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The Diabetic Partner Follies, Act 4: Full Frontal Sharing

Pull up a chair, folks, for Act 4 of The Diabetic Partner Follies: the unique forum for partners of diabetics to share what it’s like living with us PWDs (people with diabetes).

Let me first take a moment to remind you that submissions are welcome, no matter what you want to say. Snippets are just as good as long posts, mind you. How about the “partner quote of the day”? Got something to add here? Email me.

And now, on with the show. Today, Amy H. shares a heartfelt account of what it’s like not being the one with the diabetes, but taking it on nonetheless:

I didn’t know my E. before her diabetes arrived. She got the news as a kid, age 9.

Several years ago, on our second or third date — when most people are still pretending with one another — E.’s insulin pump was running low (which, at the time, I didn’t know, I didn’t really know anything). We were at my little summer rental on Cape Cod. She looked at me with something that seemed like resignation and blurted “You might as well know about all of this now.” She refilled the pump, changed her infusion site, and gave me the guided tour.

I have a great relationship with E., and an odd one with her diabetes. I hate it for adding burdens and vulnerabilities to her life. And I appreciate it for helping form the character of the person I love. We’ll never know who that 9-year-old would have grown up to be without it, so there’s a part of me that takes it all in as a package deal and says “thanks.”

E. accepts life as it comes. She knows the difference between big problems and little ones. Doesn’t have a fraction of the rational and irrational fears I have. And thinks most of the things people complain and fret about are a stupid waste of energy that could be redirected to, say, playing with the cats. While I know I’ve been a good influence on her life and her health, I believe she’s been an even better one on mine.

We go to most of her Joslin appointments together. I try to put them in my calendar when she does. In the summer, I have a fashion bias toward age-inappropriate cargo shorts so I can carry her supplies for her. It’s a small, sort of dopey thing. But it’s nice to see her without the bag, even the cute orange one. I have an uncanny awareness of her highs and lows, sometimes before she does, mostly because she’s among the most lighthearted, even-tempered souls I know. The aberrations stick out.

I’m not yet a good, consistent partner in healthy eating and daily exercise. There are too many times when I try to explain gym-avoidance and Twix to myself, silently, this way: “I’m not the one with diabetes.” But I am. Because I’m the one with her. I’m also 43 with a family history of heart disease and Type 2 diabetes, and any doctor would tell me that what’s good for her is good for me. That last sentence there? That’s me, working on it.

I’ve been at this for four years, which still seems a little green. I’m not sure what my “best practices” are.

Sometimes, E.’s diabetes is a set of facts and habits that belong to us both. Sometimes, it needs to be all hers, and I’m sitting way, way up in the cheap seats. And sometimes I’m her world’s most important person when I get up and pour the juice or ask the doctor that follow-up question.

If I don’t guess right, she usually tells me.

– A.H.

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Friday, July 28th, 2006 | Permalink | Comments (0)

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The Diabetic Partner Follies, Act 3: Hypo “Murder” in New Zealand

Welcome again to The Diabetic Partner Follies, the weekly revue where partners of people with diabetes share the view from their side of the glucose meter. They’re helping us understand that it can be far from easy living with a PWD (person with diabetes). And hopefully, “The Follies” gives them a place to connect and learn from each other, too.

Remember that submissions are welcome: no entry too short, sarcastic or insignificant! Email me if you’d like to participate.

This week’s entry comes from halfway accross the world,
where Graeme and Gail Ellison live happily together in New Zealand…
except for the occassional night when the police are alerted. Read this:

Hi from way down here in New Zealand. My wife Gail
has had T1 diabetes since 1958, she is now 56 years old. We first met when she was 16 and I was 23, then
both went our seperate ways until 2000, when I decided to “look her up” when I
was in the North Island where she lived… I was living in the South
Island. As a consequence of catching up, we ended up living
together for 10 years before tying the knot at ages 54 and 61 years
OLD!

