Epilepsy and a Blot on the Landscape…

Over the past few days, I’ve been reminded again (as if I needed to be) as to just how much daily medication changes me. Due to a mix up that’s just too farcical to go into, I didn’t have my proper dosage of either meds that I take for a just a couple of days. Just to be clear, I take daily anti-epileptic drugs and daily anti-depressants. Anti-everything in order to live a pro-life! Maybe I’ll get to how that makes me feel later. I know medication changes me. Those of you who have been on this blogging journey with me for a while, will know that I struggle with being constantly medicated. 

After just 2 days of less drugs than I normally take; this is how I feel. Remember this was a forced withdrawal, if you like, this is not a gradual, doctor-sponsored reduction in medication. Cold turkey.

  • Disorientated
  • Unable to make a decision
  • Upset & weepy
  • Headachy
  • Weak
  • Scared

I’m functioning on the periphery of my capabilities. I know what to do and I know how to do it, but I’m terrified that I’m doing something wrong. The world around me has slowed down and I feel hyper-sensitive to everything. The fear of fitting is so much worse than a seizure itself, in my opinion.

When I woke yesterday morning, I felt OK. Lying in bed, posting on FB and basically ok. Then I got up. Then the world shifted ever so slightly out of focus. I knew that I was going to the chemist to sort some meds, but I also knew that this was not going to be a quick “take a few pills you’ll be fine” situation. That’s the rub. So, went through the morning routine, went to the chemist, became irked at the assistant’s inane chatter and hyper-enthusiasm, but squashed the frustration down deep so he didn’t see it. I got on the bus to head to work. The weirdness spreading through my veins reached a new height. I didn’t want to be on the bus, I was scared I wouldn’t know when to get off it. I got to the office and explained to my boss that I didn’t feel right and I explained why (my work are good about my epilepsy, can’t fault them for the support they give). My boss asked me if I wanted to just go home. I didn’t know. I couldn’t decide whether to stay or go. I didn’t know what was going to be better and the frustration at that was bubbling up. I told him I didn’t know and couldn’t decide. He asked me if it was ok if he made that decision for me and he sent me home. I’m grateful for him for doing that. I took my laptop and I went home. The bus journey home held the same fears as the bus journey to work had. I don’t know why I didn’t get a taxi. I knew I probably wasn’t going to fit, I was too aware for that, but I also knew I wasn’t making the best decisions of my life. 

I spent the rest of the day doing little bits and pieces of work that weren’t particularly taxing. I went to bed early and, of course, I didn’t sleep well at all.

So, how do I feel today? Well, I’ve had my meds, but I still have a weirdness (wish I had a better description of that feeling) that’s hanging around. The world has speeded up a fraction and I’m probably a bit more on the ball than I was yesterday. Fear is there and there is also a bizarre sort of throbbing heaviness in some of my muscles.

Think I’m in for another rough day.

2 thoughts on “Epilepsy and a Blot on the Landscape…

  1. Sorry to hear about how you’ve been feeling. I have epilepsy and lately have been having frequent seizures – almost daily. I’m considering getting VNS therapy, but I’m still not sure. Check out my blog “Growing and Living with Epilepsy”

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  2. Hi Kirsty,

    I’ve also had the “weirdness” you describe, either for no reason or a possible missed dose of my meds. it’s so hard to describe to people but you seem to be lucky with your work at least – mine were not as understanding when I came in some days like that and eventually they found a reason to make me ‘redundant’. Even now I struggle to explain in interviews that outside of the epilepsy I am actually quite capable. I hope it gets better for you.

    Hazel

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