After Shock

Katherine Marple

| Jan 17, 2012

I wake in the morning with the taste of sour milk on my tongue. I'm sweating, extremely weak and disoriented. My muscles ache at the thought of moving. I have a sick feeling in my stomach, and it's threatening to come up my throat. I'm not sure what day it is. Nausea hits in a wave, sending chills down my spine.

My husband's voice is drifting over me, covering me in a blanket of warm words, keeping me safe.

He's reading a book aloud, and his voice is steady and calming. Something bad must have happened. I silently start to cry because I know: I'm waking from a cold hell and I've dragged my husband with me, again. I've just come out of an insulin shock coma, and the guilt is eating away at me.

I slowly try to sit up in bed, the five comforters covering me not nearly enough to keep me warm. The thermometer says it's 65 degrees in the room, and my husband is in a short-sleeved shirt, but I wrap the blankets tighter around me because I can't stop shaking. The blankets are sticking to my chest, and my hair is tangled and covered in sweat. My husband stops reading and puts his arm around me for support. He explains that the sticky residue on my face is cake frosting he shoved into my mouth while I was spasming. He told me that I was fighting him, shaking my head violently, seizing, pushing him away while he was trying to force sugar into my bloodstream to wake me up.

Used test strips are scattered across the bed and on the floor. He sees me looking at them, trying to recall a glimpse of what happened while I was comatose. As usual, my mind gives me nothing. Those hours that I was moving, yet not awake, are gone. He explains that he tested my blood sugar every twenty minutes after giving me the cake frosting. Because I was still seizing, he fumbled with the strips sometimes and dropped them. I look at my fingertips and see dried blood across almost every one.

I try to smile, but I'm struggling to remember what happened and can hardly find the strength to blink. I ask him how long I was out. He says it took over two hours before my blood sugar would register on my glucose meter. He had been reading aloud to keep himself awake, to put his mind on something else, and to comfort me in case I could hear him. I reach for him, bringing him close to me even though I don't have much strength yet, willing him to feel how sorry I am for putting him through another insulin shock and another sleepless night. He is rigid at first, unsure, but quickly relaxes against me and encloses me in his arms.

I know he believes that I am trying my best. I know he understands that some things are out of my control. I know he cares about my life because I've seen him poring over news and research articles about my disease late into the night. I know he does not blame me for the way my body causes me to stumble over and over again.

But I blame myself. If only I could be more careful. If only I could put in just one more hour of research every day. If only I made more money so that I could try all of the experimental drugs out there. If only I were smarter so that I could come up with a cure to save us all. If only.

I carry this burden on my shoulders as I slowly drag myself to the bathroom to wash the dried frosting and saliva off my face and out of my hair. I stumble a few times, my legs still not strong enough to carry my weight. I feel ready to tip over. I feel ready to quit. When I look at myself in the mirror, I don't recognize my face. The color is gone from my cheeks, the fight has drained out of my eyes. My hair is limp and knotted. I look like I've lost an intense fight and am dead.

My joints click at the elbows and knees as the muscles relax after being held in a seizure for so long. I've given up trying to remember anything from the previous night and have decided to move forward. I undress and pull myself into the shower, the warm water awakening my blood and easing my aches. I stand in the stream for a while, recognizing that even though I'm sore and bruised and ashamed, I've survived another night. I may have come close enough to shake hands with the Reaper one more time, but I'm still alive, and I've got another day to fight.

It takes a few days after a shock for my body to return to normal. It takes a few weeks for me to lose the shadow of doubt that follows me everywhere, even into my dreams, suffocating me in my sleep. But I find strength within my self, hidden where I thought there was none. I find comfort in my husband's arms, knowing that he believes in me and will never give up on me like so many others have. And I find hope in these words, believing that if I tell my story over and over again, if I shout my name into the world until it rings in every person's ears, if I scream and claw my way out of these nightmares and share them, then maybe they'll help us. Maybe they'll remember. Maybe my disease will become extinct. I couldn't ask for anything more.

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Categories: Blood Sugar, Comatose, Experimental Drugs, Glucose Meter, Insulin Shock, Insulin Shock Coma, Losing weight, Nausea, Seizing, Seizing, Taste of Sour Milk, Test Strips


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Comments

Posted by Anonymous on 17 January 2012

I felt that I was reading about myself. I too have someone who is as loving as your husband is. He is able to walk through this hell that they call DM and still love me. I am now trusting enough that when he says to me that I need to check my blood sugar, that it must be low. Sure enough it is and I thank him for loving me so much that he can tell when I am beginning to act goofy. Everyone who has diabetes needs a partner like him to walk this lousy path with me.

