Wednesday, October 20, 2010

FOOD (Part 2)

I am writing this post as a follow up to my emotionally charged post yesterday about my relationship with food.  It seemed to generate a lot of in depth powerful comments.  I feel the need to address some of the questions/issues that were brought up. 

My post yesterday was every bit true.  I have hit an extremely bumpy stressful road in my life as of late and its of course effecting my ability to eat.  Everyday  has been a hard task.  My life-long food issues are extremely difficult to explain.  I've seen a lot of doctors and specialists but all to no avail.  I've seen around 8-10 dietitians in the past few years and none of them have said anything that helped.  Their common response is to try and find ways to just get me to eat more and not understanding the connection between food and how I feel.  

Perhaps I didn't explain myself right yesterday when I went on about WHY I eat so little.  I think I missed the connection between topics.  When I eat, I feel sick.  Simply put.  It can come and go in phases.  This is going to be very hard to explain but I think I should try at least for my own sake.  The only way for me to not feel ill after I eat is by eating minuscule portions.  I noticed many years ago that after I ate I would feel very ill.  As time went on I ate less and less at a single sitting forcibly preventing myself from even getting close to that "full" feeling.  I noticed the smaller I ate, the better I felt.  It's just that when I'm with people I get so many questions which causes me to try and eat more.  I won't feel full, I usually just end up feeling sick.  I've actually asked a few people "what does it feel like to be full?"  because I simply can't grasp what full feels like.  For me I have 3 feelings: Hungry, Not Hungry and SICK.  In order for me to live comfortably somewhere between hungry and sick I began cutting down my portions.  It seems to work (most of the time).  Though after 6 years of doing this, I reckon my stomach must be eensy weensy and every time I try to put more than a handful in there, it results in nausea.

It has forced me to become a grazer which REALLY doesn't work with diabetes but it DOES work for helping my nausea.  Switching to gluten free has been a very big step in feeling better.  I don't like it very much, but I like not feeling sick better.  I suspect celiac is playing havoc with my system, whether those blood tests come back positive or not.  I don't need this to get incredibly worse for me to find that out. 

As far as exercise...  it's a difficult one.  I utilize my temp basal on my pump a lot.  It allows me to exercise (and I exercise HARD) without too much difficulty.  I use temp basals of only %20 for 1.5 hours beforehand.  That's quite low I think but I've found it works for me and allows me to exercise safely (usually).  I also set my temp basal for about %75 overnight to prevent later lows as well.  If I'm out running or cycling or doing heavy cardio for longer than an hour then I have to suck back gels to maintain it.  I've been told at every single CDE appointment that I have to eat more to fuel my exercise.  I correct exercise lows with fast acting sugars only.  I really never follow lows up with food.  I also sometimes use fast acting sugars right before I exercise to fuel it.  Doctors all think this is wrong.  They tell me I should be fueling up with real food and not glucose.  Thing is, this works for me.  And again, you simply  have to look at me and see that I'm not -in fact- dying in front of your eyes.  I LOOK healthy and I FEEL healthy and my way of management works for me.  So why do I have to change it when the only changes that are recommended to me result in nausea?

This was the point of the post in the first place.  Maybe people think it's wrong.  Maybe people manage their diabetes differently with regards to exercise and food.  But maybe, just maybe, those people don't deal with constant nausea when they live that way.  Maybe what I'm doing is actually right.  FOR ME.  Doctors can't seem to figure it out which results in me having to do whatever I can to be normal.  It's an internal battle every single day.  I struggle to find ways to eat more.  I've spent years to find out that eating at night is not an option EVER.  I don't eat much of anything in the evenings.  I used to try, because I was told to.  My CDE (again at every single appointment) would tell me (read: force me) to eat dinner.  I told her over and over again that no matter what or when I ate it, evening meals inevitably and always resulted in nausea.  I can only tell her so many times yet she still insists.  But you know what?  I don't and I won't.  I wish she would experience evening nausea every time she ate dinner.  'nuff said. 

I am surviving.  I am okay with this, I just wish everybody else would be okay with it too.   I always welcome new suggestions, ideas and tips.  I will never NOT try something.  I wish to the ends of the earth I was normal.  I wish I could enjoy eating out with family and friends, dinner parties and meetings. I HATE this.  But I have to do it this way or else you'd see me writing on the couch every day, all day long rather than just every once in awhile.

I will finish this up with a picture from this summer.  I don't have any recent pictures of myself but this one is good because I had just finished a race and I felt great!  You tell me if I look unhealthy and sick.

Thank you for all the support and comments.  It brings a lot of emotion to get this out.

3 comments:

  1. Scully,
    I think you've made a number of very valid points here (again). I know I'm no professional, but I can tell you that pre-celiac I felt the same way after eating anything (even water it felt like). I found that eventhough the glutenfree diet is frustrating at times and limiting at other times, it really made a different. For me, it was slow, but it did help.

    It sounds like you're doing what you need to make life more livable and no one can tell you otherwise. Until someone walks a mile in your shoes they cannot know what you experience.

    Take care of yourself and do what you need to do to make it work. No one knows your body better than you do, bottom line.

    We're here for you and wish you only the very best this world has to offer.

    ReplyDelete
  2. I think you look great! Sometimes doctors forget that not everyone is an identical replca of everyone else, and sometimes it takes a bit of creative thinking to get a result. You say that your stomach must be tiny, well, what if it is in fact physically smaller than a normal adult tum? Have you docs considered that? Anyway, I think if you've found a way to deal with this condition then high five to you! :)

    ReplyDelete
  3. You look awesome. Healthy, strong, and the perfect weight. I don't feel what you do, but, despite a normal thyroid I don't eat much (and have 20 extra pounds on me). People are always bugging me telling me to eat more. But, I don't feel well if I eat like everyone else...My doc said I didn't eat enough calories so I ate more (1400 per day). I am really active but, gained weight eating that many calories. So now I eat like 800-1000 which dietitians say is crazy...but, now I tell people to shove it. I'm sorry you have this mysterious issue...I really feel for you. It sounds really difficult to live with. They way you write about it makes you sound really graceful and intelligent and strong. Glad to sort of know ya :)

    ReplyDelete

Due to low life spam monkeys I am forced to moderate comments and I hate it (But I hate spam monkeys more)