Friday, October 26, 2012

Notes of a Celiac ... today ...

Know what I did yesterday ~ I stayed home from work after letting the exhaustion of dealing with a upset stomach keep me up most of the night, and after a couple messages sent out here and there, I laid down and I slept all day and into the evening ... I only forced myself up a couple hours to spend some time with my guy ... and then back to bed, and sitting here right now at work I could put my head down and fall asleep.  I am so exhausted and depressed and I know it is because I know I have
stuff to figure out and get it going, and I simply am tired of it all.

I am tired of having Celiac Disease.

I am tired knowing that there is so much more to it than simply staying Gluten Free (that THAT is only a small part of the whole picture).  Reading, researching, and becoming more overwhelmed at steps really I need to take ~ or stages I need to get through - this is a great article on stages we may be at ... while I wish I was a number 3 I think I totter between the 2nd and 3rd stage, and I feel crappy, I know I need to move on.

I am tired of knowing I don't really have any concrete answers or plans to feel good in the works yet.

AND I am so so tired of not feeling good anymore.  Just tired.

I am frustrated that I have so much I want to do, so much I want to write about, so much I want to get going, be a part of ~ and I have been struggling even to type this simple post.

I am angry about things happening in our Celiac Community - like what is happening to Jennifer Esposito - great posts and details on it written by Gluten Dude  and CeliacinChilliwack

It gets really tiring when the only people who truly understand Celiac Disease is the people who HAVE CELIAC DISEASE!  And then reading comments of those that do that also put THAT theory to the test.  I find myself reading and reading and reading and mostly shaking my head ... and feeling close to tears (this not feeling well has the great side effects of being over emotional, anxiety ridden, and depressed - just lovely) at the ass-backwards way people look at those who need to eat GLUTEN-FREE.  I know a lot of this damage has been caused by those claiming to go gluten free for health benefits, weight loss, jumping in on a "fad" wagon.  It's frustrating ~ because it makes it harder for those of us trying to live and survive with Celiac Disease to get the help and support we need.

As Gluten Dude points out we are not VICTIMS ... as the poorly written Article on Page 6 of the New York Post wrote ~ which I won't even link to because it was so badly written full of untruth and inconsistency.  Shame on the New York Post for letting this Article out to print.  We are "sufferers" or "survivors" and we need the support that goes with this, I don't need someone to hold my hand or pat my back and say "there now" ~ I need people in my life that support my goal of becoming a better me - WITH having Celiac Disease, having some understanding of what I am facing daily and taking me to task if I don't have the same interest in their lives.

There is so much I want and need to accomplish - from minutes sitting waiting for me to put them together (from the recent AGM of our Chapter of the Canadian Celiac Association), blog posts I have drafted to write up about restaurants - like Jasper's Evil Dave's Grill to Edmonton's very Own Brits Fish and Chips - great experiences I had there, and others ... simple recipes I have whipped up at home for simple suppers - like Shepherd's Pie, stews and chili's ... and I want to write more about food - all foods and what they do or do not do for us, because if you are a Celiac or someone that has a gluten intolerance or sensitivity - your life and health revolves around food.  I want to write posts about our recent adventure taking a DISNEY Cruise and what advice I followed from sites like the Allergy Free Mouse and others, and tidbits I learned on my own.  So much I want to do ... so little time and energy ...  

Today I could just sleep ... being at work ~ where I can write a blog post but not take a nap ... probably is a good thing ha ha, at least I got a bit of what is in my head noted down.

I am tired today ... tired of being a person with Celiac Disease ... but then again tomorrow is around the corner and we shall see what it brings. 

1 comment:

  1. You're doing good work for the celiac community and we are all grateful. :) I may not live in Canada, but I have met so many wonderful Canadians who are full of love and compassion for their fellow celiacs. I enjoy your blog posts and you WILL get to all those writing projects in time. Just view it like eating the elephant. One piece at a time.

    Rock on! Keep the faith that you will feel better in time. I always believe I will feel better and better. It sustains me and fuels me.

    We are NOT victims, we are warriors.;)
    Take care!