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Feel like I'm regressing

Discussion in 'Parents Off Topic' started by DsMom, Apr 20, 2011.

  1. DsMom

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    We've been at this for 2 1/2 years now. I finally feel comfortable with making changes to my son's insulin needs, I'm pretty good at eating out, I don't stress about him at school--I feel like I've come so far. However, in the past week or so, I feel all of the old fears from the first months coming back to me. I don't know why. I recently read a column on dLife about a mom who lost her 13 year old son. He was diagnosed at 3 years old--pretty close to the age my son was at dx. And, of course, I've seen the heartbreaking post from the mom on this forum who lost her daughter last year. I've been obsessing about them. I know these things affect all of us--how do you get through these random "fear fests?" I've also been morbidly interested in finding out mortality rates from hypo in kids, but haven't really found anything. I'm hoping to find a relatively low percentage that will help soothe my fears. Does anyone know this number? I've also been so worried about my other kids. I've seen so many parents on here with multiple CWD. I always feel like I'm waiting for the other shoe to drop. Does anyone know the risks for siblings of CWD?

    Does anyone else go through this from time to time? I went to bed last night and just cried--feeling all of those pressures and fears weighing down on me again. What do you do to combat these times? His numbers have been good lately--and, like I said, I feel pretty competent with his care. I'm usually pretty positive and relaxed about his D. Why is this happening now???:confused:
     
  2. Becky Stevens mom

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    Oh yes:( I have gone through these times especially since last October and to me it felt as if I was regressing too. I think if you find statistics they will show that "dead in bed" syndrome is in fact extremely rare. There is a section in Ragnar Hanaas's book about type 1 diabetes about DIB syndrome but the statistics are for Sweden and the UK . I try to keep it in perspective though, I feel that I need to for my own sanity and peace of mind. Children pass away from doing things like playing basketball or drowning while swimming. I think all we can do is the best that we can to keep them safe using the tools that we are given.

    If you find that you are thinking of this constantly and its affecting your day to day life and becoming overwhelming, please talk to a professional. I did that a couple years ago and it did help immeasurably. Our lives arent easy nor stress free and we can all use some help from others:cwds:
     
  3. hawkeyegirl

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    I think we all go through emotional cycles when it comes to D. There is really no "getting over it." Yes, we all eventually move past the initial fear and shock of diagnosis, but there's no telling when D will hit you in the stomach like a sock full of pennies. :(

    As for "dead in bed," it is rare. Like really, really rare. This may not be comforting (although I intend it to be), but your child is much more likely to die in an auto accident than from DIB. You don't sit up at nights worrying about that, so try to remind yourself that it's not really rational to sit up nights worrying about DIB either. :cwds:

    As for siblings, it's true that our other children have an increased chance of getting D. But the risk is still low - anywhere from 3 to 10%. The greatest risk factor for a sibiling is the age at which the first child was diagnosed (the younger the first diagnosis, the greater the risk). But at worst, there is still a 90% chance that any given sibling of a child with D will NOT be diagnosed themselves. Those are still pretty good odds. :)
     
  4. Sarah Maddie's Mom

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    This has very much been my experience as well.

    I felt really crushed by year 5 because it meant that Maddie had been living with D longer than she had been living without it.

    Year 7 was just hard because I was tired.

    Finding a cache of long expired juice boxes in an old hand bag put me over the edge once. And who knows what the future holds.:eek:

    It comes, and luckily, it goes. Be kind to yourself and let yourself be sad and then let yourself move on.:cwds:
     
  5. kk4jbird

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    Ditto this and yes I am feeling like you right now. I cried as well last night when I read the post and cried and prayed for the family when I went to bed. I also saw the dLife episode with the mom who lost her son during the day while she was out of the house and her friend's son died at night. Well I decided that being sleep deprived and feeling crappy is okay with me. People not understanding the constant vigil and worry is okay with me. People assuming I'm just overreacting and I'm actually a night owl is okay with me too. Being tired and misunderstood is a minscule price to pay in an effort to keep my child safe. So I'll only sleep in two or three hour shifts when needed and not feel pissed off at the world about it anymore and I'll be grateful and have peace that there are people on this website who understand my situation.;)
     
