Friday, August 24, 2012

Down Days



I think we handle our allergy situation well.  We do lots of cooking and label reading and we are careful to monitor all of Bee's surroundings for allergens.  We've accepted our differences and moved on, with the focus of keeping her safe.

But there are still some days when I have a down day.  Those are the days when I feel depressed about all of our differences.  I look at Bee's future and know that she'll have to be vigilant every single day of her life.  She'll have to constantly let others know about her special needs and there won't be a day that goes by that she can forget and just dive right in to a normal life.  The limitations can be depressing.

Then I start to feel overwhelmed as I wonder how we're going to continue our allergy free life day in and day out.  Did I call that restaurant?  Did I read that label?  Did I double check that recipe?  Do we have our doctor's appointments scheduled?  Are we ready for more allergy tests?  Yes, it's so overwhelming to plan ahead for every meal and every outing and to question, question, question.  I have lists and I read labels and I scour the internet for safe recipes.  And sometimes it gets so very old and I just feel like I don't know where to begin even now.

At that point, I feel stressed.  I worry and allow fear to take over.  On those days, I don't want to go anywhere or be around anyone or even think about eating out again.  I don't feel like I can read another label and the stress keeps me from thinking straight.  Sometimes I can't even recall Bee's extensive allergy list and I feel panicked and worried that I'm forgetting something or missing something.  I feel sure I've overlooked something important.

As all those feelings hit, I feel such a sadness that we can't be carefree and enjoy life without all the worry and planning.  I remember when we used to head to restaurants as a family or take short trips without worrying about ice chests full of specialty foods.  I remember going to birthday parties without a single thought.  Simple things like going out for ice cream or enjoying a picnic at the park or a playdate at a friend's house used to be so easy.  I didn't have to be hyper vigilant.  I miss those days.  I feel such a sadness that I have to view everything as a potential danger and I have to spend so much time planning ahead and educating everyone about Bee's allergies.

So, even though we've been doing this for several years now, it doesn't always feel like it has gotten easier.  Some days it's just hard to process the changes we've made and it's difficult to keep moving forward.  I just want to wish things back to the way they were or have a do-over.  This is not what I envisioned for our family.

I don't experience the days of sadness as often as I used to, but they still come.  Some days, all the emotions and stress and worry compound, and I feel like I can't continue.  I have a feeling that I'll always have days like these.

But when I do start to feel overwhelmed, I just look at Bee and remind myself of how far we've come.  Seeing her smile and hearing her giggle as she plays serve as encouragement.  She's doing so well and we've learned so much in just a few short years.  She's worth all the changes and the sacrifices.

Still, there's just a bit of sadness when I look at her as I wonder what challenges she'll face as she grows and learns to become her own advocate. 

11 comments:

Cindy DG said...

Tears in my eyes as I read your post. I know exactly how you feel. Sigh...I just found your blog and knew it was meant to be with the title....Oh hives...I hate those hives! They appear from so many unknown things on my little guy. I came to invite you to link up any gluten free recipes or information you have on your blog at our Gluten Free Fridays. I am happy to connect with another allergy mamma! :)

You can find this week's link up here: http://vegetarianmamma.com/gluten-free-fridays-recipe-party-2/
Also be sure to link up your blog on our Gluten Free Bloggers directory. You can reach the directory by clicking the "glutenfree bloggers" tab on our blog! Thanks, Cindy :)

Lexi said...

Thank you Cindy! I visited your blog and linked up! Thanks for sharing the link!

Mama said...

I am with you too. Our "normal" is never really normal and sometimes it can be overwhelming. I wanted to let you know that we got the Vanicream and are trying it out. Did you guys have problems with stinging after you applied it?

Lexi said...

We haven't had any problems with Vanicream. I'm not sure why it would sting. If it stings then there may be something that is irritating in it. I've also used Gold Bond Lotion and that has worked when Bee was hot and rashy in the summer.

Mama said...

David was complaining that it stings after I put it on him. I was thinking that is was because he scratched so much that there are areas of open sores. Maybe I will try the Gold Bond lotion. Do you guys use rice milk? I tried making allergy friendly scalloped potatoes for dinner....we shall see what the verdict is.

Amber said...

I'm just reading this today and it couldn't have come at a better time. As we are still in the early part of our allergy journey, I definitely find myself feeling down. It's so overwhelming!!!

Lexi said...

Mama-Someone else mentioned that Vanicream stung their skin. I would definitely try another lotion then.
I just bought a new one yesterday that we are going to try out. If it works out ok, I'll post about it.
I use plain rice milk in much of my cooking. With the scalloped potatoes I bet they will turn out great if you add enough salt and pepper. I haven't tried making scalloped potatoes yet but I should try that! We just figured out a mac and cheese that the kids like.

Amber-I know how you feel! It is not fun in the beginning and some days it feels like it never gets better! It has been so worth it to us to make the sacrifices and changes and see the improvements. But it can be miserable most days!

Mama said...

Lexi--The scalloped potatoes were actually really good. I was surprised at how good they were. As for the lotion--it has been helping a LOT. Now that some of the open skin has healed it isn't stinging him anymore. He has actually been asking me for the lotion! I have eczema on my hands--not like David's--but it has been great with mine too.

Lexi said...

That's great! You'll have to share the recipe!

Yes, when Bee had very inflamed and raw skin everything seemed to hurt. Once we broke that cycle things got so much better. Keep at it! We've found that by staying on top of it we've been able to be one step ahead and things are a little better now.

Kim said...

Everyone has down days about different things, and with the amount of things you need to worry about, it's perfectly normal to.
From everything I've read on your site, you approach the challenges your family has been given with remarkable strength and overall positivity.
Bee is also quite young, and there maybe a chance that she will outgrow or have less severe reactions as she gets older and her immune system matures.
At the end of the day, she is lucky to have a supportive and informed family, especially her mother!

Lexi said...

Thank you!
We are hoping and praying that Bee grows out of many allergies or that they become less severe. Our doctor is very hopeful that things will improve.
We do try to be positive and we have lots of support with friends and family which helps a lot. But it is never fun!

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