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The Diabetic Partner Follies, Act 19: Helping Someone Who Won't Help Themselves?

Hello Partners and Loved Ones of Us PWDs (People with Diabetes),

Welcome back to the Diabetic Partner Follies, a series of guest posts about the challenges of living beside someone affected by diabetes.  This edition came to me in the form of a long, heartfelt email from a woman in one of the most difficult positions, I imagine -- stuck between a rock and a hard place.  Please read:

Hi there. I am pretty new to all this, but I just found this site and think that I may find the help I need if I tell you about my story.

First off, my long-time boyfriend (BF) was diagnosed with type 2 diabetes about 4 weeks ago. Since then I have done all kinds of research and probably know the disease as well as a doctor. My problem lies in that the only info that my BF knows is what myself and his doctor has told him, and I'm not too sure I trust the doctor as his readings are barely on the level of actually having the disease and before the Dr. prescribed diet and exercise, he prescribed pills (which gave my friend constipation and when the more stressed he gets the more backed up he gets, which is why he went to this Dr. the first time around a couple years ago and never solved his problem.)

Oh, and the Dr. tried to get him to go to a dietitian and my BF said no thank you. He didn't realize the insurance would most likely pay for it, but for the most part I think that he realized I'd be here to hand a plate of food paid for/prepared to his needs and he'd have to do no work on his own. (He really is lazy which is part of the issue to begin with. Easier to pick up a phone and write a check than go to the store, analyze it, buy it, prepare it, etc...)

The most daily exercise he ever got was going up the stairs to his department at work once they moved about 5 years ago. Until then, he rode his bike to work. Once they moved the only exercise is the stairs. He is a graphic artist and a computer geek (by the way he's 45) so he sits at a computer at work and at home (and I've adopted those ways as I do payables and receivables and reception work and become a computer geek because of him).  Before I moved here I was a dancer and got great exercise.

Now, he wants to buy a treadmill and is upset that I said that it wasn't a great idea. Yeah, the other exercise equipment is finally in the shed after years of me cleaning it 'cause it sits and he piles stuff on it, and now he wants something that doesn't get used by anything other than the duster. If we're going to walk, why not in a place where you can see sky, and actually feel like your doing something? I truly believe if he does use it, it'll be a half-ass effort so he can watch a movie, TV, or something where he will only give it minimal effort.

I feel so stressed that I'm doing all his work and thinking and he's just following along. As his mom pointed out, to make me feel bad; I should do this for him because it could be life or death for him. How bout he do something for himself because it may him having a heart attack, stroke, amputation, etc.?  But because his Dr. says he's doing great (thanks to me more than him), he's OK doing only as much as thinks he has to do. Then expects sympathy because he has this horrible disease.

I have done so much research, I do the grocery shopping and read the labels now, I have even lost 10 lbs myself because I think that if he needs to lose weight and exercise for his health, I might as well look hot in a bathing suit again while trying to help him (he's lost about 4 lbs). I have even been meeting up with a new friend at work to go walk at my level (very fast) during lunch so that I can get some benefit. Honestly, my back hurts when I go his level because my strides aren't big enough and my body knows it. He says it's as much as he can do (he doesn't have any trouble keeping up conversation which is indication of how well you are working to your optimal heart rate according to my research) -- and then he gets upset that I want to go so fast, yet he doesn't want to go on his own. So in order for me to get the health benefit of walking for my level I have to go 2 times a day so that I can make sure he gets his exercise in too. I call it my bonus walk. Real one at lunch, stroll to lose a few extra calories in the evening.

I am even considering going to a psychologist because his disease has consumed me so much that I spend so much time doing diabetes research, so much health, diet and exercise research for both of us, that it is consuming all of my time. He has spent probably about an hour total to understand and learn about what he has, and I have spent almost the last month to help him and me do what we can to be healthy. I am about ready to tell him to find a roommate that can better accommodate his needs because I can only do so much and he thinks I am bitching at him, not helping him.

Is it wrong to be so obsessed about someone else's problem when they don't seem to care as much?  Is it natural for a partner to make themselves sick worrying over the other when someone is first diagnosed and that partner is stressed but doesn't seem to think it's such a big deal?  Does it say really bad things about me that I have to feel like I am handling all our health stresses on my own?  I'd feel damn lucky to prick my finger 2 times a day and expect everyone else to help me make it read right.