  6. Tigerlilly's mom

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    Sadly, you are not alone in feeling this way..After almost 6 years those fears from years ago suddenly rear their ugly head again at unexpected times. I will walk around with a heavy heart feeling so sad with the thoughts of what Tyler has to endure on a day to day basis for the rest of his life. AND THEN a thread like below pops up and out of the "funk" I am (thanks for sharing yours sons achievment - joan!). I realize that our kids with d are still kids with bright futures who WILL and CAN fulfill all their dreams!


    http://forums.childrenwithdiabetes.com/showthread.php?t=63411
     
  7. Kazee6

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    I often feel this way and then I realize that right now they are doing all the things they love to do. They are happy and for the most part healthy. I focus on the good and work with the bad. I think it would be abnormal to not feel this way at some point.
     
  8. rdhead

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    While I don't have the years in that most do I was surprised at how quickly and quietly 6 months came and went. I completely relate to all comments made here. It took me a long time to realize I was in mourning. I was mourning the loss of the carefree life of my child. Mourning the loss of a life I now see as "easy." The simple act of being able to say to my hungry child go grab something to eat. While with time these things seem easier to bear that sadness and fear never seems to go completely away. It is still there, it sneaks in sometimes as a whisper and at other times it comes screaming in.

    I have experienced this myself this past week as we've been tweaking all the settings on ds's pump. His numbers have been constantly high during the night so we've been having to up his basal and I find myself in a cycle of test and correct. I never gave correction doses at night before but he also was never constantly above 250 all through the night. Last night I felt this crippling fear when at 2:30am his bs was at 123 (a great number actually) having come down from 278 with a correction just before midnight. There was barely any IOB .03 units I believe but I was worried because his basal had been increased. I set the alarm on my phone to check again at 5:00am just to ease my troubled mind. Well when my actual alarm clock went off at 7:00 I woke up in a panic. I had set the alarm on my phone for 5:00am but for the following morning. I rushed down the hall and found him sleeping and he was fine. Morning bs 141.

    How could I have done something so dumb as to set the alarm clock wrong? Is the thought that's been going through my mind all morning. I'm human it's as simple as that. This last week has been hard for me. The increase in his basal settings, the fact that 5 days ago marked 6 months of a new life, that the honeymoon could soon be over. It also began the day we went live with his pump. Yes it was a great day but as we walked into the same hospital to get our training that ds was dx'd at there was a family there, a mom, a dad, and a possible grandma all holding on to each other as they sobbed in the lobby. That flood of emotion that I had at dx all came rushing back and I haven't been able to shake it. The fear, the anger, the sadness have all returned as if they were old friends. Whether it's rational or not it's how I feel.

    Know you are not alone. It gets to all of us. We are human. We are parents. We are parents of children with a chronic pain in the butt disease. Some days it's easy, some days it's not and that's ok. If it gets to be too much and you need to ask for help, well that's ok too. Like others have suggested allow yourself to feel the way you do. Be kind to yourself and remember to breathe. This is advice I'm going to take myself. :cwds:
     
  9. StillMamamia

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    Stuff like this comes in waves. It really does. Sending you big cyber hugs!

    I'm not the best surfer when it comes to this. All I do is relativize (sp?) when going through the scary waves and keep telling myself "It will get better, it will get better."
     
  10. DsMom

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    Thank you. You are right, and that is reassuring. I think I just need other people to tell it to me sometimes!!;)
     
  11. DsMom

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    That is a sad, but good, way to put things into perspective. Thank you!! I think I worry a lot about the sibling thing as well because I watched my niece grow up with D, and then her sister got it when she was 25! Samantha (my niece) was 2 at dx, my Daniel was 4. But the odds you state sound good--and was just what I needed to hear. My mom's sister had Type 1 as well, but the three siblings in the family did not get it. Sadly, my mom passed the gene (not the disease) to my sister and I--and we passed the disease to our kids. Even if my other kids do not get D, I still fear it in my grandkids.:( But we will have the CURE by then, right!!!:cwds:
     
  12. DsMom

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    Thanks for sharing that! It's a great reality check!
     
  13. DsMom

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    Don't feel alone with the alarm clock thing! I'm ashamed at how many times I sleep through the alarm. I think I am going to have to put the clock far away from my bed like I used to in college to be sure I get up!! Thank God, Daniel's BGs have never suffered for my sleepiness--but I do feel awful in the morning.:(
     

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