Posted by Anonymous on 17 January 2012

I recognise your story as something that frequently used to happen to me too, luckily I also have a partner who loves, helps and cares for me. However, a couple of years ago I switched from using the newer insulin analogs to animal insulin - Hypurin porcine neutral and Hypurin porcine isophane. The difference is incredible, and now I always wake up when my blood sugar drops and I haven't had an episode like the one you've descibed since swapping. It was difficult to get the insulin prescribed as doctors and DSN's push the newer insulins, and I'm not sure if you have access to animal insulin in the US (I'm in the UK) but anything is worth a try and you can always swap back if things don't work as you hoped - this was the argument I used to get animal insulin prescribed. The benefits of the animal insulin mean I will never swap back while it's still available.

Posted by lizmariposa on 17 January 2012

Katherine, I love the raw power with which you tell your story. The story of so many who are living with the dangers of hypoglycemia on a daily basis. I've had just one seizure, in my life, and it lasted so long... and scarred me so much... I never want to relive that, again. I could see myself well in your writing, even though it was a different kind of seizure. We really need to shake people up... and help them realize we need a cure... NOW. Thank you for your daily courage, and your earnestness.

Posted by Anonymous on 18 January 2012

Have your doctors ever put you on a continuous glucose monitor? It measures your blood sugars over time like every 5 minutes and can give you insight into times you go low as it relates to your insulin dose and food intake. If not, you might request it. It sounds like you are a type 1 diabetic? Is that correct? Make sure you are on long acting like Lantus and a rapid acting at meals.....and never ever take your rapid acting without eating first. Hope this helps - you probably already know it but you wouldn't believe the # of people I run into whose Dr. never told them. Hopefully yours has and is helping you work this out. I am so sorry you have to go through this over and over.

Posted by Anonymous on 19 January 2012

I understand how tough that story is to tell. I believe if your meter didn't register for two hours and you were comatose, your husband should have call 911. You could have died at home but been treated by the rescue squad. Reading this story, all I could hope is that anyone else that experiences the same thing understands the importance of calling 911 in that instance.

Posted by Anonymous on 19 January 2012

I too recognise this story and wish earnestly for the extinction of diabetes. Meanwhile many thanks for your honesty... the more we talk about living with diabetes, the less alone each person will feel.

Posted by Anonymous on 19 January 2012

Katherine, thank you for sharing your compelling and heart-felt story. I counsel many patients with diabetes, and encourage all spouses to come in for support and education as well. Severe hypoglycemia is not only scary, but it is truly a medical emergency. Has your husband been trained to give you a Glucagon injection when your blood sugar is so low that you are seizing? Its very easy to use, and just requires a prescription from your health care provider. I would recommend that.. I know Glucagon has saved the lives of many patients.

Posted by Anonymous on 19 January 2012

You tell my story in your words. Except I no longer have a loving husband. I have one who blames me for my hypos. The terrors of losing control are indescribable. There are times that I wish that I would just slip away into the night.

Posted by Anonymous on 19 January 2012

I'm also sorry for your pain, but I agree with a previous post - your husband should have called 911. Do you live too far from emergency help? Also, do you keep glucagon in the house? My son was extremely low one morning and drifting into a coma, but first I administered glucagon, and then immediately called 911. Even though he began stabilizing by the time the paramedics arrived, I let them take him to the hospital to be checked out because if his sugar dropped en route, they could put a line in and give him glucose. There would have been nothing else I could have done after the glucagon.

Posted by Anonymous on 19 January 2012

The other anonymous poster is right, and I'll add some.

First, I feel your pain. Lows are scary, and they're not all avoidable. But I have to ask: what led to this? How did you not know you were going low, well in advance of the situation? Even if you don't have a CGM (which you should if you're as volatile / brittle as you describe), testing frequently makes a BIG difference.

I know sometimes we carb count wrong, and sometimes there are other reasons for a really bad low. But most of that's knowable. I tend to run low the entire next day after exhausting exercise (for me, a 10+ mile run). So you reduce your basal rate and pull back on your meal boluses.

Sometimes the cause of brittleness is insulin resistance. Think of it this way: if you are a jeweler, but all you have to work with is a hammer and chisel, expect to break a few really nice rings. Too little insulin has no impact, and too much is... too much. And the line between the two is often razor thin if you're insulin resistent.

There's so much I don't know about your situation and want to ask. You have my sympathy. I've had lows like this. But while they're common with some folks, they're not normal and something isn't right. When you get the chance, take a good long look at your food and insulin regimen and try to figure out how to avoid the situation if you can.