My big question is, should I give it some time and let him realize how serious this could be before I end up with an eating disorder because he just doesn't want to spend the time helping me and I'm getting so obsessed with this?  Or should I see someone now because I don't think he'll even think twice about it and I need my own sanity?

Just today, he thought he was doing really good by going to Jack in the Box and getting one of their fruit smoothies. When I opened my mouth and said it was probably full of sugar and carbs he said never mind and wouldn't continue on with what he was telling me because I opened my mouth with an opinion that was other than what he wanted to hear. He didn't even want to hear that something that sounded so healthy (based on a commercial, not research) might not be that way.

Do you have any suggestions for me?  I really need help on getting him to figure out what he needs and letting me know those needs, instead of him relying on me to determine it for him.  I really want to help, but I don't want to have to be his doctor and mother too. I want to be his girlfriend, not his 1950's wife and mother.  I would very much appreciate it if you could help me save my sanity and his life.

Thank You,
-- T.K.

Wow, TK, you must really care about this person to stand beside him while he's being so obstinate.  The tough part is, motivation really does have to come from within the patient themselves.  Any suggestions, Dear Readers?

The Diabetic Partner Follies, Act 18: How Do You Stay Calm?

Time for another edition of the Diabetic Partner Follies, where the significant others of the PWDs (people with diabetes) are invited to share their experiences -- for community building and a bit of strategizing, perhaps.   

I say "strategizing" because today's entry comes from a partner who's very concerned.  She'd like to hear how others manage.  Take a read and please feel free to add your 2 cents in the comments section below this post.

[Keep in mind also that original submissions to the Follies are always welcome.  Just email me your stuff HERE.]

Hi Amy,

I just came across your blog today and I LOVE it! I've been the partner of a "brittle" (fragile?) Type I diabetic for about three months now and have learned an awful lot in a very short time. We've learned to manage things together pretty well, and there really haven't been any serious emergencies that I couldn't handle (knock on wood), though she does sometimes drop very low very quickly.

I've become very attuned to her blood sugar, to the point where I can actually anticipate lows way before she does (in part because she sometimes experiences hypoglycemic unawareness, but also just because we spend so much time together). 

However, the problem is that we don't live together and, being only 3 months into a relationship, are making an effort to still spend the occasional night apart. This causes me an unbelievable amount of worry. Logically, I know it's probably okay. She wakes up automatically when she's low at night and manages things herself, and she lived alone for a couple years before I showed up and did just fine.

However, this does little to reassure me when I'm lying in bed alone at night in my apartment, scared to death that she might not be OK, and trying my best to resist the urge pick up my phone and check on her... Some weeks are worse, blood-sugar wise than others, and when she's had a lot of lows I have a really hard time not insisting that I stay over. 

I wondered if you or anyone might have some ideas as to how I might learn to calm my anxieties, either by suggesting work that I can do to relax, and/or strategies for her in emergencies.  She keeps juice by her bed and in the bathroom, and as far as I know always sleeps next to her phone.  Even as I write this, I think, "then why are you so worried?!" but I am, and I'm hoping other partners can sympathize...

Thanks in advance.

- A.C.

Dear AC, I'm betting lots of other can sympathize indeed.  Guys??

The Diabetic Partner Follies, Act 17 -- Knowing is Half the Battle

Hello again here at the Diabetic Partner Follies, where people who live with and love the PWDs (people with diabetes) are invited to share their stories and vent, if needed.   

Today, a woman who prefers to remain anonymous explains how she and her boyfriend are learning to cope with this disease together -- with the emphasis on learning.

Remember, if you'd like to submit something to the Follies (post, link, video, you name it), email me your submission HERE.  Onward:

Dear Amy:

My boyfriend is Type 1.  Before I met him almost 4 years ago, I knew next to nothing about diabetes. He has always insisted that he can feel when his blood glucose is high or low, and that he doesn't need to test that often. He limits his sugar intake and takes insulin twice a day, so I assumed he had it under control.

