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Stop the ride...

Discussion in 'Parents of Children with Type 1' started by nanhsot, Feb 29, 2012.

  1. nanhsot

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    I want OFF. Seriously, I need some serious support, encouragement, kick in the pants, whatever. I'm just done, worn out, sick of it all, over it.

    My facebook friends saw that this weekend my daughter was baptized. This was a very special event in my family and one that I anticipated and wanted to find the joy in at this time in my life.

    Ds woke up to a 450 that day and could not attend. My husband barely made it and was late for church. There was so much joy in her, in her friends, in her sponsor, in the church as a whole, but my heart was so heavy, my joy overlaid with crushing grief. I just can't see the point sometimes, why that day, why that moment? It is simply not fair and I'm so done with it.

    I've been up every night, every 2 hours for a few days, and up at least twice a night since he broke his leg. I'm just plain tired.

    We did a global basal change, had some lows last night, overate (though he tried hard not to) and is high again now.

    It just never ends, and I don't understand how he will deal with this on his own. I don't know that I can deal with this emotionally much longer, I feel like I am literally about to snap.

    I also know I don't have a choice, and I'll keep putting one foot in front of the other, and I also know that he's almost 18 and before long I won't have to deal with it, but I just pray that things level off so he isn't having this happen so often. Because I really don't see him waking himself up and I see him taking the easy road and running high at night.

    He's mean when he's high. I fear for his wife. Ok, FEAR is too strong, but seriously, he's not a nice guy when high. I try to give grace, but will his wife?

    I know it's stupid to worry about a marriage that doesn't even exist yet, but this is where my brain goes.

    I want a cure. I hadn't cried over diabetes in a long time and this week I can't stop.

    I'm sick of holding it in. I put on a smile and I go out into the world, my friends have NO CLUE. None. They know sometimes that I have night checks and am tired but truly no one can understand unless they live it. I'm feeling very lonely and isolated right now, and I'm doing it to myself because I can't stand to be around people complaining about everyday things.

    I'm losing most of my friends and it's my own fault, I'm pushing people away, and I'm just tired and have no time nor energy to invest in friendships.

    No point in this. Not even sure I'll hit "submit".

    What do you do when you hit this wall? What can I do to find my balance again?
     
  2. emm142

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    Nancy, I just wanted to say I'm so sorry you're feeling like this. I can't give much advice since I've never been in your position, but I have been in the position of feeling like giving up and not knowing where to go next, and I know how much it completely sucks so I felt compelled to respond to your post.

    I know that you know this, but just always try to bear in mind that your son is 17 and that as he gets older he will likely learn to keep his emotions more in check (i.e. stop expressing them so visibly). I sure hope that my 17 year old brother (non-D) gets better at controlling his. ;)

    It's a long process and the vast majority of teenagers (and adults!) with D do go through at least one phase of not looking after themselves as well as they should. This is not confined to people with diabetes. Sometimes I run higher than I should. I have non-diabetic friends who put themselves as just as much (if not more) risk of damage by drinking excessively, smoking etc. I know some people who do both. It is just a fact that most people do not look after themselves as well as they possibly could at all times, and it is possible that your son will also go through a phase of this, but all you can do is do as much as you can to teach him about D, inspire good habits and let him know that you will be there for him if he is aver struggling.

    Big cyber hugs your way.
     
  3. nanhsot

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    Thanks for the reply and hugs, seriously.

    As for the 450, it had nothing to do with poor management that I can tell, it just came out of the blue and is probably related to his fracture. It happened the next night too, just shot up high at 3am (I checked at 2a and he corrected a mild high and again at 5a and there it was~HIGH). Inexplicable. That's what has me so frustrated. Even WITH good management it stinks.

    As for the meanness. Oy. I hope he learns to control his emotions. He's is flat mean, argumentative, confrontive, MEAN. I have learned NOT to ask him to test when he's like that but I do KNOW he's high. Asking him to test will just escalate.

    He's actually seeing a counselor right now and that particular issue has come up (the counselor is D too).

    It's just the everydayness of this disease that's wearing me down. I'm sick of holding it in but I also know that not one single person around me understands or particularly cares. I mean, they care about me/my family, I didn't meant that to sound so dramatic, but truly, people want to support but they don't get it, can't get it. And sometimes that knowledge weighs me down.
     
