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!
Posts
I am so happy I found your blog. I feel like I need a "spouse of a diabetic" support group, for the exact things you write about. To compound my PWD anxiety, 2 years ago I found my father in the back yard... he passed away from a heart attack. You can imagine all of the crazy things that this put into my head about my husband. If my father, who was in seemingly perfect health, could pass suddenly at 52, imagine the possibilities for my spouse!
ReplyDeleteAnyway, driving is one of my biggest anxiety tics. He actually had a terrible episode with low blood sugar while driving to my house when we were much younger. He ran off of the road and when the cops got there they didn't see his med alert necklace and treated him as if he were on drugs. He ended up in the hospital and is fortunately fine today but that incident is one that I will never be able to get out of my head whenever he gets into the driver seat.
I really am so glad I found your blog. Sometimes (even though we too comminicate fairly well)being the spouse of a T1 can be very lonely. I have no one to share these fears with that understands and does not dismiss them immediately with "he'll be fine." I do know in my head that is true but it doesn't help to hear it from someone with little to no understanding.
so thank you.
This comment has been removed by the author.
ReplyDeleteYou are so very welcome.
ReplyDeleteI am very sorry to hear about your Dad - that must have been a terrible shock to the system to find him that way. What a terrible loss. I can understand how that would impact your "bubble of safety" and increase your feelings of anxiety around the possibility of unexpected, negative events. We live with that anyway as a spouse of someone with type 1! My biggest "trick of the trade" is just simple preparation - trying to make sure I have most (hopefully all!) of the bases covered before venturing out. It doesn't always happen (as per the story above), but keeping your head when things go south and having some "tools" at your disposal really does make a huge difference. You do what you can.
Just know that you are certainly not alone in this - there are others out there living through the same thing. I'm so glad you commented, keep sharing. I get it!
Take care,
Ashley
Hi There
ReplyDeleteTears well up in my eyes and I feel a lump in my throat, as I read you comments around driving. About 4yrs ago while 7months pregnant and with our other 2 children then 2 & 5yrs old, sleeping in the back seat, while we headed home on the highway from a weekend away, I barely had time to pick-up the symptoms that my husband was running into a low. Right there behind the wheel he went into hypoglycemic seizures. How we survived that day? I can only claim that we experienced a miracle, combined with my shear will as a mother who refused to believe my children were to lead such short lives, and my unborn child to never see the light of day. I had an open can of pop, which I'd been trying to persuade him to drink moments before the seizures set in. My mind was racing a mile a minute - I couldn't jump into his laps & take over, as at 7months pregnant my stomach was massive, I put the open can on the floor at my feet, reached over put on the hazards, opened my window desperately pointing to the right (we were unfortunately in the far left lane), with my other hand I tried to pull his leg of the accelerator, I couldn't. What now? I tugged at the steering wheel to move it to the right shoulder, crossing 2 lanes of traffic - I have no idea how I did it without being hit! Now in the hard shoulder I pulled up the hand-break it did nothing, we were going too fast! I started looking to see if there was a field I could veer us into to - nothing, there was a ditch, the car was sure to roll, my angels in the back, now awake from all my screaming...I couldn't risk it! The key? No that would lock the steering wheel, the gears! I threw them into neutral, we started to slow down, an elevated off ramp, that should stop us...it did - Thank god! Now to tend to my husband, I look down - miraculously, not a single drop of the open can of pop had spilled. I managed to get enough down him and he finally came around. Not totally aware of all that had occurred, but relieved that all was well. I still have nightmares about that day. The call to action that came about after this experience was that we got him a new physician who specialized in Type 1 diabetes, (the one he had was very unsympathetic to his need, and would always simply tell him to do better). His insulin was changed and they keep a much closer tab on him. However the frequency of testing still continues to be a challenge. We're constantly battling about his lack of testing. He tests 2-3 times a day, insists it's enough, even though he still runs into regular lows, especially at night. I was diagnosed with Gestational Diabetes during my last pregnancy, and would test that many times after just the one minimal shot of insulin I was taking, so can't relate to his mind set. He's even gone as far as to admit recently, he knows I'll jump to action, so doesn't feel the importance. I've been his safety net for 15yrs now, don't get me wrong, he's come a long way from the 21yr old who initially rebelled against his diagnosis. But I'm now 42, with 3 demanding children 9yrs & under, and am really struggling with his reliance. My sleep is affected and after dealing with low's every 3-4 days this past month and a half, am finding my own well-being is being impacted. On the off chance I drift into a deep sleep, I've been waking with sever chest pains as a result of the stress and anxiety. Tiered of trying to reason with him and start another fight, I wrote him a letter this weekend outlining this concerns and stating that I can no longer be his safety net if he can't become more pro-active. He's very upset with me and I feel totally guilty, but I just don't know how to get through to him. Any tips or advice you can share would be greatly appreciated.
