He starts seizing when his blood sugar hits 20.
Do you know what normal blood sugar is? It's 90-120.
There are two things that feed brain cells. Oxygen and sugar. Both are necessary. He was almost out of one of them.
Did you know there's a difference between type 1 and type 2 diabetes? All we ever hear about is type 2. That's the one that old, unhealthy, overweight people get. Do you know who gets type 1? Kids. And nobody knows why the white blood cells attack and kill the pancreas in some kids. And nobody has a cure for it. Sure, there's a semblance of maintenance. But there's no cure.
Did you know that low blood sugar affects the same portion of the brain as alcohol does? A person who is low will act as if they're drunk.
Did you know that keeping your blood sugar abnormally high will make you lose weight really fast?
Did you know it will also build up a store of sugar in your liver so your body can try to save itself when you go too low and don't have someone around to give you sugar?
Did you know a diabetic's mouth and lips go numb when they're coming out of a low blood sugar episode?
Did you know high blood sugar makes a diabetic tired and really cranky?
Did you know the first thing to go when the blood sugar is dropping is motor skills? Do you want to know when I learned that?
At Disneyland. On my honeymoon.
We'd been married a few months before going on our honeymoon and besides teaching me to give him insulin shots so I wouldn't be squeamish about it, I didn't know much about diabetes. I figured he'd lived with it for 10 years, he knew what to do.
Ha.
He told me he needed to eat. I asked if he needed to eat immediately or if we could go find a good restaurant. He said we could walk still. 20 minutes later, we hadn't found the right place to eat and he starts kicking his legs out spastically on each step. Like he couldn't quite control his steps anymore. But he was still going and there was a table just ahead.
I had no idea what was going on. I didn't know if he was playing some sort of joke on me or what. It wouldn't have been unheard of. At the time, I had no idea how blood sugar worked or how it affected a person. I had no idea how quickly it drops or how slowly it rises. We made it to the table and Dave collapsed on a chair and drops his head onto his folded arms on the table. All he said was "I need juice."
So I went and STOOD IN LINE.
I don't know what I was thinking. Now, I would be loud and annoying and push my way to the front and tell everyone within ear shot that my husbands blood sugar is too low and I need sugar immediately. Screw the line.
But then. I didn't know. I didn't know what was going on. So I stood in line for another 15 minutes for a pink lemonade. I went back to the table that he hadn't moved from and he couldn't lift his head off his arms. He was all sweaty and limp. But he could still swallow.
I held his head up with one hand and held the straw to his mouth with the other. He managed to down the drink but couldn't talk yet so I just had to hope it would work. I laid his head back down (it was heavy!) and just waited in silence.
About 15 minutes later, he sat up and said he was ready to eat. It was like nothing had happened. But I knew. For me, everything had changed.
Diabetes is a weird disease. You can go from the brink of death to perfectly normal in a matter of minutes. One small mistake, taking the wrong kind of insulin, forgetting to eat, taking two shots because you forgot about the first one...all of those can put someone in a diabetic coma. I know because I've seen it.
I have so many stories that I've decided to start blogging about what it's like to live with a type 1 diabetic. People don't know the difference. When I mention I had to call 911 because I couldn't get any sugar in him, the number one thing people say to me is..."why didn't he take his medicine?" That's type 2. Type 2 diabetics have gotten so unhealthy that their pancreas has a hard time producing insulin. It works, just not well. There is no medicine for type 1. Type 1's just don't produce insulin. Ever. They're completely dependent on synthetic insulin and shots or a pump. They're supposed to check their blood sugar regularly but it's such a pain in the butt that they learn their symptoms and don't. Even I can guess within 10 points what Dave's blood sugar is by how he's acting.
The crazy eyes start around 60.
I took that picture because my friend, Aimee, has a young friend with type 1 diabetes. This young girl wanted to raise awareness by having people write hope on their hands and post a picture online. Without awareness, people won't care, and a cure won't be found. We have to have hope. We have to teach about diabetes. Over 700,000 people in the US have type 1/juvenile diabetes. It's been shown that children are more likely to contract type 1 when their father has type 1. We have four children.
We must have hope.
ETA: entered in i heart faces raise your hand contest.
20 comments:
My classmate and good friend died in December at age 35, and diabetes was the underlying cause. His body had, by then, rejected a liver transplant and the kidneys had shut down. Dialysis was the only thing keeping him alive, he was in near constant agony and, in the end, he decided to stop receiving treatment.
I remember being one of many friends and their concerned parents nagging him to manage his disease when he was a teenager, worrying about his cavalier diet and waiting anxiously when he would take that black kit into the bathroom. He was a free spirit and diabetes was a prosaic reality for him, an annoyance that kept him from being all he wished to be.
I really miss him, and feel lucky that he recorded albums before he died, so we can all have his music.
Blessings to you and your family as you live with this. And hope.
