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Still Alive Ten Years On [Apr. 1st, 2016|10:04 pm]
dalekboy
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So today marks the 10th anniversary, of the first day, of the two-week long basilar migraine that gave me a stroke equivalent. That took ten months to be properly diagnosed, because it is a rare and confusing thing, much like myself.

Ten years! Over one fifth of my life! There are people who I think of as good mates who have never known me before the stroke. So weird. I used to be a hyperactive little bastard, capering about and being maniacal. Now, somewhat less so.

Post stroke I got rather quieter.

I struggled watching TV shows. Even Doctor Who I found taxing. I just couldn't concentrate. Forget about films. Only thing I found I could watch was Smallville.

Much better these days. I still have issues with complex drama now, but only when mentally tired. Admittedly that happens more often now, but I can watch and appreciate interesting and challenging films and TV once more.

Books! Couldn't read them! Same problem as TV, I didn't have the concentration.

But years and many reread Terrance Dicks Doctor Who novelisations later, I can read again. I recently read Mary Shelley's Frankenstein for the first time. What a fabulous book! Getting in to a lot of older works in recent times. M. R. James, Jane Austen, that sort of vintage. And buy/reading a lot of Terrance Dicks' non Doctor Who work as well.

Writing. My ability to write fiction slowly vanished, robbing me of a hugely successful career as one of millions of authors who struggle along just trying to bring in less than half minimum wage. I used to be able to pump out 2000 words easily, and 4000 in a sitting was not uncommon. They may not have been great words, but that what editing is for.

I still have all the inspirations, I develop plots and characters and themes, but getting them down in pixels doesn't usually get beyond a page or two. Have started to have ideas to get around my issues, but I'm not pinning any hopes to them. While I refuse to accept that part of my life is dead, I also don't expect it to spring back to life.

Reading maps. Was good, now I'd be buggered without a GPS.

Remembering names. Was awful, now I can still name the entire family I met for one night in Eucla a few weeks back. Best new toy, ever! One of the advantages of brain having to retire around damage, and a huge bonus when playing Father Christmas! A child does a return visit a week or two later, you wave and greet them by name, it makes their day.

Same with my kids' school chums - I've had a few children be ridiculously pleased that I remembered their names, even though I've only met them once before. Makes them feel like they matter to an adult, which makes me happy.

Walking. Ended up on a walking stick because my balance was shot. Now, I've been off it for four to five years.

Headaches. I get these a lot. I describe them as migraines for the same reason I describe what happened to me as a stroke - because people understand the reference almost immediately without the need for lengthy explanations, and they're closely related enough in terms of the effects that it's still accurate.

What I actually get is cluster headaches, which sounds less intense until you hear that they're also called suicide headaches. I sometimes go months without any, but once they start I have to hope that the run will be short, because months and months of blinding headaches that make my skin hyper sensitive to all sensation, including clothes and air moving past it, is somewhat exhausting.

Fortunately my cluster headaches seem to be at the lower end of the spectrum. I can still function through the pain. Well, a bit. Some of the time. But they are still super tiring.

Depression. Managed to mostly handle this through exercise since my 20s, but stroke and becoming a parent removed most of my time and reserves, meaning it became more of an issue.

I've been on the lowest possible anti-depressant prescription for a few years now. It's enough to help me past the first hurdle to do the things I need to do to keep myself okay. I still have bad days, and occasionally bad weeks, where the self-loathing and depression fibs kick the crap out of me, but mostly I'm good.

Sensory Processing Disorder - this is new. Well, it's new in terms of I now know I have it. It's old in terms of the fact I've always had it. My son was diagnosed with it, and while talking to his physical therapist about him she listed a number of things kids with SPD might do to cope with the world, and basically listed a pretty solid range of my behaviours as a child and teenager. We talked about it, and she agreed that in light of my son and my history, it was 98% certain I had it.

Basically it puts one on or near the autism spectrum, though very high functioning in the case of Lex and I. A lot of reactions that I used to look back at, and wonder why I did (and do) certain things, become clearer in light of the new discovery.

I can't blame all my odd or inappropriate behaviour on it, but certainly my obliviousness to some stuff, urge to hug and cuddle people, and total confusion caused by people saying one thing then acting the opposite are parts of it and me. There's a strong need for comfort, and that can be gotten by physical contact, alone time, reading, or driving long distances on my own. Those things help feel at peace.

Even if many of the guys I hug get a bit weirded out, at first. Most relax into it. :)

So, ten years on from the stroke, that's where I'm at!

Currently sitting in Memorial Park, Bridgetown, West Australia, watching my kids play. It's day 27 of a trip across Australia, the first 18 days of which was only the kids and myself in my non-air conditioned 1970s Holden. It was exhausting, but great fun - I love travelling with them, even with all the dramas they create. Sharon met us in Perth, and we're driving back across the Nullarbor and home via Uluru.

The fact I can do a trip like this at all is frankly pretty darned wonderful. I still struggle a lot, but I'm also improving a bit every year :)

And getting prettier™, of course.
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Comments:
[User Picture]From: tikiwanderer
2016-04-01 02:26 pm (UTC)
It's good to read this and see how much has changed over time. I haven't really seen you more than a handful of times since 2006/7, so it's amazing to hear what you're doing now and how far along it's come.

I'm also envious of your being in Bridgetown. I love wandering the SW! Memorial Park is pretty good too. I hope the drive back across the Nullarbor is excellent!
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From: fe2h2o
2016-04-01 03:17 pm (UTC)
Yay! A post!
So glad to hear so many positives:-)
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[User Picture]From: redbraids
2016-04-01 03:31 pm (UTC)
Thanks for the update. I have only ever known you within the last 10 years.
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[User Picture]From: seraphicideals
2016-04-01 04:32 pm (UTC)
This is good to read: valuable. You always hear about initial trauma, and then struggle. Rarely you hear about something as "mundane" as survival, as life going on. Keep it up.
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[User Picture]From: bunny_m
2016-04-02 06:03 am (UTC)
Glad to hear that so much has improved since the basilar migraine/stroke equivalent.

Was excellent seeing the whole family at Swancon too! Hope the drive back goes at least as well as the trip over.
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[User Picture]From: gillpolack
2016-04-02 08:24 am (UTC)
This made me realise that I knew you before everything changed. Because I've got some interesting chronic conditions myself, I always saw you. You were always Danny and you will eb always Danny. Danny-with-a-different-life, but Danny.
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