Before I had my brain
Most people don’t realise that stroke is a brain injury. I didn’t know until I had one. Those physical and mental deficits that we survivors are left with are due to brain damage. In situations of ABI (Acquired Brain Injury), the fatigue will be mental as well as physical because of the damage the brain has suffered. I can only explain things from my experience. In my post-brain attack world, everything takes much, much longer to do than before the brain injury, both physically and mentally. For example, just taking a shower is a huge, physical effort. After I’ve showered, I will often need to lie down for an hour or two (maybe longer) in order to recover from the energy I have used. However, this physical exertion is reasonably manageable compared to the mental fatigue. I had never experienced mental fatigue until after my brain attack. The way I explain it is that my brain just gets totally overwhelmed. It happens when it’s had too much sensory input, so this can be anything that involves brain activity, mainly vision and sound. My ‘bandwidth’ to cope with sensory input has been hugely diminished and when I reach the point of being overwhelmed, I just ‘shut down’. This is my wife’s expression, as by the time I get to this point I’m not aware of it myself – I’ve just turned into some kind of zombie. (I actually refer to the times when I feel very brain fatigued as my Zombie Days). I just sit staring out of our patio doors at the bird feeder watching the birds come and go.
This newfound neuro deficit is affected by conversation, listening to music, bright lights, reading, watching the TV, using my computer – practically everything. This is because the category of ‘practically everything’ involves using the brain and my brain is damaged. I don’t have as much ‘brain power’ as I used to, so I have gone from having superfast broadband to a dial-up modem (remember them?). 40Mbps down to 56k. I’m slow, I’m clumsy, I stutter, I’m pixelated, I drop out quite often and I don’t receive everything that I’ve downloaded. And what I can do takes forever compared to ‘before’ (that semi-mystical time before May 2013 when everything worked OK).
This makes ‘normal’ life extremely challenging. Just going out for a cup of coffee can be an awful experience. Going in to a busy cafe with everyday hustle and bustle can be totally overwhelming, confusing, painful. My brain can’t process all the sounds, all the sights, the all smells as it once used to. It’s like I am being bombarded by heavy artillery shells. Complete sensory overload. It’s very hard to describe. This is when I “shut down” (my wife’s phrase). I’m not aware of this ‘cos I have ‘gone’, but apparently I mentally freeze, can’t speak and appear comatose. Physically I can move, though. On one occasion I entered a cafe, stood in the queue to be seated for 30 seconds or so and then turned around and walked straight out again (well, shuffled with my walking stick!) with my wife following me trying to get me to stop. It was just too much (noise, commotion, heat, people everywhere). This sensory overload put me on ‘auto pilot’ and I was oblivious to what was going on. I guess something told me to get out, and I did. My wife eventually got through to me, I then ‘came to’ and wondered where I was!
I have two sons (aged 26 and 30) and am dreading one of them getting married as all the socialising will be impossible for me to contend with. I can just about maintain 30 minutes of conversation in a quiet room before I can’t cope any longer, so even a few hours at a wedding reception will just be too much. I am a musician and even now, four years post stroke, I have to ration how much music I can listen to. It’s a total sensory overload after more than 20 or 30 minutes. (This is making for an interesting challenge as my fundraising project www.brainattackmusic.com involves me writing music!).
Over the last four years, my docs have tinkered with my meds to see if any of them could be contributing to my fatigue. I have changed my pills one at a time under medical supervision and it made not one jot of difference. I have also experimented with what I eat and drink, tried supplements, etc. Again, no difference. My stroke was in my cerebellum and affected my medulla and brain stem. I have read some research that suggests if your brain stem is affected you may suffer badly from fatigue. But, of course, we’re talking about the brain so there is no real definitive evidence.
So, how I now manage and regulate my fatigue is to use a cooking timer. I wind it up to 30 minutes and set it running. Then I am free to read, use the PC (whatever) until the alarm goes off. I then stop, find somewhere quiet, close my eyes and rest. It might be a few hours before I can do anything again, maybe the next day or maybe not for a few days. It varies hugely and there’s no pattern. Planning anything in advance is a nightmare and I have all but given up doing so. I just don’t know how I am going to feel from one day to the next. In my early days I would regularly overdo it and on one occasion it took me about 2 weeks to recover. Hence, the cooking timer. Since using this I overdo things much, much less frequently, so I am better at managing myself. However, as you may imagine, it’s a royal pain in the backside to have to do this. It is incredibly limiting and extremely frustrating. I wrestle with it all the time. My physical deficits pale beside it. If I could wish for one post-brain attack deficit to be removed it would be the neuro fatigue. That’s top of my hit list.
N.B. This short article has been written in about 4 ‘shifts’. I’m now off to rest and I don’t know when I’ll be back!