Our relationship is a very close one, but once in a while he will have these mood swings out of nowhere. He gets depressed, just wants to be left alone, feels like everything and everyone is against him. During these mood swings, he often tells me he has a feeling that I don't love him anymore or that I'm seeing someone behind his back. He feels his life is a mess and that everything is going wrong.

Then, just as suddenly as it came on, the depression will lift and everything is fine again. I never understood what was happening. I knew he loved me, but I didn't understand how he could go from the perfect boyfriend to someone who couldn't even stand to be in the same room as me (or anyone else for that matter), with no warning and seemingly for no reason.

This past spring, he began suffering from diabetic neuropathy. The pain got so bad that he had to quit his job. He could barely get out of bed most days. With no insurance, he couldn't afford to go to the doctor and get any kind of medication for his pain. I started doing a lot of research online about his disease. I found out that the longer someone has diabetes, the less able they are to feel when their glucose is high or low. I found out that tight control of blood glucose is a key factor in preventing or easing the pain of neuropathy. I got him a new glucose monitor and, after quite a bit of nagging on my part, he has begun using it. I read some research about supplements which also help with neuropathy.  He has been taking Benfotiamine, alpha-lipoic acid, and acetl L-carnitine. He even agreed to try a vegan diet. His leg pain is almost gone and he is keeping his glucose levels under much better control.

Throughout these past few months, as I was learning about his disease and keeping track of his glucose highs and lows, I noticed that his mood swings always came when his blood sugar was low.  Then, when I found your website, I literally cried I was so relieved. I had been struggling alone for so long, trying to figure out why my wonderful boyfriend was occasionally and inexplicably a jerk. After seeing your website, I realized that there are other people going through the same struggles.

The last time he had a low, and he said that he didn't feel like I loved him and that his whole life was a mess, I asked him to check his blood sugar. I told him that I suspected that when  he had these sudden feelings of depression, it was due to his glucose level. I asked him to allow me to be more involved in managing his diabetes, and I suggested that whenever he has these feelings he should check his blood sugar.

It was like a huge weight was lifted off of both of us. Now that we knew WHY he had these "episodes," we could deal with them together.

Our relationship has become even closer, as we address each new challenge together. Thank you so much for providing a forum for the partners of people struggling with this disease to share their stories. I can't tell you how much it has helped me to know that I am not alone.

Sincerely,

-- A.G. (anonymous girlfriend)

Thank you for sharing, A.G., as you stated to hopefully "make someone else feel less alone."

The Diabetic Partner Follies, Act 16 -- WANTED: Strength and Acceptance

A heartfelt welcome once again to the Diabetic Partner Follies, a sharing place for partners of people with diabetes (PWDs).  This week, we hear from Cheryl in Washington state, who's had a long and happy marriage with her Type 1 husband.  But the disease has certainly been frustrating, calling upon both partners to muster up almost more strength and acceptance than they thought possible.  As I read this, I knew just what Cheryl meant.  I guess you probably will, too.

My husband and I just celebrated 10 happy years together. Seven years ago at age 33, this tall, thin, very healthy (never got sick, actually), plane piloting, water skiing, drag racing wonderful adventuresome guy came down with a very fragile case of Type 1. Our kids had fought off a very nasty case of stomach flu a month earlier when my husband started feeling thirsty and weak and had blurry vision. We took him to the doctor to discover his blood sugar was 495. A few days in the hospital and the doctors couldn'€™t agree whether it was type 1 or type 2 -- pills don't control it, so he's on insulin and we together try and learn all we can so he can deal with the disbelief, anger and frustration at his having his whole life turned upside down. They thought perhaps that his immune system was triggered by that flu and destroyed his pancreas cells.

At the same time, I was launching my home-based business after a few years working in failed dot-coms. Almost right away, my husband started having horrible symptoms that none of our then doctors could (or would) help us understand. He was nauseated to the point of being bed-ridden for an entire year. NO answers. He would sometimes turn completely cold and have to take a super-hot bath. He would have scary heart palpitations. A few years ago, for a period of at least a year, he would wake up in the middle of the night (normal blood sugar) and literally shake as if it were 30 below. One doctor we went to listened to all of these symptoms and I kid you not, said "What do you want me to tell you?" Needless to say, we're still very angry and frustrated with the medical system. His last endo wasn't much help, either. He once said, "I only do blood sugars..."  Argh! Once early on, my husband had a bad low BG attack while driving. It scared him so badly that it was many months before he felt confident to drive anywhere alone. Now, we have the joy of hoping he isn't pulled over and tasered, should he have a low BG attack.

