I’ve had fibromyalgia for 7 years. I thought I knew what fatigue was.
Hell, I have a child. She is extremely energetic, bounce off the walls, tornado of a child. I thought I knew what fatigue was.
Sarcoidosis has definitely shown me what fatigue truly is all about.
And I hate every single second of it.
I knew something was really starting to be wrong outside of fibro and general stress from work when I started “crashing” more often on the weekends. During the initial fibro days, or even before the diagnosis, I remember just randomly falling asleep in the evenings, around 6:30 pm and waking up at 9 pm. I just could not stay awake. These were pre-baby days and I could afford such a luxury.
Well, more recently this past spring, I started doing it again. On the weekends. Just crashing at 11 am and sleeping straight through til 3 or 4. My husband figured I just needed the sleep because I was working so hard during the week. He is so wonderful.
It continued during my time off throughout the summer. I’d get these sleeping “waves”, in which I knew I was “going out”. I didn’t take anything for sleep, but it felt like I did.
I’m experiencing a lot of that this week. It has happened four times this week.
And when I’m not asleep, I can barely move. It. Just.Takes.Too.Much.Effort. My limbs hang down at my sides, they feel like lead. To physically move positions, it is almost a herculean effort.
I’m having more pain too. Finger joints, knees, hips. Elbows. That is new and different from the fibro. And I’m not taking anything for it unless I absolutely have to. So far this week I’ve taken tylenol once and tramadol once.
But this fatigue. It is so hard to put into words, but I try to explain it to my husband and my parents. “Its like you have the flu” or “think about your most exhausting day ever”.
Basically, sleep doesn’t do shit for me. Its just something I do, but doesn’t benefit me in any way, shape or form. I honestly can’t remember when I felt refreshed from sleep.
I attempt to keep some sort of circadian rhythm, waking up in the morning (my daughter’s school bus comes at the ungodly hour of 6:55 am) and going to “sleep” between 10 pm and 11 pm. I try not to nap during the day, but like I said above, it just happens.
My body always feels tired, dragging. If I “overdo it”, i.e. go to the grocery store, I feel like I’m running out of gas and its like my brain shuts off. I literally do not know what I am doing. My brain feels numb. I literally have to force myself to put one foot in front of the other.
And tomorrow is poison day.
I know I have to have a better outlook.
Maybe I’ll wake up with one…