Burden
Burdened
The little incident with the paramedics over the weekend has stirred the old emotional kettle. As I tweeted yesterday (I’m trying to get on board with Twitter so hopefully I haven’t slaughtered the lingo that comes with it), I’m feeling really sad about how my ‘betes affects Jason. Sad doesn’t even quite capture the feeling I’m having, but I don’t think the word I need exists, so it’ll have to do.
I’ve always felt that my diabetes was a burden to him. I have what amounts to unbearable guilt for feeling like I essentially trapped him in the ‘betes abyss. I told him I was diabetic from the get-go, but I quickly knew that he didn’t understand what it meant to live with diabetes. Just like the rest of the world seems to naively perceive it, as far as he was concerned, I checked my sugar and took some insulin and that was that. When we were in the first few months of our relationship, madly in love, he never dreamed of growing old under the shadow of fear of complications, or restraining me from hurting myself as I flailed in some semi-conscious state while he waited for EMT’s to scurry up our sidewalk.
Of course, he has his faults and as is the case when people are in that stage of a relationship, we put our best foot forward, hiding the kookier personality flaws and odd habits, and in turn we overlooked each other’s short-comings. It just doesn’t seem fair that all he had to hide was a lifetime worth of Star Wars Legos and a tendency toward suppressing his feelings, when I was able to discreetly hide the true experience of living with diabetes.
No one knows what this disease is like until they have some long-term, up close and personal time with it, and since we’ve been married, the reality of it has gradually sunken in. However, until recently, the reality was more the tedium of it and the concern about the extended forecast. The immediate dangers were the stuff of fables, myths and other people I knew from the tubez, as we jokingly call the internet around here.
Greatest American Hero
Then I had the glucagon-worthy hypo in October, which I could tell was unsettling to Jason. We’d been together for six years, and not once had I ever experienced such a low. I got close a couple of times, but never so bad that I couldn’t drink some juice and have some recollection of what had gone down. He had trouble digesting the reality that even though I try to do everything right, things still go terribly wrong. I had explained on several occasions how and when to use the glucagon. I’ve always taken the glucagon with us on vacation, I’ve made sure we have at least one here at home, and I’ve made sure to tell him where it is. It registered enough that when it came time to use it, he could, but it seemed like very incidental information to him as far as I could tell. Those days are over. After the October episode, for the first time he took initiative to ask me about the glucagon, reminding me to get a replacement kit. He was worried.
Immediately after the incident Sunday morning, as I was still shivering and trying to piece together what had occurred, I knew I needed to put my pump back on. Two glasses of juice, a glucagon injection and a dextrose IV were going to hit me hard. I knew his nerves were fried from having had less than two hours sleep and then dealing with me, so I tried to be gentle in convincing him that I needed to put it back on. It took some persuasion, another BG check to verify it was headed up, and a promise to turn my basal rate down for the first half hour before he reluctantly agreed so we could try salvaging at least a little more sleep. I honestly think he wanted me to just leave it off while we slept, but then of course, he would have had a completely different emergency on his hands.
Sunday, as I battled the persistent rebound high, he expressed concern several times that I would be too aggressive in bolusing that high down. Monday, I wasn’t feeling well, so I called out of work. His response? If I was going to take a nap, make sure I checked my BG first, check it often all day, and have a snack if it seemed too low. It wasn’t just what he said, but the way he said it. He was afraid I’d get too low without him being here to help, and it went unsaid, but I felt like he mentally punctuated his instructions with “because I don’t want to come home and find you dead.”
It’s hard to convince myself I’m not a burden when clearly my husband is feeling a heightened sense of responsibility for my life and a now vivid understanding of just how menacing and even dangerous this disease can potentially be. The joke he made in October about his cape billowing in the breeze as he saved me has persisted, giving us much needed opportunities to laugh at an otherwise unfunny event. Coincidentally, we were joking about it Saturday night when we were hanging out with our friends, just hours before the paramedics stood in our bedroom. We half laughed about how he jinxed himself by talking about it that evening, but then, with a slightly more somber tone, he said he’s ready to fold up the cape and stash it away. How quickly he realized what a burden wearing it is, and how sad I was knowing that I can never reassure him he won’t have to use it, and he’ll always need to keep it within arm’s reach.
Stories like this are what make me nervous about getting into a relationship with anyone. I haven’t spoken to the New Boy about many of the diabetes complications. For some strange reason we managed to already have the talk about pregnancy (don’t ask…) and he’s seen my pump and CGM gadgets in all their glory. But the worst that’s happen was a 77 mg/dl when we were making out and then another nagging low when we were at the Museum of Natural History, to which we decided to treat with a cupcake. It was almost fun! I do feel lucky that I am wearing my CGM while dating him because he’s already getting an idea of how volatile this disease is and how persistent it can be when my CGM beeps repeatedly.
I just keep reminding myself that there are plenty of relationships that have been able to weather much worse storms and that things like this rarely, if ever, happen. 15 years and not a single use of glucagon yet. Haven’t called the paramedics and my only experience with the hospital is as an out-patient once a quarter. Just keeping my fingers crossed now more than ever.
I often feel like a burden to Pete too – I tell him it’s unfair that he got stuck with a “dud” and “broken” wife. But I really don’t think they feel that way at all. I think they feel lucky to be able to be there and help us when we need it. That’s what love is all about – and I know we’d each do the same for them.
It’s hard to remember that though, when you are the one needing the help all the time.
Lee Ann
You know that part in the wedding ceremony where you say “in sickness and in health”? For those of us with diabetes the sickness has a much bigger presence.
Before we got engaged, my wife and I took a 3-day class at Joslin that was an in-depth course on diabetes (complications and all). I think she went into the marriage fully understanding the implications.
Two glucagons for Jason has rattled his world a lot, I’ll bet. He sounds like a great hubbie who’s understandably worried about you. I’ll bet this becomes another diabetes story over the years.
One suggestion: check out the super bolus. It’s a great way to reduce highs without too much insulin stacking (which I still do).
I can truly relate. Through the eight year’s with mine SO, we have had many scares and many frustrating times…I always feel like a burden. You put it so clearly…it is exactly how I feel. You are a beautiful writer!
Bernard, what is the super bolus?
Lee Ann, I am single, so I don’t have a whole lot of experience to go on. But Jason’s just worried about you. It did scare him. You aren’t a burden, but he loves you and doesn’t want to loose you. He’s just paranoid right now and wanting you to be extra careful.
I’m so sorry you are feeling this way. I wish I could give you a hug and cry some with you.
I’m glad you’re alright after a scary night, but reading this post I’m inclined to think it says more about your feelings than Jason’s. Maybe you need a serious heart-to-heart with him to find out what he’s thinking. It’s tough, we PWDs always try to minimize everything and solve our own problems; maybe he just needs some reassurance that you won’t break
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I am so in touch with these feelings. I think it is often very hard for many of us to think of “the future”, especially when we look at it from the angle of our loved ones and the help we will need from them.
Nikki,
The super bolus is a technique described by John Walsh, more info can be found here (http://www.diabetesnet.com/diabetes_technology/super_bolus.php). It is really useful in some situations. What it boils down to is borrowing from basal to increase the immediate bolus.