Wow. Very, very informative. I am sorry he got so low again. That is scary. I hope that things are better today.
Randy and I saw Dave low. I hope that things will balance. Prayers for you.
Thanks for informing and sharing the info.
We will have HOPE too.
"I laid his head back down (it was heavy!)" -- gee only one exclamation point? -- j/k and thanks for the brain ego boost sweetie <3 <3 <3
How do you find out if your kids have it? One of my dad's best friends has type 1 diabetes and has had a few near death experiences as well. Luckily he has great friends and family around to help, just like Dave. :)
I also have a husband who is a type 1 diabetic. We've been together for 4 1/2 years, married for about six months. I know what you mean when you talk about those 3am adrenaline rushes, I've gotten to have fun with those at least 10 times in the past few months, including an ambulance ride to the emergency room when he was just too far gone. How do you deal with his night time lows? Do you have any tips for a spouse of a diabetic at the end of her rope?
Kandace, you just watch for signs. The first noticeable signs are excess hunger and thirst, peeing a lot, fatigue and weight loss. Eventually they'll start throwing up too.
Anon, I wish I knew what to tell you. He's been significantly better since getting a pump instead of shots. He tested a continuous glucose monitor for a week and that was awesome because we both could know his blood sugar at all times. We're hoping he can get one soon. Our insurance agreed to cover it but it still is expensive month to month for the supplies. It also helps if he eats a little protein right before bed. (like a pb and j)
Hi.
My name is Lori. I have been married to a Type I diabetic for almost 18 years. He has been a diabetic since he was 6 years old. We have three children.
Your descriptions about driving while having a low blood sugar and being shaken out of bed by an overnight low blood sugar sound remarkably like my life.
I was searching for support for spouses of Type I diabetics when I found your blog. In a weird way, it's nice to know that there are others out there.
Thanks for blogging.
My husband was diagnosed about 40 when kids were young. It's been 20 years & increasing heartache. Kids are long gone,I catch drama.
I don't know how he functions at work, somehow he does. I'm a nervous wreck though at times.
The thing that really bothers me is that he seems to be able to control it better around other people, is this my imagination?
Wow, great post!!! My daughter has type 1. I wish every day that it was me that had it. We are walking for a cure at the end of this month!
Great pic, by the way! Thanks!!! :)
Hi,
I've a type 1 diabetic, (Hate the word diabetes; the 'etes' makes it sound so... geriatric). I was diagnosed at age 11 which was about 20 some odd years ago.
I just wanted to high five you on the whole difference between a type 2 and a type 1. *HIGH FIVE*
When I was first diagnosed as a kid, and the difference was explained to me, and how type 2's can have a lot of the same physical effects over time and then they tell me that most type 2's can LOSE WEIGHT AND CONTROL IT WITH DIET AND EXERSIZE???! WTF?
Sure I understand there are some type 2's that are gentically predosposed to it. BUT, it's not the same thing. They are in a situation due to years of abusign thier bodies. Type ones do not even get the chance to make a consious decision to abuse anything.
I do not like being stereotyped with them.
So interesting to read your blog. I have only read your three posts about diabetes thus far. I have been married for 14 years to my own Dave who was diagnosed at age 12. I love him dearly but it has been incredibly difficult. I have called 911 at least 40 times in our marriage. His lowest sugar was 17 and he had been seizing on the floor for a few hours we trhink before my 5 year old called 911 and then my cell phone (I was at work).
Dave has had a pump for 2 years and that has helped a lot but not eliminated all emergencies unfortunately. Most recently he dropped low was unconscious....i called 911. When they came and started IV and gave him D50 and he started to come around. As his sugar went up, he simply went crazy. He was completely delirious. They called for back up and we ended up with 6 police cars, 4 ambulances and a fire truck. All those people in our bedroom and he still sent 2 to the emergency room with injuries. They had to taser him 3 times and put in handcuffs to get him to hospital. He also had 103 fever, low blood pressure (80s over 20s all day). They worked him up and after many tests concluded it was a rare thing called excited delirium. Usually comes after alcohol or drug withdrawal but has happened after hypoglycemic episodes. Hallmark is superhuman strength, delirium and elevated temperature. He didn't know me for 14 hours, then suddenly came around.
I wish I knew how to be less stressed about it after all these years. Just this week I almost let him sleep when I went to work b/c he had knee surgery and was up a lot at night and tired. Last minute I decided to check on him and his sugar was 33. So scary to knwo one wrong decision and my husband could be dead.
He just got a continouos glucose monitor a few days ago. He has it hooked up but waiting for his appt for the full class. I think it is going to be a God send. We are lucky enough that insurance pays for supplies and all. I pray you are able to get one as well.
No one understands the stress of it all, or that it really is as dramatic and life threatening as it sounds.
