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.

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!

“Fact of Life” #1: Blood Sugar Lows

One of the hardest things for people who love someone with type 1 diabetes is dealing with the blood sugar lows that happen on a fairly regular basis. Over time we may get used to them, and get more competent at helping our loved one come back to normal levels more quickly. We also become experts at recognizing the signs that a low is imminent, if not already happening (for me it’s all in the eyes!). Since my husband was diagnosed with type 1 in 1997 and keeps his diabetes in very tight control, we’ve been through many, many low episodes – some worse than others.

Over the last 12 years I’ve learned some very important lessons – what I call “How to Keep Your Head When Your Type 1 Spouse is Losing Theirs in a Low”… here they are:

• Don’t panic – you freaking out can cause the person extra stress which can actually make them go lower … so hang in there, and project a calm face if you can … even if you’re absolutely faking it
  


• Be supportive – offer to get them some juice and/or make them a quick snack … just because you “felt like one too”
  


• Don’t force them to treat their low the way you think they should and/or “hover” – use your judgment, but remember that they are adults, not children, and treat them accordingly
  


• Let them guide you – if they just need space to come back up, give it to them without overdoing the “just checking in”
  


• Have empathy for what they are going through – remember that they didn’t do this on purpose, or to get attention, to delay doing something around the house, or because they “felt like it” … lows feel bad, no matter what.