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?

Diabetes-Related Anxiety #1: Driving

I think that in this daily journey of living with a PWD, one of the hardest things for me to manage my anxiety around is driving. It seems like such a small thing, right? It is so much a part of our daily lives (especially here in Southern California!), something that we must do, something that is a given. But it is something that I still have difficulty with, even though it has been 13 years since my husband was diagnosed with type 1 and he is in very good control of his diabetes.

Now of course I'm not talking about my driving - that I'm good with! I'm talking about when my husband gets behind the wheel ... either with us as a family, or when he's commuting to work alone. Even though he is very proactive about checking his numbers and being safe in the car - he really is a great driver - it is that 5% "possibility" of problems that wears on me ... that little "diabetes fairy" that pings PWD on the shoulder occasionally and makes their numbers go completely out of whack without a lot of warning. This is what worries me.

Case in point: on a recent drive up to Los Angeles with my husband and I and our two little ones in the back seat, we were on the 405 freeway going about 70 miles an hour when my husband asked me to open up a juice box for him. I immediately jumped to attention, because this time I hadn't noticed any signals of him going low - he had checked his numbers before we began and although he had been running a bit high he was definitely in a safe zone for driving. When he asked for the juice he said he didn't think he was low, but since he had played soccer that morning he was having it just to keep everything level. I requested that he check his sugars "just in case", and I helped him do that while we were still driving.

The number on the meter shocked me: it was very low, lower than we had ever experienced while driving. My heart leaped out of my chest as I realized that he was way too low to be behind the wheel. I tried to conceal my sudden panic as I directed him to pull off of the freeway at the next exit. Luckily we were able to do so, treat his low, and I took over driving. All was alright - this time - but it was a true shock to the system, and it stayed with me ... some of the what if? playing back in my head throughout the day.

I was able to manage my own anxiety around the experience and finally shake it off, but I did keep thinking: what did this experience reinforce to me?

• That diabetes still has the ability to shake me up in ways that I didn't see coming - I sometimes think that after 13 years of living near the disease I have it all "under control" and know what to expect each and every day. Boy, was I wrong! This experience humbled me in a way - reminded me that I can't become complacent with it. Not the most positive lesson, but it is what it is. I have to accept that and move on.
  
  
• That it is very important for the PWD to listen to their body's important cues, especially while driving - when I asked my husband (after we had safely stopped) if he had felt this low coming, he said that he had had an "inkling" ... and then admitted that when he asked for the juice it had been more like his second or third "inkling" that he was getting low...but that he hadn't wanted to worry me. Lesson learned? Pull over with that first inkling that a low is happening! Our job as co-pilots is to make sure that our PWD feels okay enough (i.e., he or she is not going to get reprimanded, ridiculed, or "freaked out" at) to admit to a low and to do what they need to do while driving to pull off safely and treat it. It is not worth anyone's safety to do otherwise!
  
  
• That all you can do is be prepared - have that juice box handy, make sure the glucose meter is nearby, make sure that you are ready and willing to take over driving if need be. Make it easy on them, so that if and when they need you, you are good to go.

I'm sure that some of you have been through a similar situation. What are your "lessons learned"? I'd love to hear about and learn from your experiences. Please share!

When Conflict Catches You By Surprise

In all honesty, things have been going pretty well with both my husband and with his diabetes. He recently had a check-up with his Endo, and even though he was afraid otherwise (due to high-levels of stress at his job and subsequent blood sugar highs every day) his A1c was great, all numbers fine. Phew. I was proud of him and his effort, because I know, and recognize how much work it takes him to make those numbers happen and keep himself in check. Kudos to him.

So how does it happen that you're going along, all is well, your spousal "diabetes-anxiety" is kept in check, you're happy with how things are... and then BAM!, diabetes-related issues once again raise their ugly head and create conflict in your relationship. I thought, after 12+ years of dealing with this that I would be an expert at not "letting it get to me"... but once again I am humbled by the power of the diabetes' effect on our lives and my reactivity to it.

So here's the story - see if any of this sounds "familiar" to you?: my husband went out on a Saturday evening to have a beer or two with his soccer buddies, a very important one of whom was leaving to move to Bali, so this was his goodbye. My husband left early - around 6pm - saying that he would be home "in a couple of hours". No problem, off he goes, all is well.

Here is the challenge - it was a Saturday. Every Saturday morning my husband goes and plays soccer for 2-3 hours, which is fantastic for both his mental and physical health. Since he's from Barcelona, Spain, this few hours is his "religion", and I don't mess with it! The challenge is that such a burst of physical endurance sets him up for blood sugar lows all weekend - but we're used to this, he's been playing for more than 10 years with this same group of guys, and he's very good at controlling the lows. However, they are something that we've come to expect ... particularly a few hours after he gets home on Saturday, Saturday evening, and then again Sunday mid-morning. He combats it by lowering his basal rate of insulin (he's on the Medtronic pump), bolusing less, and keeping a close eye on his numbers by checking often. I'm not as "vigilant" as I used to be around these lows, but I still carry some anxiety about it, particularly since the only real significant low episodes he's had (a couple as low as 29!! but most bad ones in the 40s and 50s) have been after he's played soccer.