In recent years, he's been better able to keep his sugars under control but it's still a constant battle. Winter months were worse than summer, so I encouraged him to start going to a tanning salon and that has actually helped keep his spirits up. As many folks have mentioned, not many friends and family understand the restrictions this disease puts on you.  Spontaneity is a thing of the past -- do we have enough strips, do we have enough insulin, get the icepack for the insulin, where are the needles, do you need a new lancet? No, I can't eat yet -- dinner's at 5?  "Do you want to see the dessert menu?" LOL

We keep a can of sugary Sprite in the car just in case, and he takes a bag of 2-bite brownies everywhere as he knows precisely how much one will raise his sugar.

My husband doesn't "work," per se -- although a fantastic graphic/flash designer and 3D modeler, he manages the kids and most of the housework and cooking while I slog away at my computer for clients 12 hours a day.  That's plenty of work in my book, but family and friends see it differently. I often get "the look" or lectures from family -- but they have no idea what it's like to live with, love and support a Type 1 fragile diabetic -- who has to live each day knowing he may not have as long as everyone else, who has a monkey on his back 24 hours of every day that's trying to kill him; who can't live the life of adventure and daring he once did that was such a huge part of his personality.  Not to offend anyone, but if he had cancer or some more visible condition, I think (other people) would be more understanding.

And I'm by no means perfect. I get downright angry and depressed sometimes. It takes a lot of strength and acceptance when sometimes you just wish you could quit and not bear all of the responsibilities -- but I love him, he's my knight in shining armor, still. He fights harder than he lets on, he pushes himself for me and the kids and I couldn't ask for a sweeter, more charming and loving man.

(Thanks for letting me share, Amy.  I really am so happy I found your wonderful blog and could share everyone else's experiences.  It has really helped me get through some rough times and has answered my plea -- I had been looking for this place!)

Regards,

-- Cheryl A in Washington

Thank YOU, Cheryl.  Once again, these "Follies" have made me see my own knight in shining armor in a whole different light...

The Diabetic Partner Follies, Act 15: Walk a Mile in These Shoes

Welcome back to the Diabetic Partner Follies, where the partners of people with diabetes (PWDs) come to share.  Michael has had a crash course in this disease since his wife was diagnosed, and it ain't been pretty.  Like so many others, he's searching for some kindred spirits:

Amy:

I am SO glad I found your site. It's been a wonderful source of information and humor about PWD's.

I'm the spouse of a 39-year old type 1 PWD. She had gestational diabetes with both of her pregnancies and developed type 1 about 1-2 years after having kids.

When my wife was diagnosed, I knew next to nothing about this terrible disease and its effects. Five years later, she's been hospitalized once for DKA, been through a handful of doctors and is developing foot problems.

I now know diabetes as an all-consuming, spontaneity-sucking, 24-hour, 7-day-a-week bummer.  It's hard to fathom how little support there is out there for PWD's.  A lot of my wife's doctors don't seem to get it. A lot of family don't seem to get it.  Even some friends don't get it.  I probably don't fully get it either.

Sometimes I wish there was some way for people to 'walk a mile' in the shoes of a PWD -- like putting on a prosthetic tummy or walking around blindfolded.

Maybe we could come up with a device that you could hook up to people that would alternatively make them feel tired, weak, hungry, combative, depressed, dizzy -- and the user would have to adjust the device to try and feel better.  Maybe that's too harsh...

Anyway, thanks for providing a fun forum for information-sharing. I print out a lot of your posts and share them with my wife.

Best, Michael

Thanks, Michael.  Glad to know that our community can be of help.

The Diabetic Partner Follies, Act 14: Caring without Mothering Him

Today, another installment of the Diabetic Partner Follies -- where partners of PWDs have their chance to speak out -- brings us yet another new perspective on life beside the people who've got the 'betes.  Janet writes that she's delighted to have discovered the Follies, and after 20 years with her Type 1 husband, will have a lot to add.  She starts off with much emotion, and an exploration of the inherent female conflict of wanting to be nurturing, without smothering the one you love:

Reading through the entries in (the Follies), I can relate to everything!  There are days when I want to wrap T. up and protect him from the horrible effects of the disease -- and there have been nights when I'm so angry-hurt-tired-frustrated-scared that I just wish I could curl up and go to sleep and ignore it all! But of course I can't!

So, what do I want to say tonight?  First, thank you.  I am bookmarking this site and will return -- especially when frustration and fear peak.  Secondly, I would like to tell all of the other partners, that they are not alone; there are lots of us out here and we experience the same stuff ... so at least now here is a place to share. We should really use this wonderful resource -- it's a gift. 

Also, I mean no disrespect to the male partners of diabetics, but my experience has shown me that female partners really do react differently than men.  We feel conflicted because we want to take care of him but we don't want to be his mom!  For some reason, the men I know simply don't have this same problem.  So, to all of you women out there, don't despair, share your stories. I for one am going to try to log on often (now that I've found you) and see what I can do to contribute my help and support to others.

And furthermore, Janet shares the personal "Folly" experience that sticks in her mind the most:

My husband and I were together only a few months at the time and I had never seen him have a low before.  My (male) cousin -- who is really like one of my best friends -- was over for dinner.  We were sitting at the table, having coffee, when suddenly my husband gets up and goes upstairs, without a word!

Well, cousin and I looked at each other, shrugged and kept talking.  Next thing we know, my husband comes walking down the stairs, totally naked and talking total nonsense!  Cousin and I were awestruck -- and it wasn't the amazing physique either!

Not knowing what to do or what was going on, cousin left very quickly and I tried to figure out how and when my new mate had taken a dive off the deep end of the swimming pool.  Once  I determined it was the sugar and convinced him to drink something sweet, some semblance of normalcy returned.

It took all of us quite awhile to overcome this one, but it's been well over 20 years and now we laugh about it.  One really doesn't know what is going to happen when living with a diabetic!

Glad to "meet" you.

— Janet in Washington, DC

The Diabetic Partner Follies, Act 13: What Kind of Crisis Will It Take?!

Hello All, and Welcome Back to the Diabetic Partner Follies, our sharing forum for partners of PWDs.  Sometimes both partners have diabetes, and things get particularly hairy -- especially when one partner is guilty of D-neglect.  You think that's only bad news for the affected individual?  Think again:

Can I fire my diabetic husband for losing his spiffy new blood glucose meter?

This is the man who said to me, "I'd test more often if I had the meter that you have, that keeps track of all those numbers."

Fine. I bought him the meter.  More testing is good for a person with type 2 diabetes, right?  At least I didn't give it to him as a birthday or valentine's day gift. 

Personally, I have two meters.  One lives at home in my bathroom.  The second lives in my office desk drawer.  (I should probably get a third to live in my car.)

And it's not as if I ask him every day how his numbers are.  I ask once in a while. His HbA1c was most recently 8.8, and his doctor commented that this reading was down from earlier ones.

When I asked how his numbers were about a month ago, he sheepishly admitted that he couldn't find his meter.  I asked a week or so ago, and he still had not located it.

What kind of health crisis will it take to get his attention?  I want to grab him by both ears and shake him.  I am so angry at him.  I am so afraid of what is happening within his body right now. I have enough to do with managing my own life, and my own diabetes.  I cannot manage his.

But how cruel of him to inflict this worry and anger on me by his inaction and carelessness.  Can I forgive?  Can I continue?  Can I?

— Anonymous on the West Coast, USA

(Living with a partner who's living with diabetes?  Got something to share?  Share it with the Follies by emailing me here.)

The Diabetic Partner Follies, Act 12: Frazzled in the UK

Welcome, one and all, to the dozenth edition of the Diabetic Partner Follies.  Here we invite the loved ones and partners of people with diabetes (PWDs) everywhere to share their experiences.  Almost all our recent stories seem to be about hypos (otherwise known as blood sugar lows).  We welcome these and any other types of venting you all care to share.  Today, a note from a wife in the UK who's at her wit's end.  Hopefully just knowing we are out here "relating" can help...

