What lies beyond tired

Just past tired and around the bend from exhausted lies a magical place called delirious and I am writing to you from there.

Monday night began my journey to this place where my head floats, my thoughts make less sense and no one is on time for school. Arden played in a softball game Monday evening, then she ate, we bolused and around midnight her BG unexpectedly fell. It wasn’t one of those crazy double arrow down (for you CGM users) and still a long time to go until the bolus is gone declines. It was the slow fall, so slow that the CGM can’t even report an arrow, you just watch the number slowly drop. I was able to stop the fall at 60 by turning off her basal but with no food it was going to hang there until around 3:30 am. So I sat up in bed playing games on my iPad, listening to music and trying not to wake Kelly. Arden BG began to climb and I went to sleep at about 3:15.

Tuesday night added insult to that injury as Arden began to rise unexpectedly after she went to bed and I didn’t have the courage to bolus as much as I should have. I ended up chipping at the BG over the next few hours trying to get her down. That was a mistake because at 1 am I finally had to give a large bolus and then I didn’t want to sleep until that insulin had run it’s course - I looked at the clock as my eyes finally closed, it was 4:40 am.

Last night hunger was my fickle foe. Arden was hungry at bedtime and I let her eat. We had just changed her CGM sensor so I didn’t have an arrow to tell me what was happening. She had a small snack and I waited 15 minutes to bolus for the food incase she was dropping (hunger for her at that time of night usually indicates an upcoming fall). As my bad luck would have it there was no drop... she was just hungry and so I had to bolus late at night again but I did get to bed at a respectable 2:30 am, a bedtime that wouldn’t have been bad if the prior two nights weren’t so tough.

All of this has left me very tired. I have what I think is called brain fog, my neck is also stiff and my stomach a bit out of sorts - I haven’t had the energy to do half of the things that I had planned on doing this week and I wasn’t able to get Arden to school on time the other day. Why am I telling you this, am I complaining or looking for a virtual pat on the back? No, I’m telling you because of a tweet that I read the other morning.

Every night I put Arden to bed I think the same thing. It’s not a particularly uplifting thought and it isn’t a conscious one but it’s come into my mind every night since she was diagnosed. I tuck her in, sometimes we read a book and always before I leave the room I give her one last kiss good night - then I think, “please don’t die”.

I was exhausted the other morning until I read that tweet and then I pulled myself right together. “This is just a few days of being tired”, I thought. It’s not the end of my world and it certainly isn’t equivalent to my daughter not being here anymore. I want to say that I’m in no way indicating that the parents of typeI children that have passed away in their sleep did anything neglectful. There are nights when everything looks perfect and the situation could and has changed the moment I’ve gone to sleep. I’m not in control of any of this and I know it but I am going to be as vigilante as my body will allow me. When I can’t do it anymore I always ask my wife Kelly if she can take a night and she jumps right in even though she works such long and stressful hours at her job.

Anyway, I imagine that I can’t be the only one who has this thought at bed time and I wanted you to know that you’re not alone. That I am standing in a hallway just like you. Wondering if I’ve handle the day properly, if the insulin decisions that I made are going to come back to bite me at 2 am. The truth is we are all standing in that hall, at a bed side or sitting on the sofa pretending to watch TV while we go over the day in our minds. I just thought that if you knew how exhausted I was right now and that I wasn’t giving in to it, well... I thought that maybe you could feed off of that if you were having a similar couple of days.

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The following are archived comments from this post. You can post new comments below.

Stacey D.

I hate with all my being when I hear those stories.  It's just a reminder that as much as we do right, it's sometimes something we can't control.  And I'll be blunt ... that is scary sh*t.  Just last night the Dexcom woke me close to midnight with a low alarm.  BG check confirmed I was 52.  I drank my juice box pretty quickly and laid there as I was not feeling well.  I wanted to wait until the BG was on it's way up to go back to sleep because of how I felt but my sleepiness took over.  I woke up this morning very thankful that my BG indeed do just that.  Went up.  I think we all have that fear.  It would be hard not to.  Arden is very lucky to have parents like you + Kelly and so many other D parents out there.

