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 with a little application of willpower like when you must force yourself to get up out of your chair to go cook dinner after a long, long day. 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.
From 21st century research into microglia, the brain’s immune system, and brain injury, we know fatigue begins with the cascading events after the initiating cause.
I have chronic physical pain from soft tissue injuries, including whiplash. For years, the pain always sat like stripes over my muscles; when it increased, the pain ate into my muscle fibres and ascended up them into my head, blossoming into a migraine. I also suffer from 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 — assuming one has been wise enough to put health before debt free and acquired home devices. And pain from injuries diminishes over time — as long as you didn’t use the injured area as if it wasn’t injured and did 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 seems to be no pill, no remedy for fatigue. Fatigue cannot be resisted.
Is it surprising when fatigue arises out of neurons, their supporting glia, and microglia no longer functioning as they should?
Does Fatigue Fade Over Time?
Several years ago, my heart leapt up in horror and my mind screamed, “Noooo!” when I heard the speaker at a meeting of the Brain Injury Society of Toronto — a person with brain injury — say that he continues to deal with fatigue 14 years post injury.
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 had increased my energy as it began to heal my neurons — because I use my audiovisual entrainment and cranioelectrical stimulation devices daily, and because I take my supplements, eat well, and exercise in a way my body can cope with that my fatigue would go away. I was, at that time, increasing my writing time towards part-time hours, and motivating me was the thought that a person with brain injury who can work must no longer have issues with fatigue, right?
The speaker had a job. The speaker had enough energy to travel to speak to audiences all over about his experiences. The speaker looked “normal.” Yet he still struggled with 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, socialize, 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 of that kind of cognitive load was brain biofeedback. I gained 8 kg.
When I heard this speaker, I was gearing up to resume medical treatments, and I knew that meant increased fatigue. Fatigue increases because the energy required to repair neurons and neural networks soars and quickly depletes what’s available — plus repairing the brain is very hard work, like undergoing an Iron Man triathlon daily.
I dreaded the fatigue growing more powerful and preventing me from keeping up with my writing, blogging, photography, things that made me feel functional and of value. I dreaded how the fatigue would once again suck all vitality and joy out of life all the time, instead of at that time maybe weekly. Pain grieves; fatigue deadens. Pain can be resisted as it increases, even if only for 5 minutes. Resisting growing fatigue is futile.
Although treatment fatigues greatly because of the hard work involved, it also over time, as the injured neurons and neural networks are rebooted, repaired, and rewired, energy returns. For some slowly; for others rapidly. It depends on when they had their brain injury properly diagnosed and how quickly after the initiating event they received neurostimulation therapies. The quicker the diagnosis and treatment, the better the chances of stopping the cascading cellular damage and restoring the brain.
Effective treatments eliminate or reduce fatigue substantially.
The Cost of Brain Injury Fatigue
Yes, one can use inertia to complete a task as it drains every cell in your body and brain of fuel. But then you won’t be able to move for hours or days afterwards. You cannot predict the resulting fatigue, how intense it is nor how long it will last, especially as you undergo neurostimulation therapies that improve your energy over the long term and change your endurance and stamina, yet deplete you during them.
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. Still, I was eleven years post-injury at the time and believed I could conquer fatigue. His experience didn’t stop me from getting back into the fray of recovering my health. I complained and endured my way through new treatments that bit by bit increased my overall energy. I put up with the regular crashes that necessitated lots of couch time, then got back up and continued on the recovery treadmill with fatigue draining me every step of the way.
“what NOT to do if you or someone you know, suffers a concussion
Beautifully written first person account of life after a brain injury…. Shireen describes in detail the changes in her life after her brain injury, her family’s reaction (spoiler alert: not helpful!), and the extensive treatment regimen that finally helped improve her functioning. This is a must read for anyone with a brain injury and anyone who is close to someone with a brain injury.”Amazon Customer. Concussion Is Brain Injury: Treating the Neurons and Me. 5 star review
After my eye surgery in 2016 and the resulting isolation, I’d had enough. I could no longer tolerate fatigue’s spiritual loneliness. Perhaps if I’d had robust social support, if I’d had collaborative health care that didn’t depend on me being the driver, I could have continued to endure the high levels of fatigue I’d grown used to. But I no longer wanted to feel it. Doing much less means living in the bubble of believing one has some energy. In the end, without rapid effective treatments and social support, fatigue doesn’t ever let go.