The most memorable “diabetes-related” event was the
night Gail had a bad hypo which I had difficulty in dealing with. She has lost
all warning signs of hypo’s so can no longer deal with the ones that creep up on
her. I was attempting to get her to drink some liquid glucose but she accused me
(in a raucous voice) of trying to kill her. She screamed herself hoarse in an
attempt to fight me off, but I finally won the battle then went out to the
kitchen to make a sandwich for her.

There I was, at 1am, standing at the
kitchen bench in nothing but a pair of shorts, a carving knife in
hand, as I
sliced cheese for the sandwich. Next thing, there is a knock on the door and
there stood a member of the NZ Police Armed Offenders Squad, dressed in
balaclava and combat uniform, complete with something that resembled an AK47! He
cautioned me to put down the knife and to carefully step out onto the verandah.
“Look around and you’ll see that we have the property surrounded”, he told me.
Sure enough, I counted 7 armed Armed Offender Squad members - ALL pointing their
weapons at me. There was an ambulance parked across the top of the driveway and
police cars parked all over the place.

After alot of fast talking, I finally convinced
them that all was well, but they insisted on interviewing Gail, who was by this
stage almost back to normal but feeling (and looking) terrible. She was wringing
wet, bed clothes strewn all over the place and to her horror, wearing a Nightie
(PJ’s) that should have been thrown away years before. The Senior Sergeant told
us that he had just completed a First Aid course and “could he please
have a shot at testing Gail’s blood glucose level as he’d never come across a
real live diabetic before”!

We were told that a neighbour - no names given -
had contacted the police to report that a murder was
taking place “nextdoor”.

The following day we decided to go to the block of
units nextdoor and thank whoever it was who had alerted the police. We knocked
on all three doors, but nobody would admit to summoning the police. We still
think to this day that they were convinced they were living next door to a pair
of maniacs!

– G.E.

Auckland, New Zealand

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Friday, July 21st, 2006 | Permalink | Comments (2)

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Now THAT’s a good story!!!

Thanks for putting a grin on my grill this morning!
Posted by: Scott K. Johnson | July 21st, 2006 at 7:16 am
Graeme and Amy, that’s hilarious (although it probably didn’t seem so at the time)! Thanks for sharing.
Posted by: AnnaQ | July 21st, 2006 at 10:30 am

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The Diabetic Partner Follies, Act 2: Night Visitor

Welcome to the second edition of the Diabetic Partner Follies, a new series here at DiabetesMine.com in which we (meaning myself and the good man behind me) invite the “significant others” of diabetics everywhere to speak out.

The idea is that partners of PWDs should have a forum to exchange experiences, ideas, frustrations, and even some occassional smiles, we hope.

Today, we hear from Anna Q, author of Life with a Spouse, one of only two known partner blogs. (The other being Wife of a Diabetic, written anonymously, a window into a much darker world where the PWD in question is not taking care of himself and both partners suffer the consequences.)

Anna Q, on the other hand, describes her life this way:
I’m 38 years old, married 13 years to a Type 1 diabetic hunk. I have a very “spirited” toddler son and a very sweet baby daughter. On my quest for answers and education on things Diabetic, I didn’t find any online support for spouses/ partners… so she started her blog, and later jumped right in here at “The Follies,” including creating this lovely Wedding Photo.

Anna writes eloquently about how life with her beloved PWD, Jack, has shaped her own sense of self. Read on.

* Night Visitor *

SCHRRR…BUMP BUMP…CRRR…CRASH…

I startle awake, my most paranoid senses on alert. The bedroom is pitched in moonless black, but I clearly hear intruder noises from the living room. And he (she?) is not being subtle about rampaging my apartment. My heart pounds as I shake my husband awake (thank the stars for 6′1″ husbands who will charge out with male-ego blazing!). But Jack does not respond. Instead, he is slick with sweat, so hot, and starting to shake. He is in the middle of a hypoglycemia.

It is 6 months into our brand-new marriage, in a brand-new apartment, and (stupidly) I haven’t learned yet to keep a glucose source in the bedroom. I also still carry faith in my girlish dreams of an invincible prince/husband (oh yeah, all that Cinderella/helpless princess crap persists despite my best intentions).