Somehow it makes me feel better to know someone else is out there knowing how I feel. :) And I too can tell my Dave's blood sugar very easily.....he says it must be a super hero trait b/c I often know he is low before he does!
Thanks again for making me feel not so alone!
Kate (Dave's wife)
I'm now dating a man with Type 1. Believe it or not it was something that attracted me to him because my own son has an endocrine disorder very similar to diabetes. My son has had it all his life, and I struggle to keep enough glucose in his system on an almost hourly basis. I get him up through the night every night to give him something to eat so he doesn't get too low (an idea some may find comfort in for diabetic spouses - waking at the same time every night only once is a lot less stressful than repeatedly because you're worried! Trust me- I know! Even a protein drink works.)
This is the one rare individual who didn't find the reality with my son scarry, because it was his reality, too.
Now I face a choice of spending my future continuing to care for an individual with diabetes. He's already had one amputation, almost lost his sight in one eye, is loosing kidney function, struggles with chronic infections, and I know he consciously keeps his glucose higher than it should be for fear of becomming hypoglycemic.
And he's the most amazing, loving, supportive, encouraging individual I could imagine ever finding. He is the best friend that I love with my whole heart, a combination I never knew could exist together... Yet I still wonder at times, will that be enough? Will that be enough to get us through the next 30 years of Hyper and Hypoglycemic episodes, enough to get us though potenitally more amputations, Kidney dialysis, and other medical crises? Will it be enough if it ends up that I only have 10 years with him instead of 30? Yet in the next breath I wonder if the bigger risk is really missing out on those years, however many or few we may have together.
If those of you who married Type 1 diabetics knew "then" what you know now, would you do it again? Leaving the incredible children that were products of your marriage (which for those who don't know much about diabetes - it turns out complications in the bedroom are a whole other issue for another post another time!) out of the equation (more children are firmly out of the realm of possibility for us now), would you say it's been worth it?
Or would you have traded it in for nights of sleep, not sitting beside a hospital bed, never having to wonder if you should mention he should or should not eat that (again). Would you trade it in for... normal?
I know this was written years ago....but it is so nice to read another spouse's take on things.
I have been married to a Type 1 Diabetic for 15 years. We have three children. And we have been through many highs and lows....literally.
We have had the lowest of the lows where he is seizing and can not help himself at all, we've had the moments of delirious lows where I'm basically trying to get a drunk to drink OJ and have half of a PB&J and then we have even had the worst...the time he didn't want to tell me ran out of insulin for his then pump (we have since gone back to the old fashioned way of doing things) and had to go to the hospital-unconscious. We almost lost him. I don't think he realizes the severity of these highs and lows as much as he would if he ever had to witness one. It takes a toll physically and mentally on everyone in the family.
I can't even count the number of times I've woken up to him cold and clammy, instinctively knowing how close he was to a seizing low. I also can't count the number of times I had to call in reinforcements when we were early on in our marriage and I was 18 years old and had no idea how to help him because it panicked me so much. I wish it was easier to find a support system for Type 1 spouses. It's nice to be able to hear other's experiences as well as vent about everything.
Thankyou for this. I have been married to a type one for a year and a half and got a big shock last night. It made me realise that i too need some support to look after my husband.
We love our spouses so much, it kills me on the inside that he has this disease, i would change it if i could. I need to keep him as healthy and regulated as possible, but i need to find the best way to do this.
Two of your blogs left me in tears, the funny one uplifted me. Thankyou.
I have been married to a type one for 34 years,he has had three kidneys and a pancreas transplant,carpal tunnel,blindness,more hospital visits than I can count,I am sixty so is he I am healthy he is not and in total denial I am tired of this what do I do
May I share this?
Of course
So good to find a place to share feelings and experiences that we are all coping with. I have been with my husband for 30 years and he has had diabetes type 1 for 25 of them. I totally agree with the comment above that it is so different to type 2 diabetes in that there is no abusing of the body - one day there is just no insulin being made in the body and that person is completely reliant on synthetic insulin. There is no breaks 24/7 have to be aware and ready when an emergency can strike - even when you prepare/plan and do everything right - there are still times when things go wrong - that is the stress of this disease. There is always those times.
I know all to we'll that rude awakening. When you go from a sound sleep to full on paramedic at the speed of light. It's terrifying, but you know you have to act quickly if your going to get them back. My husband and I have been married for 10 years. We have two small children, and as you said he's had type 1diabetes so long he doesn't test anymore. I can share 1 tip my brother (who is a firefighter and paramedic) gave me when we got married. He said to keep a can of frosting on hand. They keep a can on the ambulance. It does the same thing as the glucose they give them. I started buying the squeezable tube, and keep it where I can easily get to it at night. When he starts seizing, it's the easiest to get in mouth. Especially if he's fighting me.
My cousin recommended this blog and she was totally right keep up the fantastic work!
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