Let's Talk About Sex....

Listen, I'm as private about my sex life as the next person... it's taken me a long time to blog about it because it's something I don't feel needs to be shared widely on a regular basis!  However, lately I've realized that there just isn't enough out there that speaks to some of the challenges that we (those of us who love someone with type 1) have in this arena.  It's like people just don't want to talk about it.

So, let's talk about sex.  First of all, let me preface this by saying that my husband and I have been together a looonnngg time - 25 years in fact (married for 19).  And you expect there to be ups and down, peaks and valleys when it comes to our sex life.  Lucky for us, we haven't experienced many valleys, and have been able to maintain a really healthy, active sexual relationship.  There are a few things though, that diabetes loves to throw in the mix ... and I thought it worthwhile to share one of these with you.

Lows during sex
The first few times it happened I thought it was just a coincidence ... but when the lows - and I mean significant lows, the 48s, 35s and lower - started happening fairly often during sex, I started to take note.  There is nothing that kills the mood more than discovering that your partner is not all "there" while you're making love, and honestly, as a woman this can be a little frightening.  I'm lucky in that my husband hasn't been in any way aggressive or belligerent during these lows, just somewhat silly and sometimes truly out of it.  But it is hard to discover that in such an intimate moment, you're suddenly the only recognizable one present.  It's an awful feeling.

Then of course there is just the break in momentum, even for more mild lows, to treat the issue, get the juice, etc.  Takes the wind out of everyone's sails, and it is highly unlikely you'll get it back and continue where you left off.  Even if you and your partner try to pretend like it's no big deal, it is.  Talk about coitus interruptus!  Thanks for that diabetes.

Emotional drivers for lows
Recently, my husband figured something out - and this was a huge "ah-ha" (and I don't know why we didn't think of this before!).  He discovered by testing his sugars directly before, and then directly after we had sex, that his numbers consistently dropped 100 points or more when we'd made love.  We never would have guessed it was that much!  And we're not talking aerobic, crazy sex, just normal... the good stuff.  I know people talk about this being attributed to the exercise involved in the activity, but we've come to realize that it's more than that ... it's actually more related to the emotional state of relaxation and happiness that makes my husband's numbers drop.  Throw the exercise on top of that (and however much insulin he recently bolused), and you have a potent mix for a pretty good low.

In the past we used to check his sugars before sex, just to make sure he was in the normal range (i.e., somewhere over 100)... but now what we've figured out is that this isn't sufficient!  Where we thought he was good - say around 140 - having sex would drop him down to the 50s, 40s, and lower during our encounter.  We have discovered that he actually has to be in the high 100s/ low 200s for this to really work and for him to stay on an even keel during sex.  So now it's a trip to the kitchen for some juice prior to any action.  This kind of takes the spontaneity out of it, sure... but it can also become part of the anticipation.

And anyway, I'd much rather be secure in the knowledge that my husband's not going to disappear during sex and become the low version of himself that I need to deal with.  I also will know that we will be seeing things through to completion... no interruptus involved.  If you know what I mean.  :)

Seeing lows from other side

I recently stumbled upon a video on YouTube that shows a man in the throes of a low blood sugar whose wife and daughter are trying to help him come back up ... it was interesting to say the least.  You can see it here:   http://youtu.be/pC_0CI9jV6A

My husband Tony (who has type 1) and I watched this together, and to be honest it was difficult to watch someone else going through something so personal ... and something so familiar.  Tony watched quietly and then he had some really interesting, and I think important, feedback.

In the video you can see the man sitting on the floor trying to work himself back into a normal state.  He is refusing help, which of course just makes everyone want to help him more.  According to Tony, the very best thing that we loved ones can do in that situation is to give our PWD space and some time to adjust.

He shared that when he is having a low like that, his brain slows down and takes five times as long to process even the simplest commands.  And not only that, but when someone interjects repeatedly ("drink the juice"... "drink the juice"), it forces him to have to START OVER and reboot the process with every interjection ... so whatever progress he has made towards stabilizing (whether that means being focused enough to take the juice, or to tell me what he needs), the interjection causes him to have to start from zero again and work himself back up....every single time.

So instead of helping him, any continual prompts are merely prolonging the process, and possibly making the low worse.  This was a huge "ah-ha" for me.  And we've been dealing with this for 16 years!

