Flashback: Update on the broken brain thing

Originally posted 30 March, 2013

I thought I’d give you all an update. Although I don’t have much to update, so it won’t take long.

My brain is still broken. It seems intent on staying that way. Drugs don’t work. Therapies don’t work. Migraines continue unabated, currently averaging 26 headache days per month. I am thankful they aren’t overly painful.

I am getting better at handling it and living with it: I no longer get freaked out when something stops working, or I lose feeling somewhere, or just randomly start throwing up. A new trend of losing time is particularly disturbing however – I can lose half a day pretty easily and I have no idea what happened to it, and if I did something in the lost hours or was just sitting on the couch the whole time.

The fatigue is still the most debilitating, and the ongoing difficulty with concentrating. With a lot of hard work I have managed to increase my max concentration span in a day to a solid 2 hours, which I can push to 3 if need be. I tried to do most of a day at an intensive res school for uni a few weeks ago, but failed dismally and paid pretty severe consequences for attempting such a thing through increased fatigue and brain fails for the next 3-4 days.

I did start uni, and thus far am managing to fake it, only doing two subjects. (I started with 3, dropped the one with the full day schools in week 3). I can’t do the readings. Well I can do some, but I have to read a page, then stop. Then read some more, then stop. It’s exhausting. And makes it very difficult to follow what is being argued sometimes, particularly in the heavier academic theory readings.

On the upside, half the class are ESL internationals… so appearing well read and across the subject is very easy by comparison. Plus, this is media: I’ve lived this stuff, and/or studied it from the political side of the fence.

Other upside is no exams – well, 1 take home exam pfft – and the longest assessment piece is 2500 words, and there’s only one of those, so I should be able to handle it.

The rest of me is not particularly healthy. Slowly adjusting to a diet to manage Insulin Resistance, which I was diagnosed with around Christmas, but haven’t moved any decent amounts of weight yet. Having a gastroscopy and colonoscopy so they can do more biopsies and see if they can determine the cause of some ongoing pain and other issues: might be crohns, might be something else, find out in about 10 days.  Iron and Vitamin D are still low, B12 dropping like a stone after I had injections to get it up. Inflammation markers (white blood cells etc) are there at low levels on every set of blood tests, along with unhappy liver function tests and other persistent but ‘not enough to worry about’ indicators that nothing is overwhelmingly happy.

Except my heart. My heart’s been tested every way known and it’s perfectly healthy.  Blood pressure is low, sometimes too low but another change of meds should stop that.

I’m taking my inspiration from Dory these days. “Just keep swimming”.