So, back to Saturday night - Tony goes out, and my expectation is that he'll be home before 9pm sometime. So 9pm rolls by, 10pm rolls by ... I try to call him on his cell phone, but he doesn't answer ... and by now I'm starting to get that pit of "worry" in my stomach, the one I hate, the one I try to "talk out of myself" by rationalizing what he is probably fine, can't hear the phone, etc. By 11pm, and after the second voicemail I leave, I am starting to get very fearful, my diabetes-anxiety has kicked in full gear. It didn't help that it was crashing and storming outside (something that we don't get very often here in San Diego!), and in my head I was creating all kinds of stories for myself: that he had a low, that he got into an accident on the way home, that the beer mixed with not enough food mixed with soccer could have created a low that clouded his judgment and he drove when he shouldn't have ... oh, the stories go on.

Needless to say that by when Tony called me at 11:10pm saying "did you call me?", it wasn't pretty. It is incredible how quickly anxiety turns to anger when you know that person is fine. And when the key turned in the lock 1/2 hour later?...well, I'll save that for another post.

I'm lucky to say that my husband and I really don't have much conflict in our relationship. But this event, my reaction to it, and the consequent "discussion" that Tony and I had, really showed me how critical communication is when you live with someone with type 1. What it all came down to was this: had Tony called me at some point in the evening to let me know that he wasn't going to be only "a couple of hours", but in fact was going to stay longer, all of this would have been averted. The fact that I didn't know, that I was left to worry about all of the possibilities, was what was unfair. It highlighted to me a couple of things, and I wonder if these would be the same for you all:

• It reminded me that living with type 1 is a partnership formed of mutual trust and mutual respect. I do my part by being attentive to Tony's needs around diabetes, by being supportive, by watching what I cook, what I shop for and bring into the house, by the choices we make every day. Tony's part (other than proactively trying to manage his diabetes the best he can, which is huge) is to check-in with me when he is out, especially if he is gone longer than expected. It is amazing how a quick "hey there" can ease my mind, and help me put my diabetes-anxiety back in its place. His being sensitive to this shows a great deal of respect for me and my feelings.
  
  
• It reminded me how important it is to communicate to Tony my needs around his diabetes. I forget sometimes that I have them too! In this case, I had never really shared how important it is for me to have that check-in with him, especially in certain cases like him being out on a stormy night, a Saturday night where he was prone to lows, in a loud environment where he couldn't hear his phone. Had I communicated that to him ahead of time, in a "less heated" discussion, I think the message would have been better received. In the end Tony did listen, but it took us a while before either of us were open to hearing each others' needs. I think we could have done this much more painlessly had we done it ahead of time.

But you know what? Lesson learned! Even for those of us who feel we "have it all under control" that diabetes-related conflict can still rear its ugly head when you least expect it. I think the key is maintaining respect for each other by being proactive about it - communicate your needs with your partner, and listen to theirs. And do it before you're in the "middle of it"... for both your sakes!

“Fact of Life” #2: Anxiety

What’s the one thing that all of us who are partnered with someone with diabetes have in common? We are all anxious. It varies by degree, but it is a common strain that runs beneath many a calm, functional exterior. It can be related to fear of lows, anxiety around complications or co-existing medical problems, fear of the future, or the biggie, death of our loved one. Since my husband was diagnosed with type 1 in 1997, I have felt the omnipresent sense of worry that stays with me day-in and day-out. Sometimes the worry is very specific (“he’s driving home – is he low?”), sometimes more generalized (“I can’t reach him … what's happened?!”), but it is always there. After 12 years it doesn’t bother me as much anymore – and I have learned some important ways of dealing with this unique form of “diabetes-anxiety”... they include the following:

• Try not to “anticipate” – just because something has happened in the past does not necessarily mean it will happen this time … I try hard to live in the present moment and judge situations for what they are.
  


• Actively gather information from people who know what they are talking about – for me, knowledge is power, and it helps quell my anxiety (about my husband’s lows, or his risks for complications for example) if I know what I can expect to happen… asking people I trust (my husband’s physician or other people I know with diabetes) helps me to feel prepared “in the event of” - of course I recognize that things may always change, but at least I know what is likely to happen in most instances
  


• Come up with tools or things to make sure you are prepared – I try to be active in my coping ...making sure we always have juice in the house for lows, or that I know exactly where the glucagon is (even though we’ve never had to use it!). In this way I know that if these things are needed, we’re covered, and I can relax just a bit.
  


• Remember that you’re not alone in this – when things get too much sometimes, it helps me to remember that there are others out there who understand my situation, and who are facing the same things every day. All I have to do is seek these people out (by connecting with friends or finding groups online), and I’ll find people who really “get it”. Hearing other peoples’ stories about their loved ones with diabetes always put my own into perspective.
  


• Try to be kind to yourself and have some understanding of any “knee-jerk” anxiety around your loved one’s diabetes – it is not easy to constantly feel “on guard” around my loved one’s health, especially when it is related to a past negative event (e.g., a near-miss while driving, a midnight call to 911). However, I take responsibility for my own anxiety and try to separate out the “rational” from the “irrational” worry about his diabetes that I may feel on any given day. It’s my responsibility not to bring baggage into our daily relationship. He doesn’t need one more thing to have to manage!
  


• Try to work out better ways of responding – someone once told me if something wasn’t working, to try doing the opposite to see what would happen. For me it’s been the same with my reactions to my husband’s diabetes – sometimes when I feel the most anxious about a situation or his response to it (or lack thereof!), I try to be the most calm, the most objective… and it often works to stop my anxiety in its tracks! I feel more empowered, and it also seems to make the situation better… go figure!