As Jack slips further into his low, my choice is clear: I need to confront the intruder to get Jack his glucose fix. So with some effort, I grow instant balls, silence the cringing princess, and grab the only available weapon - a plastic curtain rod from the floor. Of course, unless I directly jab the intruder in the eye with deadly precision, the rod is just sturdy enough to disable a bunny.

I inch towards the noise, responsibility for my husband’s well-being pushing me out, fear almost keeping me back. As I reach the living room, I quickly flick the lamp on and the light reflects off a pair of slit eyes. We stare at each other, both in frozen surprise, then the cat turns and bounds out the window into the night.

What I learned that night was:
1) To always, always, keep glucose in the bedroom.
2) To close the windows at night.
3) That there would be times in my marriage when I would be utterly alone to face fears, make decisions, and take action.
4) That there would be times when my husband’s health rests in my hands.

Those would seem to be quite basic and obvious, but a splash of cold reality for a cossetted and lazy 25-year-old.

Throughout the next 14 years, diabetes has been a constant and petty intruder into our relationship. It has, at different times, robbed my love for Jack, my respect for him, and my kindness towards him. It is an ever-present threat to peaceful days, health, and adds another burden to marriage (which, even under the best of circumstances, is more work than I could have ever predicted).

And yet, every time it does damage, it also does good. It reminds me to love him, and respect his personal burden, and how well he’s dealt with this beast slung about his neck for so many years. It’s fostered patience and understanding where I was sorely lacking. It’s turned me from coddled girl to reluctant warrior princess (able to brandish a curtain rod at errant alley cats!). It reminds me that I chose him when I decided to marry him. And that I continue to choose him for reasons ~~beyond my comprehension~~ (heh heh)…for reasons beyond his diabetes.

– A.Q.

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Thursday, July 13th, 2006 | Permalink | Comments (14)

Comments

This is great. Thank you Amy & Thank you Anna Q!

My wife is great. Very supportive, very patient, very tolerant, and just a beautiful person, inside & out.

But I think that at time my diabetes scares her, and she does not like to communicate about it. It is helpful for me to read the experiences of partners, to get some exposure to their perspectives. It will help me understand the feelings that my wife expresses.

Thank you!
Posted by: Scott K. Johnson | July 13th, 2006 at 8:56 am
Thanks Amy and thanks Anna Q. You two have inspired me more than you can know. Being the wife of a diabetic is scary yet beautiful thing. His diabetes really has made us better people and that’s what I need to focus on. I am working on a story to have you post. I think this is just what the doctor ordered for me.
~A millions thanks.
Posted by: Judy | July 13th, 2006 at 11:15 am
Anna Q, I definitely hear you on these things after my husband’s hypoglycemic seizure in 11/04…

3) That there would be times in my marriage when I would be utterly alone to face fears, make decisions, and take action.
4) That there would be times when my husband’s health rests in my hands.

