I am awake, but not really. There is a gray fog wrapped about my head, twirling in my eyes. And my eyes are itching, watering a little. My tongue and my teeth are absent, though I have a vague idea they're still there in my mouth. Missing in action too, my ability to vocalize appropriately. I test my speech and manage a breath and then "gug gug."
I see the ceiling above my head, white with the one little crack, or is it a crack? Crack? Where did that word come from? The ceiling sure looks bright. I like bright. Bride? In white. Like the ceiling. Where am I?
"Home." I think, and I might slur it aloud. "Machine."
I am wet, hot. It is steaming in here, why doesn’t someone turn the heat down? Well, I could turn the heat down, but I’m not sure where it is right now. The fire. I don’t have anything to put it out with anyway, now do I? No fire. It’s bright, the ceiling.
My head hurts a little, I might be dizzy or maybe I'm just still tired. "Machine. Need to test." I hear myself say, like I'm outside of me giving orders. I use all of my energy to roll over and grab at my test kit from the floor by the bed. I drop it. And try again. And drop it.
"Where is my brain, where are my hands?" I say again, as if coaching myself.
I try once more and this time I have the kit. I unzipper the bag, and the contents spill forth into my lap.
My teeth and tongue are still lost in the abyss of what I have finally recognized is a low bloodsugar. "Juice." Out loud again. "Get juice." I reach to the floor again, juice box in hand on the first try, I struggle with the straw. "Drink." And I do, greedily, eight or nine swallows from the box.
As the juice moves down my throat, I start to feel less like a car out of gas. Less empty. Less sputtery and distant. I am coming back to myself. But it's slow and there is something irrational in me thinking "Who will help me now? When I can't say what I need to do?"
I wait. Time is weird in this room right now, not slow or fast. Just weird. And I'm not sure how long I wait. The numbers on the clock, I see them shining, scarlet dots forming lines and twirls, but they're still a bit senseless.
I pick up the contents of the test kit from around my legs. My hands in slightly better working order, I draw blood and put it in the machine. I count, with my voice coming mostly FROM me now, not to me, " 5-4-3-2-1"
And I say "48."
Another juice box from the store by the bed. Big swallows. And I look and make sense of the bright red numbers. 7:22.
I wait. Then 7:34. 7 equals 3 and 4. Giggle. And there is no crack in the ceiling above me now. There are tiny spots of fog still near my face, but it's not all suffocating now. Two more big swallows.
7:43. 7 equals 4 and 3. This time the addition produces no giggle. I test again.
And I say "81"
Better. I am just about fully back in the world. I am cold. My now chattering teeth and my tongue are absolutely in my mouth, behind my lips. My speech is clear, the "81" I just spoke sounding like a number and not two random words said with too many added consonants. I say,"shower time." Just to be sure my voice is coming from inside of me.
Gather my things, my clothes, go to the bathroom, and getready for my day on still wobbly legs. I am exhausted, have the stubborn remnants of that headache and my sense of time is still not completely right.
The exhaustion and headache will stay, like a bad hangover, for the next several hours – maybe even the whole day. I’ll beat myself up, probably, too. Wondering how I could have prevented the onset, treated more quickly, gotten well sooner. And I will loathe that my tight control and my A1Cs in the high 5s and low 6s result in these horrible incidents more often than I’d like.
If you know what a serious low is like, this is all too familiar. And if you were wondering, well, that's a pretty accurate description of one I had this week. I know that everyone’s experiences are different, the manifestations of insulin reactions many and varied.
When I try to write about them, I don’t feel like I ever get it quite right. It’s hard to describe being in your body as it falters, seriously, but not feeling entirely inside of yourself. As if somehow the rational, logical part of yourself has been removed but you can still see what’s in front of you. Your perceptions altered and your ability to understand the world stolen, so that you don’t know that what you’re seeing and feeling isn’t reality, but is at the same time.
I wonder how experiences like this couldn’t have long-term consequences that I’m not aware of. I wonder if my brain has lost key pieces, experiences, moments and I wonder what those losses mean in terms of my own self, identity, and being.
Scary doesn't quite cut it. Other-wordly, maybe? Completely unnatural? I wish there were a way that a normal person could experience it just one, without the physical havoc that it can and sometimes does reek. That kind of experience would certainly change the mind of anyone who thinks diabetes is easy to manage, easy to handle.
Nicole,
Oh how I can relate to this! You do a very good job of describing a serious low and I agree, there's no way of telling the WHOLE story. I am now 58 and was diagnosed when 4. Yeah, things were a lot different then! I've had many differing serious lows, some of which were nearly fatal. And, of course, we always try to explain what went wrong, but there is toooo much to consider--like, stress (that sometimes doesn't seem to be there), not knowing exactly what was in the foods you ate, the intensity of exercise, no exercise, illness, and on and on. I've given up trying to guess. I do the best I can and that's all I can do.
