Wednesday, May 7, 2014

Just Be Cool

Today, I am battling a fatigue like I have never known. It is manifesting in real, tangible pain. I hurt.
I am too young to feel this old. I don’t remember what it feels like to wake up well rested. I don’t remember a time when my morning baseline feeling was rejuvenation. I know I used to be able to reap the benefits of a good night sleep. I remember that there was a time when I was able to function easily on very little sleep. I know there was a time in my life when I used to dance until 2:00 a.m. and get home in time for a shower before my 7:30 a.m. class.

I remember when I used to dance.

My fatigue is compounded with huge, life-altering stressors and a large dollop of dejection.  I’m not depressed. I know what depression feels like. I’m just plain-old-vanilla sad.

And I am so, so tired.

Over the last few months, I have partially blamed my exhaustion on the medication that is helping me sleep. Don’t you just love ironic medication? Those little green tablets don’t create authentic sleep. I don’t drift off into an REM state. I am shoved into unconsciousness. And the pills cause me to have a sleep-aid hangover in the mornings.

But, it is misplaced blame. I am so thankful for the sleep those pills provide. Because—otherwise—I hardly sleep at all. A groggy morning is a small price to pay to not have to check the clock, seeing that the hands have only moved from 2:09 a.m. to 2:21.

Nothing good ever happens at 3:17 a.m.

I wish I could feel rested. I wish I could find some energy. My work, my home, my relationships, my family. They all are suffering because of my exhaustion. My skating suffers too. When I put on my skates, I might as well start the timer. I have 50-70 minutes before I run out of gas. Mileage may vary.

I asked Dr. Google about my fatigue and I learned some interesting things. Lassitude is a type of fatigue unique to people with MS. Because MS is the gift that keeps on giving.

Here is what the good Dr. G taught me about lassitude:
  • Generally occurs on a daily basis
  • May occur early in the morning, even after a restful night’s sleep
  • Tends to worsen as the day progresses
  • Tends to be aggravated by heat and humidity
  • Comes on easily and suddenly
  • Is generally more severe than normal fatigue
  • Is more likely to interfere with daily responsibilities

Well, damn. That sure seems to fit…

And this one lassitude fact was both very reassuring while being quite maddening: MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment. If that is the case, how do I fight it? Can it ever be conquered?

It appears that I am just going to have to figure out the most efficient way to be tired. But, I’m not going to take this fatigue shit lying down.


One of the things that I have noticed. My environmental temperature has a dramatic effect on my energy levels. Heat is my enemy. I can feel my body begin to revolt when I start to get overheated. The sun and I—already having a rocky relationship and a trial separation—have officially broken up. It was never meant to be. A pale, freckled redhead was never meant to be with a ball of fiery plasma. Maybe the sun found out I was getting my Vitamin D on the side... 
I will fight the heat. I’m ordering a cooling vest from Square 1 Gear that I will wear skating. From the same company, I’m going to order something they call a crown cooler, which is designed to fit in the hardhats of the construction workers suffering through a Utah summer. The crown cooler will also fit quite nicely in my derby helmet. These two things should help me get through the stifling hot summer spent skating circles at the Derby Depot.

I moved my bedroom to the significantly-cooler basement of my house. I installed a ceiling fan to move the air and provide the white noise that is so helpful when I sleep.

Aside--As an added bonus of moving my room, my amazing Kidlet got the big bedroom/New Orleans Saints mini-man cave.

I’m learning the wonderful art of dressing in layers. I have a tiny fan intermittently running at my desk. I’m making sure I am drinking so much water that I frequent the Ladies Room at least once every hour.

It’s funny how there are some themes in our lives that we can never escape. Mine seems to be this:

I just want to be cool.

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