Monday, December 24, 2007

Clinical Fatigue vs Being Tired

I have to admit I had no idea about the difference between clinical fatigue and normal (even extreme) tiredness before getting sick last summer.

Hey, I had a baby. I had those early months of never getting more than a few hours sleep at a time. I walked around in a fog like every new mom does. And truthfully, I couldn't imagine that there was something that people could have that involved being even more tired than I was then.

Now I know.

But I have trouble trying to explain it to people.

"Maybe you're sleeping too much," some people say.

"It's because you're so inactive -- you need to get some exercise and then you won't be so tired," others say.

"I'm really tired too. My kid was up all night being sick, and I didn't get any sleep at all. I know exactly how you feel."

Well, not really. (Although I have great sympathy for parents up all night with sick kids! It is exhausting, no question.)

Clinical fatigue is more of a bone-deep exhaustion that lasts for weeks, months or years. I need about 12 hours sleep a day just to function at a bare minimum. But when I wake up, I feel as tired as though I haven't slept at all for weeks or months. (I've tested it -- it is worse if I sleep less.) It's a complete lack of energy that no amount of caffeine will cure. (Although I've given up caffeine, I have tested to see if it helps. It doesn't.)

It's a feeling that I don't think you can really understand unless you've been there yourself. And I sincerely hope that my friends and family don't have to find out firsthand. (My mom, who has myasthenia gravis, already knows.)

But I'm grateful that I've found others, mostly online, who have been there/done that because it helps me feel a little less isolated, a little less alone on this illness frontier.

But I still find myself at a loss of words when I try to explain to normal, healthy people what I'm going through and why it's not just a matter of bucking up and powering through as many people have implied or out-and-out suggested.

And it's not that I'm lazy. Or simply that I'm out of shape from inactivity due to the length of my illness.

It's a symptom of the illness itself, that undefined, undiagnosed illness that I fear will be chronic and not temporary, although I haven't given up hope yet that something will happen and I'll find myself feeling better, slowly and surely.

I'm not sure if that means I'm in denial. Or if I'm just trying to hold onto the power of positive thinking.


Laurie said...

Great distinction! You're right, people who have not had this type of fatigue rarely "get" it--during my worst flares of chronic fatigue syndrome, I have slept 20 hrs a day for weeks on end, to the point where my mother would check on me to make sure I was still breathing...and once I woke up, I would be too exhausted and worn out to even brush my hair. No way to live.

The only thing I can say is that I have found this type of overhwelming fatigue is cyclical...and I hope you begin to experience the "up" side soon!

joan said...

I can't offer much about fatigue or the situation with your illness. I can, however, offer a perspective that is similar in intent, though different in topic.

As you know, most everyone wants to show sympathy by "relating" to (___insert situation ___). For us, it's the tough days, and sometime nights, with our son who has multiple disabilities.

What I have learned over the past 18 years, is that it rarely makes a different to try to explain how they really, *really* do not understand, nor do they want to, how hard an event has been. That their child's "melt down" in the store over a toy is *nothing* compared to my child's "melt down" over an unleashed dog in the park, or whatever the issue is.

What I've learned, and believe to be true, is that **everyone** is leading the best, as well as the hardest, life they've ever lived. If something that seems small from my perspective created great trauma to a friend of mine, it is, for all intents and purposes, equal to my trauma. Mine may sound much worse on the relativity scale, but when they were living that moment in the grocery store, it was the hardest, most ebaraassing, most difficult moment they have lived.

So, although I truly *get* what you're going through, and know that my small stint with whiplash and two years of recovery is not close in comparison, it's all I have to compare it to. Does that make sense?

My point is this. Sometimes, you just have to grin and let it go. Accept the comments, knowing that they aren't helpful, as the greatest gift that person has to offer, and not worry about trying to teach them in that moment. Because for some, like my husband, it needs to be first-hand experience that teaches them what it means. For others, the time isn't quite right. What happens, when you let go of that teaching is that you find out who is ready for the teachable moment. They are in the "I want you to know I care" place. And that's a great place!

ALL of them care, but not all are in the teachable zone.

In the end, I've found life less stressful, less adversarial, and less tiring by not worrying about whether or not friends and acquaintances truly "get it." But when they are ready to learn, I"m eager to teach.

TAke care of yourself.

We're hoping to be well enough to give Ellie her present on Saturday. I'll keep you posted.

Sherril said...

I'm finding my blog to be a great alternative to trying to teach people in my life what I'm going through. I've made them all aware of the blog, and I figure if they're interested they'll read it. If someone says something that irritates me and I've covered it in the blog, I refer them there. If I haven't covered it yet, guess what my next blog topic is?

On the other hand, I'm a firm believer in advocacy as I am able, in spreading the word about how it really is, and in correcting those who are publicly spreading inaccuracies.

When all else fails, or sometimes for no reason at all, I visit
"fun times with chronic illness! this is a place to take the piss out of those who would tell us how to better live our lives. unsolicited medical advice, ignorant comments, should's and ought to's get the greeting card treatment. you've got to laugh or you might hit someone!"

Sarah Wilkes said...

Thanks for this post. (I found it googling the difference between being tired and fatigued.) I have UCTD and am on Plaquenil which is slowly starting to help my severe chronic pain and severe chronic fatigue. Have you ever had mono? I've always wanted to tell people that my fatigue is like having mono all the time (because it's something they can grasp better), but unfortunately I've never actually had mono, so I have no idea if it's actually true. :D

Aviva said...

Hi Sarah,

I have indeed had mono -- TWICE! But it's been over 20 years since so I'm not sure how comparable it really is. IMO, while the fatigue during mono was intense (especially the second time I got it), it wasn't as bone deep as what I've had for the past 3.5 years. But that could also be because the mono was so long ago, and, most importantly, I got better from it.

But you know, if telling them it's like a super intense, endless case of mono helps someone essentially healthy understand, then I'd say go for it. The only downside is if they had a mild case of mono as a teenager and then think it's no big deal ... :-/

I'm glad the Plaquenil is working for you! I had intolerable side effects, but I hear it works wonders for some people and I hope you are one of them!!

Eda James said...

Thank-you for this! I also found it by Goggling the difference between fatigue vs tired.

I am at the beginning of my search. For years I've been told nothing is wrong me...I just need to lose weight. I have never been able to make my doctor understand the extreme I experience just from walking.

Over the past year I find I'm tired all the time. A painful, foggy kind of tired if that make sense. I am no longer enjoying life and this is adding depression into the mix.

BUT! I have hope that things will get better! Identifying the problems is the first step! :-)