Since becoming disabled, I’ve learned how to adapt for cognitive fluctuations.
A Good Day: Some days are far easier when my brain is ticking along and body parts are listening to what I tell them (kinda-mostly), thinking in language (words, English) and processing sensory information is far more synchronized and my speech is understandable. I have energy to go for a walk, to go to a store, to do something outside of my home, with a support person.
On these days, I do everything I can because I can. I learned years ago moderation on a good day didn’t influence more good days.
I also learned there’s no planning a good day and there’s no predicting ahead of time what day is going to be a ‘good day.’ Yes, there are ways to help prompt a ‘better day’ with rest and a low sensory exposure day (lights muted in the house, quiet, and so on) but there’s no guarantee – and some days it’s just wishful thinking – but some days I can get the balance just right.
Keeping the balance just right includes a massive amount of pain management. Great day, good day, rough day — all of these days include incredible pain. Pain is an accepted part of my existence now for over a decade. Every tic, tremor, stutter come with a bolt of electricity through my system. That shit hurts. Make no mistake – but after so many years, I’m used to it being part of my every moment of life. It’s just one of the ‘pains’ to manage daily. Minute by minute.
That, and last year or so, a reprieve arrived. I popped my shoulders out attempting to open the kitchen drawer (it’s incredibly easy to do for me) and it took weeks for one of them to get back to where it needed to be – my doctor prescribed a muscle relaxer to help. What it helped with that was very surprising, was lessening pain on my skin. For a decade every touch, every whisper across my skin, even light, made it feel like it was burning fire. Everyday I’m so grateful for this tiny little pill. 3 x a day. It’s improved the quality of my life more than I ever hoped anything could. A good surprise.
My seizures also became far less … violent? Yes, they are still incredibly hard, but there’s a less wear and tear it feels like on my body. Bill would know more about this since I don’t remember them much or at all during the event. This makes recovering from them easier and more swift. (Well, swift for me.)
I’m also finding my ability to withstand sensory load is stronger too. What would put me into a tremor and then seizure – now triggers my vocal tics first. (Well, no guarantee but this is vast improvement in world and a bit more buffer to mute sensory load quickly.)
So on a good day, I can think better. Move better. Use language better. These are days I work on more focused thought work like writing and so on. On the days that are challenging (most of them), I’ve learned how to use my brain differently on those days and and adaptations to read email and answer it and write stories for my activism work. Go to music events, protests, a coffee house. Engage with people. And so on.
On the even more challenging days where words are difficult to process and my brain is spitting out images / constellations of imagery (its how i think eh) and I struggle to interpret them into words others can understand — my patterns of the day change. My activism work changes to a form I can accomplish. Which means working from my ipad. It means no original writing that day – but I can update the site archives, manage to read short things, get support in understanding longer articles or writing (Bill helps me a lot with this). On these days I can often write, but not read what I wrote well enough to catch changes need (like right now :)). Bill supports me to read anything I’ve written – over and over if needed – and help me make edits.
On these days I might work with video or images more than anything to lessen the tax of ‘language.’ I can work on the website archives. These days take a lot of music with beats to keep my brain sync’d – and tracking well. Music at public venues does this for me too. It’s the space between sets that I struggle with the most: socializing and talking.
This long ramble, which I can’t backread today, is to illustrate the fluctuations that happen constantly and so do adaptations. This ‘invisible’ part I think can be frustrating to others who don’t understand. There are days I can engage and respond to messages and emails and social interactions – and there are far more days where I can’t get my brain to focus at that level, and if I try too hard I’ve learned will only prompt a seizure.
So a good day, rough day, stay-at home day — yes, they all have their physical and health challenges — but remember this too … for me, every day is a GREAT day to be alive. Abled and disabled.