He said that the best thing I can do during a low like that is to give him space and quiet.  To leave the juice with him, accessible, and then leave him be.  Stay nearby (obviously), but give him the time and quiet that his brain needs to put two and two together and try and treat his low by himself.  He assures me that this will greatly shorten the process.

This isn't as easy as it sounds!  My knee-jerk response to a significant low episode is to get involved, but I've learned over the years that my anxiety doesn't help anything.  Obviously if Tony were incapable of drinking the juice or needed a more significant degree of assistance, I would intervene as needed.  But this little bit of recent insight helps me, so that perhaps the low wouldn't progress to that.

Can any of you relate to that?

Love How This Girl is Taking On The TSA!

I stumbled upon this video this morning of a 16-year old girl who is taking on the TSA (Transportation Security Administration) about their lack of knowledge of how insulin pumps are affected by the full-body scanners at the airport:

I am SO happy to see this getting some press.  The truth is that YES, insulin pumps are not just affected by the full-body scanners, but they can in fact malfunction in dangerous ways (i.e., start bolusing out insulin without being asked to - not good when you're at 35,000 feet).  I have heard this from multiple PWDs who have experienced malfunctions after going through the scanners, ranging from mild to severe.

I travel a lot for work, and recently I asked one of the TSA agents if they had heard about insulin pumps being damaged by the scanners, and he said no, he hadn't heard that.  Then he proceeded to tell me that it was 100% safe to go through the scanner with your pump ... which I wasn't going to argue with at that point (especially since I was travelling alone, without my husband with type 1).

Now, we are about to take off for a 3-week trip to Spain and Italy in a few weeks, and this video was just another good reminder to make sure that we take some information with us to ensure that if we run into TSA agents at airport security who are not aware of the problem with the scanners and Tony's insulin pump (which I am guessing there are many), that we have documentation to back us up.  We will ALWAYS request a pat-down from this point on, to ensure that nothing interferes with the pump's ability to do it's job.

Even after 17 years of living with my husband's type 1, I am amazed at the lack of knowledge and understanding that people have around diabetes.  Even people who should know!  Like TSA agents for pete's sake!

A Chance to Connect With Others Who "Get It"

I had the absolute pleasure of attending the "Taking Control of Your Diabetes (TCOYD)" Conference here in San Diego this past weekend.  It's in its 9th year, and was my fourth time attending.  It is a great, empowering day for people to learn more and connect with others around diabetes, and I'm always happy to be a part of it.  Rather than try to explain what it's all about, here is a snippet of what a day at TCOYD is like:

Wonderfully, this year they had a "Type 1 Track", with workshops and content aimed specifically for people with type 1 (the people with type 2 had their own, unique track).  I was asked to help run a breakout workshop for spouses/partners (another first this year!)... and I was honored to participate.

It was encouraging and extremely validating to share my experience and to hear others' experience of loving someone with type 1.  It made me see how much we all have in common, no matter if our partners are men or women, in good control or not, have had diabetes 2 years, 10 years or 50 years!  The main commonality of course - the one that had everyone nodding in agreement - was the issue of anxiety ... our anxiety over lows, over our partner driving, over them being home alone with our small kids, over them being okay when we're out of town for work, over them taking care of themselves, over what the future holds... etc... I'm sure you all know what I mean.  

Other issues came up as well, particularly with the older participants in the group (although this is still relevant for us all) - for example, how to advocate for your partner to maintain control of their insulin delivery/glucose monitoring if they're in the hospital (and help them advocate for themselves)?  We also talked about strategies to be prepared for lows, and best ways to help our loved ones in those moments that they can't take care of themselves.

I think that some of the best discussion came when we started to talk about ourselves, and our own self-care, which often goes to the way-side when we spend so much time worrying about our partner's needs.  Oftentimes this can be a weight that we carry that we do not communicate... because why would we?  They're the ones dealing with the diabetes, not us, right?  However, we also need to realize that type 1 is difficult on us too, and there is no better place to express that than in a supportive group of people who "get it".

