Tuesday, June 22, 2010

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.

Sunday, March 28, 2010

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?

Saturday, February 20, 2010

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!