Don
T1 for 40 years

Posted by Anonymous on 19 January 2012

I am so glad you are ok...! please don't take this the wrong way, but how about having glucagon on hand? I will pay for it if you don't have insurance...how scary your story was! I also concur with the 911 suggestion...the only thing I can think is that you are worried about cost? HEaltcare in this country is such a shame...

Posted by Anonymous on 19 January 2012

Thank you for writing this down.

"I hate when that happens," was a tagline used in a number of Saturday Night Live sketches with Bill Crystall from the 1980s. I've been through what you describe more times that I wish to admit to in my 45 years with type 1 diabetes. It has never gotten easier.

Posted by Anonymous on 19 January 2012

I love this article and appreciate your honesty. This has happened to me with basal adjustments in the night. Sometimes the shock comes on so quickly. I had a long sit down talk with my fiancee when we first started living together about not calling the ambulance. I trust that he can take me out of shock, and he has confidence in himself as well. We have each done our research. I have had the ambulance called for me in the past and all they did was exactly what was described in this article, except they charged $900 for it- that's just the ambulance ride and doesn't even include the hospital bills. If you don't have confidence in your partner's abilities, then definitely suggest a 911 call... but I certainly wouldn't preach safety to another diabetic who has lived through something like this. If she is telling this story so openly, then I would guess this isn't her first episode of shock.

Posted by Anonymous on 19 January 2012

HI I also felt it was me writing this story, good luck and thanks to you for sharing it with us all and making me realise there are so many people out there just like me with this terrible disease. Ignore the people who say "WHY DID IT HAPPEN, DO YOU NOT HAVE A CGM" I have a cgm system but the hypo incidents still occur (granted not as often) however I woulde also recommend you getting glucagon as I have it and it has worked wonders when it has been needed. I have type 1 diabetes for 49 years so am well aware of all the ways to try and prevent these attacks, but they still happen - thats unfortunately life with diabetes. We'll all keep praying for a cure. Best wishes for the future and thanks again Jayne

Posted by Gabby530 on 19 January 2012

I went thru wild swings like this with all four pregnancies and even still occassionally with mid cycle hormones....assuming that you have ruled out obvious causes like too much insulin or miscounted carbs, may I suggest trying Extend snacks before bedtime? These are GREAT for type 1's because the carbs are slowly relased over 9 hours so they help prevent lows in the overnight! We (my type 1 daughter and I) use them nightly because we are both athletic (which means activity-induced delayed drops in glucose levels) and they manage to keep us very stable! PLEASE be sure to have that glucagon on your bedstand as well....it's a lifesaver! God bless you and your husband!

Posted by Anonymous on 19 January 2012

I have a husband, and I have lows (in the40's sometimes) ---- but I can't count on him to notice anything wrong with me. Even when I tell him I am running low, he says mhm nd goes back to his computer. So I monitor mysself closely, and err on the side of too high glucose, to my doctors disgust, He says high sugars are as bad or worse than low sugars, I feel like telling him to try having a low and see how that feels. Doctors really should --- maybe they would be more understanding.
Good luck to all of us --- let us keep ourselves safe.

Posted by Anonymous on 19 January 2012

I also know only too well what you are talking about. I believe many of the previous comments are from people who don't understand your situation. Each T1 is different, and over the years I have become extremely brittle, as well as unaware of low that falls rapidly. So, even many of the other diabetics aren't educated enough about the disease and think everyone is similar to them. By your photo, I presume you gave birth sometime not terribly long ago. That hormonal alone change can throw you off for quite some time as well as a myriad of other things. Do keep the Glucagon around, that has been my life saver as well as a caring husband and family.

Posted by Anonymous on 20 January 2012

Diabetes is difficult no doubt about it. Your experience is not or should not be the norm. Your severe and prolonged
LOw blood sugar absolutely required medical assessment and intervention. Accessing this intervention is life saving, brain cell saving and may lead you to a diabetes team that could help you.

Posted by Anonymous on 20 January 2012

Katherine, this sounded like a description of me. I've had type 1 for nearly 36 years. My husband is a saint, and has pulled me out of more nighttime lows than I can count. He is very good at giving glucagon, and as numerous others have suggested, you would really do well get some (& keep it on your husband's side of the bed.) BUT, it's extremely unpredictable. It WILL definitely raise your BS, but you may be high for half a day after using it, as well as having a severely upset stomach. I've been on a pump for 11 years, but there are still times when my BS gets incredibly low no matter how little I've bolused or how much I've eaten. (I tried a GCM and it was extremely uncomfortable and inaccurate. I gave up on it after less than a month.) So, all this is to say you have my complete understanding and sympathy, and I'm so glad you have such a wonderful husband. We now use GEL (not the brand name) icing that's found on the cake mix/cake decorating aisle of the grocery store. A small tube has about 80 grams of carbohydrates, and it has NO FAT in it, so it's absorbed much more quickly than the pasty, butter cream stuff that you described. AND it's cheaper ($3.00 to $4.00 a ) than the glucose gels sold at the drug store. Thanks for sharing your experience with us. It sounds very selfish, but it's a great help for me to know that I'm not the only one going through this. I hope your next report will be much better.