Thursday, May 5, 2011 - 04:48 PM

Penny

Thank you for this. I appreciate the same-ness of which you speak, cause I find myself in the hall, with iPad in lap, fighting to stay awake through a low that won't come up or a high that won't budge. And I think of other parents, in their hallways, kneeling beside beds, muttering 'please don't die' under their breath and it gives me a sense that others understand and that I am not alone. So, thank you for that. And know that you, also, are not alone.

Thursday, May 5, 2011 - 07:08 PM

Scott

Thank you both!

Thursday, May 5, 2011 - 07:39 PM

Lorraine

Beyond tired. And the pain of it all is compounded in the middle of the night. The light of day always helps me, but even so, sleep deprivation takes its toll.

As Penny said, I feel your sameness too. It has improved significantly having DexCom though. I don't find myself staying awake quite as much as just waking up. Maybe I'm kidding myself??

Saturday, May 7, 2011 - 09:29 AM

Ali

Yes, I know just how you feel.  My son's bg has been so up and down through the night for so long now that I live in a constant state of tiredness.  We are currently getting up now at 4am to give a shot of novorapid as his bloods tend to go up during the early hours.  Thankfully we will be getting the Omnipod next week so I'm hoping to tweak background insulin to avoid the fluctuations.

If my kids aren't awake by 8am I often panic that something deadful has happened.   So I suppose this makes me more aggressive with their management.

My heart goes out to that family.  They must have so many questions which I suspect they will never get answers too.

Saturday, May 7, 2011 - 10:52 AM

How does that feel

This morning I saw a tweet from @StaceyDivone that got me to the keyboard...

I’ve always wondered how high or low BGs make Arden feel in the moment, later, the next day and so on.  The problem is, Arden has been diabetic since she was two and I think that the feelings that I see PWD experiencing must just be ‘normal’ to her.

Any parent could tell you that one of the main goals of parenting is the overall comfort of your child.  I remember when my son was a baby, the first time that he got a cold all I could think was, “does he feel the way I do when I’m sick? - of course he must...” I’d imagine the pressure in my head, the general feeling of being exhausted, light-headed - the only thing that comforted me was the idea that he wouldn’t remember and that of course that the feeling would go away - not be a constant.

It’s not the same for Arden, she is going to experience highs and lows throughout her life. On one hand maybe it’s good that she’ll think of these moments as ‘normal’ but I’m more focused now on understanding how she is feeling when she is low, going low, high, going high. Does it effect the next day, her energy level, what? I don’t know and Arden isn’t able to discern enough to tell me in the detail that I would like. That is, she knows if she doesn’t feel well and she definitely knows and verbalizes how she feels in the moment but I want to know if a rough morning is because of an overnight high or low. Could an uncharacteristic outburst be due to a recent or impending event. Again, I know that her ability to reason and control her temper is effected by a low and that she feels nausea when she’s high but I’d really like to hear in detail from an adult about how diabetes makes a person feel so that I could be even more empathetic to Arden in those moments.

If you have time please leave a comment and share your experiences. This would be great information for many parents of T1 kids to have and understand. Thank you!

Oh and if you aren’t following @StaceyDivone or me @ArdensDay on Twitter... please do!\

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The following are archived comments from this post. You can post new comments below.

Stacey D.

Of course I'll comment since you were great enough to mention me :)

I have to say that as I'm getting older (and so is my diabetes) my physical feelings related to blood sugar readings vary.  By that I mean that I don't always feel the same from similar situations.  I have lows sometimes that knock me out for hours after.  I have lows that I don't feel at all.  I have lows that make me nauseous but nothing else.  I have lows that give me the "classic" symptoms of shaking, sweating, brain fog.  
As for highs, I seem to feel them a lot earlier than I used to when my BG ran higher.  My most common high symptom is tiredness.  If I'm 230+ I sometimes I feel like it's a huge struggle to keep my eyes open.  But not always thirsty or having to pee a lot.  I can also get nauseous when I'm high.  With the highs though, it depends on how long I'm running high I think that will determine how long I feel crappy.  Like last night I ran close to 300 for about 4-5 hours unfortunately.  I'm still feeling it a little bit now and it's noon!  
I never have energy and am always tired and constantly wonder if it's diabetes related.  Sometimes my twin sister complains about the same thing so I think maybe not.  But who knows.  I also don't remember what it's like to "feel" without having diabetes so I'd be curious to hear what PWD who were diagnosed later in life have to say.  
I think it's wonderful that you want to try and know what she's feeling!  Shows you as a care giver putting your whole heart into it :)

