I'm coming up on 25 years of having diabetes. I am still nearly free of "complications".
My eyes amaze the doctor I've seen for years, my kidney function is - in the words of at least two endocronolgists - better than normal, my feet and hands have full feeling and are free of burning and pain.
The only place diabetes has crept up and reared its ugly head in terms of complications is in my gums. Yup, you read that correctly, in my gums. I've battled periodontal disease since my early twenties - in spite of the fact that I've been flossing at least twice a day since my late teens. Numerous dentists and specialists have attributed the deterioration of my gum health to the diabetes. Yesterday, I got the news that in the coming year, I'll need over $3,000 (out of pocket, mind) in gum surgery. This news got me thinking.
Aren't we all, even those of us deemed "complication free" dealing with complications?
This disease is damned complicated.
It's complicated when my bloodsugar drops to twenty in the middle of the night and my boyfriend has to, as calmly as he can, deal with my ravings and fighting and get me to treat the reaction so he can avoid calling the ambulance.
It's complicated to explain the difference between type 1 and type 2 when someone says, "I can't believe you have diabetes, you're not really fat."
It's complicated to have to remember to check my bloodsugar as often as I'd like, and to have to deal with the guilt I feel when my humanity creeps in and I forget.
It's complicated to wonder how long I can hold off this disease's full-scale assault on my eyes, my limbs, my organs.
It's complicated to look everyday at the smaller assaults the disease issues on my body - my calloused fingers and the pump marks on my belly and hips and thighs - and sometimes wish that I could close my eyes and dream my whole life over again minus the diabetes.
It's complicated to realize that my cholestrol numbers need to be lower than the general public's numbers, that my weight needs to be kept in better check, that I've got to visit more doctors for EVERYTHING. It's complicated to know that some things are just more challenging for me because of my diabetes.
It's complicated to keep tabs on everything. To make sure I've got my pump on in the morning, to remember to replace that empty bottle of strips, to be sure, when I leave the house on a day trip, I've got plenty of extras, to eat when I should, to test before I get in my car and drive...
I've got complications related to diabetes.
Most of them aren't physical.
In the past several months, I've just been so down when it comes to my diabetes life. My numbers haven't been great - but they haven't been terrible either - they've just been so-so.
There is just too much to deal with sometimes - too many things to explain, too many arguments to have around my care and how it gets covered, too much to worry about. I don't really feel as up to the challenges as I have in the past. I know this will change, as it always seems to, but I'm angry at myself for letting it get to me.
Lately, my answer to many people's diabetes questions has simply been "It's complicated." Nothing more. I'm ashamed of that. Because I know it IS so much more than complicated. And I know that there are others out there who are dealing with it - AND spending time educating others and all I can manage is "it's complicated."
I hate feeling this challenged - this weak - in the face of something I've mostly dominated during my time with it. Where have I gone? Where am *I*? Because, surely, this whining, sniveling, simple wreck of a thing that inhabits my body isn't ME.
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13 comments:
This is a great post, and you are right, it IS complicated. Don’t feel bad if all you can educate someone on right now is “it’s complicated.” It is and you will have that day when you want to say more.
"Congratulations" on the 25 years being "complications-free," despite the complicatedness of it all.
I can relate to the gum issues, too. Perfect teeth. Crappy gums.
Terrific post, Nicole. And I completely understand. To the point where I read your post and had to marvel at how much it sounded like something I had written just last week. (Am sending you the exerpt once I go home from work.)
This whole thing is complicated.
And I'm with you on the gum issues, as well. I brush and floss and gargle and all that other stuff, but it's still never enough. :(
I hate this damnable disease.
And Nicole-
You. Are not weak.
I cannot imagine living with this thing for 25 years, and not going through periods where you just can't talk about it-- when you can't bring yourself to be that diabetes advocate/educator.
I know it wouldn't solve any of the issues you describe here, but Nicole, in this moment, I'd like nothing more than to come over, make us both a cup of tea, and just listen.
(((HUGS)))
Sandra
"I've got complications related to diabetes.
Most of them aren't physical. "
man, you just hit upon my new motto!
Look, D is complicated and that is exactly what nobody gets. Great post. It is too dam complicated.
Nicole,
I agree with Sandra. You're anything but weak. I have always admired the strength that you show in the face of this disease.
And, you may not be answering diabetes questions, but that does not mean you're not educating. Because of you, my insurance company is hopefull rethinking their stance on how often people with Type 1 should test.
We all have days (sometimes weeks) when it all just seems like too much. I'm sorry you're going through that now. I'm sending you a hug (a big on:-)
A big one, hug that is. That's what I meant to say.
great post... It is 24/7 and it's okay to get tired of dealing with it, talking about it etc..
Nicole, you're not being weak by expressing your discontent with diabetes.
You've gone for 25 years with this damn thing and you're doing wonderfully.
Expressing and facing your feelings proves that you are strong.
You could easily look away and ignore all of the complicated things you deal with on a daily basis.
You are far from weak.
Non-physical complications.
Absolutely. God, I hate this disease.
Great post Nicole. Very true, and very well said.
Those "non physical" aspects of this are so often not acknowledged as important.
Nicole,
You're so right. We, as diabetics, do have a very strong need for a good memory. Sometimes I wake up at night in horror not being able to remember whether I took my dose of Lantus before bed. It is tiring being a diabetic, that's so true. I wish too it was possible to take the heavy weight from the shoulders once in a while.
But I think actually the constant need to explain yourself and your diabetes to people around, especially the loved ones, is the hardest on me. I feel like a parrot repeating the same stuff over and over again. So I can totally understand your answer: "It's complicated."
I hope you'll feel better soon. We're all here for you. We CAN understand what you're going through. You're not alone. Keep up the spirits.
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