The level of exhaustion I can reach is hard to explain to people. Sometimes I seem fine. I can dress up and go out into the world and function well. The adrenaline gets me through, but then I go home and collapse, and I can barely imagine doing it all again, until I do. But each time, the exhaustion gets worse and the recovery time takes longer. Other people my age have three, four, even five times the schedule I have, and they would look at my life and think I was the luckiest person in the world, with so much downtime. I know that people, even those close to me, believe that I am overstating the problem, and that when I have to work five days a week I will be able to do it. But I’m really scared that they are wrong.
The other day, I saw a performance of a tap dancing troupe called The Red Hot Mamas, made up of women from age 59 to 87, and instead of being inspired, I felt like a loser. I would fall on my head if I tried one of the dance routines they were doing, with such obvious energy and enthusiasm. I used to love my tap classes (when I was four years old), and the sound of the taps when they hit the hard floor. None of these women were breathing hard or struggling for balance, but I would have fallen off the stage in the middle of my first high kick.
I feel guilty for being unwell, without even a diagnosis to name what’s wrong with me. I feel like I’m being lazy, and melodramatic, and should just get up off my ass and join a tap dance group. And I don’t really understand why I can’t.
I am jealous of Cricket’s great joy in running, and sniffing, and playing, as if every trip outside is her first. And I am in awe of Butterfly’s stubbornness. When she thinks a task is beyond her abilities, or wishes, she just stops. She doesn’t go along just because I want her to. She says, no, I’m tired, I’ll wait for you here. When it’s raining, she says, I don’t need to walk all the way down the block just because that’s what Cricket wants to do. I’ll stand here under the awning.
“Nope, Mommy. You can’t make me do anything.”
“Superpuppy!!!!!”
I wish I could do what the dogs do and nap between every activity. But when I take a nap, I wake up disoriented and still exhausted, and they wake up ready for adventure, or at least for snacks. Cricket generously tries to share her enthusiasm with me, however misguided her methods may be (scratching my face and blocking my airway are not pleasant ways to wake me up, Cricket).
“It could be worse, Mommy. I could wake you up with my gardening toys.”
The fact is, the adrenaline that gets me through the day takes forever to leave my system, and until then I feel exhausted and hyper all at once, and constantly afraid that I won’t get my work done in time. I barely finish my school work for one week, when I’m already two days behind for the next week’s assignments. Unfortunately, working my fingers to the bone with typing, and note-taking, and revising, does not burn many calories. This is very disappointing.
I need a break. I want to read a novel. Heck, I want to write a novel. I want to bake, or go food shopping without a list. But there are all of these deadlines to meet, and expectations and obligations to live up to. I feel like someone has pushed me off a cliff, thinking I would fly, but all I can do is fall. And those crash landings really hurt.
Maybe what I need to do is to follow the dogs’ lead and cover my body with a coat of fluff, so at least the landings would be a little bit softer. That could work, or I could just cover myself with my cozy winter blanket and take a long nap with the puppies by my side, and hope that when I wake up, I’ll start to feel better.
“Sleep well, Mommy.”
Fingers and paws crossed.
rachelmankowitz 
Rachel, I placed a like on this blog couple days ago but I’ve been thinking about what you wrote Ever since. You write beautifully of a condition Many of Us struggle with. I felt like I was right there with you and your pups. Your writing is that real. I often wonder how many of us are out there looking as though we’re all put together when in fact all we want to do is go home, pull the shades, lock the door and crawling into bed.
Thank you so much! It helps to know that I’m not alone.
Hi Rachel, I’m catching up on some of your posts and this one resonated with me a lot. I love the way you write and can’t help cooing everytime I see a picture of your puppy. Adorable! I hope you’re having a good weekend.
Thank you so much!
You should start that novel, I’ll volunteer to beta read!
Thank you!
Be kind to yourself.
Thank you.
Hi Rachel, I found your blog because you liked my dog painting site. I have just been going through the same thing you did. Specially the balance issues and loss of energy. An MRI picked up something.
Really? I’m wishing you great good luck with this process, and good health soon!
Happy New Year!With Love Maxima
Happy New Year!
Chronic fatigue is no picnic, but you’re definitely not alone. I know this one well.
Wishing you more energy in 2017.
Thank you!
I feel for you Rachel. It is so hard to suffer from a chronic health issue. It is even harder to suffer from one that can’t be seen by just looking at you. It’s hard for some who see a normal looking person to imagine they aren’t as healthy as they appear. It can make you feel misunderstood at times,
On the other hand If a Dr.has given it a name, well..now it’s legitimate,You have a diagnosis in hand!
The truth is though, Dr’s don’t know everything,some symptoms are hard to diagnose.That doesn’t mean what you are experiencing isn’t real. It is hard not to doubt yourself at times or beat yourself up,
I think we need to be realistic, do what you are reasonably able to do.There are some who will not understand, they have never have faced your situation, they have no idea. Don’t let that hurt you, they don’t know.
Be kind to yourself. Be aware of your limits and respect them. Take care of you and don’t feel bad about doing that. And hang in here kiddo.
Thank you! I’m slowly coming to realize that they are many, many people living with invisible illnesses. They seem fine on the surface and then I find out what they’ve been struggling with, and I am amazed by all they’ve been able to accomplish despite it all.
Would like this little ones energy!!!
Seriously!