Knackered, tired, worn out, fatigued, exhausted, weary, spent, drained.
All of these are words I use on a regular basis. When people ask how I’m doing the response is usually one of the above. Brain Injury and fatigue are common bedfellows. They are a frequent and inevitable Tango that dance through the daily life of a Brain Injury thriver.
Up until approximately 24 hours ago I was in denial about my fatigue, it has taken 31 months for me to stand up and say “hello I’m Lauren and I have a fatigue problem”. This may seem like a strange thing to say after so many posts on here mentioning my fatigue and it being such a presence in my life for so long, but yes there was a part of my scrambled egg brain that despite evidence to the contrary, decided that my fatigue ‘wasn’t that bad’.
I knew I got tired but what I didn’t see was just how low my baseline energy really was and just how much impact ANY activity had on my fatigue levels. After another particularly bad run of what I termed relapse, the light went on that all these episodes were fatigue related and it’s about time I started to take it seriously. The fatigue presents to me as tinnitus, glassy eyes, emotional lability (no control over my emotions which generally leads to crying spells), low energy, helplessness, ‘what’s the point-ness’, aches and pains, craniotomy scar based thuds, zero motivation, zero excitement, fear, anxiety, dizziness, jitters, nightmares, sleep disturbance and all round just damn well fed up. Trying to do anything with all that going on and I can understand why life becomes a drag. When the fatigue is below the base line it has a knock on effect to everything else. My anxiety and sadness worsen, my apathy digs in and all becomes lost once more. This is why it’s so important to manage it more effectively.
Sometimes I can get up, dress, shower, go out, study, read, chat, write blogs, garden, walk, engage, be happy
Sometimes I can get up, dress, shower, go out
Sometimes I can get, up, dress, shower
Sometimes I can get up, dress
Sometimes I can get up
Sometimes I …………
I’m basically having to go back 31 months and start again, look at this fatigue business with fresh eyes. I have to accept even on ‘good’ days my starting level for energy isn’t actually all that high. So from waking anything I do depletes me, that includes brushing my teeth, showering, walking up and down the stairs, surfing the net, talking, daylight, most sounds, reading, thinking, driving and well, ABSOLUTLELY EVERYTHING. Add to that any outlying events like visits to cafes or from family and the fatigue becomes overwhelming. My family visited a week ago and I spent a lot of it crying, fun eh?! Sleep doesn’t ‘top up’ brain injury folk as much as everyone else so even a good sleep doesn’t stave off the effects of fatigue for too long, it can certainly make a difference but the fatigue is insidious and creeps slowly in. This has been another huge lesson for me, I was floating around thinking ‘sure, I get tired but going upstairs a few times doesn’t affect me, nosiree’ and the old favourite ‘I just need a few good nights sleep’.
In most articles I’ve read about fatigue after brain injury they mention two types – mental (confusion, word finding problems, not following conversations) and physical (tired aching muscles, no energy to move). I’ve also seen Psychological fatigue (depression, anxiety, ‘I can’t do this anymore’, no motivation) mentioned but I would also like to add a fourth – hormonal. Hormonal fatigue is when I’m pre menstrual, I used to get tired pre brain injury, now it’s like a whole new level of soul weariness. Looking at all these factors it’s no wonder I’m worn out!
After finally reaching the point of being tired of being tired I’ve decided to look fatigue in the face and take it on. Properly. My first task is to embrace it, I have to acknowledge its existence before I can change it, so with some resignation I am willing to accept I’m not the same as I was. Secondly, I’m looking for triggers, what drains me the most? Are there times of the day it gets worse? Also what signs do I need to watch for that show me fatigue is on its way? I’m looking for the signs then taking myself away for 10 mins to breathe and recharge in the hope that little and often works better than the famine and feast I’ve been having with my energy levels. I also have a fatigue diary where I write everyday what I’ve been up to, how my sleep was, any signals of fatigue and any rest I’ve taken. This will help me root out the big energy drains. To help me in a more kinetic, visual way I’ve got a chalkboard up in the kitchen with batteries drawn on it that get wiped as the day progresses so I can see my energy running down and know how much is left in the tank before I have to stop.
I’m hoping that implementing new strategies will lift some of the fog of fatigue and enable more consistent activity. I’ve been told that as with most things in brain injury it won’t be a straightforward process, it’ll be up and down and backwards and forwards and some days will seem like mountains. This time though, it’ll be a mountain I can finally, slowly and steadily get to the top of.
Do you have fatigue problems? What strategies do you use to help?