Love your post. You seem to be the most like myself (except I'm male and a lot older). You take care of yourself and just keep doing the best you can. --Richard
Hi, Richard - Thank you for responding. WoW!!!! 54 years, you are the kind of hero I look up to - that's a long time to live with diabetes and during some lean years - technology wise. I'm so happy to write things to which people can relate. I think we'll never be perfect - any of us - all we have, all we'll ever have - is the ability to do the best we can with the tools we have. That *has* to be enough, no matter how inadequate it sometimes feels. Thank you so much for writing and sharing your experience! All My Best, Nicole
Nicole,
The closest I can get to experience a low is seeing, hearing and helping. I see my daughter turn pale, hear her voice as if she was 7 years old again (she has this thing that when she's low her voice gets soft and like a child, when she's high it gets tight and sharp) and help her get juice in the middle of the night. I have lost count of how many times I have been woken up by her calling "mamma, I'm low, please help..." Once her numbers come back up she usually feels bad and tells me that she is sorry for disrupting my sleep, I always tell her no problem, it's part of my job as her mom.
Hi, Catherine - I can't imagine how hard it must be a mom, to watch all of this happen from the outside - to try to help when the person you're helping seems so disconnected. It must be heartwrenching, particularly when it's your child going through it. I really believe quality parents of kids with physical and mental challenges are among our world's greatest treasures. You do one of the toughest jobs, for free and often with a smile and a "no big deal - you're my kid!" My warmest to you and your daughter, Nicole
This is so true. I start talking to myself as if I were my mom, trying to get myself to wake up and test. "C'mon kid, go get some juice" is the phrase I'm repeating even as I'm coming out of the fog. Oddly, as I'm eating/drinking I need to read something to keep myself distracted & avoid overtreating. More words. Hmmm...
Great post!
That strangeness and "weird time" is very familiar... as is the lingering exhaustion.
But I feel so lucky that, so far, I haven't had any lows that made me extremely confused. I once had a 40ish low that had me dizzy, my head just SWIMMING, out of breath, and very exasperated with everything... But my brain worked enough that I immediately knew what it meant and what I needed to do. The idea that I could get low enough that treatment would be difficult (or maybe not even thought of!) scares the crap out of me!
Nicole,
I am so glad to read someone else has the same out of body experiences with lows. Just today I was reading to my 4 year old and I say to my husband " is it me or is this book hard to read?"..... I decide to test because then it was even difficult to explain to my daughter why I needed daddy to finish the book. My meter says 47. No wonder my tongue was twisted.
I unfortunately can get pretty low sometimes and function it seems normally. I exercised yesterday got In the car to go home decided to check and 39.....oops!
Anyway, love the post and I am here with ya. I am 38 And have been living with Da-betes..since age 9.
Funny, this post. Here's an e-mail I sent to my sister (in law - we call each other "sizl") just yesterday:
Today i had the worst hypoglycemia I've ever had. I was all alone in my office since it was Saturday and I got super anxious (I may have mentioned that this is an odd symptom I seem to have during my "episodes"). So I ate a bunch of sugar but was still all scared. (Of what?, you ask. Excellent question. It is during times like these that I fully understand generalized anxiety disorder. There is no object for my anxiety. I am just anxious. Jarred to the soul, crawl under a desk, shaking-in-my-boots-anxious. However, for some bizarre reason, sitting on the floor helps. I haven't actually tried hiding under the desk.)
So I called my husband just so somebody could be on the other end of the phone, just in case (Just in case what?, you ask. In case the end of the world, according to my thoughts at the time). Then I cried. A whole lot. Why? Because I was super scared and sad...of nothing in particular.
Whew, and then it was over. Fifteen minutes of an alternate reality in which I am a totally different person who entirely understands what insanity is like because I can see how the world really is but have absolutely no way to react to it accordingly.
The take home lesson from this email is not for you to be all sad and have a pity party for me (although that wouldn't be so bad since often "pity" is really compassion, and I like a good party ;-)...but because I thought of calling you. I called my husband instead because I knew he was home, so it wouldn't be much of an interruption. But I also knew that I could call my sister and she would be really cool about it. And not freak out or anything. But just sit on the other end of the phone so I didn't have to be all alone with my crazy. And let me know that the world wasn't going to end, even though that's how I feel.
And I was just really glad that I have a sister. A really awesome one.
That's what I wanted to say.
Thanks for your post.
Araby - It is very much like being a mother or a coach, or someone in authority! Someone who our addled brain perceives as being "in control."
Lizzi - I'm so glad you catch them while you're still with it. After 29 years, I'm very much hypoglycemic unaware. And I hate it. Often, but not always, I'm beyond the pale before I know it.