It was certainly a direction-changing experience for me.
Posted by: Rachel | July 13th, 2006 at 6:11 pm
Thank you for the wonderful insight into what those who live with us that have diabetes go through. I am trying to get my hubby to write something about how he feels about my diabtes but it probably won’t happen He says he has already told me that if he could he would take it all away and that he could never do the shots. Thank you both!
Posted by: melissa | July 14th, 2006 at 8:07 am
But what about Scared to Health?
Posted by: d | July 18th, 2006 at 5:37 pm
I have been married to a type one diabetic man for 17, almost 18 years. We dated for 4 years prior to marrage. He was diagnosed with diabetes at age 8 years. I feel like people see me as a cold hearted monster as I write this. . . but. . . I have had enough!! I need a billboard, not this note to make any sense of it but that is the way I feel. He has a pump and seems fairly well controlled with few complications so, what am I crying about you say? I feel so alone with him. Living with him has been like living with an aloholic at times. We have a lot of baggage, but for me diabetes is the one more case that will knock me down. I am tired of not being able to trust him. “It is not me, it’s my diabetes” he will say. Well it is all the same to me. Most of the time his sugars are in control but when they are not, he is not! I have three girls. At times I have had to protect them from him as he can be like a drunk who acts and says things he does not mean. He does not like it when I ask for an apology after his sugar runs low and he is difficult to deal with. I have had panic attacks before which I think are related to all the uncertainty. I know life is uncertain but, this is different. It is a known uncertainty that is always there. I can never escape from it. I have expressed this over and over to him. He says, “what can I do”. I think to myself, nothing. Everyday for several years now I experience divorce dreams. I realize divorce would be extremly hard on everyone including myself. But what I truely fear the most are complications from diabetes and my angry reaction. That would be so ugly I could not stand myself. I would not wish complications on anyone especially him. He would be the one suffering everyone would say but he is never the only one. He would just be the obvious one. I know this sounds like junior high but I often wonder if I am keeping him from someone who would care for him better. He is a beautiful man, very attractive in that way. I know if I were not there he could start over with someone who would be in if for the long haul. You don’t know how much I wish that could be me, but it is not. By the way please don’t recommend therapy. I have been down that road with him. If he were not diabetic would I want to hang in there. Yes, I think things would still be difficult due to our baggage but we could get a cart and push it together. Now we are just trying to each carry it alone.
Posted by: The hardened wife | August 7th, 2006 at 9:37 pm
Hi d,
I’m terribly sorry to hear about your situation. Far be it from me to recommend any specific course of action.

All I can say is that if your husband truly does have his diabetes in check “most of the time,” then it most likely isn’t the disease that’s wrecking the relationship. There are likely other forces at work. The diabetes can just make tough situations harder, for sure!
Posted by: AmyT | August 9th, 2006 at 9:16 am
I loved reading your follies. I have been married to my diabetic husband for 1 year and 10 months and we date for about 3/4 years. He was diagnosed with diabetes at the age of 1 and is now 33 years old. He is on the insulin pump and pretty much has his sugar under control. We are trying to have a baby and are very happy most of the time. I am 27 years old and love him so much. At times I struggle with his lows and highs and the way they affect his moods. Today, we had a bad day…his sugar was messed up for most of the day so he was very to himself and irritable. He was very tired and went to bed at 8:00pm. I am working on my masters degree so had some work to do on the computer and had to leave bed because he was so tired. I started looking online to find a support group for wives of diabetics and finally found this site. Your right about the diabetes doing damage and also good. But I am also scared…because we are trying to have a baby and I dont want to have to apoligize to our children for his bad moods due to highs and lows. How have you handled this?
Thanks for your posting…it reminded me of the reasons I love my husband so much!
Thanks - Terry
Posted by: Terry | September 24th, 2006 at 7:02 pm
its good to hear other people have the same problems. For me, the birth of my first child two years ago really changed the way my husbands diabetes impacts on my/our lives. How do you chose when both your child and your partner need you? How do you protect your child from the hurtful things a diabetic says during a low? How do you explain to a two year old why his dad has collapsed on the bed, why he is screaming at mom, or throwing furniture around? and why, when you try to explain to the diabetic that he shouldn’t be playing with his son during a hypo because he might hurt him, does he not get it?
Posted by: ruth kamnitzer | December 3rd, 2006 at 7:22 am
Hi. I am reading your emails and feeling much better. I have been married 22 years to a diabetic who is usually the most wonderful person. We have had some extremely scary experiences that are a nightmare. Yesterday’s was one of the worst. I usually am successful at keeping the scary scenes with hime away from my 2 teenage daughters, but yesterday my 16 year old was in the room to witness a “low scene”. I was trying to get him to drink some juice. He is yelling at the top of his lungs at me, throwing a chair, and finally came at me with a scary look on his face…he is very strong. He grabbed by arms and began squeezing with all his strength. To make a long story short. I of course an fine..got him to drink the juice etc. My daughter ran out of the room saying “I hate you”. He never remembers all of these scenes and thinks I exaggerate when I tell him he needs to talk to her! This disease has definitely chipped away at my love for him. It is scary and I resent his lack of remorse for these episodes. Partly of course because he says he can’t help it. I have been looking for a site where I can speak to other women who deal with this. I also, have had thoughts of divorce. I am not ready to end our life together, but definitely wonder if I can deal with this “forever”. We are happy people for the most part, work together and have 2 wonderful children. It is very stressful for me to keep this part of him under control.
Posted by: Mary | January 2nd, 2007 at 11:17 am
Well said!!!

The only thing I could add is that being in a significant relationship with someone who deals with Type 1 diabetes, even with extreme care, is under the best of circumstances a challenging path.

It’s not just about being ready for diabetic first aid.

When the “demon” of discomfort comes out in a hypo or hyper-glycmemic event, it can be really difficult to discern what is coming from the prickliness of unbalanced chemistry vs. what is a real issue of our loved one’s subconscious wanting to lash out at us.
Posted by: victoria | June 15th, 2007 at 12:40 pm
My husband was diagnosed at 21 with Type 1 diabetes and has been living with this life sentence for the last 14 years. We met 4 years later after his diagnosis and have been married for 9 years. I remember my parents cautioning me about how challenging it would be to live with diabetes but I really had no idea just what kind of a battle would ensue.

My husband lives a really active life — he’s in great shape, avoids sweets, and treats, has a physically active job as an auto mechancic, and really in so many ways is healthier than most guys his age because he is so conscious of making healthy lifestyle choices.

We have two active boys who are 7 and 5. Our 7 year old dreams of becoming a doctor and finding a cure to diabetes, along with a way to “bring dead things back to life” and building a time machine. He knows all to well the effects of diabetes– how to pick up on the lows and has been on the other end of nasty low rants of rage. For his 7th birthday party he asked his friends to make donations to diabetes research instead of bringing him gifts. He’s such a wise old soul!

My husband started using a Medtronic pump with Real Time Blood Glucose Monitoring 1 year ago and it has increased the quality of our lives significantly; however, we still encounter more highs and lows than I’d like to admit. The Continuous Blood Glucose monitor gives a fair number of false readings and is far from perfect.

One night my husband forgot to check his blood before leaving work and must have been going low before he left. He couldn’t find the exit to get home and got lost. He knew that he should pull over and call for help but his body just wouldn’t listen to his brain. Ecentually he found his way home but it was just by the grace of god that he made it home without hurting himself or someone else. He was so upset and does make a conscious effort to check his bloid before getting behind the wheel when he’s not already going low. It’s all those times when he’s already on his way low that worry me!

He gets very oppositional when low and high and I’m finding it is taking more and more of a toll on me. I find it hard to trust him — not because he is deceitful — but because he cannot make good choices when he is in a low or high state. He gets irrational and argumentative and I find him a challenge to deal with — I worry about what will happen to all of my boys when I am not home. When he is high and argumentative, I finally have learned not to engage him and to go to bed which is best for my own peace of mind but that makes him all the more upset which elevates his blood sugar all the more. So, it feels like we loose no matter which action I take.

Most days I feel like I have three children to worry about and I’m starting to feel like more of a caregiver to my husband than a spouse. Our children have been coached and know to call for help if I’m not around but I worry that my husband will prevent them from taking the action they need to in order to help him. They recognize the signs and alert me to when Daddy is not acting normal if I am busy or pre-occupied with something else.

I already see our quality of life slipping away from us and worry about our ‘golden years’…. I am so relieved to have found a common voice and a place to read about others’ experiences living with a diabetic spouse. It’s nice to find kindred spirits!
Posted by: Shelly | September 15th, 2007 at 10:58 pm
Does anyone deal with a diabetic husband that goes on drinking binges? It can get ugly.
Posted by: Lynn V | September 26th, 2007 at 12:09 pm
I am so thankful to find this site. I have been praying for some information to pass on to my future daughter-in-law as she marries my son who has Type 1.
Posted by: Holly | September 27th, 2007 at 9:20 am