I’ve looked around for a “good” support community and was hoping I could find that here.
My husband is diabetic. I’m looking for people in similiar circumstances to share stories and gain support from people who truly understand what we (the spouses of diabetics) go through.
A bit about my hubby… he’s been diabetic for over 15 yrs, he’s 38 yrs old. He’s been “uncontrolled” for most of that time. He tried diet control (no success), he tried shots (numerous times… no success), and finally he found an endo. who would put him on the pump (this past spring)… and it’s been GREAT! His a1c went from 12 to 7.
BUT… this being said… since he went for so long with his numbers so high… he has NUMEROUS side effects. HORRIBLE peripheral neuropathy… horrible. Retinopathy (he’s been getting shot - 1 a month in each eye) to decrease the swelling (I believe)… dr wants to be proactive with this prior to doing laser b/c he’s so young. And a litany of other things. He’s gained lots of weight (he was a big guy to start) and he’s retaining water b/c of it. They checked his heart and liver and it’s not b/c of that (good news)… but he can’t lose the weight b/c he can’t move around much (b/c he’s in so much pain). He spends most nights moving around the house in pain (couch, chair, bed, floor, etc). He’s also depressed. He feels like getting on the pump may be a “too little, too late” sort of thing… He goes to at least 5 different doctors regularly and he’s tired of it all.
I feel helpless. I am completely, 100% supportive. I don’t know what to do for him to help him anymore than I already do. We have 3 young boys. I need support from people who “get it”.
Gosh Renee, you guys are so young to be going through all this. It so good that you came to Tudiabetes for support. There are so many knowledgeable members on here. I’m not one of the ones in the know but if you ever want to vent just send me a message. I vent all the time.
When I first came on, I had some neuropathy. I joined the Neuropathy Group and I received so much help and support. There is also a group for Retinopathy and I think there is even a group for spouses.
I don’t blame your husband for feeling the way he does. So many of us have felt like that. I can tell you that I have read so many sad stories on here which ended in success. I hope the members can help you guys too.
I so admire you for the way you are supporting your husband. I have a supportive husband too and that makes so much difference. Stay strong!
Joanne
Renee. You’ve come to the right place. I don’t know what to say except to wish you and your husband luck, and I believe with such a dramatic improvement, some complications can reverse themselves. A good doctor can tell you more.
But this reminds me of an article I read yesterday on DiabetesMine, here. Skip to the question from Hailey from Kansas, and look at the bottom of the response. The whole thing doesn’t apply exactly to the situation you’re in, but one statement rings true: You think having diabetes is hard? Just try loving one of us! Put yourself in their shoes for a moment. All the same worries we have, but none of the control. Wow. Now, that’s a tough job.
Scott, That article was insightful and so true. I often tell my husband how on some level it’s just as difficult for me b/c it’s out of my hands. I want to do the right thing for him when at times, I know there is NOTHING I can do and that’s heartbreaking.
Joanne, I am the optimist. He is the self-proclaimed “realist”. I keep saying that things could be turning around b/c the pump has helped his a1c, it’s just a matter of time… but “the realist” thinks “what’s done is done.”
I’ll have to check out the forums further tonight.
Thanks again…
Renee
Welcome to the TuD community! Your husband is a lucky man to have such a supportive spouse; you’ve come to a very supportive community with contributors that have a broad-range of experience and outcomes. One thing that I learned quickly here is that PWD (People With Diabetes) all have different responses to diabetes and what works for one of us may or may not work for another. It’s a complex disease with a interconnected impact on our bodies’ metabolism and endocrine systems.
So with that in mind - one thing that has helped me is working with a cognitive behavioral therapist; depression can be caused by imbalances in the endocrine system and at the same time depression makes it difficult to expend the effort needed to control diabetes. In my case a combination of medicines and CBT (cognitive behavioral therapy) has been a tremendous help. I still have good days and bad days; when I forget my meds it’s generally a rough day until I remember that I haven’t taken them.
My diabetes diagnosis was fairly recent - about 8 months ago and I’m not exhibiting any other symptoms other than a little neuropathy in my feet. So I can’t truly understand the impact those would have on depression, except to complicate it greatly. I know that if I had received my dx during the depths of my depression - 2 years ago - I can’t see myself being able to make the changes I’ve been able to make in diet and exercise… There is still some areas of my behavior that I need to change to help reduce/delay complications and I’m trying. Haven’t succeeded yet, but am trying.
And I can’t credit my improved mental health all on chemicals and CBT, I’m also very fortunate to have a supportive wife.
Wow that’s a lot but it sounds like he has found the right doc and right meds so that’s good. remind him he didn’t get this sick overnight and will take a little while to get things under control but he’s making great progress. stay hopeful and stay strong!
You’ve come to the right place, this is a tremendous resource.
