This past week, I have had a flair of symptoms. This flair has been worse than my previous ones and I can barely get out of bed. All I want is SLEEP! I have become "the person in the room" to my family...hopefully temporarily. So, since it has become all I can think about currently, I want to talk a bit about fatigue...
In our society, everyone is tired. I have heard time and again on the news how our nation as a whole has a problem with sleep deprivation. Between jobs, kids, school, homework, hobbies, chores, bills, stress, television, social networking, and more, who has time to get in bed and sleep the necessary eight and a half hours to maintain health? That is why, when someone like me or you says they have Chronic Fatigue Syndrome, it seems laughable. I mean, what adult in America isn’t always tired?
That CFS person must just be more of whiner to actually get being tired diagnosed as a “thing”. What an attention seeker, right? They need to just pull up their big girl or boy pants and get over it.
I am sure if I never got this illness, I would have felt this way about this syndrome, ignored it, and went about my day. I now know that the fatigue I experience is way different than anything that healthy people, even if they are sleep deprived, have ever experienced. I am not trying to belittle the problem of sleep deprivation. People do need to cut out stress and sleep appropriately. Sleep is very important to a healthy, happy life. Believe me, I get that. I just am trying to say that I wish that my fatigue could be solved just by regulating my sleep and maybe throwing in a nap every once in a while.
My fatigue is an all-consuming, looming presence that doesn’t go away no matter what I try. It seeps into my mind, my body, and my soul and drains the color out of my life. From the time I wake up, to the time I fall asleep, my body screams for rest. It is never satiated and is only becomes more ravenous the more you feed it. I can try and ignore it but it stays laughingly in the background, smiling and waving anytime I notice it. My muscles and joints become tired from carrying me around. The smallest task becomes a momentous endeavor. I do still have some physical strength. I can lift and carry more than most women can. It’s just as I carry it, I can almost feel the energy leaving my being with each second of exertion. Carrying grocery bags into the house means I won’t be able to give my children a shower that night. My energy level is a running tally that I have to keep track of every day. I always wish I had more energy and am constantly overtaxing my system to function on a daily basis and feel normal. I never have a day where I wake up completely refreshed. Nothing I do makes me feel better and every day I have to hoard my energy because I don’t know if tomorrow I will wake up worse than today.
Physical exertion isn’t the only issue when it comes to my fatigue. Although exercising does make my symptoms worst, mental exertion does this as well. Going to the doctor will wipe me out for the rest of the day. The mental energy it takes to remember what I need to say, make myself coherent, be pleasant and cooperative, and be intelligent without seeming too informed is tiring. Talking in a social setting can drain me. I can be sitting in a chair the whole time I go on a visit and still come home feeling as though I ran the entire time I was there. The act of fighting off my fatigue and brain fog enough to talk and not embarrass myself is a lot harder than people know. Staying alert and not letting myself zone out is also taxing. Also, handling the mental task of trying to organize paperwork and pay bills can be too much for me to get through. Doing all this is fine as long as I already have the numbers in front of me but throw a problem in the mix (which always happens) and I am making mistakes right and left. I have always been a planner but planning is difficult when you can’t do more than a little bit of work at a time. My energy level frustrates me because I just want to get things done in a timely manner. I don’t know how many times I have been writing out a paper on research I have done for a trip or my kids’ birthday party and look up to the computer to check my work only to see that I have been writing gibberish because I am so tired I zoned out.
“Just go take a nap then if you are so tired!”
Even people closest to me seem to think sleep is the answer. It is hardwired into our brain to feel this way. When someone has a cold, you tell them to go to bed and rest. You bring them soup and leave them alone to get some peace and to recuperate. For me, sleep is not my friend. Sleep is my sworn enemy and I battle it constantly. Sleep is a deadly siren song that sounds sweet and captivating but leads to death. When I take a nap, I wake up worse than when I laid down. My fog will have doubled and my exhaustion is too much to fight. Waking up from a nap is the hardest battle against sleep and one I consistently lose. The siren already has me in her grasp and sings louder to keep me under. She claws at my psyche and doesn’t let me escape no matter how much I struggle. I also fight going to sleep at night. No matter how tired I am, I always stay up later than I originally attended because going to sleep is so abhorrent. I know that going to sleep means waking up and the effort it takes to wake up, scares me. Getting myself out of bed takes more willpower than I think anyone realizes and the years of war has taken its toll on my mind. The pull to stay in bed and continue to rest is hard to resist. I fear for the day when I no longer have the strength to get out of bed in the morning. When I decide the pull to stay resting is much more desirable than the misery of going about trying to just live, even with my family around me. If that time ever comes, then I will have truly lost.
Waxing poetic about fatigue
Blog entry posted by mirespada, Sep 26, 2018.
About the Author
I am a 29 year old mother of two beautiful girls. I have had ME/CFS for 8 years. Before I got sick, I was an archaeologist for the Forest Service (the youngest professional archaeologist in the Southwest!). I now live with my very supportive family: my mom, my dad, my sister, her boyfriend, my S.O., my two girls, my two dogs, my cat, and 4 fish.