(Alternative post title: ME/CFS Makes Me Dumb)
I feel as if I am trying to move through molasses this week, every action requiring an enormous effort of will, wanting only to lie on the couch and do nothing. It is like trying to swim through Jell-o (notice how all my analogies are food-related?).
I am not badly crashed - no sore throat, only moderate "normal" aches - but I am severely lacking in mental energy, feeling as if my body is filled with wet cement and gravity is somehow affecting me more than other people. I am not sleeping as soundly or as long as I normally do, and I feel exhausted all the time. I spend all morning anxiously waiting for nap time in the afternoon, and getting up out of bed after my nap requires a huge effort. I spend the rest of the afternoon and evening looking forward to lying on the couch watching TV (just a few more hours now...).
I can manage to lie in bed or on the couch with my laptop, but the only work I can handle is mindless stuff - checking e-mail, keeping up with Facebook groups, etc. Anything requiring real mental effort or thought is just beyond me. It took me 3 days and a huge amount of effort just to figure out what we are eating this week and make a grocery list. I finally dragged myself to the grocery store today for an abbreviated trip, just to pick up the essentials, but every step of the process was so difficult - not physically but mentally.
I really hate this feeling. I know it sounds ungrateful, but I think I would rather be completely crashed. Then, I could just give in and rest and give up on trying to be productive. Each day, I write "call Aetna and Medco" on my list of things that must be done, but I just don't have the drive or energy to spend hours on the phone with customer service trying to explain what the issues are. In fact there are many urgent things like that that need to be done, but it.is.just.so.hard.
Maybe it is all the activity of last week and the weeks before catching up with me or maybe it is this sudden turn to more humid, overcast weather. Who knows? I don't even have the energy to play my usual guessing games. I am just hoping it will pass soon. Well, that took a gargantuan effort to write, and I can't think how to properly conclude this post, so...
P.S. I realized that I really should mention that this degree of brain fog is far less common for me these days than it used to be. The main things that have helped improve my mental clarity are anti-virals, low-dose naltrexone, and Imunovir (hmm, all immune system treatments - interesting...).
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
9 comments:
Your description is so accurate. This is exactly how I feel when I crash as well. It is such a frustrating experience. It is so hard to even explain, but you did an excellent job in your description. I'm sorry for your struggles this week!
I hope you feel better soon, Sue. It sounds to me like the activities of the past weeks have caught up with your mind and it just wants to rest.
So glad you now know how physiologically explicable this feeling is with the blood not getting to the necessary areas of the brain, Sue. Go with it as much as you can and make that couch earn its' money!!!
Oh thats horrible...like trying to knit with fog...it always feels to me like I have little hands in my brain desperately trying to grasp at what I need. I had that the other w/e when we had a little fundraiser here and I was selling raffle tickets...couldnt remember the names and addresses of people here: people I have known for over 10 years
Completely get the Medco stuff too...have spent hours on phone to hospitals for son trying to arrange/re-arrange stuff. So tired by time they answer phone I have trouble just formulating the words. x
I'm sorry to read about your crash, but it's always somehow comforting to read someone else's description of the frustrations of a crash - to confirm that other people "get it."
Good luck getting out of this crash.
I love your title - it captures the feeling perfectly!
just today i was trying to think of another analogy to try and explain what it feels like on these same type of days, not bad enough to be in bed not good enough to do anything but sit...i was thinking it would be like trying to walk around all day on ice skates while having to carry a heavy backpack - the mental energy to try and balance on those little blades without the help of the ice....
That's a great analogy!
Great description of what it's like to have no mental energy. My CFS started with no physical energy or mental energy; I regained much of my physical energy but the mental energy never returned and a to-do list that consists of "call bank" seems overwhelming. I know what you mean about almost wishing you were in a full crash.
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