Thursday, November 3, 2011

This is my Life

It's been almost 8 months since diabetes turned our world upside down, again.  I used to think that the first six months following Lovebug's diagnosis were the hardest of my life but I was wrong. The past six months have been the hardest of my life.(make that 8 months) I have seriously been living in a fog.  It's hard to explain unless you have been there, but I'll see if I can explain a little bit of my life to you.

Diabetes changed EVERYTHING.  I mean EVERYTHING. We can't go anywhere without taking our bag of supplies with us.  Without them it could be life or death.  Nothing is easy for us now. I think about diabetes ALL THE TIME. I always wonder what the girls bg's are. If they are eating something, what are they eating and how many carbohydrates are in it. I wonder what is going to happen next. We can't just send the girls to church, school or even play dates without A LOT of preparation. The Holidays are right around the corner and they make my head spin.

I am always tired.  I  get up each and every night to check their blood sugar. I  check them at 10:30 pm and 2:30 am.  I am up more often if their blood sugars are too high or too low. Needless to say I haven't slept much the past couple years. Think of it as having a newborn that never grows up. Too high and the girls can wake up with ketones and vomiting.  Too low and my girls can die. On top of that you have to worry every night when you put them to bed and hope they wake in the morning.  Kinda takes your breath away.

My head spins when I think about everything I have to do to keep them healthy.  I am a germ aphobe  now, and for good reason.  When it comes to illnesses with the girls, there isn't a small one.  Any of them, even a cold can put them into the hospital. We are constantly counting carbs for everything that they put into their mouths.  They can't just pick up a snack and eat it like most kids.  I have to poke their finger first and then give them insulin to cover the carbs in whatever they are eating.   It's the difference between them feeling good and feeling like crap.

 Site changes every 3 days, provided a site doesn't fall out or go bad earlier then that.  Think of it as getting poked with a large, long needle every 3 days.  It's not pleasant. It doesn't matter what is going on, those sites must be changed. Then there is the smell of insulin on your hands afterwards.  Believe me, insulin smells horrible! Oh yeah, and I almost forgot sensor changes every other site change and on every 7th day. Try keeping track of that! It's not easy.

We have to constantly worry about low blood sugars. Especially with Lovebug.  The CGM's help a lot but they aren't perfect.  Low blood sugars can lead to seizures and death pretty quickly. It is imperative that I am vigilant at all times about what the girls are doing and how they are acting.  Everything effects their blood sugar; excitement, stress, growth spurts; virtually anything you can think of and it will effect their blood sugar.  It can seriously be a headache everyday trying to figure out this "guessing game".  That's exactly what it is, a guessing game, because Type 1 isn't the same from day to day. It's very unpredictable.  It doesn't make sense to me and I can guarantee it's not going to make sense to you.  Yet another reason I have to be constantly on my toes. (and quite often would like to pull my hair out!)

Speaking of activities, try explaining to you child that they can't go to a friends house because their mom isn't comfortable with your "condition"  She is scared and doesn't want the responsibility.  It's hard to tell my girls they can't just go to a play date at a friends house.  Usually I suggest the friend come over here but that's not as much fun.  Lovebug, especially, yearns to be more independent but I struggle with letting her sooner then she needs to be.  She doesn't realize, yet, that she will have to live with Type 1 the rest of her life.

Then there is the toll it takes on the marriage.  A lot of marriages suffer when there is a diagnosis in the family and some don't make it.  Fortunately for us, diabetes has brought my husband and I closer together then I could have imagined. Let me tell you, it has not been easy.  My hubby and I have non-existent date nights.  They just do not happen.  We get very little time together as it is and at the end of the day we are usually pretty exhausted. You know nights away like many of you with "normal" kids get. They don't happen either. Very few people are willing to take 2 children with diabetes and get up in the middle of the night and check their blood sugar.  Those that I have that are willing, we always feel guilty asking.

I don't tell you this so you can feel sorry for us.  I don't want that.  But I do want you to know that having children with Type 1 Diabetes IS a BIG deal.  It's not a walk in the park.  They just don't get insulin and are better. (if only it were that simple).  I just want you to care.  Care to learn about the signs and symptoms. Care enough to help us bring awareness. Care enough to help us fight for a cure.


Meri said...

You are right friend. It IS a big deal...I'm proud of you for letting people know. And despite it all our children thrive. How do they do it? I'm sure when I was their age I would have fallen into a pit of dispair and refused to come out! Hugs to you!!

Misty said...

I wish more people could see what a BIG deal it is..Thank you for sharing. Our type 1 children are such hero's :)

Jules said...

you are so right in your explanation of it. i was nodding along. its a big deal. its a huge load. its an invisible disease with awful consequences. its alot of worry and stress and constantness. barely anyone in my life wants to care for my type 1 - it really helps weed out the ones who really love you and your kids.

Rachael said...

I agree. I hate that people just brush it under the carpet. Just because people can't physically see it, they think its no big deal....
Thats sad!

(((HUGS))) to you!

Misty said...

It's a BIG deal! I know it and you know it. We need others to take note of it too! Thanks for sharing your story and your emotions. Big Hugs!!


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