Thirsty....

Just laughing to myself a bit today about how I'm sort of "programmed" to view being thirsty. 

I find myself going down this crazy thought process for such a normal human need.  Ok, here is what I mean...

So, first I notice that I am thirsty.  Then I think "am i unusually thirsty, does this MEAN something".  I just remember growing up being told that being thirsty was a "sign" that you might be diabetic.  And with my sister being type 1, it felt sometimes that it was just a matter of time before I would be diagnosed.  That's how I used to think, at least, because neither I nor anyone seemed to understand WHY my sister contracted this chronic illness. 

So it went.  I felt like I monitored my "thirstiness", my parents monitered my "thirstiness", and now as an adult, if I am thirsty, my first response is NOT the typical "oh, geeze, you just ran 10 miles, of course you would be thirsty".  My first response is "Oh CRAP, is this a sign I might be diabetic"..

Weird, huh?????

Sensitive....

Something being a "type 1 sibling" has taught me is how to be amazingly tuned in to people and how they act.  And of course any care giver to a type 1 could say this so I am not claiming to have a lock on this particular skill.

But the thing is, growing up, I obviously paid so much attention to how my sister "acted".  If she seemed just the slightest bit different when we were kids, it usually seemed the outcome was an insulin reaction.  After a while, you start to hone your skill at picking up on just the TINIEST change in behavior in order to take preventative action.

Obviously, as a child, I wasn't primarily responsible for taking care of my sister, but its inescapable to avoid participating in the "detection" and at times being the one who noticed the changes and initiated action.

I only bring this up, because I realize I am like that with ALL my relationships and its nice to understand where it comes from.  I am SO sensitive to how a friend or loved one acts and seem to notice just the slightest change in their behavior.  I am not doing this on purpose, of course, its just part of me.  I grew up learning that changes in behavior that didn't seem "normal" usually meant "danger".  They were a warning sign to get my sister help.  To get her sugar.  And of course, it SCARED me when my sister would have an insulin reaction as a kid (well, who am i kidding, it scares me now, but I don't live with her so I don't face it every day anymore).

But, I don't think its a behavior that you just apply to ONE person, and I think its been one of those really great "benefits" of growing up in a diabetic household.  I am Sensitive to people.  I notice when something is wrong...

And who doesn't want to be noticed???

Relating....

Ok, seriously, I was doing some "googling" today in another futile attempt to find ANY type of information about being a SIBLING of a type 1 diabetic.  If you ARE the diabetic, you could get LOST in websites and blogs with stories and tips and information its probably overload.  But, I want information about being a SIBLING, how to cope, and the lingering effects of growing up in a diabetic household. 

Then something from the JDRF website popped up.  Just a simple little thing, but it mattered to me.  It was a Q & A posting.  Here was the "question":

Q: My little sister was diagnosed in December, and now she's getting all the attention, and I'm really jealous. I'm 13 and really know better than that, and I know I need to be more mature, but I can't help it. HELP ME PLEASE!!!

Honestly, I didn't find the response all that helpful or relevant.  It was certainly "intellectually" correct, but not emotionally helpful.  What WAS helpful was seeing the question itself.  BECAUSE THAT IS EXACTLY SOMETHING I WOULD HAVE WRITTEN WHEN I WAS 13!!!  I understand what this kid is saying about knowing that they NEED to be more mature.  Man, the guilt I have carried around my adult life for NOT being more mature is immense.  YET, this kid is 13.  That's too young to know how to be "mature" like that.  I wish as kids we knew that and could let ourselves off the hook instead of feeling guilty about it.  Its a lot of pressure.  AND, I understand this person's jealousy.  I don't feel jealous today, but that jealousy ruled my childhood.

Anyway....just interesting when I find things I can relate to.

Food......

Well, first, lets remind everyone that I am NOT a diabetic.  But I don't remember anything different.  I grew up with a sister who was type one and the "regiment" of control is second nature to me.  As an adult who has not lived at home OR with my sister for over 25 years, I still have all of the old eating habits.  Ok, for example. I get up every morning and at some point need to eat breakfast.  Its just not so simple for me though.  I think "ok B, what is your fruit exchange going to be, or maybe you need to add a protein to that"  Or another favorite "i would like to put sugar in my coffee, but that's a no-no".  I have so many RULES around what i think is acceptable to eat because I have so many MEMORIES of what my sister couldn't eat in all of those early years.  Sometimes I just don't eat certain foods because i know my sister can't (or honestly, probably could now, but 25 years ago, the rules were different).  I am deathly afraid of deviating from the way i was taught to eat with my sister as a kid.  For SO many reasons...the biggest being that I feel like SHE didn't get to grow up and go "away" from it, so how can I?

I have things about food and other people that annoy me and no one understands it.  When I meet friends for breakfast and they order orange juice...like a super GIANT glass of orange juice, I can barely contain my horror!  I mean, do they KNOW how many "fruits" that is??  I want to give them a lecture that, at most, they could have a half a cup of orange juice (and seriously, I have even started to change my memory of that rule to now think maybe it was even only a FOURTH of a cup that equals a "fruit").  Some of my unlucky friends actually GET the lecture from me, and they stare with a blank look on their face at my passion for this.

That happens to me all the time.  The PASSION which I will unload on some poor unsuspecting person that would dare to not be thankful that their pancreas just casually produces the insulin they need to process whatever they put in to their body.

