The longer I live with Type 1 Diabetes the more I realize that this is so much more than blood sugar, carbohydrates, insulin, test strips, and wearing slippers all the time, which by the way I still suck at and am currently waving bare toes in the air. It is more than staying up late trying to regulate blood sugar, miscalculating that last bolus- then spending the next 8 hours trying to fix your mistake, realizing that in exactly one day you are out of test strips and the next box is still 3 days away in the mail. It is way more than all that fun (sarcastic) medical stuff. It gets to leak into the rest of your life and afflict all of those who are and/or hope to be close to you. Aren’t we lucky?! I think that as time goes on the medical field puts more and more attention on the emotional impact that a diagnosis of diabetes (or lets be honest, any chronic disease) can have on a person. I know that Doc. Smile tells me nearly every time I have an appointment that she would like me to get health insurance so I can ‘talk’ to someone (i.e. have a meltdown on a stranger so they can tell me this is all normal and that I can do it 😛 ).
Trust me Doc, I would love to have insurance. Actually, until I “aged out” I had health insurance my entire life, good thing too because I used the hell out of it. Living without health insurance is hard enough but doing it with a chronic illness that has no cure, only treatment that basically functions as life support. Sure, it’s a pretty damn good ‘quality of life’ life support that it provides, but really that’s all it is. With out injections of insulin I would not survive, so the insulin supports my ability to continue living- i.e. life support. <- After writing this Emilie definition I figured that perhaps an actual definitions would prove my point more readily, or at least provide a stronger argument:
According to medterms.com, Life Support is defined as (I will only give the example that pertains to this argument):
1. A therapy or device designed to preserve someone’s life when an essential bodily system is not doing so. Life support may, for example, involve enteric feeding (by a tube), total parenteral nutrition , mechanical ventilation,a pacemaker,defibrillator, heart/lung machine, or dialysis.
I would say that a type 1 diabetic’s (and possibly a type 2, if it is deemed necessary) use of insulin would certainly fall under that definition. So, keeping that in mind perhaps it is easier for someone on the outside looking in to see what it is really like to live with type 1 diabetes. It is a daily reminder that there is a looming danger, one that never goes away- not even for a little while. There is no cure, and as much as we always tell ourselves and each other one could be right around the corner- it isn’t yet and that’s what we live with.
I know this all seems so dark and scary and must be wondering, “Why is she throwing her mortality out there like that?”. Don’t worry, I’m doing alright. 🙂 I just notice more and more the effects of my disease on Marshall these days. The financial strain is something that is sort of an obvious stress on the relationship, but beyond that there is so much more, both specific to our relationship and things I suspect would effect most couples like us.
Of course Marshall has no way of knowing inherently when my glucose is out of whack. So considering that often I don’t exhibit a lot of outward symptoms it can be hard to know when glucose is a factor. Now, strange personality outbursts are an obvious symptom but lets face it, there is no golden rule to follow with this stuff. Sometimes a pissed off girlfriend is a pissed girlfriend for a good reason, it’s not her fault that your man brain can’t understand. Other times however, your short tempered, pissed off girlfriend is experiencing a spike (or sometimes crash) in blood sugar levels. Either way, when you suggest she check her blood sugar she will get mad. Sorry… heat of the moment and what not. Of course then there is the opposite end of the spectrum when it a low blood sugar and the behavior is both totally unfounded too bizarre to actually categorize as mad, angry, mean, sad, etc etc. Sometimes it is too strange and confusing. So Marshall has to be willing to risk getting his head bitten off from the praying mantis he sleeps next too every night to prompt a glucose test, which he is. 🙂
There are also the other things that I think about even less but certainly need to consider more often is the stress and concern he has to live with everyday. I often reflect on the fear and anxiety of parents of children with diabetes. The go to bed in fear of their child not waking up, send them off to school and worry all day, and must hover to ensure their child’s safety while still trying not to smother their child or make them feel like an outsider. I get a lot of this perspective from articles and websites but my closest influences are the blogs I read. They are an excellent resource and often lead me (through their links or mention) to more information, programs and groups that I wasn’t aware of. One day I was talking to Marshall about an entry from one of my regular reads and said how I couldn’t imagine all the fear that goes along with having a child with type 1. I began listing off the different scenarios, sending them to bed, sending them to school, sports etc. He looked at me as if I were missing something. “What?”
“You realize, that’s what it’s like for me?”
What do you mean?”
“I mean I worry about all that stuff with you. We go to sleep and I worry something will happen. Or leaving you at home all day alone, I hate that. Then if I call and you don’t answer the phone, I get even more worried. It’s the same thing, I worry about all the different bad things that could happen.”
Honestly, I sit here living this everyday, hating that I have to count carbs and dose insulin and stick to a schedule etc etc but it’s hard to think about the things that Marshall thinks about all of that. The truth is, I try to recognize how supportive he is and how hard he works to provide for us but I think I forget to address the other parts of his role in this D-life. I mean, of course he worries about this stuff! Of course he also considers the worst possibilities while only trying to talk about the best. He is here, living this with me even more than anyone else. He is more involved in my day to day life than anyone else, knows more about my care and regimen than any doctor or friend that I have. He watches the physical and emotional struggle that I go through every day, why wouldn’t he feel and experience the same kinds of things? It is important not to forget that we aren’t going through this struggle alone, while all the emotions we feel might now be the same the ones who love us are too struggling.
I tell myself that I do a good job of appreciating Marshall but the truth is I am often missing what I think is the most important part. I know that I thank him for working hard and taking great care of me. Marshall is great about taking into consideration the stress and fear that I live with everyday and he will give me the benefit of the doubt and let me get away with things when he thinks that’s what I need (don’t worry he will hold me accountable too). I don’t always do as good a job at that as I should in relation to Marshall. He has told me more than once that I shouldn’t question his commitment to me or our relationship (that’s conditioned into me from years of terrible taste in men and a “rescue him” complex) because he has been here, with me through everything. He is right, he has never given me any reason to believe that he is going anywhere and in fact just the opposite. He is loyal and takes amazing care of me and never asks for anything in return. So guess who needs to start taking better care of her partner in fighting diabetes? This girl…
Hopefully I can call this lesson learned and if I can’t someone should certainly smack some sense into me…