Fear, Shame and Understanding

After such a depressing post yesterday I had hoped that I would come up with a light hearted topic for today, something both fun and informative, while the day is still young I have to admit that I am at a loss.  However, I have something I would like to write about I just regret that it isn’t of the mood I was wanting to convey, perhaps later today I’ll come up with something more fun!

When the hurricane rolled through New Hampshire it wasn’t as bad as were led to believe it might be (I know it was TERRIBLE in a lot of places, but here we lost power for a day or maybe a few in some places and had some branches to clean up, that was pretty much it).  Marshall and I were still living in our own place at that point out on the Maine border, it is a secluded place, off the beaten path, and there is not really any cell phone service out there (unless, of course, if the clouds are properly placed in the sky and the wind is blowing in the right direction- generally you also have to stand on one leg with your arms in the air) and with the power being out (and probably phone lines down) people with a land line didn’t have anyway to use it.  After the storm had blown through we found out that the lady who lived down the road from us had suffered a seizure and had died before help was able to arrive or possibly even be notified.

I am a compassionate person and extremely empathetic (to a fault, I can’t watch or read just about anything without having some kind of emotional response) so upon hearing this news I cried, of course.  Not hysterically (yet) but I cried, feeling sorry for her family for having to have watched and sorry for the guilt they must feel for not being able to help her.  Yesterday, after having a hard day (not totally sure why, stress catching up with me I suppose) I saw a video linked through some diabetes page I was reading of a girl from the “Big Brother” series (remember that?) having a hypoglycemic “attack” and the following events of her being treated and taken away by EMTs.  Marshall found me upstairs teary eyed (again) and upon asking me what was wrong discovered that I had some fear about things like this happening to me.

I expressed the terror that I felt, “what if that happens to me when I am home alone?”

“But you have Judah.” Now normally this would have brought me right back down to earth, but yesterday as I said was a very hard day…

“I know, but he can’t ALWAYS be right, what if he misses one?  You know he doesn’t ALWAYS alert.”  Judah is VERY good at his job and in all honestly alerts more than I probably give him credit for, he does, sometimes, cease to alert when Marshall is home.  (It used to happen a lot more at the beginning of his new “job” as he seemed to think that when Marshall was around someone else was doing that job for him, now however he is much more consistent and seems to have realized no matter how much Marshall pays attention to me his nose just doesn’t compare to that of my four-legged pancreas!)

“I don’t think you need to worry about that, he is very attentive to you, and you know that the farther out of wack you get the more insistent he gets, he will tell you.”

“I guess you are right, I can’t worry about it too much or I will make myself crazy…”

“We DO need to get a glucagon kit though… How much is that?”

“$200, and it expires every year.”

“Geez…”

“I have to fill out the medication bridge paperwork and the doctor thinks they will send me one… I hope.”

“Me too.”

Then seeing that I have calmed back down (sort of, I can be a little high-strung when I get caught up like this) in his infinite wisdom Marshall decided to tell me that the neighbor who had died during the storm, was diabetic and the seizure was the result of low blood sugar.  (At times like this I often use my favorite phrase, “Man Brain”.  This is when a man sees a perfectly logical and/or appropriate solution or statement that can only be perceived as logical by another, well, Man Brain, sorry fellas)  Well didn’t that just send me over the edge, the tears, the feelings of terror the whole nine.  And Marshall’s response (or recovery hehe) was to point out that in a situation like that, the people who I live with know what to do.  He told me that I had done a really good job of educating myself and spreading that to the people around me.  He’s right, I made it my mission to learn everything I could about type 1 diabetes (and there is still so much to learn) and have taken all the information I could get, reading books, magazines, articles, websites, blogs, studies, etc.  He managed to get me settled back down and we enjoyed the rest of our evening just fine.