Hwickstrom - I have to ALWAYS test before driving - not matter how good I feel. There's just too much of a chance I'll be low and not know it. I hate that! I think many of us share this scary phenomenon. I love writing here at dlife, because it's important to know we're not alone in this bizarre thing and others.
meagher - I have a sister in law that I call my SISTER and she is also AWESOME!!! :) The sitting on the floor thing - I do that sometimes too. Too funny. And you've put it well in your email - it's like you know what reality is, but you can't accept it or function within it...
Thank you so much for this post Nicole! I've had this happen more often than I care to mention. I try to have the same control you do and at age 29 feel like a newbie with only 14 years under my belt. Last week I woke up to a 29 greeting me on the screen, I put a test strip in my mouth instead of the machine...I was ALMOST on the right track right! It's amazing how our bodies still act out the things we need them too even when we can't make sense of what is happening. Luckily that was the first time I've hit that number during the night but I sometimes wonder how many times I lay there, half dazed, before I am conscious enough to wake up. We need to ALL congratulate ourselves on how well we do and also be able to laugh at how ridiculous it all is. Thanks for writing this!
Hi, Ninners - It is scary. I have found my test kit in the fridge, put a test strip "into" my pump, and done various other "almosts" while low. I'm grateful that I've survived every time. And that you've made it through to! Thanks for reading - and commenting.
My daughter just had her first LOW, LOW last week...said she could not drink or grab juice to drink...strange exp. for her 1st time (11 years old). She was in nurses office at school thank goodness (God)!! Thanks for sharing your perspective. As her mom, I need to know how she felt as she still can't explain completely.
She and I have now discussed more of a game plan (if there can be one)...for night, etc. The juice is now open w/ a straw in it ready to go. Thanks again Nicole, Kim
PS, she was in 50's, 49, 40, then 30 in a matter of MINUTES... couldn't get her up! Finally came up..then a high of course! But, she did come up. Nurse had the glucagon out and ready!
I'm glad that she experienced so she knows what is is like (not glad of course, but thankful she is aware of the feeling now)....I'm not "D" so does that make sense?? I just want her to know what to expect. As she said, she couldn't even hold box, open it, could barely sip :(...she could not use her hands at all. SO SCARY. Thanks again.
Hi Kim... I sometimes need help inserting the straw into a juicebox... After having a seizure when I was 16, and being unable to control my hands, for awhile afterwards I would make fists when low in order to maintain control of my muscles. Of course, not entirely applicable as this was your daughter's first low. But still... I completely lose control of my limbs sometimes (rare) when very severely low.
Hi, Kim - You have just underscored perfectly one of the main reasons I write here at dlife - to help parents like you have some perspective about what being diabetic feels like, what it's like to be low, what I worry about and think about, etc. I wish my mother had had a window like this when I was younger. I am so pleased that I could help you to understand a little better. I hope you'll come back and read again - and I wish your daughter so much happiness! With an excellent mom on her side, I know she'll do well. Best, Nicole
Those lows that come fast like that are really, really SCARY! The thing is, sometimes when you drop quick like that, there's no catching it - you can get past the pale without understanding what's happening. That's scariest, I think. I'm glad she had help there - and I am very glad you've got plans to help in the future! :)
Awww, the memories! I have 21 years of low experiences and they can all be so different, and sometimes so similar. But they have changed over the years. From being "easy" and recognizable and "sure, I'll get a juice"... to becoming scary and unsure and wondering how you can ever gather the courage to walk the 25 feet to the fridge for a juice... to the "I know I need a juice but just really don't want one right now"... to the "I know something's not right but really I'm just tired, I'm fine"... My goodness, it's always something different for me!
My most amusing memory (I have to find humor in it, after the fact) is calling my mom early one morning to explain my frustration over what had just happened... I really wanted a cup of coffee, it was all I wanted, and I tried pouring myself a cup but instead poured coffee all over the place. I tried again and ended up with a full cup of half and half, but no coffee. Next attempt I broke the coffee cup, it shattered onto the flour. I was very upset by this, and recognized my low finally! But instead of taking juice, I called my mom to complain about the coffee. After listening to me, she kindly asked if I might be low. I responded yes, but in response to her asking if I didn't need juice? That was the problem, didn't she understand I only wanted coffee! Anyway, I did eventually grab a juice, and I'm sure I checked my BS to confirm, but I still remember my stubborness of wanting only that cup of coffee that I was unable to pour while low.
Hi everyone,
I conduct research on diabetes management. The data often helps emerging technologies gain greater recognition from the industry. In an effort to provide honest and impactful research, I wanted to understand how those who deal with diabetes everyday feel about different technologies. To that end, if you are dealing with insulin dependent diabetes I was hoping you would be so kind as to fill out a quick questionnaire.
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