For me, one of the biggest parts of this journey of type 1 diabetes in the last 15 years has simply been figuring out my role, and how I fit into the picture.  This was another issue that seemed to resonate with the group.  How much "control" do I take?  How can I best partner with my husband to make this work?  How much involvement does he actually need?  It's nice to know that others feel the same, and talking about solutions and sharing thoughts is always incredibly helpful.  I am grateful to the participants of the workshop (and their brave spouses/partners with type 1 who came to join us!) for being open and sharing their own experiences.   

One other thing I want to make sure to mention is that the wonderful non-profit organization the Behavioral Diabetes Institute (who I've referred to many times, since I know the founders and have been involved with it since it's beginnings... and which really is the only organization that deals with peoples' unmet emotional and psychological needs around diabetes), is finally developing an online support program for spouses (I am thrilled)!  However, to make this the most impactful and useful program they can, they need your help!  The diabetes psychologists behind the program's development (the fabulous Drs. Bill Polonsky and Susan Guzman) have created an online survey to gather as many spouse's/partner's feedback as they can to customize the online support program... and they would welcome (and need) your input!  The survey only takes about 10 minutes to fill out, and is wonderful - I've already taken it and given my feedback.  You can find the survey here:

http://behavioraldiabetesinstitute.org/Just-For-Partners-Program.html.

Please do fill it out and let your voice be heard.   It will only help!  The more support out there we can create for us spouses/partners, the better.

I look forward to hearing from you!

Casualty of Diabetes: Silliness

In the 15 years since my husband Tony developed type 1 diabetes, there have been many ways that the disease has infiltrated and affected our lives.  Most of these things have been obvious, and include much of what I've shared in this blog ... the anxieties, the work it takes to maintain balance, the challenges that daily living with diabetes takes, from both our sides.

It took me a while to realize that there was something else that had changed in our lives post-diagnosis  ... it was very subtle, but I realized that I missed it very much.  

Silliness.

Yes, silliness. The ability for Tony to loosen up and be silly, be spontaneous, be goofy ... without me automatically feeling that need to go on the defensive, check his pupils, question his sugar level. At certain times this need is magnified - for example if alcohol is involved.  However, it is true at any time, regardless of where we are or what we are doing.   What a sad thing for him to lose that feeling of spontaneity, that ability to have fun without having his intent or mental status checked!  What a sad thing for us as a couple to lose that innate sense of fun that we had before he was diagnosed, that sense of ease with loosening up and being in the moment.

It struck me that this may be a quiet, disconcerting thing for a lot of us spouses... and that we may mourn the loss of this in our lives more than we realized.  At least that's true for me, and I'm sure it's true for my husband.

The question of course is how to combat the feeling of loss that may accompany this experience.  How do we build in ways to get past our own anxieties and read any given situation for what it is?  How do we best communicate with our partners to try and understand where they are at?

Unfortunately I don't have any answers on this one... but I'm sure that some of you may!  Feel free to comment and share some of your thoughts or strategies on how you've managed this in your own lives.  We'd love to know.

Taking the Plunge

Since we have diabetes in the family, my husband and I have decided to take our two children, ages 4 and 9, to the TrialNet event here in San Diego tomorrow, where they will be screened for the antibodies responsible for the development of type 1. Not only will we be contributing to a very important study on how to prevent, delay and reverse the progression of type 1 diabetes, we will be finding out some critical information on our own kids' likelihood to develop the disease.

But I'm petrified.

It's not logical, I know ... but as a mother I am terrified to find out whether one of my beautiful children has the markers that mean they will develop type 1 diabetes in the next 5 or so years. Sometimes the fear takes over rational thought... the idea of such little people having to deal with this disease on an hourly basis makes me want to weep. And I know that my husband feels the same way... and even moreso, because if one of our kids does test positive, then somehow he feels it is "his fault", since his genes are the ones bringing diabetes into their lives...

However, my husband and I are choosing not to stay in the fear, not to bury our heads in the sand, thinking that not knowing is better than knowing. Five years ago perhaps - when there wasn't anything out there to DO with the knowledge ... then yes, we would have had a reason to avoid the information. But now, with the advances in research and the clinical trials out there that are helping if not to completely prevent the onset of type 1, to postpone it by a number of years, we have no excuse not to do this.

And so it is time to face the fear ... to take the plunge. Hopefully our children will be one of the 96% of family members of people with type 1 who do not test positive for the antibodies (96 people out of 100 test negative), and all this fear will be a moot point.

But if they do test positive, or one of them does, we will face it the same way that we faced my husband's original diagnosis 15 years ago - together, with strength, and with positive action.

How Do Our Spouses w/ Diabetes Feel About Us?

I just stumbled across this video from dLife, where PWDs are interviewed about how they feel about their spouse's (usually well-meaning) intervention into their daily diabetes management. I find it really interesting! I think that often our spouses are not necessarily that forth-coming with how our efforts make them feel...

Take a look and see what you think... any of this sound familiar in your house?

Rude Awakening

There's nothing that snaps you awake at 3am quite as quickly as discovering that your spouse / partner / loved one with diabetes is in the throes of a serious low.

It happened to us just the other night. For some reason I woke up at 3am, and in attempting to get my husband to move over (he was like a dead weight, which should have been my first clue) I reached over and found him drenched in that cold sweat ... hands, legs, neck, arms, everywhere. And it was bad, a LOT of sweat... which isn't normal for him, even when he's low. I was suddenly wide awake, on alert, realizing that he needed my help.

My husband has had type 1 now for 14 years. Through these years we've had our share of diabetes highs and lows, but luckily only a handful of really serious episodes. I realized in an instant the other night that this was one of those episodes.

A few years ago I would have completely panicked, and wasted time trying to get him to test his sugars (which he was completely unable to do), or talking AT him to do things... "drink the juice", "test", or peppering him with questions as to how he was feeling. But recently I've learned from him, particularly from his last serious low, and I kept all that he told me in mind as I navigated this critical situation.

Firstly, I kept it calm and quiet. My husband shared with me after his last serious low that when I talk to him during those episodes it is as if 20 people are talking to him at once, and he cannot process what is being said. So instead, I got up and went to the kitchen for juice, no words spoken. I came back to bed and simply held my husband's head up and supported his shoulders so that he could drink the juice without spilling. The only thing I said to him (quietly) was "you need juice", and then sat behind him, held the glass and fed him sips of juice every few seconds. I had to keep him upright because he wanted to just slip back down into a sleeping position, but I made sure he could still drink. As long as the majority of the juice was going down, and I knew it would do the job and I wouldn't have to hunt for the glucagon. I did this for about 30 minutes, quietly and calmly, trusting that he would slowly come back up ... which he did.

The one thing I also realized is that I had no idea how to turn off his insulin pump. I didn't want to start pushing buttons because I certainly didn't want to end up bolusing more insulin into his system. Short of ripping his site out, I didn't know how to stop the insulin! This was a rude awakening as well - that as prepared as I thought I was, I had overlooked this one important factor. That was the first thing I had him show me the next morning - and I am now an expert at suspending his pump. But it reminded me of the things I forget to know, until I'm in a situation where I need to know them. Not good - better to be prepared ahead of time and save yourself the stress.

Luckily my husband came back up and came to his senses - by the time he tested he was at 87, definitely a comfortable zone for me. Within an hour we were both able to go back to sleep knowing that all was well.

What I find interesting though, is that even though everything went smoothly and turned out well, I've still been processing the episode for the last two days, going over it in my head. I think the thing that plagues me the most is the "what if"... what if I hadn't woken up? what if I had been travelling and wasn't home? (we also have two small children, so this is of course a concern) what if it had progressed further?

The funny thing about these episodes is that they are critical in the moment, but once the moment is over, they are done. You go on with your life. But I think what I realize as I write this down, is that the episodes are over physically, but not emotionally. These episodes stay with my in my psyche, as I'm sure they do with every other spouse out there. It is difficult to see your loved one in such a state of need, and for some that may wear them down.

But I choose to look at this a different way. What I really see it coming down to is partnership. I suffer from migraine headaches - the kind where you're completely incapacitated and unable to function - and every time that I've had an episode in the last 20+ years that we've been together, my husband has stepped up, and taken care of me, our kids, and everything else as I've needed him to. His lows are similar to me - sometimes he needs me to step up, and when he does I am there. It is part of our partnership as a couple, recognizing that we truly need and are there to look out for each other. It's what helps me keep these emotional memories of his serious lows in check.

The lows are what they are. The experience of supporting him through one is what it is. But how I choose to frame them in my psyche is up to me. And you.

How is living with your partner's diabetes for YOU? Tell us more ...

