I’m Too Tired to Write Tonight

I’m too tired to write tonight.

I wrote that several weeks ago after my wife had back surgery. I’d been doing a couple of things that I haven’t done much in the 42 years since our wedding: shopping and cooking. (Well, making Harris Teeter ready-to-heat meals, that is. For me, that’s cooking.

So, I was too tired to write that night.

On top of this, I’d been wrestling all day with my laptop. It’s six years old, runs Windows 7, and is behaving like it has MS. Its memory is sputtering and everything it tries to do is taking 10 times longer than it should. I finally prodded it enough that it allowed me to type without a buffer delay, but because of the energy that this battle used up …

I was too tired to write that night.

I know that a lot of us with MS are frequently too tired to do whatever we need to do. And our friends and family members often don’t realize that our tired isn’t the same as their tired. I recently read the following comment on the private Facebook group “We’re F**kin MS Warriors“:

“I have been pushing through the day like I’m super woman or something. I still need to start dinner and have absolutely no steam left. Husband is out in the garage working on his project car and not to be disturbed until dinner is ready. If I don’t make dinner, I don’t need to disturb him at all right??? Ugh….I just want to cuddle with my daughter and fall asleep!! I’m just done with today!”

What can we do about our fatigue?

I use Provigil (modafinil) to help keep my eyes open and my brain in gear. (Other similar medications also exist.) Exercise can help. The National Multiple Sclerosis Society has an excellent overview of MS and fatigue, along with treatments being researched and tips for dealing with it. But it doesn’t address how to help others understand how different our fatigue is from that of a healthy person. Heck, I’m not sure my wife always understands my fatigue even though she’s been living with my MS for nearly four decades. (I have to admit, like many of us, I sometimes try to disguise my fatigue and just push through.)

Then I discovered a webpage created by the Multiple Sclerosis Trust, in the U.K., that tries to help us find the right words to describe our crushing tiredness. Here’s an example, from that website, of someone else trying to describe MS fatigue:

“Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks”

You may have some favorite words of your own. If you do, please share them.

Meanwhile, back at the MS Warriors web group, the superwoman with the car-loving husband posted again to report that she ordered a delivery of chicken parm and then went to bed. Sometimes actions speak a lot louder than words.

(This is a revised version of my column that first appeared on the MS News Today website).