly 'dressed down' for failing to have perfect BSLs, as though my failure was a blot on the doctors' perfect copybook of patient management.
Such behaviours by health professionals can make us perfectionists feel guilty very easily.
And when we fall off the waggon (and yes I have been depressed too) the height of our fall is exaggerated in ourselves by guilt.
Having your husband with his own health problems is another burden, as if you were not burdened enough already.
And, there is really, really no one to blame!!! Blaming ourselves only digs us deeper. What might help:
1) Breathe. Yes, when I feel stressed I hold my breathe. I hold in all the stress, worries, doubts. If I practice breathing in and out, slowly but not too deeply, I breathe out the held up worries and can start to think. Breathe ..
2) Grasp the nettle and ring your DSN. Have a list ready to hand of what you wish to say - staying with facts if you can - you do not need to apologise for what has happened - only the need to feel better which to some degree is about getting your BSLS better. I know that high BSLs make me feel terrible - how can I cope if I am feeling unwell already? Breathe ...
3) Step by step: sharing your concerns halves the worry. Taking on issues one at a time prevents them becoming overwhelming. For example: I look at what is my highest BSL. How can i bring that down to a better level. Do I set alarms on my phone to prompt me about injections, meals and testing? (the alarms could equally be for feeding the children etc) . keep food times and quantities as regular as you can. Comfort eating might ease one thing but not help BSLs. And I found alcohol numbs things but did not help me change things. What is the next challenge ? How can I know that I am succeeding? Set some aims - always allowing for the fact that things change day to day and no one has perfect BSLs. Step by step. And if you are feeling better, that can be infectious for your husband and your children. breathe, breathe
4) develop humour and self-humour. I used to call injection time "javelin practice" and hum an old, old pop tune, "Needles and Pins". A mother used to have her husband and son, bet on what her pre-dinner BSL would be, and the loser did the washing up!
A kite flying friend of mine asks how I am doing (he is T2D) and I reply either; below regulation height (= normal BSLs), in the water (low BSLs), the line broke ( sky high BSLs) Another diabetic friend of mine would politely decline an offered sweet dessert, and if the hostess insisted. he would describe how eating such a delicious repast would cause his teeth to fall out and roof of his mouth to collapse. It go the message across. Making light of one's foibles is far, far better than doubting, punishing one's self. And a healthy sense of self humour is a great role model for children.
5) aim for some form of past time, achievement, no matter how small it seems - cooking, even one special dish per week, teaching the children a new skill or interest ( my bias - my-best-kite.com) and some together time with hubbie ( but I would urge caution with an activity like painting garden gnomes - a friend of mine went nuts about his wife insisting this be their together time) but playing a game of cards, chess etc or "if the children 'allow' it) a computer game !!
6) Given constraints on your time: would some form of counselling by phone be of help to you? Also I found that anti-depressants help me be able to see things more clearly but they did affect things like sexual activity, appetite etc and I still needed counselling.
I hope, little by little, you and your hubby rise to the surface and find that wonderful world with all its beauty.
Children and baby animals are so cute, adorable and resilient - we also owe it to them to be as well as we can and to be able to enjoy, no matter how cheeky, mischievous, naughty and confounding they are. Best Wishes !!! Breathe .....

Good for you, you have taken the 1st step by asking for help here. Being diagnosed with any serious condition is challenging enough, throw in a new baby, older kids, husband with depression and your own postnatal adjustments and you have your hands more than full. No wonder you are looking for some sense of control in the midst of all of this! Grieving our former lives and the loss of our self image as a healthy person is part of the process. You must also be feeling the loss of your husband's support for you as he copes with his own depression & suicidal thoughts. Self harm by not taking your insulin sounds like a big cry for help to me. If you don't mind me saying, your whole family needs help- if neither parent is well the whole family suffers. Your diabetes, while critically important and in need of management like yesterday, is just part of the picture. I'm not sure how health care teams work in your community, but there must be some kind of integrated health & social services program that could pull together a care plan for your family. Start with your family doctor or public health nurse? Someone on the forum who is more familiar with your regional health care organization could probably give you some tips about accessing the whole family help you need.

and please keep in touch with us so we know that you are ok

You probably know this already but high blood sugars are going to make you feel down and depressed, to help your husband, your kids and yourself you must get your BG under control, the fog will lift and you'll be in a much better position to help those that you care so dearly about.

You know what to do it's just that first step of doing it and keep doing it, stop, take a deep breath and do a test then do a correction dose now. Then say you'll do another test in 4hrs time and do it. Just do that today, tomorrow take another small step, then another the next day and so on.

Do it! you can thank me later

Hi again, @Catherine4188, in various ways the whole family is trying to cope. Perhaps your eldest is feeling as though she is being expected to do too much. Whether she is of any age to be able to understand what is happening I am not sure.
Praising her for your helpfulness and doing something special with her which she enjoys ? how to bake a cake, some hobby or game, and if possible something with your hubby.
Family counselling may also be something to consider.
When things are overwhelming it is only natural to hide away but children (whilst being good at playing hide and seek) need your care. And their cuddles and laughter are infectious and uplifting. Breathe, Step at a time.
Best Wishes !!!

Catherine4188 said:

Thanks for all your support. Today was meant to be a step forward but I can feel myself going down fast. I didn’t sleep much last night due to baby being up, lots of confusing thoughts and worry. I called the DSN team and left a message for them to call me. Then I received a message about my eldest who is currently displaying very odd behaviours. Normally a very helpful, loving, kind and caring girl, recently very angry, tired and naughty. It’s making me feel so low, like I’m failing. I feel like such a failure at the minute. Nothing is right but I can’t do anything more, I just want to run away from it all.

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Hi Catherine, all I can say is at least you recognise what is going on so please get some help, it sounds like you are depressed and who could blame you with all that is going on. Your logical mind is telling you what you are doing is harmful but depression takes no notice of logic, you need professional help. As for your daughter, as I am sure you know, children are not daft. She will have picked up on atmosphere and will know things are wrong with you and your poor husband. If you can just get some help for YOU at this time I am convinced your daughter's 'naughtiness' will reduce. In an unhappy household everybody suffers. I know medication is not always the answer but sometimes it can help short term. I see lots of people struggling in my job and there is a lot of 'why don't they just do this or that, or pull themselves together' etc, fact is depression is an ILLNESS of the mind. One more thought, I am betting that you are trying to protect your daughter from all of this by telling her everything is fine, she knows it's not, would you be prepared to talk to her in an age appropriate way, that can sometimes help. Wishing you all the best love. xxx

Catherine4188 said:

Thanks for all your support. Today was meant to be a step forward but I can feel myself going down fast. I didn’t sleep much last night due to baby being up, lots of confusing thoughts and worry. I called the DSN team and left a message for them to call me. Then I received a message about my eldest who is currently displaying very odd behaviours. Normally a very helpful, loving, kind and caring girl, recently very angry, tired and naughty. It’s making me feel so low, like I’m failing. I feel like such a failure at the minute. Nothing is right but I can’t do anything more, I just want to run away from it all.

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Dear Catherine,
NOT IN THE LEAST, you are NOT a failure!! Let me talk to you as if I were a close friend, may I? Fist, you are tired and in need of sleep, just now: so you cannot be your normal self. It's common to have gloomy thoughts when tired off. You will feel better after taking a nap. Perhaps you could ask a neighbour, friend or someone to babysit a couple of hours for your children?
Secondly: what about going to the doctor quite soon, together with your eldest girl? She might just have a bug, who knows (it happens, at this time of the year), or something like an allergy or food intolerance, and you can take the opportunity of getting medical help for yourself, at the same time.
Now don't fret, just make it a priority to get some rest and then think about seeing a doctor both for your girl and you. Probably when you read my post everything will look a lot better and you'll be back to your old brave self.
Let me give you a big hug and press you to my heart. Write again and let us know about you.

just read your post and i can already feel how heavy your current burden is... i am not a mom and have no family of my own yet but i can definitely understand your frustration and anger over trying to control your blood sugars. try to spring back little by little. fight back against that anger and sadness, use a bit of insulin as needed, and take some joy from each good reading that you might get. i know it is never stable, esp now i can imagine how much stress you are in. even that will affect your levels. think of it maybe like a slot machine, a bit of insulin can get you some good sugar level jackpots once in a while
also saw your post about your eldest daughter, maybe she is also feeling the upset in your home. if you can talk heart to heart you might even be able to help each other out. the smallest bond from tough times can mean lots for the both of you, even for the long run. how old is she? children have really good empathy, and coupled with understanding of the situation she might be able to bring some source of joy into your situation
glad to know you have a schedule with your team. hope you feel better soon. wishing you more control over your levels and hopefully recovery and sunshine for you, your husband and your kids. <3

Hi @Catherine4188 It sounds like you've been through alot so well done for taking some time to acknowledge what's going on and wanting to make some changes., your definitely not stupid in any shape or form It just sounds like you have put everyone else first. Unfortunately without you functioning as a fit and healthy mum then the stack of cards will all come tumbling down, so taking control of your management is so important, as you know and have already been told the complications are real and although it's seen as an invisible condition, running high puts you at great risk of DKA as well as complications, so getting healthy is important so you can see your kids grow up and be there for them.

Just take it one day at a time, don't think about the future focus on the here and now, you've done this before so brilliantly too, don't aim for perfection, just aim for a medium which means your mood will improve and you will get more energy, yes you might have a hypo or go hyper, we all do, it's part of this, but don't dwell on the past or the future or the negatives, just focus on now and look after yourself, see your team and be honest about it all, they've seen and heard it before, they can only help you if you help yourself.

Also just be kind to yourself - you have alot to deal with there, but please don't let your type 1 become your last priority, your kids need their mum happy and healthy, so please keep in touch and let us know how you get on ?