  4. emm142

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    The stuff about poor management wasn't directed at the 450, but about the comment you made of "I don't understand how he will deal with this on his own," just trying to say that he won't be perfect all the time, but the majority of people manage to push through the imperfection and do okay in the end.

    Again, I'm not a parent, but I feel like the course of my feelings about my diabetes has been fairly similar to what a lot of parents describe. It seems that immediately after diagnosis there is a period of being extremely upset and stressed. After a few months or more, most people seem to get it under control and learn to live with and accept diabetes. And then after a few more months (probably usually after a couple of years or more?) that's when burnout and general fed-upness about the everyday nature of diabetes really hits. It's difficult for me to judge this, because I have other mental health stuff going on which has nothing to do with diabetes and has been going on for longer than my diabetes but which I'm sure affects my attitude towards diabetes at time, but for me I go through phases (of a few days) of extreme frustration and burnout about the constant nature of diabetes. But it always passes, even though at the time it feels like it will be there for as long as diabetes is.

    (I should probably end this with the general advice that if you feel like this is more than just burnout and you are having symptoms of depression for an extended period of time, it might be time to see your own doctor.)
     
  5. hawkeyegirl

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    I find that my feelings about D are cyclical. And unfortunately, right now you're going through one of those low, low times. I always come back out of those times (usually when D decides to start playing nice again), but it's no fun while I'm down there.

    With respect to no one understanding, this past weekend I visited some friends of mine in Iowa. They had a severely disabled son who unfortunately passed away last year at age 5. While I was there, the mom asked me if Jack's diabetes was "in control." The reason I mention their situation with their son is that they themselves were in a tragic, tragic situation (even while their son was still alive, as he had a myriad of issues that make D look like a walk in the park), yet they are so far away from understanding MY situation that it's laughable. Their son's disability has made them very sensitive and understanding when it comes to kids with disabilities, and yet they don't know, they CAN'T know what we deal with. They do take an interest in Jack and diabetes, so I tried to explain a little about our "control", but the more I talked the more I realized that words were wholly inadequate to explain any of this.

    That was sort of a meandering, semi-pointless anecdote, but it sort of underscored to me the futility of giving much thought to other people not understanding what this is like. It's not to say that that I don't think about it sometimes, but until you live it, you just don't know. And sort of the flip side of the coin is that you don't know (and I don't know) what it is like to be a child with diabetes. We will never walk in those shoes, and that's always a good thing to keep in mind too.

    I'm really yammering on now, but I guess I'll just sum up by saying that we're all right there with ya. It has been over four years for us right now, and I'm feeling burnt. the. hell. out. And sort of despairing over the fact that four years is a drop in the bucket to the lifetime sentence my son has with this disease. But it is what it is, and I do my best not to get sucked down into the vortex of those sorts of thoughts. I'll end by reiterating what Emma said about talking to your doctor if you think that depression might be at play here. I hope you're on the "upswing" soon. :eek:
     
  6. Becky Stevens mom

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    Oh you poor thing:( Nance, you made the first big step by admitting that youve hit that wall. Youre not standing their running up against it over and over again and trying to break through by yourself. You came to the right place for some help. Dont worry, we've got pick axes and shovels honey;)

    I know it feels real bad right now. I know youre feeling a bit hopeless and helpless. thats why youre thinking about the future, your son's future with a wife and family and job.

    Back in 05 after doing this for a couple years, I had some sort of breakdown I guess you'd call it. Steven was in school part of the day but I still thought of little else but the diabetes. If he woke up with a high number I would pour over his log books in search of other days when he woke up with a high trying to figure out where it might have come from. I read and reread books about diabetes. I didnt want to go out and do things, hell, I didnt want to get up in the morning and test his blood cause it might be high and those numbers frightened me horribly. I did go to a therapist but didnt take any meds. I forced myself to start walking again and to go bird watching and gardening. Things I had loved to do BD (before diabetes) It wasnt always fun but it was necessary to seperate myself from Steven and the diabetes.

