Saturday, June 5, 2010

Unhappy Anniversary

On June 4, 2007, I went to bed feeling a little rundown but otherwise fine. I'd gotten everything packed for our trip to Chicago, leaving the next day. 

At some point in the wee hours, I woke up freezing cold and couldn't stop shivering. I stumbled to the bathroom, barely able to be upright, then went back to bed, huddled under as big a pile of blankets and quilt as I could manage. That lasted a few hours, and then, just as suddenly, I was drenched with sweat and my pajamas and sheets were soaked. By the time the alarm went off, I discovered I literally couldn't sit up in bed much less navigate an airport with a toddler. My head hurt so bad it felt like it was going to explode. 

We canceled the trip. I wasn't able to get out of bed for at least 12 hours, and while I probably should have gone to the ER that morning, or later that afternoon, I told Scott I was too sick to go anywhere. I finally made it to the doctor three days later, on June 8, and was diagnosed with bilateral pneumonia.

And that, essentially, was the start of my chronic illness. The pneumonia eventually cleared up, but I never got better. The extreme fatigue that kicked in in June 2007 has never improved. I've developed new symptoms along the way, but I still remain as much a medical mystery as I was when I started this blog in October 2007. 

When I got sick, it was just supposed to be a temporary thing. I even managed to keep Ellie at home with me for the first month, although she spent the whole time watching TV while I lay on the couch, getting up only when she needed a diaper changed or food. I was completely dysfunctional. Then I got admitted to the hospital in July 2007, and we realized that I was in no condition to take care of Ellie, so we enrolled her in KinderCare for what we were sure was a six-week-maximum period to allow me to recover. Three years later, she's still in full-time daycare (albeit a much better program that's more preschool than daycare), something we never would have believed back when it all started. 

People tell me all the time, "You look great! You must be feeling much better!" And I just smile and don't say anything because, really, the vast majority of people who say that mean well. They want me to be better. (Not as much as I want to be better, but still, they really do want it.) 

Thanks to those of you who have been offering me support right from the beginning, and to those of you who share your own experiences with me, and to those who haven't found my blog yet but will at some point. I hope I can offer even half as much support to others as I've received through this blog. 

Thank you.  


Herrad said...

Hi Aviva,
Good post, painful story, you have been through such alot.
Thanks for sharing.

Anonymous said...

Hello Sick Momma,

My boys were 13 and 15 when I got sick. They were able to navigate themselves through some of the bad times with their Dad's and my Sister's help. Even though they could do their own laundry and make their own lunches, it didn't take away the fact that they needed their Mom. I understand your frustrations and sadness.

Aviva said...

Hi Herrad! Thanks so much for your kind words! xoxo

Aviva said...

Hi Mo, I suspect that it doesn't matter how old one's kids are, a mom (or Dad) would always feel bad about the things they wanted to do for their kids but couldn't. Even if the kids are grownups. :-( Sorry you've gone through the same frustrations. xoxo

Queen of Optimism said...

My heart hurts for you, Aviva. It takes so much courage to manage your health while also caring for your family and sharing of yourself so generously both on and off line.

I know how heavy parenting guilt can be and I hope you can lift some of that off of your shoulders. Your body is already aching enough. I hope that comes out the way I mean it to - I just want you to know that you are a wonderful mother.

many, many xoxoxoxox

Anonymous said...

hi aviva,
came across your blog quite by accident, typing in the word 'alinia' for my daughter who has lyme disease.
i didn't go through and read all the posts but i had an 'aha' moment. have you ever been tested by IGENIX lab in california for lyme disease? not the standard tests which are less than 50%accurate. nicole is 17 and has a blog, '
i had eerily similar symptoms to yours when nicole was 4 and we were living in CA. i know what it is like to feel so tired you cannot function AT ALL and as a mom that is sooo hard. nicole is now 17 and an amazing, strong, vibrant teen. but with lyme disease, not diagnosed for 2 years. she is on the road back to health but it is an everest to climb. i would implore you to seek out the igenix test and look at ILADS web site. or CALDA site. just print the checklist and see where that leads. you probably have loads of people sending 'stuff' like this but something in my gut told me to write to you. your daughter loves you know that:)
take care and hang in there, chris powell victoria bc