- advertisement -

Constant overwhelming fear

Discussion in 'General Discussion' started by Artgirl, Nov 21, 2015.

  1. Artgirl

    Artgirl Approved members

    Joined:
    Nov 15, 2015
    Messages:
    88
    Since my daughters diagnosis i live in constant fear wondering what will go wrong. ....im constantly checking up on her asking her how she feels...she's getting annoyed but i can't help it..please tell me this will subside because honestly i don't think i could live like this.This disease terrifies me.
     
  2. sszyszkiewicz

    sszyszkiewicz Approved members

    Joined:
    Dec 24, 2013
    Messages:
    842
    It will indeed subside, substantially, but never go to zero.

    For now, take it one day at a time. one night at a time and one meal at a time.

    The best way to reduce fear is to gain knowledge and experience. With T1D, knowledge is indeed power.

    How old is your daughter?
     
    Last edited: Nov 21, 2015
  3. kim5798

    kim5798 Approved members

    Joined:
    May 7, 2009
    Messages:
    745
    I think that is a normal reaction, but if it persists, I would recommend making an apt to talk to someone. A little therapy never hurt anyone! I know it helped me in those early years of my daughter's diagnosis. Diabetes takes a toll on the caregivers to be sure.

    As the previous poster said, knowledge is power. Read all you can, ask questions, but try not to focus on the negative. Your child will sense this, and you don't want her to be afraid. These kids are amazing and resilient. They can do anything...they just need to plan for it.
     
  4. njswede

    njswede Approved members

    Joined:
    Feb 9, 2015
    Messages:
    385
    I think fear and worry, both rational and irrational, is normal in the beginning. My obsession was that I thought things had been going pretty well in the beginning, which made me believe that something horrible was waiting just around the corner and that it was going to be extra super bad to compensate for the smooth sailing in the beginning.

    What happens after a while is that the irrational fear subsides but the rational remains. Nowadays, 10 months later, I worry much less about the day to day issues. I know we can handle this. Now it's more the long term issues. What will happen when he's a teenager? When he goes to college? Will we always have access to the top notch health care we currently have? Is an A1C of 6.5-7 good enough to avoid complications in 30-40 years? Those kinds of things.

    Talk to someone. I don't know which area or country you're from, but you use mmol/dL instead of mg/dL, which leads me to believe you're not in the US. Where we live, the pediatric diabetes team has a social worker on staff who can help with these issues. Either directly or by referring you to someone. If your diabetes team has a social worker or something similar on staff, that's probably a good place to start. But please talk to someone. Don't think you're supposed to suffer or deserve to suffer. Heck, if you can't find anyone else to talk to, talk to us!
     
  5. DiabetesMama

    DiabetesMama Approved members

    Joined:
    Sep 4, 2015
    Messages:
    258
    Hi Artgirl. What you're feeling is totally normal. I was overwhelmed with these thoughts too. I didn't think I would ever be able to deal with all the thoughts, pressure, and worries. Eventually, life does go on and things become second nature. I can't tell you how often I would wake up first thing in the morning, lay awake and ask myself if this was really happening. I would cry in the shower so I didn't upset my son. I would loose it in the grocery store picking up ANOTHER box of test strips or lancets. The cost of insulin was heavy on my mind, but far worse the fears of the unknown. I would advise you to do some reading because the more I read and learned, the more at ease I became with everything. Knowledge is power. Take it one day at a time. It will get easier, it is just going to take time. And your daughter can do this! And so can you! Please take care and keep us posted.
     
  6. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    The only cure for this is education. Buy Ragnar Hanas' book on managing kids and adolescents with Type 1. Any edition will do, find the cheapest within the last 5years and read it, really read it. The reason folks were going off on NPH in the other thread is because using it successfully demands understanding insulin duration and peak times. If you didn't get that from your training, and it seems like you didn't, you need it. We fear and get hysterical about what we don't understand, start by understanding what your daughter is injecting and it will go a long way in minimizing your fear.
     
  7. Ali

    Ali Approved members

    Joined:
    Aug 1, 2006
    Messages:
    2,219
    Agree with this. Relax, breath in. Run your kiddo higher till you feel comfortable with what you are doing. Take a year to learn, to adjust and just accept less than perfect numbers and try to avoid super lows, those are numbers under 40. You still will have many numbers under 40, so just correct and move on and numbers over 400 so correct and move on. The goal is not not have those numbers going on for many hours without a correction. If you do fingersticks regularly, and sorry that does mean overnight checks, you will avoid those issues. This is why people keep saying get on a CGMS as soon as possible, it helps with this. but even without that just commit yourself and your kiddo to checking often.
     