I would echo what jrtpup said, both of you should get involved here. Having a supportive spouse is a tremendous advantage but, in the end the person with diabetes needs to make the changes and make them stick. Read old posts, peruse the groups and discuss threads with each other. It can be done!
The first thing you will find is stories of people who were out of control, who decided to make a change, and were successful. The second thing is ideas to formulate a path forward. Finally I find participation helps with motivation, which is key, because diabetes is a relentless opponent. Whatever plan he comes up with, it must be both effective and be something he can stay with for the long haul.
Renee, As others have said, you have come to the right place. TuD has been a god send for me and my wife. I can not express the debt I feel for the support my wife gives me. I literally owe her my life.
I am very much in the same condition as your husband. I can look back now and realize that I had D about 10 years before DX. I have PN and retinopathy. Had the shots and laser surgery (follow up next week).The pain from PN is unbelievable. There were many times I could not imagine going through the rest of my life with this pain. Like your husband I did very little in the way if physical activity because my body just plain hurt too badly to move.
Then almost exactly a year ago I went to the Dr,(yep, first time since 1992). My complications motivate me to keep my BG as close to normal as I can. At DX my BG was 436 and a1c was 12.3. By Feb my a1c was 5.6, July 5.4. I test about 10 times per day and eat about 100 carbs per day. I use MDI, Lantus and Apidra.
After reading about it here I started taking R-Alphs Lipoic Acid for the PN and retinopathy. I did my own research and checked with my doctors. They all gave a thumbs up (I was already using it anyway, 600mg 2x per day)). It gave me some relief almost immediately.Shortly after DX i could no longer tie my shoes due to my PN. About a month ago I began being able to tie my own shoes and do other things again. Still no where near normal, but much better than a year ago. The stabbing, burning pain is almost non existent and some days I feel almost normal again. I also use an ant inflamitory RX eye drop called Nevanek (spell?). It has helped a lot with my vision.
The real key to all of this is keeping your BG as close to normal as possible.I try never to go over 140. I do sometimes, but I use that as my limit because that is the point where damage begins. For the most part I am able to stay between 95 and 130.
I have wanted to give up many times, but I refuse to give up. I have found this site so very helpful in not only understanding what is happening to me, but giving me hope that I CAN get better. There are so many people here that are and have gone through these same issues and have tons of good advice. Have your husband get on here and read. I know it’s tough to do sometimes, but get a magnifier, hit Ctl/+ to make the type bigger. Just do it. And be patient with yourself.
Sorry if this is a little bit of a ramble, Ive had several interruptions. Keep believing in your husband. Help him believe in himself and know that with lots of work and good control things CAN GET BETTER. I am more than willing to support both of you any way that I can. Just let me know.
I haven’t heard of retaining water as a “side effect” of pumping but nothing suprises me entirely any more. Sometimes, it might be like shifting gears and will take time to get used to? I have heard of people having problems with their eyes from a rapid improvement in A1C so it’s very good that he’s being closely cared for? I am sure he’s tired of it all.
I would suggest reading the book “Think Like a Pancreas” as it is sort of like an “owner’s manual” for diabetes and has pretty clear directions on how to adjust things yourself. I would want to keep an eye on my eyes as I am, in fact, keeping an eye on my eyes, as that’s a huge concern for anyone. I’d suggest that maybe after his BG has been more stable for a while he might start to feel better but I’m not entirely sure on that as I haven’t had quite the same situation to deal with. I think there are lots of people here who can offer much better suggestions than I can and I hope things improve for him.
Threre is nothing you can do about his past… any more than you can about your own, your parents, your aunts or any of your uncles. It is the past.
If the family dog dies, you loose a job, yeah… you are not going to be blissed-out, you will be depressed. His spiritual-emotional exhaustion is very understandable. Pain is the source of a huge piece of the weight he’s carrying… giving birth tended to bring your attention to that event, right? Not so different… Does not matter how it happened, why… its where he is at, and its got his full attention… with good reason obviously.
How can we help you out? Glad to try… ask whatever you’d like to know or simply dare to ask…
Wow… I am overwhelmed! Literally… overwhelmed. I’m going to have to wait to tell hubby about this site until we have time to really talk. It seems sometimes by the time we get time alone or free time… it’s late and his pain is already kicking his butt. This would seriously overwhelm him… though I think in a good way.
I think I really did find the right place in TuD. What a friendly, supportive, honest group of people!!!
THANK YOU!!!
Someone commented about the pump causing the water retention… I didn’t explain correctly. Once his numbers became more regulated (when he got on the pump), he started gaining weight, which in turn caused the water retention (swelling). Hope that makes more sense.
jah.ini… The CBT is something I will definitely have to do some research on. That sounds like something that hubby could definitely benefit from. Thanks for all of your knowledge.
