Holiday Blues and PANS

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Holiday Blues and PANS

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I held off writing for awhile, due to some adventures and lost thoughts while juggling my daughter's health with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Association with Strep) and a final realization about something.

The adventures weren't anything wild, just distracting and resulting in nothing more then days spent in life.  It left me feeling disappointed that I haven't accomplished anything and I like to make everything I do in life count for something.

My daughter's diagnosis changed from PANDAS to PANS (Pediatric Autoimmune Neuropsychiatric Syndrome) which is good because the strep is no longer registering in her blood stream.  However, she still has several other viral and bacterial issues which cause her entire immune system to be at war with itself.  If you think of pans, you think of cooking, heating, noise and other descriptive words.  With her and PANS it's not really that much different.  She is a walking cooking experiment.  You have to constantly watch, watch she eats and make sure she takes her supplements.  Like a pan the food can come out good and tasty or black and yechhy.  In her case if anything isn't watched, I have an overtly moody, sleepy, non-focused hard to work with child.  (Oh..yes...she's 11 and blossomed as well!) It's easy to watch your pan and adjust things to make sure the food will come out good.  But with PANS you are simply grateful for the mild days. In my case I'm usually thankful for the days she "is" on antibiotics.

Right now, she usually won't eat any meals with me and when I go to light the candles for Channukah. she won't participate with me either.  No, there is no one else.   So I spend most of my meals by myself, with nothing to look forward to and usually lighting the candles by myself.  Bah humbug!

The final realization is that it is 5+ years since my Spike passed away.  This year I'm really missing him with the holidays and there's no events planned as I don't know whether my child will be able to participate.  I would love to know what adult time having adult conversations would be like.  There are a few I call friends, but most are out of town or having family adventures of their own.  I can't travel as I don't have the funds.  Basically I'm trapped in my home where my biggest adventures is what cleaning project I decide to tackle that day.

I wonder what it is like to have something to look forward to....

All my best,

The RoaringMouse

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frogger16

You've dealt with so much and continue to deal with more. I was reading in Denise's book\"Your Caregiving Lists\" page 99 about \"Reasons you Can Keep Hope\" and thought of you. One reason you \"keep hope\" that she mentions is: \"Hope lives in your heart. And, you've got the biggest heart out there.\" Im glad to meet you in AM chat & look forward to getting to know you. Thanks for all you do!

CathyJ

Roaring Mouse, the feeling of being in the house and isolated with a goal of looking forward to something besides cleaning surely resonates. Sometimes, I wonder where the day went and what I didn't get done. And, it gets too easy to think, I will do that tomorrow...tomorrow...We know this moment will pass but it sure is heavy when it is here. I also share your sentiment. I lost a spouse 20 years ago. The 5 year mark was one of the hardest for me. Sending hugs and love and thanks for sharing.