    Last edited: Nov 22, 2015
  8. suej

    suej Approved members

    Joined:
    Jul 17, 2013
    Messages:
    172
    Sorry you are having to deal with this. I happen to be a paediatrician but when my son developed diabetes 4 years I also had constant overwhelming fear, I still have my moments, but slowly over time you will learn to cope. And you will get to know your child's diabetes and become the expert in your child. What your are experiencing is such a normal reaction to a life changing event, but it will become easier over time. If you can get friends and family to help with cooking etc, and allow yourself some time to rest. Before we got CGM for the first 2 years as was not available here my son tested 8-10 per day and in the night. GCM really helps with the fear - it is a back up, so if you can get it, do. And reading Gary Scheiners think like a pancreas and Ragnas's book helped me too. Hang in there and hugs.
     
  9. sarahspins

    sarahspins Approved members

    Joined:
    May 5, 2009
    Messages:
    2,205
    Honestly, this is going to sound awful, but it needs to be said - STOP treating her that way! I was not that much older than your daughter when I was diagnosed, and while I had been living on my own for about two years, if I had someone constantly checking on me and asking how I felt I probably would have wanted to kill them. YOU are not the one with the disease, you need to take a chill pill and figure out how to support her, rather than making her feel like she is CONSTANTLY under attack or "broken" (because even if it's well-meaning, I promise you that's how it feels, and it is not good). Your daughter likely wants nothing more than to feel "normal" - you can help her with that, but not by constantly checking on her and asking how she feels. She's almost an adult - if she doesn't feel right, she doesn't need to be asked. Yes, you can absolutely keep tabs on her, but there are more positive ways to do it than constantly hounding her about it. YOU may feel scared, but take a second to consider how SHE feels.

    I do have to say though, as someone who's relationship with their parent was DAMAGED because of diabetes, even now, 15 years after my diagnosis, I pretty much can't talk to my mom (who is a nurse) about any of it, I don't DARE test in front of her - because she either "freaks out" about the number (which is just a number, after all, and doesn't matter if it's low, high, totally normal, or whatever, it's none of her business and she is not capable of having a normal reaction to whatever it may be) or tries to shame me for not "doing better" (which again, is ridiculous - if I am running high due to a failed site or because I'm getting sick, how exactly is that my fault? It's not, it's just part of T1D, the numbers are just information, what i do with them is what really counts) or she's absolutely convinced I'm in "really really poor control because I have to test SOOOOOO much" (when reality is, if you don't test "all the time" as a T1 odds are pretty good you are not in control at all). So I do my best to avoid it. It's gotten worse since she was diagnosed with T2 and after a few months on meds was able to fully control hers with dietary changes alone, and maintains an A1C of about 5% - which is frustrating because she's turned into food police (not necessarily saying I can't have things, but always commenting on how she wishes she could eat _____) she just doesn't "get" why I can't get mine that low too (I've only hit the 5's once, at 5.9%, and I won't do it again, it wasn't safe, and wasn't pleasant). When she asks me what my last BG or A1C was, I flatly tell her that it's none of her business.

    Honestly, I hate this because while she is convinced she's never been anything but 100% supportive, but from my perspective that's about as far from the truth as it could be - when I was diagnosed she was firmly convinced that "sliding scale" was the only appropriate way to treat diabetes with insulin, she didn't have any concept of the newer analog insulins (and no amount of trying to explain them has helped that) and she flat out couldn't wrap her head around the concept of carb counting (she was all about exchanges and fixed meal times because that's all that the diabetic patients she'd ever had used) or taking a correction dose that wasn't connected to a meal, and when things were new and scary, I really felt like I couldn't talk to her, because all I got in response was how "wrong" my doctor was in regards to my care even though she clearly knew next to nothing about managing type 1 diabetes.. there was no "I'm sorry this is so hard" - it was pretty much all just about how I was failing, and that really sucked. She (yes, as a NURSE) was absolutely convinced when I first when on a pump that it was basically a "cure" and I wouldn't need to test any more... so every single time I tested around her after that was met with "why are you testing, I thought you didn't need to do that so much any more" - and it kind of snowballed from there, and all because she never recognized how ignorant she was and never did anything about it. Please don't go down that path.

    I do agree with everyone else that knowledge is power - do everything you can to be informed and educated about this, and that will probably ease your fears a lot. That is the one thing that I wish both my mom and my husband had done in the early days. If that doesn't help, then seek the help of a therapist.
     
  10. MomofSweetOne

    MomofSweetOne Approved members

    Joined:
    Aug 28, 2011
    Messages:
    2,739
    Has your team talked with you both about a Dexcom? Ours takes a lot of this out of the picture. If anything, mine shoves the receiver at me and says, "That's your toy." (The pump is hers, though I'm one of two people she allows to touch it). We don't have the internal feelings of highs and lows they do, and it is a stress release to be able to glance and not ask.

    The Dexcom is really nice, too, for nights. I remember thinking each morning, "Will she be alive?" I've been thankful for it this fall when she had staph infections and the antibiotic had her sleeping almost around the clock for a week each time. It was so nice to be able to monitor her from first floor while she got the sleep she badly needed. Without it, I would have been waking her with a BG check every 30 minutes or so due to the insane basal increases she needed because of the infections and medications.
     
