Wednesday, October 7, 2009

Mystery solved

*UPDATE 10/8/09* OMG. I called my doctor with questions today, and she flipped out because the nurse gave me bad info. She said that, yes, CMV does "reactivate" but that doesn't mean you get sick again. She has no idea why I was told what I heard yesterday. The real issue? Vitamin D deficiency. I'm on a prescription supplement for the next 12 weeks. I'm very, very relieved, but also? PISSED OFF!

I am now utterly mortified by what I wrote below, but I'll leave it so you can make fun of me.

I really should be going to bed now. The little one had a night full of bad dreams and finally had enough around 5 a.m., when she demanded to go to the kitchen and play with paints. But I kinda need to write this down, so that I'll come back to it and remind myself that I have some serious work to do.

I've written numerous times about what I believed was anemia (see here, here, and here). I have these "episodes," as I like to call them, where I suddenly feel very tired, like lie down on the floor tired, often for days or weeks at a time, accompanied by a vague nausea. Since I was told I was anemic around a time that this happened, I always assumed that subsequent episodes were anemia as well. Turns out the first one probably didn't have anything to do with being anemic.

In the summer of 2001, back when I was still a lowly optician, I became strangely ill. I kept having a recurring low-grade fever, that would arise for a day and then go away, and then come back again. Headaches. And the most god-awful fatigue. Back then, my husband and I only had one car, and he used to pick me up from work every day. And I can remember getting in the car, and just collapsing in tears because it had taken so much effort just to get through the day.

I had a great doctor back then, and when I told her what was going on, she gave me the biggest round of tests I have ever been through, but we came out with an answer: cytomegalovirus mononucleosis. CMV mono is caused by a different virus than the usual "kissing disease" mono (that's Epstein-Barr), and nearly everyone has been infected with it at one time or another, but not many people get sick from it. Except those with compromised immune systems, such as AIDS patients, and, apparently, me.

There was and is no treatment except rest, and I was out of work for six weeks. Six weeks of ungodly boredom, and a stupid determination to get things done even though I was supposed to do as little as possible. I would feel marginally better one day and decide to do laundry or go for a walk, and then wouldn't be able to get out of bed for the next three days. I think I read the entire internet and saw every episode of Charmed, ER, and Buffy the Vampire Slayer that existed up to that point.

Going back to work was hell, because you don't just wake up better one day. You take an average of how you have felt over the last week, and if it is above a certain level, you go, "okay, better go ensure my continued employment now." But I got better, eventually, and forgot all about it.

So the other day, as my bloodwork is all coming back normal, my husband says, "What about the CMV - could it be back?" And I went, "Nah. Impossible. Once you're done you're immune, like chicken pox."


CMV is actually related to the chicken pox virus and other herpes viruses and, like them, cycles through periods of dormancy and what is called "reactivation." In reactivation, the soul-crushing fatigue and nausea return, as well as other symptoms such as headaches. The only treatment is rest.

I never knew this. No one ever told me that once I got this virus that I would be living with it forever, that those weeks of weakness (I remember one day not having enough energy to pick my feet up when I walked; I would shuffle from the couch to the bathroom and back, very, very slowly) would return to haunt me over and over for the rest of my life. Anemia or a thyroid problem or vitamin D deficiency, all those things I thought this could be: those are treatable. Endable. This isn't.

I'll grant you, there are plenty other chronic diseases one could have, and I'm damn lucky to have this one. Many, many people have it much worse and I've met some of them recently, breast cancer survivors I wrote about for my magazine job. Those women deal with a hell of a lot worse, and do it with grace and aplomb, so believe me, I do have some perspective.

I was talking with my husband about it tonight, and when he asked what the treatment for it is, and I said "rest," we both laughed. I'm a mom with two small children and a job as a monthly magazine editor. I don't get to rest. Taking a week to stay in bed isn't an option. The only thing I can do is to create as much of a buffer as I can, by being as healthy as possible. I have to eat better. I have to start exercising. I have to lose weight. Those things are the only hope I have of fending off the worst of the reactiviation episodes. And that may not even work. And I've never accomplished them before, despite years of good intentions. But it's all I have.

Off to bed now.


P. said...

I am sorry to hear about the CMV and the recurring fatigue, etc. from it. That really sucks. I wish you the best in improving what you can. My husband has the first test this morning to diagnose what may be a rare autoimmune disorder, and I am realizing the benefit of support in things like major health issues. That has always been the the hardest for me, to seek out support, being that I am a loner by nature and my usual take on things has just been to pull myself up by my bootstraps, power through, put nose to the grindstone, and do it myself, dammit. But some things are bigger than we are and can teach us about asking for help, finding support systems, etc. Anyway, hope you get better and I'm pulling for you.

Mosquito Farms said...

I was diagnosed with Chronic Fatigue Syndrom, so I always feel like I'm sleep deprived. Granted, I don't believe my fatigue is at your level on my worst day. I don't have any nausea or headaches, thankfully. However, I did find once I was able to lose about 50 pounds, I wasn't as tired. I wasn't full of energy, but I didn't feel like a sack of grain either! Of course, it took forever to lose and I eventually gained it back and am struggling to lose it again. *Sigh* It's tough, but if you keep in mind that this could help you, it may make it more bareable.

P. I know what you mean about being a loner, yet needing that support in certain situations. I studied social support a few years back in college and read many many studies that showed that online support is just as good (and sometimes better) than face to face (or group) support. Some people argue that it can't be because..come on, you met these people online...what can they know about you? Through the Internet you can reach people that are struggling with your same worries and DO know what you're going through. I hope you and your husband get good news (as good as can be).

Vicki W said...

Good news, you figured it out! Hopefully you can structure your days to force yourself into some amount of rest to keep this from coming back full blown.

Judy H. said...

I, too, know what it's like to live with a comparatively mild chronic illness -- I was diagnosed with Fibromyalgia almost 11 years ago. And what I can tell you from several years on, is that sometimes it sucks -- people don't believe you're sick, you can't take time off "until you get better" like you would if it was the flu, when you do get an actual bug it hits you harder because you don't have any reserves -- but now that you know what it is, you will learn to cope with things, learn what works, and it isn't as awful a future as it looks like right now. And remember, your kids will probably take less frantic energy as they get past the itty-bitty stage. That will help, too.

Good luck. I know it's scary and depressing and even just plain old tiring to look at the future right now, but you can do it!

whitey said...

Just was reading an article about Vit D deficiency, they are finding that we do need more than they thought. I was going to get some to see if it helped with the winter blues that soon will encroach on my life. I had mono in the 4th grade just remember sleeping mostly.

Diana said...

I'm relieved too! I hope the vitamin D supplement works for you.

Diana said...

Your post shook me....I had an episode with CMV and I had a stillborn son because of it. We only found out that is what is was AFTER the fact. In pregnant women is is deadly. Causes lots of birth defects, blindness, deafness and mental retardation. You were not prenant when you contracted it so that is good. I thought you would want to know this. I thought I had the flu at the time and only found out differently after I lost my son and had the blood Titer. FYI

debra said...

For many years I though I had either cronic fatigue syndrome or fibromyalgia only to finally find out it was a vitamin D deficiency. I took a perscription strength dose of vitamin D once a week for 10-12 weeks and I have to tell you IT CHANGED MY LIFE. No more muscle and joint pain, no more so tired I can't stand up feeling. My whole mood and outlook changed. It was, without a doubt, the best thing that happend to me in a long time.
I hope it works the same for you.