Flashback: Losing Time

Originally posted 3 September, 2013

For those that missed the fun, last week I was hooked up to an EEG all week. An ambulatory EEG it’s called, you walk around with electrodes stuck to your head for 4 and a bit days. I was a bit like the Borg Queen. Well not really, but I did put my scarf collection to good use, even getting to wear my beloved UN scarf.

This test (which was organised spectacularly quickly for reasons I am still unsure of as I was told it would be months) was ordered by my awesome neuro after I had to admit a new symptom. A bad one. Losing time.

Time is an interesting commodity. So intangible, so finite, so defined and yet so subjective.

One could argue that I’ve been losing time throughout this entire broken brain nonsense, which has cost me 18 months of my life now. I choose not to think of it that way, or try not to, even if it’s kinda true.

But the kind of losing time that has caused the latest flurry of hospital visits and furrowed doctors’ brows is the kind where I suddenly realise that it’s about an hour or two later than I thought, and I can’t tell you what’s happened.

So I’ll be sitting here in my jamies at about 8.30 mucking around on the internet, eating breakfast, saying good morning to my tweeps… and then it’s 10.45. I obviously finished breakfast and at some point put the dishes on the sink, and by the looks started getting dressed because my jamie top has been replaced with a shirt… but I don’t remember it, and I can’t tell you what else has happened.

Occasionally there are entire Twitter conversations sitting right there in the window, timecoded as happening just minutes earlier, and I have no recollection of it.

The time is just… lost.

This has also been associated with a rapid occurrence of my brain crashes (which have happened before during particularly bad migraines or during bad fatigue). That’s where I am aware that my brain isn’t working as it should, like it’s been switched to slow-mo, my language and decision making ability becomes impaired, and I just can’t think. Usually I’d have a sleep and be fine, Coke (the drink) also helps, or just leave me alone for a bit and I’ll reboot. It’s usually accompanied by nausea, which is all I end up thinking about while waiting for the lights to come back on.

I have no idea what’s going on – and it will be awhile before I have results and stuff, which may say nothing at all – but this is scary.

I cannot convey the unusual fear associated with your brain not working, simply because you can’t rely on your brain to assess what’s going on. Contrasted say to your foot being broken – you can see it, feel it, compare it to your other foot, and have confidence in the assessment your brain is making of the situation. I’ve gotten used to that and it doesn’t really bother me anymore – it is what it is.

But losing time, finding yourself somewhere and not knowing how you got there, doing things and not remembering doing them… this is not ok.

Obviously the return to work plan is on hold. Right now I’m just trying to stay on top of uni, everything else is being deferred or handed off to someone else.

This is a temporary set back. This has to be temporary. Otherwise God and I are going to have some fricken words.