People can’t understand why I let my seizures get to me, why they bring me down. People can’t understand that, to them, what we count as a good day would be a nightmare.
People think I’m 100% normal, then I have a seizure, and then I’m fine again after a few minutes twitching.
Using today as an example (and today qualifies as a pretty good day for us): I woke up, had a few hours normal for me, which involved feeling depressed and crying because I’m in a Bipolar funk, went out with Pixie, started having a foggy head, came back and had seizures. I was lost in fog and confusion for several hours, finally had my big seizure, and fell asleep for a few hours after.
I was woken because Pixie needed the loo (my partner was out walking the boys), and immediately upon waking I had a seizure. [Hmm just thought, maybe she wasn’t whining for the loo but it was an alert?]
After the seizure I was right back to being exhausted. I managed to call my partner and tell him to come home because I thought Pixie needed the toilet – there was no way I could take her – so he came back and did that.
I ate some food and felt okay, then had an attack of the spacey out, unable to focus and foggy head where I can’t think, process thoughts or talk very well. I can do things on autopilot such as walking, eating etc – but I don’t 100% know I’m doing them, I certainly don’t think about what I’m doing and I won’t remember afterwards. This is my aura for seizures, although some vary a little – headache, feeling cold and being certain this has happened before is also common.
My thoughts are extremely slow. I can’t organise them and if I’m answering a question it will take me a minute or so to respond and get out a sentence.
Anyway, I had a few small seizures. I still had a foggy head (I describe it to my partner as it being like my brain is walking through treacle), so we tried to play some verbal games, which I couldn’t do. We then tried to play a video game, watch a film, have me watch my partner play a video game and make some DIY rodent toys – I couldn’t do any of that.
When I have a foggy head I can’t:
- watch TV / a movie
- play games
- go outside or walk the dogs
- play with the dogs or do training
- handle pets (I had a seizure whilst my partner was on the loo last week, and I was handling the mice and actually fitted with them out – thankfully nobody was hurt!!!)
- shower or bathe (drowning risk)
And the foggy head can start an hour before seizures, last all the way through between seizures, and remain for up to six hours afterwards.
Today has been a really bad day for a combination of foggy headedness and seizures. I haven’t been able to do pretty much anything since this morning, and the things I have done I won’t remember. I won’t remember writing this blog.
My seizures get to me because they stop me from doing practically everything, they sap me of entire days, and they rob me of memories. And on top of that they are dangerous – if Pixie hadn’t alerted the other day when I was out with her, when my partner was inside a supermarket, I would have had a seizure and fallen on concrete.
My seizures make me miserable, and the stress of them has fed into my bipolar really well, and I’m just a wreck atm. Having said all this, today wasn’t actually too bad a day in our lives…so again, when I say we’ve had a ‘good’ day, this is a good day for us.
People look at me, and because my issues are invisible, they assume I’m fine. I can tell them how much I struggle or the things I can’t do, and they won’t believe me, they’ll think I’m exaggerating. I would so love to have those people live one day in my life.
I think I mentioned I had a big seizure when our friend was over this week. He’s a really awesome guy, so supportive and relaxed about everything and the best person we could have around throughout all this. Him and my partner walked into town later to get some food, and on the way there he was telling my partner how absolutely awful it was to see me during a seizure, how he was terrified, and he can’t imagine living like this.
Invisible illnesses are so hard exactly because they are invisible! They don’t get taken seriously and, no matter how hard you try explain to people, they won’t understand at all, and they won’t have the same sympathy they’d have for a physical disability.
I’m rambling, I’m probably not making sense. At this point I’m pretty sure my brain is just mush XD
I did work Pixie this morning. We walked into town, she did awesome again, and we even went into an estate agents and she worked in there – this was a close scenario to how a GP appt would be; she was in a new environment, sat with me on a chair as someone else (a stranger) talked to us etc. So that was exciting.