Posted by Anonymous on 20 January 2012

I am an endocrinogologist. Very touched by your powerful story but a bit horrified by the fact you were comatose for 2 hrs. a) Your doctor should prescribe a glucagon emergency kit. all patients on insulin should be provided with the kits. It is meant to be used when you are having a severe hypoglycemic reaction and are not alert enough to take anything by mouth. Your husband and others should be taught when and how to use the glucagon kit. (it is very easy to use) You should keep kits at work, home, etc. b) If you are unconcious and seizing EMS should be called immediately and while they are en route, glucagon or glucose gel or cake frosting can be administered. Wishing with all of you for a cure or at least a better way of dealing. All my best.

Posted by Anonymous on 20 January 2012

I'm so sorry. I am the mother of a Type 1 daughter and I cried when I read this....no one realizes HOW difficult this disease is... I pray everyday for a cure.

Posted by Anonymous on 20 January 2012

I too had an hypoglycemic seizure when my baby was several months old. My husband called 9-1-1 because he couldn't remember how to use the glucagon. I didn't have to go to the hospital. After they came, I was alright, just shaken up emotionally. Let your husband know it is ok to call 9-1-1 when this happens. It happened again the night before my son's 2nd birthday, but he put cake gel in my mouth and I came out of it in about 10 minutes. Please get yourself some glucagon in case it happens again so your husband and you don't have to go through that again. My son is now 18 and those were the only 2 times that has ever happened to me.

Posted by Anonymous on 20 January 2012

It was eye-opening to read your account of a severe low blood sugar. My husband has been a diabetic for more than 50 years and he can no longer feel his lows. I know the terror of the other side and also sympathize with your husband, but your words have helped me to realize how he feels after a severe hypoglycemic episode. When I was younger, I was determined to handle these events alone, but now have resorted to calling 9-1-1 when he is totally non-cooperative and very low. I would encourage your husband to do the same. There is no need for him or you to suffer through 2 hours of the fear, dread and uncertainty of a low blood sugar.
Diabetes is an insidious disease and help - in many forms - is out there. I admire your courage in talking about this and your husband's courage in sticking by you through it all.

Posted by Anonymous on 20 January 2012

I'm T 1 for 53 years. After the first hypoglycemic episode, the body is less resistant to having another. After the 2nd episode, the body is less resistant to having the 3rd. Gradually the time spans between episodes lessen. Episodes become more frequent no matter how careful you are. Finally they are monthly. You may become an epileptiic, which is treatable! Dilantin (phenytoin) may save you. It's cheap. Stridently insist that your PCP refer you to the best neurologist in your region for tests. Get tested every year. If the term epilepsy is uncomfortable, try using "seizure disorder". I echo using pig insulins and glucagon. I echo bed snack: try 2 tablespoons peanut butter or sesame butter (tahini) on Wasa crackers. Try replacing your doctor with Dr. Edelman or Dr. Richard K. Bernstein. At least read his books. Cutting carbohydrate = less insulin injected = diminished hypoglycemic seizure risk. Dr. Lois Jovanovich is another author (really helpful) with Type 1,so she REALLY understands what it's all about. Please write another article in 6 months telling us what choices you made and the results. I anticipate reading more from you!

Posted by Anonymous on 20 January 2012

I have type 1 diabetes but have been blessed it has never reached a low to that extreme. I have read several article lately where there r dogs that r trained to awaken a pt. with low readings. I don't know a lot about this but i think it would be worth looking into. I live alone and have never had a pet but if the time were to come to be life threating, I would certainly consider a dog.

Posted by Anonymous on 22 January 2012

You should keep Glucagon in your house. It is an injection of glucose for when you are unresponsive or unable to eat or drink. This will eliminate your husband having to shove cake frosting. It also works fast. Your husband would just inject it into your leg muscle. I have it with me always!

Posted by Anonymous on 24 January 2012

I also prefer cake frosting. Glucogon swings my glucose really high for almost the entire day afterward. Thanks for sharing. Your husband is brave.

Posted by Anonymous on 28 January 2012

You're lucky to have a supportive partner like that. Most girls are turned off by my diabetes. I fear going to sleep every night because something like that could happen to me, and I have no one to help me.


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