Friday, November 25, 2011

Struggling On

This week's been no fun at all. Dad's been off work and that usually means lots of trips to the woods. But we only managed it a couple of days. The chompies have well and truly taken over. Every day has been at least two half hour chompie sessions. The only thing we're grateful for is that they aren't as draining or debilitating as last week. Afterwards I can stand up at least and am back to normal. So for much of the day I'm fine, but for those half hours there's head shaking and slobber flying everywhere.

The other day when I was in a chompie session mum noticed that when she gave me some ham that I'd immediately started chomping and couldn't eat until I'd finished. Then on Wednesday dad gave me some garlic bread (I've seen it, it's the future) and I went straight into a chompie. Afterwards dad gave it to me and again straight into a chompie. This happened about 3 more times, so I never did eat the garlic bread. Just seems strange that they seem to kick in when I'm happy or excited.

But we know it's a bad sign when I'm still scared of going upstairs. In some respects it's a good thing as at least I won't fall down them. But in the past sleeping on the floor upstairs was one of my favourite places.

Sunday, November 20, 2011

All Time Low

Last week I started into a cluster on Mum's birthday. Wasn't good at all, but since then it's just been hitting even harder.

It started out as the usual kind of seizure where I'd thrash and paddle before going off for a nap. After a nap I'd get up refreshed and ready to face the world again. Over the next few days though things weren't getting any better and we figured we'd be in for a 48 hour cluster.

But we're still at it this weekend. Four days into a cluster of seizures that happen about every 6 hours. These ones today have been particularly nasty visits. I'd start off with a chompie and head shaking. Then five minutes later I'd go into the full twisting, thrashing and paddling. But I'd then not want a nap. I was all hyped up and wanting to run about, but my legs wouldn't carry me. Dad had to pin me down to stop me running off into things or falling and hurting my legs as I'd often end up splayed in all directions.

Following that only another 5 minutes I'd go into another chompie and head shaking. Afterwards I'm still unable to walk and another 5 minutes and I'd be having a shivery jaw that would rattle my teeth and curl my toes. So the seizure would last around half an hour, every six hours. But after that half hour I'm still not quite 100%, but I'm at least able to stand and walk. I'm just completely drained from the exertion of the seizure.

I'm really hoping this comes to an end soon... but is it a coincidence that Dad's off work agin this week?