Randy… Thanks for the “ramble”. It was greatly appreciated. Wow, it sounds like your situation is VERY MUCH SIMILAR to my husband’s. Your story is very re-assuring. The thing I’m amazed at is that there are other people out there who really are in similar situations and succeeding.
Stuart… I don’t know what I need… or what you guys can do to help… I think just finding somewhere to vent is HUGE!
Night is approaching. Makes me sad… I know he hates this time so much. The jabbing, stabbing, boiling pain is starting… sigh.
THANK YOU to all who have commented. It means so very much to me!! Renee
The other thing I’ve read that’s supposedly very effective for neuropathy is marijuana, if it’s available where you live? I’ve seen 20/20 videos of growers and it sort of looks like a bizarre scene to deal with but if I were having symptoms like what you described, I would figure out a way to check it out. If you’re in a friendly location, I would look into it?
I’m new here myself, so I don’t have any really great advice, though I can understand your frustration and your desire to do everything that you can to help you husband. Sounds like he’s making a start, and I think it’s really important that he not give up. You’re both very young to be going through all of this, and it can get better. You say your husband is depressed? That can really stand in his way, and if at all possible, maybe he can talk about that with his doctor. He doesn’t need that on top of everything else.
I’ve heard of people who were relieved of some of their neuropathy pain by getting tight control. Being in pain, all by itself, can leave you feeling desperate and depressed. Tackle one thing at a time, and I wish you both good luck and good health.
Hey Renee,
First, as a type 1 diabetic for about 28 years, I know we can be difficult, and feel sorry for ourselves, and be rather pathetic, so I am sorry. I am sorry, because I have been the complainer who has been a trial to others at times. I have been the person people worry about. You are good hearted for being supportive and loving as you are.
That is fabulous dropping from 12 to 7. Amazing what some good diabetes education can do for you.
Some people have found that when they improve their blood sugars drastically like your husband did, eye problems are initially created, but then they go away over a year or two. He needs to keep his A1c below 7. If he can keep it below 6, even better. That means a lot of finger sticks. Keeping the blood sugars under control can improve the retinopathy, as well as the neuropathy. If the neuropathy is that bad, it will probably never go away completely, but it can reverse to some degree. I used to have mild neropathy in my feet, but a couple of years into keeping my A1c below 7 and I don’t have it anymore. (Okay, it was 7.2 once, but I sprained my ankle and since I was in pain and couldn’t exercize, I was a slacker and a big baby).
I think you should consider reading Diabetes Solution by Dr Richard Bernstein. (My library lets you download the ebook for free for 3 weeks, I think, if you don’t want to purchase it without reading some of it, your local library might let you.) Dr B was a mechanical engineer who had horrible control. He reversed his kidney problems, gastroparesis, frozen shoulder, and other diabetes related problems through tight blood sugar control. Then, since nobody would listen to the success of a mechanical engineer, he became a dr so people would listen to what he had to teach. He talks about a lot of the complications diabetics face, and what can and cannot be improved with better control. It is a strict diet, but almost everything can potentially be reversed.
Good luck. You have friends to vent to here. Thanks for loving and supporting a diabetic!
I’m the T1 in our marriage & know that in many ways it’s harder on my husband. He often feels frustrated & helpless because he doesn’t know how it feels for me. His support & love have gotten me through dark days.
Hope he’ll join Tu. If you feel he wouldn’t want you to have told his story, you can delete this discussion. Of course if he joined, no one here would know who he is anyway.
It’s never too late to start being in control, particularly for someone his age. Easy to feel overwhelmed & despondent. Everyone here understands this well. The best fix I’ve found is positive action. Many complications can heal with better BG control.
Wanted to second Baby Tee’s recommendation of Dr. Bernstein’s book. Reading it was the best thing I did. Realize how cliche it sounds, but it did change my life & outlook. It gave me the tools to control the D beast. Also wanted to second the suggestion of R-ALA for neuropathy.
You are very welcome Renee. It is overwhelming, it was for me, but there is hope. It takes hard work, lots of study and support, but the pay off is life. Both of you hang in there. Keep in touch!
Neuropathy can heal, the key is getting better control. I experienced the burning pain but it is gone. Some numbness remains but I can deal with that. I still have hope the numbness will go away. At one point it extended up to my thighs but it is now confined to my feet.
I take R-ALA, evening primrose oil, and benfotiamin ( a fat soluble form of vitamin B1) and they have helped my neuropathy. The R-ALA and benfotiamin have been studied in Europe and both are used for neuropathy there. Getting better control of my blood glucose also undoubtedly helped too. Here's a recent discussion about this. Here's another link that references a study that says it may take 2 - 3 years for your nerves to heal, and explains what is going on that causes the condition.
The numbness in my feet is a constant reminder to stick to my diet exercise etc. I don't want that burning to come back if at all possible.
I'll also second the Dr. B recommendation. If it looks like something you want to try check out the Bernstein Group here on tuD.
Renee