Friday, April 15, 2011 - 12:14 PM

Cara

I'm with Stacey on this one. They vary. Sometimes a 60 will kick my tail and the low feeling will linger for hours. Other times I'll be functional with a 35. Sometimes highs make me hungry, which sucks. And they can make me really tired. Nausea sometimes comes with the highs, but doesn't happen often for me unless I'm REALLY high; like in the upper 300s. Sometimes I feel panicky with a bad low. Usually it's when they hit hard & fast and I'm having all all the classic symptoms of shaking, sweating, trouble consentrating, etc. 
I know my answers don't really give you anything solid to go on, but j just like all the other aspects of diabetes, it can be really random.

Saturday, April 16, 2011 - 08:54 AM

Amy R

I was diagnosed when I was 8, so I don't remember anything different.  I do know what it feels like to have my blood sugar in range most of the time...I don't think I can qualify how I feel as "normal" but more as "that's just how it goes!"  
I can echo what has been said so far--sometimes there is is no rhyme or reason to how I feel.  I can feel just fine, maybe a little thirsty and sleepy, at 400 but have a 320 that kicks my butt.  With a butt-kicking high I'm nauseated, fuzzy mouthed (kind of like I haven't brushed my teeth in days), tired, feel like I'm moving in slow motion.  The worst for me is when I'm high and my heart races.  For some reason I just can't handle that. Over the years, my symptoms of lows & highs have changed.  I've run the gamut on those over 22 years!  

Usually I feel fuzzy and out of sync for a few hours after higher high but with lows I usually bounce back unless it's a day of low after low after low...  The worst for me are the days of low-high-low-high because I just feel worn out from not getting a break (physically & mentally).

Saturday, April 16, 2011 - 09:57 AM

Ali

I've got 2 children with type 1 aged 6 & 8 and they both say that they feel that their tummies are shaky when they are low. My daughter who is 8 also says she can feel panicky when low.  Although they don't very often run high, they can mistake high bgs for low ones.

My husband who also has type 1 for 25 years has all the symptoms as per the other comments and again a low can feel different each time.  He also says at times he can feel quite emotional when low.

Saturday, April 16, 2011 - 10:26 AM

Scott

These comments are fantastic... Just what I was hoping for, please keep them coming. I think I'll combine them into their own post when it's done. Great info for parents within! Thank you all!

Sunday, April 17, 2011 - 12:03 AM

Sherry

I am so glad you posed the question that I've pondered since Jenna was diagnosed three years ago at age two.  This subject is one I've been planning to blog about too in recent days.  I desperately want to know how Jenna feels at any given moment.  Sometimes her behavior can be pretty intense and it begs the question - why? I want to understand. I too would like to thank everyone who has responded and all who will respond.  Your input is so very appreciated by us D-parents who wish like hell we could just make it all better but will settle for better insight.

Sunday, April 17, 2011 - 12:31 AM

Jess

it's always interesting to see how other people feel because it varies from person to person.  I have a really hard time describing how I feel when I'm low.  If I'm not too low, it's just kinda a shaky feeling.  And I definitely get low brain--foggy, can't think, can't react.  If I get below 60, then I get all sweaty and stuff.  It takes me a little while to recover from one of those.

The biggest thing when I'm high is my temper.  I have no patience and am prone to snap at people easily (sorry everyone).  I also get thirsty and sometimes ravenously hungry.  And just an overall blah or gross feeling. 

So, moral of the story, stay away from me when I'm high! ;)

Sunday, April 17, 2011 - 12:32 AM

everydayupsanddowns

I find symptoms vary on a case-by-case basis, they don't necessarily come in any set order (though by the time I'm sweating and my eyes are having trouble seeing straight I know I'm in trouble).