Hi Spiri,
ReplyDeleteWow and wow. I'm going to have to post my response in two comments, because I have so much to say that it exceeds the posting limit!
Firstly, thanks for your comment and for sharing your experiences with your partner's diabetes issues. Driving is always a "hot button" topic it seems, because the danger of it is so immediate - as you so clearly described in your comment. I literally got tears in my eyes reading your story, as I can relate but also couldn't believe your strength and bravery in that situation. Mother bear took over, as I'm sure I would have done as well. I'm so glad that the situation turned out the way it did, and that you and your husband worked to try and get some help with better care from your providers.
But what I hear is that it is still a problem for you, and that the stress of being a mother to three rambunctious kids on top of worrying about your husband's lack of diabetes management is getting physical for you. It is such a tough one, but here is what my initial thoughts are. Firstly, is your husband on an insulin pump? When my husband got on one 6-7 years ago, it made a world of difference in the amount of serious lows he has had. They are FAR fewer when on a pump because you have so much more control over how much insulin is going in, and you have the ability to turn it OFF when you need to (vs. having the "freight train" of insulin going in after a shot). Tony's lows got so much better after the pump - much more controllable. The other thing that your husband you look into is the Continuous Glucose Monitor (CGM) - both DexCom and Medtronic have units that are pretty good. Medtronic's has to be used in conjunction with their pump, but the Dexcom one can be used on its own. The good thing with that is that your husband would get a much better sense of his BG patterns, and especially at night you would have some piece of mind because it alarms whenever it senses his BG going low (you set it where you want to alarm ... at 80? at 70?), and he can treat more proactively. Same with the highs. One reason my husband was having so many lows was because he was trying to keep his numbers in extremely tight control (he was more worried about the long-term complications from high BG, vs. the immediate lows which worried me more!). The CGM allows him to control his highs too, so it is a win-win for us both. Let that be his safety net, not you.
About the emotional burnout piece of things, which I definitely see in your post - that is tougher.
To Be Continued...
(Continued from above...)
ReplyDeleteI think about it is about trying to help him figure out why he has such resistance to checking more (my husband tests 8-10 times/day minimum), and what he sees the consequences of that being. We make "rules" about checking before driving (since I am the co-pilot I have the RIGHT to ask what his number is before we start out).
I also want to refer you both to a non-profit group that does programs for people who are having trouble "getting on track". These are not diabetes education programs, but programs designed to address the emotional and behavioral side of diabetes management - for those people who KNOW what they should be doing, but just don't do it. They are also super low cost (like $10 for an entire DAY program). It is called the Behavioral Diabetes Institute here in San Diego, and I HIGHLY recommend it - the founders involved are world-class ... see it here: www.behavioraldiabetes.org . If getting to San Diego is not an option, there are also many resources on the site - including videos of talks that might help things. These people are amazing, dedicated professionals.
Spiri, I think the bottom-line is that you have to do what is best for you, for your children, and for your wellbeing. Do NOT feel guilty for expressing your needs, it is critical that you communicate with him how his lack of participation in his own management is affecting ALL of you. Diabetes does not just affect the person living with it, it affects everyone around him. Just keep telling him that, until he gets it. If you have to take action to make him get it, I think it is valid.
I also wanted to direct you to another blogger who talks about being a wife of a husband with type 1 - I saw her site because she too talked about driving-related anxiety, and she's got a great sense of humor too (she's also a mom). I hope it helps you too: http://myinneraria.blogspot.com/search/label/diabetes
I wish you well, feel free to reach out again.
Take care,
Ashley
I was doing a google search about driving with a Diabetic and your blog came up, my husband is diabetic type 1 and anytime we are planning a trip/drive I feel I cant relax and kinda freak out the whole way... Im glad Im not alone in feeling nervous etc. thanks for your blog maybe this time I can do everything possible to make it a good trip.
ReplyDeleteLisa from Boston
CGMs like Dexcom are great for a ton of reasons, and this is one more. I put my monitor in the coin receptacle while driving and can see very easily if i'm trending downward
ReplyDeleteWhat a great idea (using your coin receptacle to hold your CGM) ... it is a very safe way to stay in the "safe zone" while driving. I like it!
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDelete