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feeling defeated

Discussion in 'Parents of Children with Type 1' started by jenm999, Nov 29, 2014.

  1. jenm999

    jenm999 Approved members

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    Man, this disease sucks. I thought I was doing pretty well, but I think it was adrenaline or something. Here we are 8 months since diagnosis and I am a weepy mess. We're doing fine medically, I'm just so so sad my little guy has to deal with this. When did you start to feel OK?
     
  2. nebby3

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    Honestly it tooke three years to really feel over the initial shock.
     
  3. Sarah Maddie's Mom

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    I remember being 5-6 years in and finding a bunch of long expired juice boxed in a handbag I hadn't used in ages. I broke down right there in the closet. In other words, likely we all have occasional flair-ups of sadness and anger no matter how long it's been. BUT the good news, at least as I've experienced, is that as time goes on they get less frequent and less intense.

    I still get cranky about the fairness thing, but 99+% of the time it doesn't really cross my mind.

    My advice? get some exercise, try to get some more sleep, drink more water, join a good book club, listen to more music, just pay a little more attention to taking care of yourself and be patient.:cwds:
     
  4. KHS22

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    I hear you. We just hit the one year mark, and I feel like emotionally I am doing worse now that at first. I think at first you just deal because you have to. Then, it takes a bit of time for things to sink in...

    For me it has been small little realizations. Like a colleague commenting that her pregnancies will now be considered high risk (shes 3, why I'm thinking about pregnancy I don't know...), but it made me weap... I've had a few of things like that.. just little moments of realizing things are different, harder, and grieving.

    Anything in particular giving you trouble right now?
     
  5. Mom264

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    Twelve years in and I can still become overcome with emotion with the right stimulus. Fortunately it happens infrequently now. Yes, the disease sucks. But I'm very happy that you have connected with CWD. It is a great place to come when you are feeling all alone.
     
  6. jenm999

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    Thanks, all. Nothing in particular is stressing me out - hypos now, complications later, etc. - I'm just worn down by the relentlessness of it. I have an appointment with a therapist on Weds (and she used to be a RN and is familiar with T1, so at least I won't have to educate her first) and will try to reboot my exercise program and stop eating garbage for stress relief.

    Our Dexcom speaker broke so the last few nights I've hardly been sleeping, waking every few minutes to check it. It's like having a newborn again! I'm humbled by technology but it's also scary how much we rely on it.
     
  7. Just Jen

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    Given that we just celebrated Thanksgiving - when we are supposed to count our blessings - I'll enumerate a few related to T1D.

    1. I'm so happy that my daughter has this now, and that we didn't have to go through all this twenty years ago or more.
    2. I have several friends who have children with very debilitating diseases - think in a wheelchair for life and with the brain of a three-year-old - even though they are in their teens. I have a good friend who lost a child to brain cancer at the age of 7. A family at church has a son with only one limb. There are worse things to have.
    3. Of all of my children, my T1D child is the only one who isn't deathly afraid of needles.
    4. One of my older children has learned how to care for her sister and wants to learn more so that she can be a babysitter for people with T1D kids.

    There are days when I struggle with asking "why", but I learned that it's much more effective to my emotional state to focus on the positive and to be thankful for what I can. It also helps put me back to sleep when I'm up in the middle of the night after a finger stick and trying to wake her up enough to down some glucose tabs or a juice box.
     
  8. BarbDwyer

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    It does seem to get harder instead of easier. The fear and worry is so heavy. All the thinking and doing and counting and planning and waking - it takes up so much space.
     
  9. KHS22

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    I love how you phrased this... so much space. It does. In our minds, in our hearts, in our closets... it just feels so relentless and suffocating sometimes.
     
  10. sszyszkiewicz

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    When I get down, I read articles like these:
    http://www.diabetes.co.uk/news/2014...ct-aims-to-cure-type-1-diabetes-91685172.html

    http://viacyte.com/press-releases/v...py-successfully-implanted-into-first-patient/

    http://www.theguardian.com/society/2014/oct/10/diabetes-stem-cell-type-1-breakthrough-harvard

    http://www.nbcnews.com/health/diabetes/bionic-pancreas-astonishes-diabetes-researchers-n130956

    Also think about the technology you have now, and how it helps you. Think about what the Gen6 Dexcom sensors might be like...potentially no more fingersticks. The Freestyle Libre (currently only available in Europe) does not require fingersticks, so its just a matter of time.

    I have setup a google alert "type 1 diabetes cure" and i get an email each day, and the search returns all kinds of postive sounding things. From people doing advocacy/raising money, to news about research, and even some quack cures which are actually funny to read. The point is I get a positive email about T1d once a day and it tends to cheer me up some.

    I realize none of the above eliminates worry or immediately reduces the burden, but it does provide an emotional counter balance.

    Finally, and perhaps this is a guy thing, bring an *attitude* to the table. I liken diabetes to this unwelcome guest that will not leave my home, but that does not mean I have to make him comfortable. I imagine every low I catch before it becomes serious as being the equivalent of throwing his sorry rear end outside in a cold rain to wait for another chance to ruin my kids day. It helps to visualize this guy outside in the rain, freezing and soaking wet, shivering uncontrollably, looking pathetic, hopeless, and unworthy of any pity. Every high we bring back into range, or prevent, I imagine looking T1D in the eye, face to face, and ominously whispering to him

    "Bring it".

    I also try not to think too far into the future. This war is won one day at a time.

    You love your child. You have the best care available. You are getting smarter with every experience. The technology available to us newly diagnosed is amazing compared to what they had not long ago. There are smart people working the problem and we are not a 1 in a million disease. There is serious cash to be made when they can cure it and that is a good thing.