Most of my regular 'low level' ones have already been mentioned. 'Feeling a bit hungry' is particularly annoying  - it's not like that doesn't just happen anyway. And correcting for what you thought was a low-level hypo only to test later and discover that you just actually happened to 'feel a bit hungry' and have sent yourself high is a real kicker. 

Speed of drop seems to have a lot to do with warning onset for me. If I gradually fall from 75 to 65 over 4 or 5 hours it's much harder to spot than if the same drop heppens over 30 minutes.

The only times I've felt a hypo hangover were following overnight/early morning hypos where I'd got nastily low and needed my wife to help out. That hasn't happened for a good while now though, thank goodness.

I'm one of those who rarely if ever feels a high at all. I can test wondering how I'm doing and suddenly discover I'm 270+. The most I ever get for a short term high is a slight feeling of indigestion. If I stay up there for a day or two I'll get blurry vision and increased thirst, but mostly my highs come as a bit of a shock requiring me to work back through the sequence of events to try and work out what I've done wrong/what happened.

As others have said there's also everyone's favourite the symptom-switcheroo where you feel a bit one thing (in my case perhaps a bit of indigestion) only to test and find you are completely at the opposite end of the scale.

Then of course there's the 'predictive-hypo'. Feeling some low level hypo symptoms at 90-something after a meal, and they just carry on hanging around unchanged (with you having to ignore the 'feeling a bit hungry') until you finally test and discover you've dipped below 70. 

Good luck with your quest to understand how this feels. And good luck too with trying to keep the highs and hypos from happening at all (the fewer you have the better you feel 'em). Sometimes I think parents/partners of PWDs have the hardest time of all.

Mike

Sunday, April 17, 2011 - 06:51 AM

Arden and OmniPod in the News

Arden was featured in this news story about the OmniPod insulin pump back in the summer of 2010. It resurfaced the other day in our home town so I’m posting it again. 

The story was reported from the same studio that the @JDRFEasternPA used to make a walk commercial that Arden was in last October.

I am getting better at not crying

Last night Arden’s OmniPod and DexCom changes coincided with shower time. I thought that it would be nice for her to be device free for a little while so I bolused to make up for an hour’s worth of basal and removed the pod. Then I removed the CGM sensor (it was only working sporadically at this point anyway - on day 10), used the magic Uni-Solve to de-stickystuff Arden and she was off to the shower.

I had both kids going in different bathrooms so I was wandering back and forth between them, you know to keep things moving, “how’s it going in there?, wash your hair yet?”. Sometimes I think that if I didn’t do that the showers would last an entire day. Anyway, at one point when I went back to Arden this happened...

It’s important to the story that you know that the shower Arden was using is an open shower, thusly I can see her when I walk into the room. Big shower, little tiny girl - she looks adorable in there, all grown up and at the same time just a baby. So, I come back into he room and she says, “Daddy look!”. She turns to show me no CGM sensor, then spins to show me that she isn’t wearing an OmniPod and says, “No sensor, no pod, I look..........”

In that split second I thought to myself, “don’t say normal, please don’t say normal”

“I look......... like you in here” and with that she gives me a BIG smile and goes back to washing her hair.... and I didn’t cry, welled-up a bit but no visible tears, not even when I walked out. 

I could go on about how unfair it is that she has these issues but really, what’s the point? She does and she’s handling them with aplomb.

Microalbuminuria

Microalbuminuria occurs when the kidney leaks small amounts ofalbumin into the urine, in other words, when there is an abnormally high permeability for albumin in the renal glomerulus.-an indicator of subclinical cardiovascular disease.

Significance

1. ■ an indicator of subclinical cardiovascular disease

2. ■ marker of vascular endothelial dysfunction

3. ■ an important prognostic marker for kidney disease

   ■ in diabetes mellitus

   ■ in hypertension

A number of months ago I was speaking to another type I parent, she follows the site and we speak every now and then. During the course of our conversation she mentioned that reading blogs like mine is incredibly helpful but that sometimes she has to stay away because they can make her feel like she isn’t doing a good job of caring for her child. It took me a moment but I understood what she was saying. I don’t write very often about the things that I flat out mess up or the fears that live inside of me... Honestly, the latter is tougher to blog about then the former but today I’m going to give it a shot.