    I always like to tell myself and everyone else that life with type 1 is a piece of cake. Maybe convince myself that it is. Some days it really is! Wake up # will be a perfect 90, with in range #s all day long. But then there are days like today when he woke up and was 269. I was like WTF!?!?!?!? and its not always easy to shrug that off and not feel like crap about it. All I can say is that I want you to be happy. I want you to know that youre ok and that youre doing the best that you can. If you think you need to talk to someone, go for it, it really might help or if you need to take some meds, that can really help too. I would like you to talk to some grown men with type 1 if youre willing. I know a couple of men who post in here who I am friends with on FB, Im sure they'd be happy to talk to you and give you a glimpse into your son's future.
     
  7. Mommy For Life

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    First...big hugs! I am so glad you are venting...keeping this inside is awful. I am only a newbie in this D world, but I still understand the frustration, the fears, and thinking about how will my child's future be. On the flip side, I am also trying desperately to keep a positive twist to this crappy situation. I am seeing a counselor and I do take anxiety meds. I have no shame is posting that here because if I didn't see someone or take meds. I am not sure how I could deal. Certainly, I am not going to be on meds forever, but I do need them now. I agree with Becky about making some time for YOU. Maybe it is just a quick walk or getting a coffee and sitting and people watching. You have to make the first step to move away from D. I would also add that if you "future trip" which is so easy to do with D, that you try to think of the positive to. The power of thought is huge. You are not alone. If you can, lean on your faith. I really have to trust in my faith with God, that He will watch over my girl. That He has plans for her that will be beautiful and be filled with love and happiness. Will things be tough, sure, but with her own faith she will survive....and so will YOU and your son. Hang is there pancreas mama you can do this.....you are just in a valley now...the mountain is coming soon. :cwds:
     
  8. MTMomma

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    Hang on

    Hang on. My thoughts are with you. Think I sent a PM. It either went 3 times or none at all. Let me know.
     
  9. Helenmomofsporty13yearold

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    As soon as you posted your son's injury, my thoughts went to "Oh, Oh, poor Nancy". (We dealt with a concussion recently). It is so tough on the active ones to have to learn to slow down with an injury and guess who gets the brunt of their frustration...the one who loves them unconditionally.

    My DD gets really mean with me when her blood sugar hits the high teens (275 and up), but she does not do this with her Dad, friends, etc. Will her future hubby have to put up with a lot?...I think he will, but the whole package will be well worth it. She is the coolest kid as I imagine your son is, too.

    It is really hard on us to go without good sleep for so long. We stress out our adrenal glands and end up feeling "fried". I had a stress test done to check out my heart about 5 years back. The cardiologist told me our bodies were like a bicycle. They can be made up of all these parts that are in good condition, but if the parts are not tightened properly, the bicycle will wobble, fall apart, etc. He said sleep is what tightens the parts and makes everything run smoothly. Even when my daughter is at a sleepover, I still wake up from force of habit.

    My friends haven't given up on me totally, but get frustrated that DD is always my first priority. She will be gone away to college in 2 years, so I want to be there for her now. I will have lots of time to myself soon enough just as I had lots of it before she was born. Getting out to a yoga or meditation class helps me a lot as does a hike.

    Our kids will mature into taking care of themselves. It is so easy to feel guilty when our kids have these crazy, unexplainable highs and others are posting about the perfect numbers they are enjoying. The kids hear the anxiety in our voice, even though we are trying to be calm. They don't want to worry about diabetes and they don't want us to either. Allison is right, we need to trust that God (or our own kid's higher intelligence, for the non-spiritual) can do a better job taking care of them than we can.
     
  10. DsMom

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    I'm so sorry you're going through this. Know that you are not alone and so many of us experienced, and continue to experience, days like these. In my case, I've learned to ride those days out like PMS days.:rolleyes: Not to make light of your situation at all...I just use the same approach. I know these days where D gets me so down will occur, I feel them coming and can't really avoid them, and sort of just surrender to them. I feel sad, I cry, I get angry and let it out...knowing that these bad days will not last forever, I will find my footing again, and things will brighten up. You sound like a person of faith...perhaps you can seek some comfort in that? It is often my son himself who will draw me out of the dark days...he will say or do something so sweet or funny, and I just feel so lucky and blessed that he is here and we have the tools and knowledge to keep him healthy and happy.:cwds:

    I have also stopped letting high numbers ruin our plans...unless he is actually nauseous or feeling bad in another way, I will change his site, bolus, and go on with the day. I figure, I can treat him just as effectively no matter where we are as long as I have his meter and other supplies. That, of course, is a personal decision every family has to make...and one that took me a few years to make myself. I completely understand why you would want to keep him home at 450...and am so sorry it had to put a damper on such a special day.:(

    It seems like such a cliche to say hang in there, and it will get better...but it truly does. In the meantime, be kind to yourself. If you have time, do something you enjoy, if only for 15 minutes, each day, to relax and recharge. Look for that light at the end of the tunnel...because you will see it soon!:cwds:
     
  11. MommaKat

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    So, so glad you hit submit. There's every point in your posting that, so that people with far more experience and understanding [than I] can (and have) added support. I just want to throw in some extra hugs your way, and a few thoughts.

    I am so sorry you're having such a hard time right now. When you posted about the fracture I worried about what his healing held in store for you both; that it would be exactly what you've described above. It's certainly what we experienced when dd hurt her leg this fall, then again with her pneumonia.

    I come here because of people like you - who share their experiences and thoughts so openly, adding support and advice wherever possible. I cried when I read your post, but I appreciate the beauty in such open honesty. It made me realize, too - that even though I'll likely never meet anyone (or very few) from this forum, the parents here share a bond unrivaled and unparalleled by any I have with my IRL friends. No one in our family or circle of friends gets it - they think I'm nuts, that I over think it, that I don't need to get up at night, and that dd will just even out eventually because that's what diabetics do :)confused:) Then I check in here, where everyone 'gets it', and I realize I'm not alone. I wish I could say, do, or add anything to lighten that burden you described for even a second. Reading your post today helped me feel human, normal, and like just another D parent who's recently hit a wall out of sheer sleep deprivation. I haven't felt okay about my emotions, reactions, response to D for almost two months now, and I can't thank you enough for sharing and inadvertently helping me gain an ounce of perspective.

    One thing about bone healing - it takes a couple of months for bones to heal completely. Even though I knew this from nursing, I didn't really appreciate it until I broke my foot this Christmas. It's only in the last week that I've been able to wear my normal, not so high, heels without wincing (or screaming) in pain. It seems like such a long time, but the whole process of bone tissue being laid down, knitting, molding, etc. really does take a prolonged amount of time, and the metabolic demand of that is huge, yet cyclical. That's the part I forgot with dd's leg injury. Osteoblasts lay down bone tissue, but they're not precise, so osteoclasts go in and break some down in order to remold for better structural support. Changes in weight bearing trigger the body's sense of when, where, and just how much bone remodeling is necessary, and has an ebb and flow to it. Our bodies repair tissue while we're sleeping, so the middle of the night spikes sort of makes sense... the catabolic and anabolic processes of laying down and shaping bone tissue would definitely contribute to increased glucose levels.

    I hope you're able to catch up on some sleep, maybe get a small sanity saving break, and feel better soon!!
     
  12. nanhsot

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    Thank you to everyone who took some time to let me know that even this is normal, and many of you feel similarly. There is definitely something reassuring in knowing that you are not alone. The cyclical nature of it all makes a lot of sense to me.

    I think that what I am struggling with most right now is the knowledge that really no one (outside you guys of course) CAN understand, that I have people in my life who simply don't get it and they never will. It's very isolating to realize that. Someone said to let go of it because they can't understand...and I guess that's my current struggle, feeling a bit bitter and sad because it's true. And lonely.

    As far as my mental health, I probably could use a counselor, but quite frankly the idea makes me want to weep more! This week alone I have 3 MD appointments (1 an hour and a half south...the other an hour north...the final one 45 minutes west of my home...the joy of living rurally) for my kids, and my son starts physical therapy next week, I have a part time job...wait, I have TWO part time jobs and I homeschool my kids full time. My mental health is important and yada yada, but I do think it's situational and transitory.

    I'm just feeling lonely mostly. And the grief I felt at diagnosis is back. If I could put his diabetes into MY body I'd do it in a heartbeat. Not a choice though.

    As far as continuing with activity when he's high, that was a NO GO. That's why my husband was late, we hoped he'd feel well enough but he hadn't been in the 400's since diagnosis, or only briefly, and he felt truly horrible, and nauseated at one point. There was no way I was going to ask him to leave the house at that point. He did go to his homeschool classes on Monday, and he woke in the mid 300s that day, so he does pull it together when he needs to, it was frankly easier not to have him attend church and go out to lunch, etc.