And so, it seems that people RARELY ever "get" me.  At first I SEEM normal.  But, i have this hidden disease that has no name.  I grew up in a Diabetic household where it seemed food both kept my sister alive, yet was the cause of so much heartache.  If we got it "wrong", there were repercussions.  There would be an insulin reaction and those scared me so much as a kid.  When they happened in the middle of the night, my brother would get in my bed and we would lay there together and listen to my parents in my sisters bedroom trying to handle it themselves, and when they couldn't, call the paramedics.

THAT memory....clinging to my baby brother in my bed in fear, waiting for my sister to be "ok" is what keeps me from being able to freely make food choices.

Are there any other siblings of type 1's out there that have felt this way????

Trying To Be Heard.....

So, here has been what's on my mind lately......

I have been thinking that for most of my life I have given no validity to the idea that growing up with a sister who is a Type 1 diabetic may have also impacted ME.  Recently, I am allowing myself to think it had more of an impact that I yet realize.  THIS is what I am finally coming to understand a month before my 45th birthday (better late than never, right?).  I am only NOW realizing how my family dynamics may have affected me.   I continue to believe that I don’t “do” enough to make up for the fact that I am not diabetic and my sister is.  

A good friend recently made a comment to me that seemed to resonate.  She said “B, your sister has built a full life and is happy, you on the other hand are living like the Diabetic.  You can’t let the guilt go.”  Maybe she’s right, but how do I accept that I am not the Diabetic, and the sister I love so much can’t escape it?

Well, lets start with the beginning, what I remember from my perspective, my sister's, I am sure, is different!

When I was 9 years old, my younger sister who was 6 at the time was diagnosed with Type 1 Diabetes.  At the time it was called Juevenille Diabetes.  It was in the summer, I was away at camp when the “event” happened.  My sister went in for her kindergarten checkup and was sent immediately to the ER and admitted to the hospital.  I didn’t know any of this, of course, because I was happily up at summer camp worrying about what I would make at crafts that day.  While I was gone, so many changes took place.  My parents, specifically my mom, had to absorb the news.  They had to accept all of this information that was now being given to them about the lifelong disease that my sister would fight, and their responsibility in keeping their child alive.  They had to learn about insulin and how the body absorbed it, blood sugar levels and what they meant, how to give a child a daily shot, the proper diet that went along with certain types of insulin to give, and how to actually give a shot.  But, I didn’t know this.  This is what I knew.  I was the oldest child.  I have a younger sister who is 3 years younger than me, and a younger brother that is 6 years younger than me.  I knew that I was the oldest child, and oldest children tend to feel the center of attention.  I know that when I got home from camp, ready to enlighten my family on how important and relevant all my activities had been over the past two weeks, my family was light years away.  I can’t remember exactly how they told me, to be honest.  I remember coming home and finding out that my sister had been in the hospital.  Which I didn't completely grasp because she LOOKED fine.  But, then the evidence of the hospital visit started to become clear.  There were PRESENTS for her all around.  

That is what I remember, how unfair it felt that she had presents.  Its hard to even write that now.  I don’t remember understanding what “diabetes” meant.  So, while my parents are tactfully trying to navigate through this new world we were now a part of, I didn’t understand what was going on.  

We entered into a new routine, which i know was more gradual than I remember, but I think I lumped about a year of memories into one group.  There was now a “production” that took place all day long.  In the morning there was testing the blood.  So, a little 6 year old now had to wake up and prick her finger.  I don’t even remember what method existed in 1975 for this, but I am sure it sucked.  I am deathly afraid of needles, and to comprehend that my sister had to stand there and “take” it was beyond what I could absorb.  I couldn’t fix it, so I denied it.  I couldn’t “take” her pain, so it was easier to pretend it didn’t exist.  It breaks my heart to say that too.  I wish over and over that there were stories of my strength and relevance as an older sibling to this process.  I wish I had demonstrated compassion instead of jealousy and fear.  Because bottom line, I was so jealous of the Tectonic SHIFT in the dynamics of our family and the object of all of the attention.  I was completely unprepared.

So, it seemed to me that days were now filled with the anticipation of needles.  I was so secretly relieved when the the day did NOT involve my sister having to stick another needle in her body.  I probably loved that outcome more than she did.  But, even then, it occurred to me the irony in this.  While I didn’t want her to have the pain of the needle, I wanted to have the information that a finger prick delivered.  I wanted to know that she was “ok”.  Of course it goes without saying whatever I felt can only be a fraction of what my parents felt, but, they don’t really talk about it, so, I can’t really comment on it.  But since we NEVER TALK about any of this, I guess I never processed it all, I just let it all sit inside my head and create stress and worry!

And, then there was “dinnertime”.  Before dinner, a shot had to be given.  I just remember it was awful.  My sister didn’t want a shot (who would?), and she cried.  My parents, I am sure, didn’t WANT to give their daughter a shot (who would?), but they had to.  And then it would be over.  And It would feel like we had a few hours of normalcy before it all started again.  

For a while, I know that I thought it would come to an end.  That things would go back to the way they were.  I guess that’s the denial phase.  

I worry every single day about my sister.  I feel guilty every single day that I wasn't the one who is diabetic.  I measure everything in life relative to what she endures.   I feel my problems can't 'compete' with her disease.  Honestly, I feel alone.  I have looked for support groups for siblings of type 1 diabetics to no avail.  So, I took to the "blog".    

Maybe there are others out there who'd be willing to share.