Knock, knock, still here......

With all the melodrama of poison and near death, the brain tumour has been the least of my worries over the past month! In the past few days I’d had a few chats with doctors and family about how we continue to manage the original problem of the tumour moving forward.

As if right on cue, she decided to remind me she’s still there. Not in a dramatic way thankfully.  Just a little ‘hello, remember me?’ 

For years and years I have experienced headaches. I now know why, but I’ve always known they can be very influenced by the weather. A storm or a day of heavy rain can completely knock me off my feet, causing a pounding headache, flickery eyes, a bit of tingling and sometimes mild twitchiness in my face, tiredness, and what I would generally describe as additional pressure. Sometimes it includes a few flickering flashes in front of an eye. 

Obviously we now know those things were tumour symptoms. Seizure activity. It has never really stopped over the past year, although has been fairly undramatic. More annoying than anything else. There’s nothing worse than a pounding ‘thunder headache’. Over the years I’ve just become accustomed to it. Like many migraine sufferers (which is what I thought I was!), I darkly worked through feeling like crap.  I never took a day off work, although was forced home early on rare ocassions. When I went to work in Belfast, going home early wasn’t even an option, as I wouldn’t have been fit to drive. I often ended up staying later so I’d be ready to tackle the drive home! 

Last night I couldn’t sleep. I couldn’t get comfy and my head felt heavy like someone was pushing down on it. I was up every few hours and not as steady on my feet as I’d like. I think I finally fell asleep around 5am. Waking at 8am, I knew I’d had some sort of seizure activity in my sleep. I don’t believe it was any sort of major fit, more a storm in my head. I didn’t need to open the blinds to know it was pouring outside....... the weather outside was replicated in my head.

I’m not massively worried by this. It’s disappointing and I’m annoyed by it, but I know it’ll be a case of working to get my epilepsy medications right. I’ll do that only with thorough advice seeking and questioning......... can’t have them poisoning me again!! 

I have a headache, I’m tired, I’m a bit dizzy, I have a few funny flashes of lights and weird tingles, but I’m mainly still just thinking happily about getting home tomorrow! 

Things remain great. I’m doing really well, have survived poisoning and am getting stronger by the day. Unfortunately there’s still that pesky tumour....... it’s a lot smaller than it was and hasn’t shown any signs of progression. It’s behaving. But it still gives the odd wee wiggle, just to say hi....... It’ll be a quiet day today for me! Xxx