One more day left in the books and I can say I have remarkably completed my first week back to work post stroke. I had trepidation on the first day with how my body and mind would adjust. My worry jar was filled with, “will I remember what to do” “will I be lost”, “am I still viable”? Within the first thirty minutes of coming back those worries quickly subsided. I adjusted well, had energy, felt supported, and got the job done. I know that most people dread working, but for me it was regularity that I fiercely needed. As each day went on (I know it’s only been four days), I felt accumulated. Through the day, I felt a surge of energy, and then when it was time to wrap up, I felt like I hit a wall of fatigue. I’ve heard about post stroke fatigue yet had not experienced this with a normal routine until this week.
My exhaustion is not something I can illustrate in a well-expressed way, but I will do the best to make sense of it. To begin, it’s an intruder- a sandman that creeps into the room and smacks me into an outlandish sleep- somewhat awake, somewhat asleep. It’s an idiosyncratic feeling. For the first few days, I would fall asleep for an hour. On Wednesday, something took over me and drained every molecule of life out of me. I felt sick, cold, muscle aches, fatigued. I didn’t feel that way during the day- it just came on when I was done working. Then today, I felt great and after I clocked out, I watched some television and felt myself falling asleep again. It was an altered type of sleep. I felt like my brain was lava, pulsating causing my ears to vibrate. Soon I saw psychedelic colors as the pulsing continued. It felt like something was taking over my brain and I was awake enough to know that something was off. I finally woke up and felt distress. What was going on? Is this an outlier or is this something common with post stroke?
Regarding the fatigue, I reached out to my fellow SAH survivors earlier in the week and they varied on their stroke fatigue. Some said that it doesn’t go away, others said that it last for a while but then it subsides. Basically, I need to acquire acceptance that I had a brain injury, and it takes a long time for the brain to heal. My mind doesn’t think like that. There is no mercy in my world, and I operate at full steam, unrelentless even when the gas tank is on empty. One of my fellow survivors gave me a link about brain injury fatigue. It was interesting to watch. The premise is we operate on three battery levels. Battery A is what fuels us and gets us through the day. When that depletes, we go to battery B which winds us down and gives us a little boost and last, battery C is the warning that we need to recharge. Sleep is the recharge to get us back to A.
The full video can be watched here: https://youtu.be/pIoKnfIb7iE.
Naturally, I wanted to research a bit more on dream states and fatigue. Let me tell you, information is lacking. Most of the journals follow a study of an elderly lady from Switzerland who didn’t dream after her stroke. This is cited in almost every link that I clicked on. There is a gap on SAH post stroke symptoms, and it’s one that needs to be filled. I did gather some information from a few websites, that gave some insight.
From J. Allan Hobson, M.D, he recounts his post stroke sleep as “During this period I also had hallucinatory experiences involving balance- vivid impressions of being launched into space”. Citation: https://www.dana.org/article/shock-waves/
From forums many people complained the same issue of sleep. Example: “Since the SAH, I’ve had nightmares, do talk and yell, scream in my sleep”- anonymous
Digging deep, the collective clamor, was vivid dreams that did not exist before their stroke. Some, like me, with chronic nightmares, found themselves going to another level of nightmares. Fantastic, I thought.
Next, I looked up stroke fatigue, because it’s something that I’m struggling with. I came across an article from the Stroke Connection that explains,
“Stroke is unpredictable both in its arrival and in the consequences it leaves, but one common stroke deficit is fatigue.”
Per Jade Bender-Burnett, P.T., D.P.T., N.C.S., a neurological physical therapist, “It’s very frustrating to the person who’s living with it because, unlike exertional fatigue, post-stroke fatigue doesn’t always resolve after you take a break, or get some rest.”
“Post-stroke fatigue often changes over time. People report more and greater fatigue in the first six months. It’s episodic at first and seems to come out of nowhere: “They may be functioning well, and then all of a sudden they hit a wall,” she said. “It seems that as they get farther along in recovery, those hit-the-wall episodes decrease, and the lingering effect is ‘I just don’t have the energy to do all the things on my plate.’”
For further information visit: https://strokeconnection.strokeassociation.org/Spring-2017/Helping-Others-Understand-Post-Stroke-Fatigue/
Next, I went to the Brain and Spine organization and read a piece from Kate Hayward, who states “30-90% of people post SAH experience fatigue (Kutlubaev, 2012)” and “Neurological fatigue: ‘comes on suddenly without warning, does not improve with rest, is abnormal or excessive, chronic in nature and unrelated to previous exertion levels’ (de Groot, 2003)”
For further information visit: https://www.brainandspine.org.uk/wp-content/uploads/2018/03/Fatigue-following-a-SAH_Kate-Hayward.pdf
Here is another great source that focuses on SAH stroke fatigue from Behind the Gray
Highlights: “Fatigue seems to be something that all SAH survivors experience on Behind the Gray, to a lesser or greater degree.
The definition of Fatigue -
Fatigue (also called exhaustion,lethargy, languidness, languor, lassitude, and listlessness) is a weariness caused by exertion. It can describe a range of afflictions, varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles. It can be both physical and mental. Physical fatigue is the inability to continue functioning at the level of one's normal abilities. Mental fatigue, on the other hand, rather manifests in somnolence.
Somnolence (or "drowsiness") is a state of near-sleep, a strong desire for sleep, or sleeping for unusually long periods (c.f. hypersomnia). It has two distinct meanings, referring both to the usual state preceding falling asleep, and the chronic condition referring to being in that state independent of a circadian rhythm.” (Quoted from Wikipedia.)”
It lists out different accounts from other SAH stroke survivors.
For further information visit: https://web.behindthegray.net/articles.html/general/fatigue-after-a-sah-r155/
In a universal way, I want to this to be a celebration piece but also an educational piece for others to understand that while I’m running on a full tank of gas during the day, at night, my energy level will be low for a while. My brain is still healing, and that’s something that I need to assimilate to. In time my brain will heal, and I won’t feel that fatigue that smacks me in the face every single day. All-embracing, I'm happy to be back at work.