Last night, as I lay in bed trying to discern the reason I'm not quite into the holidays this year, it came to me. Although, I've felt worse some years...and been mid diagnosis some years...I've fought hard to get out, get baking, to grasp the little things and play them up. This year, we have our gifts together and the tree up, the elf is finding new spots to hide, the kids are giddy with excitement...and yet the baking isn't even done yet.
Every time I think of it, the nausea is still too much.
And I feel down. Really down.
As I lamented to my husband the lack of excitement, and that all I really want to do is curl up and enjoy the days with him and the girls, it occurred to me that my lack of social graces is mostly inspired by...shame. After 10 years...I have a diagnosis. I'm intolerant of or allergic to corn. I have Celiac Disease. And the two conditions have triggered multiple other identified intolerances. I've just been treated for H pylori.
I should feel great, right?
I'm exhausted. I'm sleeping more often than a 3 month old. My abdominal region feels crushed, bruised. I'm desperately trying to eat enough to keep the scale from dipping under 90 lbs. And at my last dr appt, the dr flitted her eyes around the room, then shrugged and buried her nose in the notepad in front of her, not even writing...just tapping.
That tapping, the not meeting my eyes, the little frown...the shrug and release to a dr I've never met who can't see me for a month...not reassuring. There's a diagnosis missing.
In the past, by Christmas, I've been optimistic. I've thought I had the answers I needed, and believed I was on the mend. I could answer questions positively and clearly, or simply evade them by pretending I wasn't that bad. This year, I'm lighter than I've been in at least 5 years. I can't stop bleeding, and I'm not buying perimenopause 'nothing to worry about, just be patient'. The nausea and cramping are really bringing me down. I'm not playing poor me...I'm trying to simply state the facts.
I'm also worried about my daughter who has developed trichotillomania, or the urge to pluck out her eyelashes methodically. I know this is the right diagnosis, although so far my attempts to get her help have not really led anywhere other than "Tell her to stop!" Which, of course, I've tried. :P
While I love hanging out with family, and I would love to have a get together, or attend one, I've felt up to either for a full...oh, five? Fifteen? minutes at a time over the course of the past 3 months. I'm really hesitant to make plans because of how bad it makes me feel to leave early or change my mind last minute. I'm haunted by memories of discomfort and reactions. I'm withdrawing from questions because I have no answers. And I'm avoiding...because I'm finding that after years of this whole sick-at-the-last-minute business, even those I love are starting to think I'm choosing others first. When the truth is, I'm embarrassed that I'm still sick, that my stomach is threatening (and I'm now aware that I'm the only one fighting to keep her digestion under control), that I don't have answers and am starting to give up finding any.
(I didn't say that I'm giving up. I'm saying that I'm starting to give up hope of finding answers. There's a huge difference, as I found myself trying to explain to my husband.)
In past years, I've daydreamed about hosting parties. I've enjoyed getting together, if only for an hour, with loved ones and family. I've told myself that this will happen, someday, when I'm better.
This year, I'm not so sure.
My goals for the new year are to get the house clean again, to get food under control, to get help from the medical community.
I thought by now I'd be farther in my journey. It's hard to admit to myself that what I thought was the bigger picture is only a few puzzle pieces. And I'm wondering if the missing diagnosis could possibly explain both the food reactions and the menstrual irregularities.
I suppose you could say that I don't want to ruin anyone else's holiday with my own frustration and shrugged shoulders. I'm disappointed that the answers gained over the past few years simply aren't quite good enough, and I'm ashamed of where my limitations have led me, and uncertain what lies ahead.
So this year, while I'm thinking of family and friends...I'm going to be happy that they are celebrating. I'm sending best wishes. And I'm hoping that they understand why I'm playing the Christmas Card friend (which reminds me...I never did get Christmas cards mailed...make that a 'New Years card friend') instead of a hostess. I'm going to focus on what I am up to instead of worrying about appearances and what I'm not up to.
And I'm going to try really hard not to feel guilty about it. It's the holidays, and even if I'm still climbing my way back up from my last reaction and the bout with H Pylori, and still seeking answers, I'm going to salvage what I can...even if it means sacrificing what I wish I were doing. I'm going to enjoy Christmas, regardless of the social aspect...or lack thereof. And in the new year, I will find healing, and strength. And maybe we can get together 'just because', and celebrate friendships and family without the stress of holidays as an excuse.
If there are other readers struggling to find missing pieces and feeling discouraged, I just wanted to let you know you're not alone. Let's band together online, and embrace our strengths...accept our weaknesses...and just enjoy the day.