Today however I’ve been thinking about all that, have I really done a good job educating others on what to do if something does go wrong?  Have I given them all the tools to be able to jump into action at a moments notice.  Marshall probably would have no problem getting right on it, he has tested my sugar before, given me insulin injections and battled with me through lows that left me disoriented and stubborn as all hell.  Then, we have my mother, who bless her heart wants to know everything she can but still gets high and lows confused and more than once has reminded me to give myself insulin because I just tested low (wrong).  Now I don’t expect her to understand all of this just because, Marshall has been living with me since before my diagnosis and has been with me as I learned everything and rattled information off to him as I learned it.  My mother is just now living with me and seeing what this means for my daily life, she still has to learn about low means more food not more insulin, high means more insulin and possibly a ketone check (which I admit along with glucagon I don’t have a ketone test kit).  I also live with my dad and I have to be totally honest, we have never had a conversation about any of it, other than brief discussion on ADA and Service Dogs and a passing chat about dogs invading my space while I inject (I often say, “Can someone play defense for me here?” because we live with 4 dogs and they all seem totally intrigued by the smell of insulin).  Do I think he would leap into action if I went down, absolutely!  Do I think anyone who knows me would, yes, absolutely.

Yet, do they really know what to do?  Probably not.  My group of friends includes a guy with type 1 (though he does not care for it as he should, not even close, he also has moved away now) and I hear stories all the time of him having extreme lows and people thinking he was drunk (not unheard of for him) until someone finally thinks, “Hmmm this does seem a bit off…” then someone would test him and holy shit, he’s SO low!  I also know that more than once (fairly regularly I suspect) someone would poor maple syrup down his throat and then leave him to come back and think nothing more of it.  That is terrifying to me.  Never mind that the more I think about it the more I realize, I don’t really provide them with the tools to do anything about it either.  I don’t usually carry glucotabs (which only help if I can feed them to myself anyway) and never have glocugel or something someone could administer if I were unresponsive.  Then part of me thinks that it is totally unfair to expect these people, who don’t have this problem, to be able to leap into action at a moments notice… I mean is it fair to tell these people, “If you see this or that then you are responsible for saving my life”?  It seems like a lot of pressure to me… I mean who wants to hang out with someone they have to “keep an eye on”?

So many questions and really I am not sure that there is a good way to answer them.  I guess in a crisis you really see what people are made of, but who wants to bank on that?  Then again there are plenty of people out there I am sure who think I am totally out of my mind to trust a dog with my life, it is a little different I trust his reactions to my disease more than a thinking, reasoning person!  There have been many arguments between Marshall and I about him not understanding the urgency of a low, or being upset with me for being “disconnected” when he is trying to get me to deal with (or test for) a low.  I am coming to understand that it’s a learning curve for everyone and to expect people who don’t have this disease to process it the same way and the same speed as me is unreasonable.

I think that at this point it is important for me to be more prepared for issues (i.e. have glucose gel and/or glucagon ready), and to make sure that if nothing else people know what to dump down my throat and to call for help, period.  I know that it is my responsibility to prepare those close to me for something to happen, but who wants to be the one to look at their friends and say, “Hey is something scary and unexpected happens you have to save my life and this is how”?  I am beginning to understand more and more why people are so secretive with their diabetes.  I took the attitude of, it’s mine and I’ll own it, when I got diagnosed but as time passes I realize more and more that it is isolating in more ways than I expected.  I always say there are two ways to live with diabetes, you can be ashamed and secretive or you can own it and educate.  At the beginning I had no shame, I tested whenever and where ever I needed to, I injected discretely but not secretively where I was when I ate (I think spreading my stuff out in a public bathroom is gross…).  Now however, I find myself giving my insulin late so I can wait until we are in the car or home so I don’t have to do it in front of people, I try to give insulin before even entering a restaurant (not a great plan, what if food is delayed?!), and I will even ignore Judah’s alerts until I am in a more private place (NOT good for me or Judah’s morale).  I am not sure when the shame started being associated with my diabetes, but I don’t like it.  I think I need to get back to the place I was at when I was not ashamed and even proud of my level of care.

So my goal for now is to educate those closest to me on what to do in an emergency, what to look for to see problems and how to help mitigate these problems.  I will also try to step back out into the light with my diabetes, I’m not doing anything wrong by testing and “dosing” when and where I need to, I am discreet and polite, I don’t flash needles about or declare my readings to anyone who can hear and I shouldn’t be ashamed of taking care of myself.  Most of all I will stop taking away from the amazing thing that Judah does for me, there are times when the last thing I want to do is get excited about a high glucose alert but it isn’t for me it’s for Judah and that’s really what matters.  There aren’t a lot of ways to show him how special he is so the least I can do is give credit when and where it is due!

No more fear (easier said than done) and no more shame, forward we march, one foot in front of the other until we reach the summit.

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