Having activities "outside" of diabetes, first rock bands and partying, maybe not the best thing to do but well, it was important not to pass out and miss all the fun, and more recently working out, helped me avoid the doldrums. I had a few years when we had junior where I was pretty sluggish and gained quite a bit of weight and was kind of moving in the wrong direction overall, both physically and mentally (although, of course, "I don't need any help or to do anything differently...") but getting into an activity got me motivated to do an ok job keeping my BG aligned?
It sounds like you are doing everything you can do as a parent but seem to only have the choice to get tough and aggressive getting him into some type of program? I'd say to have him hang around here and see if we can help him but it sounds like he doesn't want to change?
acidrock23, exactly! He doesnt want to change, so he has told me many times. He says its a losing battle, has tried many times and it doesnt work and he is tired of fighting (those are his words)then 2 days later he is up and around trying to make things right. I told him to sign on here yesterday and read my posts, but not sure if he has yet. Thank you all for your support. I understand this is a very controllable disease but at the same time very frustrating. I feel so bad for anyone having to deal with it.
A great resource for the psychological side of diabetes is the Behavioral Diabetes Institute- http://behavioraldiabetesinstitute.org/ its pretty incredible! Your son's story is heart breaking. Fear, anxiety, and depression are so entwined with the physiologic effects of our disease that when it becomes crippling it hits very close to home, we can all understand why he feels this way. I completely agree with all of great the advice given- CGM to help your son retrain his mind-body connection (I bet he is feeling symptomatically low at 100 mg/dl), friends with T1, and someone professional to talk to about how he is dealing with the disease. Sending healing energy!
Hi Laura- I've been Type 1 for 19 years, and am now 30 years old. So, I've been through his age, all with Type 1. It is HARD! And scary, and the fear can be debilitating.Of course, I think working with a counselor or support group would be best, but if he is unwilling to do that at this point, maybe a few other things can help. How are his medical bills currently being paid? I'm assuming he's still on your insurance, since he doesn't have a full time job? Maybe one way you can help get him motivated is to see the necessity of him having to take care of himself in the very near future, since he won't always be able to rely on you for insurance coverage? Another thing to try might be to try to get him to get his blood sugars in range in a step-wise fashion. So, instead of letting himself run in the 300s all day now, maybe get him to get it down in the 200s consistently. That way, he's not in danger of going low, but is still better than 300s? Then step down to 180s, etc. Also, something to point out to him is that if he's been running high for so long, when his blood sugars go lower (but not in the hypoglycemic range) he will feel low even if he is not technically low. Until he spends more time in lower ranges, his body will feel low even though he isn't. It takes time to get acclamated to normal ranges.
Also, something I dealt with for a while during my teens: Having low blood sugar feels a lot like having an panic attack. You feel nervous, shakey, sweaty, etc. Because I was always nervous that I was going to go low, I actually developed an anxiety disorder!I got into this weird feedback loop where I was nervous to go low, so I had all this anxiety which made me feel like I was low, even though I wasn't, which made me worry more, etc., etc. I had to get help from a counselor and also took depression/anxiety meds for a few years to help, before I learned to control my feelings on my own.
What your son is going through is not uncommon for a person with Type 1, and it may help him to know that what he's going through is normal and that a lot of us have gone though it and have come out the other side as happy and productive people who live very full lives.
Good luck! I (and I'm sure everyone else here) are happy to help in any way that we can.
Hi Laura. I'm glad you've joined TuDiabetes and I hope that we can help you and your son come through this really hard time, feeling strong and clear about things. You sound like a great mother! Two of my children are close to Kevin's age. They don't have diabetes, but they've had ups and downs in their lives. It's hard to watch our adult children navigate through challenges, making choices that we're pretty sure won't be good for them, but not being able to take over for them.
I hope that, if Kevin can get some help, he'll come to realize how much is diabetes affects his whole family. He's worried about lows, for lots of good reasons. The rest of the family is worried about them, too, and worried about him. Diabetes always has an impact on the people around us who care most about us. If he can begin to work through his depression and start to get his blood sugar under control, I imagine that you'll all feel much better.
Keep talking and asking questions. This is a great place!
Thank you Erin for that reply. He is on medicaid which pays all of his bills. He did try the step-wise trick and it worked for a little while but he gave up. I know this sounds like he is just a stubborn person with no motivation and doesnt care about it but having trouble with the disease is what has made him act this way. I get very upset and mad at him and then feel terrible after the fact because he does need help. Im sure if he felt he could turn things around he would. Keyword is if he felt,he feels there is no hope. I myself have panic disorder and I see him experience these attacks when he feels he is going low. Were you on anti depressants and xanax? The dr prescribed him Paxil but he hasnt started it yet. I am going to search for a diabetic counselor and go with him for the first visit and take one step at a time. Thanks for your help Erin.
Wow, you guys are great! I/we belong to many forums relating to diabetes and the responses I have received on TUDiabetes is so much more than expected. I feel good about this, the work is getting Kevin to feel the same way. But I am working on it as you can all see. Hoping and praying for a positive month ahead! Thanks to all!
Hi Laura- I'm glad he has medicaid that can help with his medical coverage. Dealing with all of this can be hard enough, but adding loss of coverage into the mix can be overwhelming! It doesn't sound like he's stubborn at all, it sounds like he's been through what a lot of us have! Also, please don't feel bad or guilty for the feelings you're having towards him, it is complicated and it's OK for you to love him and get mad at him at the same time. :) I was on several different antidepressants (zoloft, effexor, mostly). I had a really good counselor who helped me learn strategies to manage my anxiety (like breathing/meditation exercises) so I never needed xanax, but every person is different. I've never taken paxil, but I know some people that have had success with it. I hope it goes well, and we're all here if you or your son need to reach out for support.
I wonder if you could get Kevin to his PCP? I'm sure his Dr would put him on some medication that could treat both depression and anxiety. Then, when he is feeling better, maybe he will be more open to counseling, taking better care of himself, etc. It seems to me that getting him to a Dr or Nurse Practitioner that he knows and trusts would be a good first step. He is so fortunate to have you as his mom, right now I think he just needs helps out of the hole of depression/anxiety. (I know getting his BS's in control would help, but when you're feeling overwhelmed, you have to start somewhere.) Hope that helps! Nori
I would like to begin by saying that you are a wonderful mom - what I would give to have the support your son does ;)
I was diagnosed at the age of 17 and had years of trouble with my glocuse levels, resulting in a heart attack and DKA at 19 (unfortunately, my heart stopped and I suffered some brain trauma -memory loss- because of it); I recovered, but was forced to stop working about 5 years ago. It can be a very isolating experience, but I would strongly suggest your son join here (if he has not already) - I felt alone for years until I met my husband (nearly a decade ago), but even the world's most amazing and understanding spouse cannot remove the loneliness that can sometimes come with diabetes and I have struggles with depression (which improved when my diabetes came under better control).
Joining TuD really has helped me a lot (I've only been here a month!!) and I have never felt understood the way I do here, outside of my husband and mother-in-law, and the endo clinic I go to. :)
Diabetes is a lot of work (worth it!) and you cannot ignore it, which makes it really complicated and tricky, especially if you do not do the work.
Where are you located? US? Canada? (If you are in Canada, look for an LMC near you!)
We are all here for you and Kevin (this is a wonderful community), and wish your family all the best - it sounds like Kevin really needs someone to talk to and if it is another T1D, this is the best place to do that :)
I am 23 and have been a type 1 diabetic for 17 years. Mostly through my teens it was a struggle and I had real issues dealing with my disease and wanted to give up. I never had any other diabetics to talk to and I felt as though no-one understood me and I was very much alone. Over the past two years, my diabetes was out of control an I felt that no matter what, I would never be able to get it under control. Early last year, things started to settle a little and my blood glucose was getting lower and I felt happier that I was 'getting the hang of it'. Then, out of the blue I had pains in my legs, I was very ill and then was hospitalised with DKA. Just one short week later, I was woken in the night by paramedics as my partner couldn't wake me. My levels had crashed causing me to go unconcious. It happened a month later too. This crushed me. It felt as though it sealed the fact that I would never be able to control my diabetes and all my efforts felt completely and utterly useless. I then started to experience mental blocks regarding my injections and I just couldn't do them anymore. I'd administer my basal doses but barely any bolus insulin and I'd starve myself so I wouldn't have to inject. I was in constant pain and it felt like I was dying every day. I lost a scary amount of weight and I felt disappointed at waking up in the morning to fight another day. I knew what I needed to do to get better physically but I thought "The one thing I need to do to make me better is the one thing making me absolutely miserable". I felt there was no answer. What was the point in surviving if I was going to live a life of complete misery?
The answer for me came as a simple goal - If I have nothing to lose, why not try for a week to get better. If I see no benefit then I don't have to continue, right? It wasn't the healthiest frame of mind to be in but that's how my sugar filled body was working. As soon as my levels started coming into a healthy range and I was eating more, my entire perception changed! I had no idea how much my high sugars were affecting my mood and I can say that today I woud much rather have these injections daily and work at controlling my diabetes than going back into that horrible black hole of giving up.
My savior was knowledge. The more I learn about how to control my sugars, the less frightened and frustrated I am about my disease. I read Ginger Vieira's book (Living in Progress: Your Diabetes Science Experiment)and it literally saved my life. It was a major step in my progress as I finally understood how to stay healthy and in control. It explains everything so easily and I would recommend reading it!
You may find that if your son has better sugar levels for a few days that he feels a little more positive about things.
If you or your son want to talk about anything then feel free. I would love to help as much as possible, as would everyone else on here :)
What you describe as a step-wise approach is actually a pretty successful technique called Exposure Therapy. It is a key part of cognitive behavioral therapy and there are a fair number of counselors who can help with this approach. It it not really something you can do on your own and you really need someone to push you through it. You basically need to expose yourself to the condition which causes anxiety (like lowered blood sugars) and through repeated exposure, desensitize yourself.
I don't know that you necessarily need a diabetic counselor, but one with experience in cognitive behavioral therapy and in particular exposure therapy would be great.
I know exactly how your son feels. I was paralyzed for years, fearful every day of my life. I tested ten times a day, was afraid to sleep soundly, and was basically miserable. In March 2011, my mother bought me the Dexcom Seven Plus and it has saved my life. I was afraid to get one but I have not regretted it once. My HbA1c is 6.0 and my leg pain has gone away and I AM NOT AFRAID OF LOWS AT ALL ANYMORE. I see them coming now, I can preemptively strike against highs and lows and have learned so much about how my body works. He is in the dark without it and I know exactly how scary that can be. I believe 100% that every type1 needs a CGM. I cannot say it passionately enough! I am a 28 year old college student who has led a dynamic and exciting life but the Dexcom is the most amazing thing that has ever happened to me. If you'd like, I could talk to your son about it. Feel free to message me and I'd be happy to share my contact information. I hope so much that your struggle is soothed soon. His struggle is my struggle and I am on the other side of it. Please let me help. Love Jen
Thank you for your kind words Nori :) I agree with you, depression causes loss of motivation, etc. Therefore, as long as he is depressed he wont have much luck moving forward at all.
Hi Bec,Im sorry you have had so much trouble with T1. Isnt it strange how some are DX and just "go with it with few problems" and others just cannot adjust? Im happy for you that you found someone who you can spend your life with and I do understand that sometimes even your closest friend or loved one doesnt remove the lonliness you feel. Of course, as his Mom if I could take his place I would, having a disease at the prime of ones life is devastating. But, such is life and it does happen! Hopefully he will chime in here soon and introduce himself and see he is not alone. Thanks Bec!
Hi Katrina, I was reading your story saying yes, this is exactly what Kevin is going through. especially the part where you say What was the point in surviving if I was going to live a life of complete misery? I cant tell you how often i hear that from him.I feel your pain katrina and as they say some have to hit rock bottom before they get better. I guess thats whats happened to you. Im happy you have found your way and hopefully you can stick with this, its so encouraging to hear happy stories :)
I'm so sorry for the pain and struggle that Kevin and your family are going through. I can feel the love for your child in your words. As a mother, I feel for what you're going through and I know that you would take it upon yourself in a flash if you could rid Kevin of this burden. Kevin is blessed to have your support.
I was diagnosed Type 1 at the age of 27 so I didn't live through my entire twenties with this disease but I did go through an extensive grieving phase for the life that I thought I would have....why me, it's not fair, at my age you're supposed to be living life to the fullest not worrying about your health. I think most of us have been there. Then I woke up one day and realized that my daughter needed her mother and I needed to do this for her, even if not for myself. We each find our motivation differently and in a different time frame.
I've had some scary lows that have tested me to the core more than anything else in my lifetime so I understand the fear of lows. After 25 years I have become hypo unaware so that I don't always feel I'm low. The way that I have overcome the fear is through bringing my blood sugar down gradually as others have suggested "in steps", through using a dexcom cgm, and through being super-prepared 24/7. I keep a gatorade in my car drink holder at all times. I keep jelly beans on my desk at work and gatorade/coke on my bookshelf in my office. I carry a glucagon shot kit in my purse and keep one on my desk. It may sound paranoid to some people but it's peace of mind to me. I can function without worrying 24/7.
The dexcom cgm has been life changing for me. I can see the trend lines and know when I'm heading low before I get low so I have time to do something about it. I was having lows almost every day right before I got the dex and now I've almost totally eliminated them. Now when I'm heading low, I can treat it before it gets scary.
Kevin may also eventually want to think about going to an OmniPod pump if he didn't like the tubed pump. I'm old school and still on injections because it's worked for me until recently (old lady hormones kicking around) but I'm going to the OmniPod soon, primarily because it's tubeless - for me, the idea of being attached to a tube is not appealing.
You will find alot of support here and I hope that Kevin will come visit us too..whether it's now or when he's ready, we'll be here. Bless you Laura.