Since I've been receiving some wonderful comments and email from the posts that I've put out here on my experiences of living with someone with type 1, I thought I'd ask you all to share some of your experiences too.

Although we know that we are not alone in living with someone with diabetes, we also know that it can be somewhat isolating at times. There aren't nearly as many resources or knowledgeable sources for the kind of specific issues we as spouses, partners and loved ones of people with diabetes face. One of my biggest goals in starting this blog was to provide a place that people might find some commonality with their own experience - a chance to hear from someone who "gets it". But I would love to hear from more of you - you all have as much experience, wisdom and "lessons learned" as I do. Let's hear them! Let's put it out there and see if indeed there ARE things that we can enlighten each other on... find support for ... get validation of...

So I would ask: How is it for you in your daily living with a person with diabetes? What are the most critical issues you face? The biggest challenges? The most powerful wins? The biggest anxieties?

How much do you feel "control" issues affect your relationship (yours or theirs!)? Are you happy with how your loved one takes care of themselves? How much does diabetes-related fear and anxiety affect your overall wellbeing? How well do you both communicate around their diabetes? Are there any "hidden emotions" at play in the relationship around the diabetes? Are they (or you) getting "burned out" by it all? How do you cope?

What else? I'd love to hear your story.

Lows, lows, lows...

Well, it happened again today. One of those scary low blood sugars in my husband when I least expected it. This was a bad one - I am lucky to say that in our 12 years of dealing with his diabetes (since he was diagnosed), I've only really dealt with a handful of "serious" lows... the kind that make your stomach knot and your knees weaken, when you realize the place your loved one is in and you don't know exactly how much time you have to intervene before it gets to the calling-the-paramedics kind of low. I'm sure you all know what I mean.

Luckily we were in a stable place when this happened - at home, the kids happily engrossed in a movie - so that we were able to move through it and come out the other side quickly. Funny thing, because of the kind of low this was - i.e., my husband got so low that he was not making sense, lost his judgement of things, and was becoming combative at my attempts to get him to test or drink some juice - and because we sat together as he was coming back up and out of it, we had a chance to talk about what had happened (once he was relatively normal again) and to figure out what we could do differently next time. It was a real learning for me, and I wanted to share with you my thoughts, in case it might help you in the same situation.

Learning Point #1: Back off, way off

As I realized how low my husband was (even though he refused to test or let me help him test in that state, which just validated how low he was), my anxiety kicked into gear. My hands started to shake. I tried to stay calm and "convince" him to have some juice simply because I wanted some too ... and I placed it on the table in front of him. However, the more I asked him to drink it, the more he rebuffed it and pushed it away. The more I gave his meter to him at the table, the more he refused to do it, saying "I didn't get it!" (whatever that meant at that time, I'm still not sure). Luckily, finally, he gave in and tested his blood and drank the juice - and then almost immediately started showing signs of coming back up and out of the low. In the same minute he went from fighting me to a sudden awareness of what was going on - when he looked over at me and said "I'm acting stupid, aren't I?", the relief that flooded over me was palpable.

As he was coming up though, he told me something interesting - and important. He said that when I talk to him, or try to give him juice when he's like that, it's like 20 people being in the room talking to him at the same time. He said what he really needs at that time is less stimulation, because being that low is like "sensory overload" for him. It is too hard for him to process anything, and he said the best thing I could have done is left the room. Of course I said I couldn't do that, not when he's like that ... and then he agreed but said that I could have just left the immediate space, maybe sat further away and given him the time and space he needed to do it himself. It is difficult to think about doing this, but something I will think about and try to do appropriately in the future. Takes a leap of faith on my part though, I tell you!

Learning Point #2: TRUST

Something interesting that came out of this today too, was that before I knew about his situation, my husband was trying to wait until I left the room before treating his low - one of the reasons he got so low I think! Once he was back up again I asked him why? It became the same answer - he didn't want me to "freak out" or pressure him. However, we were able to have a discussion around it again that reinforced the fact that diabetes is a "team effort", and it takes trust. He needs to trust that I have his best interests at heart when my guidance during his lows becomes "intense" (as he perceives it), and I need to trust that he will be able to take care of things before they progress to that point. And I need to give him the space he needs to be able to do just that.

And I'll try, I really will.

Anyone else know what I mean?