Hi Amy,

I just happened to stumble across The Diabetic Partner Follies as I was searching for information about type 1 diabetes.  I am so very glad I did.  Such hearfelt, touching stories and wonderful humour.  Thought I was going to fall off my chair laughing at the account of the armed police turned up to the poor chap who was trying to get his wife out of a hypo.

My partner has type 1 diabetes and we had become complacent.  I did not have a clue about diabetes when we first met and wish he had informed me more about how to help if he ever became hypoglaecemic.

I woke up one night and he was drenched in sweat.  I don't know what prompted me but I asked him to check his blood sugar.  His sugar was too low at that point for him to respond properly and he just looked at me in a confused, dazed sort of way.  I thought he might be drunk.

We had had a few drams to celebrate something that evening but not enough to reduce him to that seemingly paralytic state.  I dialled 999 conscious that something was really amiss here and explained that he was diabetic.  Confirmed that we was not in a coma. I was told to give him chocolate (editor's note: no! chocolate was the first bad advice) or something sweet to eat which I duly did but obviously not enough to get his blood sugar raised again.

I was given the number of the National Health Helpline who were worse than useless.  I explained that he was slipping into inconsciousness and that I was afraid to give him more chocolate in case it would harm him.  I really did not know at that point that more chocolate could have saved him (stupid me).  They really ought to have advised me better.

He became aggressive which scared the living daylights out of me because he is a nice guy really.
This was one of the most terrifying nights of my life.  Dialled 999 again and they said an ambulance was on its way.  By this time my partner was behaving like a crazed animal, banging his head on a table and falling out of bed.  A snowstorm had brewed outside and much as I love snow, I really hated it that night.  Several more panic calls to emergency services.  Their sattelite navigation was wrong and I lived in a cul-de-sac where the entrance was very easily missed.

Thankfully he recovered and despite several more scares in the following weeks I was more informed and aware of what do do should another hypo occur.

Two years passed and nothing major happened until last week.  Strange grunting woke me up.  Cold sweat.  I knew what was happening but he was too far gone to drink the fruit juice I tried to entice him with.  He was coughing and spluttering and seemed he was going to choke.  I found a 'crunchie' chocolate bar.  Probably the worst thing I could have given him but all I could find in my panicked state.

I was frantically searching the fridge for an orange plastic box containing an injection to bring him round and could not find it.  Still kicking myself for my complacency in allowing the darned thing
to wedge itself behind cheese in the cheesebox :(

Paramedics were wonderful and arrived so quickly though it felt like hours.  Bedroom was a total tip but they were unfazed by it. Just getting over that terror and trying not to paw him every two
hours during the night checking for tell tale signs of persiration when wham!

We were at the hospital this morning.  I was due to have an operation and had seen the anaesthetist, had my painkillers in advance of the op and was just about to get dressed in a hospital gown when something was not right.  It was that glazed look in his eyes.  Perspiration beads on the forehead.

Nurses were fantastic and had a blood sugar monitor there.  Blood sugar already as low as 1.2  (I don't understand the system you all use in the USA) and if you don't understand this one, trust me that it is low.  Very low.

Operation is postponed until after the New Year now.  There is no way I could have gone to surgery and left him after that.

I am furious that he came out of the house without his BG monitor. With no mobile phone and with no medication whatsoever on the assumption that he was only going to be gone for a short time.
What is annoying me is that he still seems largely unrepentant about the stress this causes me.  He did not even want to go and see the doctor at our group practice because he is not the expert on diabetes at the clinic and the doctor who is was not working today.

He reluctanctly dragged along at my insistence and had to admit that the GP knew way more than he would have given a GP credit for before.  It has put my mind at rest somewhat but I am frazzled.  I've only had around 2 hours sleep and still full of adrenaline.  Of course I shall be afraid to sleep soundly tonight incase of another hypo.

He has been quite uptight and angry today.  I don't know if this is a result of the hypo or my nagging?
I have so many questions but have rambled on quite enough now. 

Thanks for listening/reading.

-- Heather B.

The Diabetic Partner Follies, Act 11: (Almost) The Other Woman

Greetings, friends of the Diabetic Partner Follies, the forum for significant others of the PWDs (people with diabetes).  We are getting it through our heads that you folks live with diabetes, too, and that often it ain't no picnic. 