This one’s for you Michelle...

Three months ago I received an email from Arden’s NP, she said that she needed to talk to me about lab results. This email made my stomach turn as she and I do everything via email and that she was trying to set up a phone call was very out of character and I assumed not good news...

She called a few hours later and told me that Arden’s microalbuminuria level was alarmingly high, she was 57 and the high end of except able is 30. I tried to listen to the rest of what she was saying but it was difficult because I was also trying not to cry. When I got off of the phone I searched 

microalbuminuria on the web and found the information that is at the top of this post. Then I called Kelly at work, she researched it further while we sat in silence on the phone. Assuming that this test is correct, it looked like Arden was having serious kidney issues.

That’s when the dark thoughts show up. If our six year old is having kidney issues after only having type I for four years, well, it doesn’t seem like this is going to be a very good life for her. Sadness creeps in, silence becomes painful and I can’t seem to find one thing that I can do to help. The helplessness has returned. It took me a year to stop feeling helpless after Arden was diagnosed and in an instant that debilitating feeling came right back. Arden is sick, I can’t do anything to make her better, nothing seems fair - I’m lost.

A few days went by and I couldn’t shake it. My mind raced with the realities of what it would mean to need a kidney. I began having trouble looking Arden in the eye, I wasn’t sleeping, I couldn’t eat, I was in trouble and so was Arden. 

Now keep in mind that my NP said not to worry, we set up a time to retest her - I was specifically told that it was “not time to worry” but I couldn’t help it.

A couple of days after the NP and I spoke Kelly and I were still furiously Googling and reading everything that we could about microalbuminuria - ugh even the name sucks... As that was happening Arden seemed to be getting sick, Kelly thought that she had a UTI so I took her to her pediatrician. During that visit Arden told her doctor that it “burned” when she went to the bathroom. He tested her for a UTI in the office, the test came back negative but he sent a sample to the lab for a more complete analysis (thank goodness that he did) and a day later he called to say that Arden indeed had a UTI as Kelly had thought. He starts telling me that, “UTIs are common in girls this age and.........” just then I stop listening to him because I remembered that Kelly read online that a UTI can cause false positives in microalbuminuria tests - and with that, I could breath again.

Elated, I called the NP told her what had transpired, she couldn’t confirm that a UTI could cause a false positive so she checked into it, called me right back and confirmed that what I read was indeed correct... we decided to not retest Arden until her next quarterly appointment. That appointment was Monday.

I collected the sample in the morning and began my day...

By the time I had to get into the shower I was beginning to experience a fair amount of anxiety (and I am not an anxious person). I actually called Kelly and asked her to tell me about her morning at work, I cleaned the kitchen, vacuumed, I was trying everything to not think about the pee in the refrigerator. I knew that there was nothing to worry about but I just couldn’t help it.

So to anyone reading this but especially to you Michelle, please don’t ever think that I am living in some diabetesutopia... things get as shitty here as they do at your house and I promise to try to do a better job of showing all sides when I write. :)

This all ends well obviously. The NP emailed last night with the results of Arden’s microalbuminuria retest... 7.1! Her kidneys are fine and we are relieved but never will we be free of that little question that lives way in the back of our minds that asks, “what’s next?”. 

The picture at the top of this post is a random shot of a very little Arden...

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The following are archived comments from this post. You can post new comments below.

alexis aka @sugar_nova

I was on the edge of my seat reading. This I love your blog and I love love your love for Arden. I love sahds :) 

For some reason though I can't get blogger to add you in my feed with updates on new posts...help! Lol its a year of it knocking you off my blog roll.

Sunday, June 26, 2011 - 06:08 PM

Scott

Hi @sugarnove!

I will be moving my blog to a friendlier platform this summer and then it will be easy to track it. Until then you can try this link...

http://web.me.com/skca/Ardens_Day/Daddys_Blog/Daddys_Blog.html

Some people have luck tracking it.

ps. I have a theory about your 'allergies' drop me an email if you want to hear it... skca@me.com

Sunday, June 26, 2011 - 06:52 PM