  11. DiabetesMama

    DiabetesMama Approved members

    Joined:
    Sep 4, 2015
    Messages:
    258
    MomOfSweetOne- That's so funny! You're toy! Mine has pretty much said the same thing, like "Here, babysit Dex for awhile" It's really hard to not want to check his numbers and the Dex is the best way to help me relax and him not having to be reminded. The Dexcom has been the best thing, almost as important as the pump. Yes, I think we all have that little voice in our head about "What am I going to find this morning?" The Dexcom does add an extra safety net and I have been able to sleep much better, well, between alarms. It does help to ease my mind and I know that the Dex will catch the trends and let me know if there is something I need to address. I ALWAYS suggest a CGM because they are such a great tool with management. I hope that you can get a CGM Artgirl, it will help you more than anything else. Take care and keep us posted.
     
  12. Mimikins

    Mimikins Approved members

    Joined:
    Jun 22, 2014
    Messages:
    203
    Hi!

    I was diagnosed at a similar age as your daughter. Yes, the constant fear will (eventually) subside, but there is always going to be a little bit of worry/fear. One of the things that has helped me is to not view those thoughts as entirely bad but instead a sign that I really care about myself and don't want to hurt myself from being careless about my diabetes. This video is one of my favorite TED talks; it discusses how to make stress your friend instead of the enemy. I feel like one of the big keys to diabetes is how you manage it emotionally. It's going to be difficult to learn if you believe that diabetes is a death sentence, and your daughter's worth is based off what a dumb meter or A1C says. Diabetes is a challenge, but millions of people are living normal lives with this disease.

    Education will be your best friend. One of the things that really helped me through the grieving and adjustment process was learning everything that I can about diabetes. Think of diabetes management like a tool box: as you continue to learn, you will gain more tools that can be used, and you will learn how to use those tools. There will be some times where using a certain tool is not the best (like fixing a window with a hammer), but you will have the option of using another tool instead; the struggle lies in finding what tool is the best to use for which situations. One of the best places to learn is the diabetes online community. Many of us have "been there, done that" and know what tools work best for certain situations.

    I don't want you to feel hurt by what I'm going to say next, but I would have gone crazy if my mother was constantly hovering over me and my diabetes (I'm lucky she knows how to use the glucagon kit and knows that 20 is low and 400 is high). Your daughter probably appreciates that you're concerned, but she most likely wants you to treat her the way you treated her before diabetes. Nothing is different from then and now (only a few defunct cells within her body). Instead of thinking of yourself as the sole person to manage her diabetes, think of both of you as a team (I assume she is also learning how to manage her diabetes). Tell her that you're able to help her if she is confused, tired, burned out, or wants you to help, but you will let her manage everything she wants to manage on her own. She might use your help, or she might not; what really matters is that she is controlling how independent she is with her care.
     
  13. Sprocket

    Sprocket Approved members

    Joined:
    Mar 6, 2014
    Messages:
    196
    Wow, this post is very similar to my mother - but the type 1 is my daughter. My mother was also a nurse. All she knew was the sliding scale. She points out the negative and obvious all the time like - those highs and lows will cause her complications in later life................Wow, that's way too high................ she shouldn't be eating all those carbs.........and to put the icing on the cake, she was adamant my daughter got type 1 because she had a sweet tooth when she was a kid and ate too much candy (this couldn't be further from the truth anyhow!) despite all the research I threw at her. We came to an agreement that she just keeps her opinions to herself. She can't seem to say much supportive, so I just asked her to never mention it again.
     
  14. Artgirl

    Artgirl Approved members

    Joined:
    Nov 15, 2015
    Messages:
    88
    it's been close to one month and I am starting to finally calm down and feel more confident about this, but I still do worry a bit. Thanks for all of your support and help.
     
  15. sszyszkiewicz

    sszyszkiewicz Approved members

    Joined:
    Dec 24, 2013
    Messages:
    842
    Hey thats great!Take back bit by bit what life was like before the bomb dropped. Constantly learn. Respect it, but dont fear it. You *will* be fine.
     
  16. kiwiliz

    kiwiliz Approved members

    Joined:
    Sep 25, 2008
    Messages:
    893
    I am glad you are feeling a little more confident. I still have to fight the urge to ask about how she feels and have learnt to change mid sentence to "how is ... Your homework/gym/friend going/doing" :D
     
  17. quiltinmom

    quiltinmom Approved members

    Joined:
    Jun 24, 2010
    Messages:
    1,188
    This is me too. I make it a point to ask about other things before diabetes. And I used to sort of freak out over high numbers, but I realized it was pushing him away, so now I just ask if he knows why he is high. If he does I let it go, if he doesn't, I might asks few follow up questions, but I stay calm, and don't let it bother me.

    To art girl, I'm glad you are feeling better. It is hard enough at first, but throw teenager stuff in the mix...I don't envy that. But you will find your way. It sounds like you already are. We want to support you in that. Like others said, your fears will probably never go away completely, but you can learn to manage them I a way that supports a healthy relationship with your dd. good luck!
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice