I am a 28 year old and have been a T1 for 18 years. It has been a roller coaster ride over that period of time but have learned a lot over the years,both positive and negative. I have always been lectured, like every other diabetic, about developing complications if you do not keep your sugars under control but never thought it would harm me. In my late teens/early 20s, I neglected my diabetes or watch what I was eating. My A1C was running between 10 and 11. I buried my head in the sand since I did not know how to properly cope with having diabetes.
Over the past 2 years, I have been dealing with complications from my neglect, such as retinopathy and neuropathy. I have had 2 laser photocoagulation treatments in each eye, In the last 2-3 months, I have also had a vitrectomy surgery with retinal reattachment, which stemmed from the previous laser treatments.
I have tried to straighten up my diabetes and have brought my A1C down to an 8,0. I realize the damage that I have done cannot be reversed butI am trying to remain optimistic. I have been married for 4 years and been with my husband for the last 8 years total. He has resentment towards me for the damage that I have done to myself. He resents that I did not take better care of my diabetes and that I am now facing all these complications. He wanted to have the option to have children someday but that doesnt seem to be an option now.
I am trying to understand his viewpoints. This resentment is outting a huge strain on our relationship to the point where he is reconsidering our marriage. Any advice on how to cope with all of this?! Is this normal for him to feel distrustful? Any help would be great. I hope to gain some good friends from this site. Thanks
I think he wants to know that you are trying. He is probably scared of losing you and or taking care of a blind woman in a wheelchair for the rest of his life, esp when it is totally avoidable. I am married now for 21 years and I have been through it all. Every low turns into an argument.
What helped me was to get an insulin pump and a CGM. I think if you just focus yourself on taking care of it , then he wont feel like he has to, or that he is alone in it.
There are a million different ways of getting it done. You can get a cgm and allow him to look at it when ever he likes to make sure. When it alarms you can take care of it immediately instead of just ignoring it.( a cgm wont let you ignore it). After about a year. my a1cs were almost perfect and I stopped having lows. I also felt better to not have to depend on anyone to monitor me. Most of the stress is gone now. Once he gets to the point where he believes that you are on top of it and that you have this electronic back up. then he will be able to let go of it.
Oh my. I was also 10 when diagnosed, but it was 1962, so "neglect" was always there as the tools were reaaaaalllllyyyy bad. I have been married for 37 years and have a wonderful son and two grandbabies. It can be done!!!
My husband and I have been through excruiating retinopathy, together. T1 childbirth in 1977 (I was one of the first aminiocentitsis tests ever...) Lots of amazingly high hills and devastating valleys.
Cool thing is I know he loves me with all his heart. It is everything. If you feel distrust, ask him to talk...
Before we were married, I told him that if he ever treated as if diabetes was an issue--you can't drive, have a baby, be alone...,I would leave. He is a wonder, but sometimes I think my drawing lines was important for him to understand that I needed to be a normal woman. I have traveled for work for almost 20 years and he only asks me to call in the morning to let him know I am ok. I know he worries, but independence is critical to me. My wonderful husband is amazing and incredible, as he pays attention.
Talk to a good doc about the children thing. I did really well with AWFUL technonlogy, had a good doc by chance (military,) a beautiful wonderful son. Kids can happen and you let him know that, if you want.
Do not wallow in the D thing or let him do it. Please. I have seen it first hand (my mom, with my dad)and it can be unstoppable. The spouse can become overwhelmed with a need to protect which is never good for you or him.
Step up. Be strong. Talk to him and listen to his side..remain strong.
Getting to 8 from 10-11 is a great step in the right direction! From a guy perspective, it appears, at least from your account of the proceedings that he knew what he was getting into and I think that he should be more sympathetic. I'm sure that he might cast it a bit differently.
I would think the best way to cope would be to keep working to improve things. Diabetes generates more numbers than a lot of diseases so, if you are working on it, you would have numbers to substantiate your effort. If you haven't met your goal yet, it's something to keep shooting (ha ha, syringe joke...) for!
I may have sloughed off some old girlfriends who were unsure of my long-term investment potential but that may have been more because of partying, etc. all the time as much as diabetes but I'm sure diabetes didn't help my own marketability.
I have been diabetic for 37 years and married for 35 years. I did not take care of my self and I have suffered some complications but relatively few. The first thing I have to say is that not every diabetic who does not take care of themselves has serious complications. Yes some do and it is also true that some diabetics who take very good care of themselves have complications. Not every person follows the same pattern. yes we do know that tight control is better than lose control for complications but not all lose control results in bad outcomes.
I think spouses often think that diabetes is like a science, when in fact it is more like an art. Just because you put these inputs in, does not means these outcomes will automatically occur. The other point is that thing can get much worse. Correcting now will save a great deal of further damage and tot hat end you are on the correct path to working things out.
I believe I would remind husband that these complications are often part of having diabetes, it sort of goes along with the territory. Now I do not think you can blame him for being angry. I imagine you are angry with the situation. So you can understand what he is feeling. Just remind hi that you are in this together and blaming each other is counterproductive and dangerous.
Finally please understand that diabetic couples have faced the issue of having children. I myself am an only child not because my mom only wanted one, but because diabetes stopped her from having more. She was heart broken and often thought about adoption even as her health declined. I saw the pain and strain in my parents relationship as a result of having limited numbers of children. I can only saw whet my mom and dad finally decided. They determined it was better to be together and have one child then be apart and have one. My parents were great role models for me and when i was married I almost did not have children. I have two sons but we had them early and that early decision meant we had to press to get them grown before I was unable to get help raise them. So even though I am relatively healthy diabetes impacted our child rearing strategy. We were poorer, less mature and not as ready as we might have wished to today because I was diabetic.
So my point is that diabetes always impacts the issue of having children I do not know a type 1 couple who do not have these discussions, resentments and compromises. Remind Husband it goes along with the territory.
It must be hard for the spouse that does not have diabetes watch the person they love have to live with the disease day in, day out. I know if the roles were reversed with my husband and I and he was the diabetic, I’d probably want to run to the nearest exit. It’s a very intense and all consuming condition to live with. It’s not going to get better and it’s never going to go away.
So with that said here’s what I think. To get down from a 10 to an 8 a1c is a start but you are going to have to go much lower than that. Get yourself down to the low 6’s, or even lower if you can, and a couple of things might happen. You may be able to put a halt to the progression of your neuropathy and your retinopathy. If you can maintain that level of control for a while you might be able to seriously consider a pregnancy. You are still young and anything can happen as far as that stuff goes.
Mostly by bringing your a1c down you will be showing your husband that you are committed to the relationship and that you want to be around and in good shape for him, for yourself, and for any future child that you may try to have. You can’t expect him to stay committed to the relationship when you are slowly but surely putting yourself in the grave.
I know it’s hard to maintain good control. Believe me, I’ve been where you are with a1c’s of 8, 9, 10. I got to a point where I just couldn’t tolerate the high numbers any more so I had to quit that lifestyle. I have some eye damage and neuropathy just like you but I’m doing my best to stop their progress. The only difference is that I got diabetes when I was in my 20’s so when I was having my kids, I had only been diabetic for 5 to 8 years with no complications as yet. I am now in my 50’s and my kids are 20 plus.
Make that commitment to your marriage, and yourself, and get your blood sugars down to where they really belong. Your husband loves you but he can’t be expected to stick around and watch you kill yourself or rob him of his chance to have his own kids.
It’s tough love, I know, but you can do it. You have the power.
Thanks for the advice. I have been on the Animas Ping for 3 1/2 years and using tHe DexcOM. I need to be more open I guess with my numbers and how I am feeling, He has researched a lot about diabetes. I guess I need to understand his point of view. Thanks again!
I am kind of in the same boat as you. I am 27, but I've only had diabetes for 6.5 years. Recently, I've been very overwhelmed with this disease and have not been taking care of myself like I should. I'm going through major diabetes burnout and a case of diabulimia.
My enitre family is pleading with me to get better and take care of myself, including my fiance. We're getting married in 45 days and I feel like I'm cheating on his trust when I don't watch my sugars or watch what I eat. I'm afraid that if I keep it up, down the road he'll react the same way as your husband. It is super hard for me right now to be strong and take care of myself, but I know that if I don't, I might lose what's closest to me.
I feel like he doesn't deserve to deal with me and my situation, but he is willing to make a lifetime committment to me, and he wants that life to be long and healthy and he needs me, his best friend, with him.
I guess I don't have any real good advice for you in this situation, but I know for me, I look at no control as cheating on our relationship, and that helps me be faithful to good numbers. Hopefully once you fully committ to being healthy, he will gain his trust back. I also think it's healthy to talk to each other about how you each feel about the situations you find yourselves in, and maybe then you will each realize the other's perspective and reasoning for your respective reactions.
I hope this makes sense and helps you even a little!
Poating this discussuion has helped me in a lot of ways. I have gotten important feedback from both perspectives. I have recently had some time off work to really think about the path that I want and need to follow. I am glad to know that I am not alone iin the issues that I am facing right now but I still need to lower my a1c significantly.
I must say I disagree with some of the replies to your post. I dont think anybody who has to live with this challenging disease should feel they "owe" it to their loved ones to take good care of themselves – and if they fail they sort of deserve to lose them. However hard it can be on our partners, we still carry the biggest load ourselves, which is why if we owe anything to anybody, it is to ourselves. I can understand how your husband might be overwhelmed and frustrated at times, but in the end I am certain the only thing that will help both him and you is his encouragement and support, not resentment. Especially since you seem to be very willing to get better control and have already (partially) achieved that goal. You should not have to feel guilty about things you maybe didnt do right in the past (which cant be changed now anyway) on top of dealing with the challenges you have to face in the present. That sort of guilt in my experience only weighs us down and prevents us from having the strength to do better now. If trust is an issue between him and you, than that needs to be addressed in an open conversation where both of you can talk about your expectations (and limits).
You havent chosen this illness, and yet you are forced to deal with it every single day. And you are doing exactly that and it sounds you are now really trying to do the best you can. That alone deserves praise, support and understanding.
I have only been diagnosed about 8 months ago and I take my hat off to all those brave people I learn and read about on this forum who have had to deal with this for many years, many of them since they were kids – just like you.
This forum is a great place to get support and ideas to help you improve your control.
Try to take it one step, one day, one challenge at a time. Good luck!
I'll leave the resentment alone, for now; though I consider it important.
It's more important to get that A1C under 6%. We're all different, but here's the steps I followed.
1. straightened out my basals. I used 16 changes with my pump, and I now inject a base Lantus dose plus dawn and dinner basals with rapid insulin. Learning our natural circadian curves is fundamental to good control. Only then can we whittle down other variances. Remember: basals are supposed to keep your BGs flat without food.
2. Titrate meals. You should now know your non-eating sugars are near perfect, or at least know the typical trends. Now eat the same typical meal every day and adjust your dosage and timing until you get a good curve.
3. I now rarely eat carby foods. Most days I eat less than 50g of carbs. Most type 1's will say as long as your BGs are fine, you are fine. When they can explain marathoners with cardiac disease, I'll believe them. I believe it's sugar that kils, not fats, and a growing number of people around the world are believeing this too.
Warning: BGs are usually trickier to manage on a LCHF eating plan. Read Dr. Bernstein's Diabetes Solution if you choose this route.
Now to John:
I've been 911'd nine times, dx'd with proliferative retinopathy in 1994, 4,000+ lazser zaps, vitrectomy in 2006, steadily gained weight, and ran A1C's no lower than 7. I now run A1C's between 5.6 and 6.4, have lost some weight but maintain, and they see zero retinopathy or atherosclerosis in my eyes. None in four years! Hypos are very rare for me now because I know what's going on. I understand my body like never before.
And my wife is much happier and much less stressed.
Power Pumper--I would like to find out more about your experiences with PDR. You say you have come out the other side of it with zero trace of it. I'm in the middle of it right now and could REALLY use some advice and encouragement. Is there anyway we could speak directly and not through the thread on relationships. Thanks, Cinderfella
I second the statement about not feeling guilty about past mistakes. I was not vigilant in my teens, but come on, I was a teenager! I refuse to feel guilty. Maybe sad that I wasn’t more careful, but I’m sure as heck not going to carry that burden around like a millstone around my neck forever. I would hope that a loved one would get that, and not add to what I already have to deal with 24/7. One would think he entered into this relationship with his eyes wide open, in which case he can’t now lay the blame at your door. That’s my two cents, anyway.
First off, can I ask why children are now out of the question?
I put myself through something similar from the ages of 18-21, I had A1c between 10 and 14 all that time. I was diagnosed with retinopathy and got scared....as I began my laser treatments I began using a pump and dropped my A1c to 6.5. That quick drop made the retinopathy worse for a while, and I had a vitrectomy done. The eye that I had the vitrectomy on is now totally stable, the other has occasional issues, but nothing severe - because I've now kept my A1c under 6 for over 2 years.
I am now married and my husband and I want kids some day. My endocrinologist has never ever indicated I can't have kids. That's why I'm wondering why it's off the table for you - because your situation seems VERY similar to mine!
As for dealing with his resentment, I'm sorry I don't have any advice - he needs to come to understand that you were overwhelmed (this is an overwhelming disease!) but that you are trying to make things better now because you realized you needed to take better care of yourself. What you went through was not abnormal at all for a young adult - as evidenced by the fact that I had the exact same experience.
At the end of the day, those who choose love us, to be a part of our lives... not by blood but through their love of/for us.... they get a seat at this "proverbial table" and have a very simple choice, stay or go, period. Every second of every day... stay or go.
Let's ask a different question.... spooky lows, or highs that slip through TODAY, right now??? Will YOU fight them or quit???
What can any of us do about the GHOSTS of our DIABETES PAST... I can do nothing about my past... will dwelling there help you? Will you be a better woman chained to that burden? You are fighting now... they can ask no more!
Which high, which low episode specifically GUARANTEED-caused where you are at, right now?!?!?! Ever considered the possibility, YOU MADE NO MISTAKES, and yet got complications anyway???
Thanks for all the pertinent info. I do own Dr Bernstein's book but have not been able to read it due to still being in the process of healing from the viitrectomies. I plan on reading that book to get some additional great advice. i am in the process of finding a new supportive endo to helpcoach me me lower mY a1crealizI and to help to get to a stable place. I realize that getting my numbers under control is all on me but I believe that a good doctor is necessary to coach me along. I will use your advice as well. I appreciate your response.
Boji, You are completely right that I should not weigh myself down with past neglect. I need to move on with the past and accept that it happened and that I cannof chage anything that I did back then. BUT I can change what I am doing currently and try to "slow" my complications. Thanks for the support!