    Hang in there jenm999!
     
    Last edited: Nov 30, 2014
  11. shannong

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    We are just over 2 years into the diagnosis and I would say that the two year mark was a real turning point for me. I find myself feeling much more positive and optimistic about life and the life my son will lead. Having said that there are still days when diabetes really throws curve balls - adhesive allergies, sites not working, drastic changes in insulin needs, lows at night, etc. that can sometimes beat me down.
     
  12. jenm999

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    Thank you all for the sweet and supportive posts! I'm feeling better today. My son (age 7) packed his own lunch, calculated the carbs and wrote it on a post-it for the nurse! Moments like these I know we are going to be OK. :)
     
  13. mntgrl

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    We are only 5 days into this and I had my first real meltdown at home this afternoon. Just as someone mentioned "The fear and worry is so heavy. All the thinking and doing and counting and planning and waking - it takes up so much space." This is exactly how I was feeling today and then I say to myself, this is forever, so exhausting. And I am just so sad, so sad that this is the new norm for our daughter. She has been so strong, I on the other hand feel like I'm falling apart at times.
    It really helped finding this forum and hearing other stories, similar emotions to my own.
     
  14. sszyszkiewicz

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    Hey mntgrl, welcome, but I am sorry you have to be here. Here, however, is not a bad place to be. I hear ya, about your daughter being strong. It was the same here with my son that first week.

    Ask questions. There are lots of parents here who have been there and back and share very willingly.
     
    Last edited: Dec 5, 2014
  15. mntgrl

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    emotionally exhausted

    I feel like every time we do a blood check, I have questions! The Dr told us not to focus on numbers at this point since we are still trying to regulate things. She is still high but when we were in the hospital she was DKA and her ketones are no longer that high so she is not in danger. But it is so unsettling, constantly looking at numbers, questioning things, making sure the numbers are right. I can't imagine feeling comfortable leaving her with a babysitter. It is just so life changing. I know things will settle down and we will get more comfortable with things but it is just exhausting.
     
  16. jenm999

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    I'm sorry you've had to join our little club. It sucks. But our kids are amazing resilient little troupers, each and every one of them, and your daughter too! It's a very steep learning curve and will take time. Talk to your doctors and read everything you can. I'm 9 (9?!?!) months in and still learning every day.

    I hear ya about the dates. You need that bond with your spouse more than ever now. My husband's mom is local and retired, and used to babysit every few weeks. I didn't realize how lucky we were. She's just now starting to feel comfortable taking care of him, and that's with constant checking in. Nights are hardest because BG is especially volatile with growth hormones, dinner foods tend not to be packaged so carb counting is a guessing game, kids are cranky at night, and that's when we as parents feel most stressed because of the risk of nighttime lows. So today we are having a daytime date! She is having them at her house to play, walk the dogs, play board games etc. and we are going out to a nice lunch and then Xmas shopping. Not that this is necessarily the solution for you but you just need to adjust your habits. Maybe plan to have your favorite takeout delivered after your daughter is in bed and eat by candlelight, then rent a great movie. Also you will meet a zillion people through the diabetes community going forward and maybe you will find a babysitter. Hang in there.

    Look at me giving advice when I started this thread. Ha ha ha!
     
  17. sszyszkiewicz

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    Yeah they send us home from the hospital with instructions that tend to have our kids run a little high as they are trying to dial in on the right dose. I was literally on the phone with the Dr once every two days with numbers and after two or three weeks we settled in on some ratios. I dont know how old your daughter is but one tiny little drop of insulin can make big differences, so they are very careful the first few weeks.

    A good beginners book about this new world you just got thrown into is "understanding Diabetes", also known as the Pink Panther Book

    http://www.amazon.com/Understanding...&keywords=understanding+diabetes+12th+edition

    There are better more informative books but for the newly diagnosed this book is at exactly the right level.

    Oh, and about the babysitter. One thing that has changed (for the better)in the T1D world in the last year is the pairing of Continuous Glucose monitoring (CGM) with internet technology. So look up Dexcom (that is the CGM). To be honest they should not let us out of the hospital without one. They also have a product called Share that allows you to see your daughters numbers as long as you have cell service. Similarly there is also a project called Nightscout that is less consumer friendly but is cheaper and more portable. NightScout requires you to do get a little more into the tech than you might be used to, but its not hard and there is a small army of parents who will help you online. Either way you can keep a remote eye on your daughter. This greatly reduces stress for both you and the babysitter.
     
    Last edited: Dec 6, 2014
  18. BarbDwyer

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    Yes I agree. I really wish they would have sent my 13yo home with one. He would have accepted it if he'd have started with it. He is dead set against it now. You can only force so much on a teenager before you lose the war. He's still honeymooning so his numbers aren't scary but we don't see the spikes either. Take it one day at a time I guess but I would feel so much better if he had one.
     
  19. mntgrl

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    Thanks for so much great input :) We were given the Pink Panther book in the hospital. I haven't spent a lot of time reading it yet but I'm sure I will learn on it a lot. I've read a lot online and I guess at this point, I'm more comforted by reading people's stories on forums than anything else.
    Good advice on date nights. My husband and I talked last night, really for the first time and I just broke down crying. I had sort of been holding things in, not wanting to cry in front of the kids. I had one meltdown in front of them and felt bad but they were so sweet and understanding. Today was better than yesterday. I suppose with time things will improve but I know there will be highs and lows, lol, that is ironic, right?!
    I am finding support from a family at our church who have a son with Type 1 diabetes. And the more I talk to people, I find distant connections with people who have dealt with this disease. I so appreciate the input!
     

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