Fatigue is such an inadequate word to describe the unutterable weariness that comes on to a person with fibromyalgia or brain injury just because one got up in the morning.
When someone who has a chronic illness or injury, particularly brain injury, fibromyalgia, or chronic fatigue syndrome, say they’re tired, they don’t mean what you experience at the end of a long day. They don’t mean something that can be overcome just with a little application of willpower like when you get up out of your chair to go cook dinner though the day has been long. They don’t mean the normal exhaustion from work or school. And it is not an euphemism for lazy or unmotivated. It’s worse. Way worse.
I have physical pain from soft tissue (fancy word for muscles and ligaments and such) injuries and the whiplash, pain that always sits like stripes over my muscles and when it increases, eats into them and ascends up into my head to blossom into the glory of a migraine. And I also have fatigue. Of the two, I often think fatigue is the worst. Pain one can manage. Pain one can learn to live with so that it becomes the background noise of life. Most pain one can work through and treat (up to a point). And pain from injuries diminishes over time — as long as you weren’t stupid like some people I know and used the injured area like normal before it had healed and didn’t do the physiotherapy-prescribed exercises. But fatigue continues like some vengeful lead weight that sucks every drop of fuel from your muscles, every thought from your mind. It is always there. And it always increases as you do anything: get up, eat breakfast, brush teeth, read emails, attempt to reply…time for a lie-down on the couch. There is no pill, no remedy for fatigue. Fatigue cannot be resisted.
So my chest grew heavy, my heart leapt up in horror, and my mind screamed, “Noooo…” when I heard the speaker at the latest BIST meeting — when I heard the person with brain injury — say that he continues to deal with fatigue 14 years post.
I already knew from talking with others with brain injury who had suffered their injuries in the 1990s that fatigue is a never-ending problem. It does weaken over time, both as the brain heals and as you learn to manage and accept the limitations it imposes. But for some reason, I had thought because I had done brain biofeedback treatments (which though exhausting beyond words during it had increased my energy) and use my gizmos daily and take my supplements and exercise in a way my body can cope with and eat well and because I was steadily increasing my writing time that my fatigue would go away. A person with brain injury who can work must no longer have issues with fatigue. Ha!
The speaker has a job. The speaker speaks to audiences all over about his experiences (which means he has enough energy to travel and speak, which I don’t). The speaker looks “normal.” And he still has fatigue. As he so eloquently put it, when he went back to school, that is all he did. Unlike before his injury where he would’ve been able to go to the gym, work part-time, etc. in addition to studying, post-injury he could not. All he could do was go to school and back home again. As a result, he gained 40 lbs. I didn’t go back to school. My equivalent was brain biofeedback. I gained 8 kg. And although I need more treatment and although I’d like to take extracurricular courses again as I used to do before my injury, I dread the fatigue growing more powerful and preventing me from doing the things I now can. I dread how it will once again suck all vitality and joy out of life all the time, instead of maybe weekly. For pain is emotional; fatigue is deadening. Pain can be resisted, even if only for 5 minutes. Resisting fatigue is futile.
Before hearing this man speak, I had thought that if I reached a certain level of functionality that it meant fatigue would’ve lost its grip. Apparently not.