    Kirsten,thanks for the bone healing info, I have suspected something similar and have been doing some research but your info gave me new avenues to look at. Unfortunately some of my searches were about high levels of cortisol (which we know he has with a very strong dawn phenom) and non union. Bleh. Letting of that worry, xrays on Friday.

    Thanks to those who took the time to PM me. I will reply later. Ds has a therapy appointment in a little it. I sincerely hope he is able to hash out some of the very raw emotions I saw from him this week. I know this is hard on him as well.

    Edited to add that on the drive in to his appointment tonight I was going over your replies and advice and I have made a commitment to myself to attend a weekly yoga class. I ADORE yoga but let it take a backseat when life is busy, as it is now. But during yoga is literally the only time I ever truly let my mind empty, and focus on breathing, and on my own strength and balance and inner self. Even my prayer time is often riddled with worry and nagging thoughts. But during yoga for whatever reason I can focus and empty fully. I am certainly no yogini or expert, and my practice is a beginner one, but it is one thing I think I can do for myself that will give immediate benefit. A little thing in the scheme of things, but I feel a bit empowered to have made this promise to myself.
     
    Last edited: Feb 29, 2012
  13. Lisa - Aidan's mom

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    I'm so sorry it seems so overwhelming at times :( I wish I had a magic wand for all of our kids!!!
     
  14. Connor's Mom

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    You poor thing! So much at once and I can feel how much you just need a breath, a short break to regroup:(. My son is only 10 and is mean as can be when he is high. I already worry about him being on his own dealing with this...I know my concern will never subside.

    A while back I posted my feelings of being overwhelmed and way beyond tired. I am still beyond tired but, through the encouragement of people here, I forced myself to start taking just a little time each day for me. Some yoga stretches or 10 minutes on the elliptical stopping at the gas station for a fountain soda (my favorite treat stupid right?). I am climbing out of my hole slowly. Find the courage in yourself to let yourself heal.

    Lonely it is, knowing even your support system doesn't fully get IT...but we do and are here to help you through it too.:cwds:
     
  15. danielsmom

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    I for one am ready for counseling...tired of feeling stressed and pissy all the time... I don't need it...my family doesn't need it....I have so much to smile about, but I let the negative energy overtake me more often than not......I've made my appointment and look forward to spilling my guts soon(more than I do already:p)....Hugs to you..We get you!
     
  16. pianoplayer4

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    when I feel like giving up, I go t target, get some diet coke or a really fancy coffee and wander around the store with head phones on until I forget about diabetes. Honestly, it happens more than I care to admit=( if you can, take a break for an afternoon, do anything that isn't about d, maybe just go sit in a coffee shop and do NOTHING! everyone needs a break sometimes.

    As for worrying about your son once he's on his own, I can tell you that I worry about the day my mom drops me off at college too, but He'll get through it, and you can call him all the time:D Maybe he wont have the best care, maybe he'll have a higher a1c than he did when he lived with you, but he'll figure it out, he's got his whole life to get it right;)
     
  17. lgouldin

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    I guess I will be the "kick in the pants" person here:p

    I think about how lucky I am. I know D is a PITA but it could be a whole lot worse. I still have my child and she is healthy. No, some people don't understand, who do not have to live with D, but I don't know what other people are going through either (could be a lot worse).

    My neighbor has to care for her 20 year old son that was paralyzed from the chest down in a accident when he was 18. :(
     
  18. obtainedmist

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    I'm so sorry you are feeling low. We, as mothers and fathers, often take on so much worry and pain, and it usually doesn't help anyone...though it's hard to stop. I've found the Serenity Prayer helpful recently. You know...

    God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference.

    It's very hard to let go of the illusion of control over our almost adult children. Once they become adults, we can't really control how well they take care of themselves, or a million other things in their lives. When they experience pain in their lives, make poor decisions, or act in ways we don't like... it helps to take a step back and lovingly realize that we didn't cause it, can't control it and can't fix it for them. Well, we can try to fix it, but it usually backfires and results in arrested development for them and resentment for us!

    I hope you focus on yourself for a while and do some things that bring you well deserved joy!
     

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