This week's entry really choked me up.  It's the kind of thing I hope is in my partner's heart, although men tend to be less poetic in expressing these things.  It also made me realize that having the Big D around IS like having another being in the relationship mix, after all. See what you all make of it.  (And feel free to email me directly with anything you might like to share.)

I realized after getting married that I had a force to contend with. Not my husband's mother, as is the case for most new brides, but my husband's diabetes. I think of it, occasionally, as the other woman.

 

He knew her long before he knew me. They've been through countless ups and downs together and have an intimate bond I will never be a part of. They have their own language, and while I can hold my own in a conversation about bolusing and complex carbohydrates, I will never speak it as fluently as they.

 

And so I have to remember, when I see the two of them getting in to trouble or mistreating one another, that I was the last one to arrive at the dance. I have joined the party, but there will always be that boundary, no matter how much I learn or how much time passes, that I cannot cross over.

 

I can't make his feet stop hurting when neuropathy rears its very ugly head. I can't make him exercise, no matter how much I may suggest it. I can't fully empathize with what high and low blood sugars feel like. And I can't make her go away.

 

But there's plenty I can do. I can carry a meter and test strips (and Skittles) in my purse. I can make sure his prescriptions stay filled. I can count every carbohydrate I put into our meals. I can sit beside him in the middle of the night when we're waiting for his blood sugar to level out.

 

In the end, I can't control the two of them, but most importantly, I can -- and do -- love him unconditionally.

-- T.P.

 

The Diabetic Partner Follies, Act 10: When Partners Clash Over Doctor's Care

Welcome back again to the Diabetic Partner Follies, where the significant others of the PWDs (people with diabetes) are invited to vent. This week, we feature another double-diabetic household, in which one is none-to-happy with the other's medical providers.  A new kind of sticky wicket.  Hopefully, you all out in the Community can offer some advice here. (And remember, if you'd like to submit a post, email me here.)

So, Amy, you haven't heard from me for a while, here's a question or a rant or whatever you want to call it:

We're both type 2s, about 8 years from diagnosis, and married 3 years.

 

What's a person with diabetes, married to a person with diabetes, to do when one partner is unhappy with other partner's diabetes management, and with the other partner's doctor?

 

I know that there is a standard of care that is recommended for diabetes, and that in each state, any doctor may be reported to the governing authority for failing to meet the standard of care in any particular case, not just diabetes.  My state board says that they may investigate issues of "Quality of care" meaning inappropriate or substandard care. 

 

So, is letting my beloved go for years (3+ years) with an HbA1c of 8.8 or greater substandard care?  Is putting him on a course of oral steroids without adjusting his medication for the known and expected increase in blood sugar levels, is that substandard care?  Is prioritizing treatment of annoying or uncomfortable medical symptoms over his diabetes, which could be developing potentially life-threatening complications, is that substandard care?

 

I sure think so.

 

In my case, my relationship with my physician is a partnership, pre-dating the marriage, with input from both of us.  We make a plan, we work the plan for a while, we run tests and evaluate the results, and repeat, as necessary.   

 

Since my partner does not invite me in to his medical appointments, I have no idea what their relationship is.  Is my partner overruling the doctor?  Has the doctor lost all hope of affecting my partner's behavior?  What is going on?

 

Trust is one of the bases of any good and healthy relationship.  How does living in a double-diabetes household affect this?  I trust my own diabetes self-management plan.  I trust my own diabetes knowlege. I trust my own choices, both good and bad.  But it's harder to trust his.  The blame tends to land squarely on the physician, because it's easier to blame this outside physician than my own beloved.

 

I don't want to be the diabetes police.  I want to trust my beloved.  It's just hard to do when I see this as threatening our long and happy life together.

 

--  L.R.

Portland, OR

The Diabetic Partner Follies, Act 9: Support Group Faux Pas

Greetings, people who care about diabetes and about the people who have it.  This week's edition of The Diabetic Partner Follies is a special treat.  I had queried John Close, British hubby of the smart and extremely successful diabetes industry consultant Kelly Close, about his experiences being virtually saturated with the disease in both their private and professional lives.  What came back was completely unexpected, and made me laugh.  You should have seen my husband in action at the support groups prepping for childbirth! (snorf) 

In any case, I'm sure that once again, many of you can relate.  Got a story of your own to share? Email me here.  Now enjoy.

Hi Amy -

I read your emails from other diabetic partners with a real sense of understanding. I feel that we could meet up and have a chat and we'd get along really well -- but I have to confess I am not very good at these things. In fact, my biggest folly was attending a diabetes support group with my wife, who has been type 1 for 20 years.

The people at the group gave me a warm welcome. They said it was nice to have a partner represented. That was before they kicked me out, though!!!

The fact is, I just wasn't very supportive at the support group -- which is not usually like me. I spend a lot of time supporting my wife, who I think the world of.  But all these type 1's wanted a space in which they could talk about how they had gone on vacation for two weeks in Central America without taking a blood sugar meter, or how they hadn't bothered to test before driving their car down the freeway at 65mph and going low. I squirmed and sat on my hands as each story got more irresponsible than the last. Then I blew up!!

I told them that I know everyone makes mistakes, but it was just wrong to be so foolhardy. They were not only playing dice with their own health, but with the feelings of their loved ones and the safety of complete strangers. Everything went very quiet and for a few frozen seconds, I could hear a cold wind whistling outside the window.

Turns out I hadn't listened very hard to the introduction from the facilitator. Apparently we were there to listen and not be judgemental, that nothing was "wrong" and that my comments "weren't welcome." Whoops! Guess I won't be invited back then!

Well, I lost points for that. But I know why I did it -- it's because I care.

-- John Close

The Diabetic Partner Follies, Act 8: Lowest of the Lows

Welcome Folks, to the continuing Diabetic Partner Follies, our special "revue" of what life is like from the other side of the glucose meter.  Partners and loved ones are encouraged to share their experiences -- good, bad, or otherwise -- with the community.   (To submit your 2 cents, email me here)

This week, I received an email from Kim W, wife of a Type 1 in Ohio "aka the Blood Sugar Police."   She writes: "After reading Anna Q's submission, I thought I would write in and share."  Here's how it is in Kim's world at the moment:

Well it's 2 am in the morning and about an hour ago my husband's hypoglycemic tossing and turning woke me, and of course being me I am still awake mostly because I want to make sure before I go to sleep that our low is corrected and mostly because I am frustrated after this last low. I decided to come online and find someone like me that I could talk to. 

My husband is 33 y/o, has had diabetes for 23 years, and is an insulin pumper.  Since we have been on the insulin pump (just over 4 years) we have had an increase of hypoglycemia.  Reasons for this being that my husband is 1) extremely active -- plays soccer, works out insanely, is a registered nurse and runs around at work for 12 hours a day when he's there, 2) is a big control freak, as he should be, however I wish he would realize he doesn't always have to have a blood glucose between 120 and 150 when it means that he is also taking the risk of also having a blood sugar of 30.  I wish he could be a little less controled for safety.

As time has gone by in our relationship and hypoglycemia has become ever so present lately, I feel so frustrated with him.  Tonight for instance, I woke up to him tossing and turning in our bed, so I did the forehead test (usually hypoglycemia = sweaty forehead) and of course it was wetter than ever.  I nicely asked him to get up and check and of course as it usually goes he made excuses about it being hot...etc., etc. Finally I had to be very firm and aggressive to get him up to go check and of course he was horribly nasty about it. 

Of course I was right (I don't know how I know but I just know, I feel it in my gut) and we had a blood sugar of 30.  I asked him to eat a tube of glucose gel, (because it works the fastest and the best), but he chose to eat a granola bar instead, and the gave me tons of attitude when I made him stay up to recheck. Some people might say something to the tune of "well why can't he manage it himself" but they don't get that with a blood sugar of 30 he can't make appropriate decisions about his own care. I know the low blood sugars affect his thinking and attitude, but sometimes he makes me so angry I just want to wring his neck! Sometimes I want to call 911 when we are having a low, just so I don't have to be the bad guy and because I don't want to be the one treated like crap when I am taking care of him, and sometimes I want to call because I don't want to be the one to deal with it again all by myself. In the end he's always sorry and I know he has no idea what he's like when a low blood sugar occurs, but it's still hard. 

Does anyone else feel this way? 

Thanks,
-- Kim W.