I just got off the phone with our new insurance company and her endo. I consider myself a capable, high functiong adult with plenty of resources. Today I'm feeling so frustrated and sad and burnt out with all that it takes to manage this disease with/for my child.
Aside from the grief for my daughter and her chronic illness I'm tired from struggling with her (she's a teen.) She's resistent to doing what needs to be done to keep herpself healthy in the long run and controlling her blood sugars (doesn't bolus when she should, doesn't check her BG etc. Then there's the battling/advocating/calling/figuring out how to navigate all that needs to be navigated to get her what she needs at school, after school activities, insurance/medical needs.
Finanically I'm fortunate enough to have coverage for her and a decent paying job. I'm a single parent, struggling, always, to make ends meet and the constant changes/challenges nuances are difficult to keep up with.
I'm venting more than anything. We are incredibly blessed and fortunate in so many ways. I just don't have a spouse or signficant other to talk to. There's no one in my life that understands the toll managing all this takes, on a daily basis. I try to be very careful never to show or say anything about how this affects me to my daughter. I'm not the person living with T1, just the parent. Seems trivial to even go down the path of feeling sorry for myself or sad at all.
I wish we living in a bigger town, with more access to support options and I had more time in my day/life to attend to all this stuff without having to squeeze it into breaks or lunch hours etc.
Thanks for listening - it helps just to type it all out.
I’m so sorry, Dana. But, luckily you have this group to vent to anytime you need it! Luckily, we are the few who actually have some semblance of what you’re going through, though all of our situations are probably slightly different. My daughter is only 2 now, so luckily we have total control over her insulin routine, though it’s difficult most days to get her to eat. I’m terrified of what you’re currently going through because I remember how I was as a teen and that was living a fairly healthy life.
We’re here anytime!
Just want to say hi. It does get so frustrating. My daughter is now 7, diagnosed at 2. Last night was both pump quikset change and CGM sensor change. At times I vent at her when she isn’t cooperative, focusing more on getting the task done than how she feels. At times I feel like we do this all the time, why can’t we just get it done. It is easy to forget that for me it is routine, another task to do. For her, it is me once again stabbing, poking or doing something to her little body.
Living with a spouse for 18 years who is diabetic, there are always good times and bad. He wasn’t always the best in control, and sometimes we “non-diabetics” just have to look the other way, because as much as I like to think I really understand, I don’t, it’s not me.
Feel free to vent anytime…your among kindred spirits. Sometimes it is nice to hear you aren’t the only one.
Sending you Hugs Dana! Although not in the same situation, I know so well the feelings of becoming frustrated and overwhelmed then battling the quilt that you feel over those feelings. Vent anytime!
We hear you. We know exactly how you are feeling. It’s so hard and no one really knows what it’s like. I’m having a particularly bad day myself…I try to remember the good days outweigh the bad and this feeling will pass…
From another T1 mom to another, please take care of yourself and know you are doing a great job.
I can understand… I have a 14 year old son who was diagnosed a year ago. I am married, so I’m fortunate to have a husband to help out but I do understand the grief, frustration and exhaustion and not wanting to complain but feeling like life is just not fair. My son is a freshman and doesn’t always check his blood sugar before lunch, he doesn’'t do many extra curricular activities because he doesn’t like to deal with diabetes so he just avoids them. I have had a hard time with friends who have kids of the same age who have no clue what it’s like… However, I am inspired by people who are living wonderful lives with diabetes and hope and pray that my son become one of those people as he adjusts… just knowing other people understand helps me a little. But know you are not alone and you can vent…
You are not alone, hang in there! Do you have other family members that can step in occassionally and give you a breather, lend a hand and an ear? I understand where you are coming from. My niece is just beginning the teenage years and is compliant. I know there will probably be a period of time when she won’t be or her control may suffer. I think most teens and young adults do rebel for a period of time, hopefully, brief. Just keep checking her meter and addressing the issue day by day as it occurs. Maybe try to find a local support group for her and you. She is in this for the long haul, and I don’t think a year of poor control is going to cause too many problems. I think the control has to be poor for a longer period of time. Maybe you can ask her, if she is not going to check BS, finds it inconvenient at the time, or “forgets” to at least bolus for her food before she eats. Have her memorize carb counts of most foods she eats so she knows how to bolus for them. It is easier to bolus if they are on pump therapy. Does she have a pump? I think the greatest problems and rise in A1c is from eating without bolusing.
I totally feel your frustration… I have a husband (every other week) who’s job keeps him away. Even when he is here… he really doesn’t know what I go though. My son is a teen…does what he is supposed to do…and then some… my frustration is the opposite of yours…he over boluses or adds basal increases that I don’t know about because he hates to feel high… the other night he crashed to 41. I love and respect him for all he goes though…as we all do as loved ones of a diabetic…but it scares me… even though he is a teen…the ultimate responsibity of it all falls on me. I view diabetes as an unrelenting bully …sometimes I can keep the bully from picking on my son…but other times… the bully wins. I too am lucky with the insurance we have…but even with that…making sure all the supplies are kept up and there can be a job in itself. It is tough and we deal w/it everyday…and there are no vacations from it…so yes. I feel your frustration. I am glad we all can vent here. I also vent using twitter. It helps a lot. I have family…but my sister’s daughter also has diabetes and I try not to feel like they are compared… but they are at times. I hear things like “how come she doesn’t seem to have as many problems…” So instead of confiding in them… I come here or twitter.
I know the frustration. I also have a teen who doesn’t do what she is supposed to but hopefully it is just a temporary time for them. Listening to adults with diabetes it sounds like they were all challenging at one point then they grew up and started taking on the responsibility of taking care of themselves. There is a time for everything, and a season for every activity under heaven Ecclesiastes 3:1. I was floored the other day when I was talking to someone about a cure for diabetes and my daughter said she wouldn’t take it because having diabetes makes her feel special. This is an indication that she truely does not understand the complications that can arise from having it. As if that was not enough my other daughter responded “there would be 75% less arguing in the house if you didn’t have diabetes”. They really know how to hurt you. One day she will be thanking you for waht you have done for her.
HI,
Please read my other post, if you are interested. It’s long but I hope it will help you. My son was 22 when he was diagnosed and had been playing football on a scholarship, working, taking a heavy course load and going out and having “fun” like any average college guy (translate that to include quite a lot of beer, I am sure). It was a life changing event and a long journey. It can be harder when they are older because you have less control and a lot of their time is their own. I was also a single parent at the time and responsible for helping two of my three kids finish college, so financially stretched. The depression and mood swings for the diabetic patient is the thing that gets so underestimated, not to mention what you as a parent go thru, all the worry that THEY can’t understand, and teenagers/young adults are just so often “egocentric” anyway. (After all, MOM, I AM the one who has this!). They cannot grasp the actual mourning that you are experiencing. In my family, my two daughters want to “mother” my son also. For a long time, whenever my parents or anybody else saw him, they would ask “how is your diabetes?”. He got sick of that being the topic of every conversation and just wanted to be “normal”. You can go along for awhile with things being ok, then an event caused by a low happens and they can be driving, out of town, whatever. You think things will never feel right. You are like a pitcher - you cannot pour water (care) out unless someone refills you. That’s why you need to not underestimate your need for support too. And you do get tired, thinking this will never go away and worrying about all the what if’s. It is a family affair and very hard on anyone who loves the person who actually has this illness. A doctor told my son and me that it takes about five years before the patient and the loved ones/parents get into the groove of acceptance. It’s been 8 for us and I can actually say that HIS maturity and time as well as my own dealing with getting the support I need to help him has finally helped us all turn a bend. There will be other challenges, but always expect the best of your child, don’t baby her too much, listen without judging if you can and let her know if you are also tapped out right now. Ask her how she would feel if the roles were reversed. I am sure she loves and appreciates you. Teens are tough anyway. Have faith, try to hand her over to God and know you WILL get thru this. A person can live a healthy, full, normal life now, for the most part, with Type 1.
My son was diagnosed on 12/1/09 and it has been a life changing year for us. This site has been a God send for me and has helped my family come a long way. My son is 14 and very active in sports. 14 is tough enough now a days for both teen and parent but add T1 to it and its a bit more to contend with. I think the key for us has been to focus on the good things we have in life and the blessings the Lord has given us. There will be tough times but they will pass. God bless you and your family.
Thank you everyone, for your words of support and encouragement. It was another very rough night last night. My daughter was at 550 and very out of control behaviorally (that’s pretty rare, even for her.) I was able to stay calm and supportive while she brought her BG under control Still felt a bit sad last night but it does really help to read (and re-read) all your posts.
I know this post is old but I just wanted to say I sorta understand what you are going through. I'm not a single parent but my husband works second shift and I work during the day. We usually don't see each other much, or in the morning, or as he's leaving. At times, I feel like a single parent, because I manage my daughters Diabetes majority of the time. It's tough and heart wrenching and sometimes I wish life was more simple. My daughter is 10, not a teen yet, but starting this pre-teen drama. So being diabetic on top of that isn't very fun. I hope things are better for you now, I try to just take one day at a time and think to myself that the next day is gong to be better. :)
Hang in there.. there are good and bad days just like for most people.. it's hard harder with this on top of everything. My 14 year old is doing okay with his diabetes but just flunked 4 classes.. it's always something..
Iam a grandmother of a 2 years Type I girl, my daughter lives in the states with her husband and her child... Iam in Puerto Rico...really far. I'm her support through telephone every day and sometimes nights. I know for experience this is not an easy condition...I've been there with them for months and has struggled too. Although my grandchild is still a baby somedays she is tired and do not want them to poke her finger or the needles in her butt or nowhere. And the time of eating is not easy...Sometimes she ask for a cookie and is not easy telling her no, it makes our heart srink...But we have to do it...Our confidence is in the Lord and doing what we have to do. My daughter do not work outside the house, all her days are for her, and her home. Her dady works but anyways help her with the things around their child...
I feel empathy with you, there are days that my daughter feels sooo lonely and far!!!
We are praying and waiting in the Lord...men says no but for Him there is nothing impossible...I know He'll guide Science find the cure.
I pray for everyone going through this and know for you and your daughter. This is a brief of what could be when my grandchild grows up to that age if she is still in this.
Big Hug and new strenght come to you...You are not allone!!! Tita
Please know that ALL of us feel the same way from time to time! I know sometimes I am so sick of it! It never stops! Our daughter was diagnosed one year ago on New Years Eve! Simetimes it feels like a lifetime ago-- other times it seems like just yesturday! But know that you are not alone and YOU NEED TO VENT!!!!!!!!! I'll keep you in our prayers!
We are just coming up on a year diagnosis tomorrow on New Years Eve! Our daughter is 13! She is also very active in sports and its' so tough! But know that you are not alone and that God only gives us what he thinks we can handle! It is tough though-- sometimes I just want to know is she acting like this cause she is 13? Is this Type 1 or what is it? As for sports we have been able to work through numbers with G2 Gatorade! Not that it's full proof!
