Yesterday I had a day out.
Not much; 10 minute train to the seaside, hour and a half walking about, 10 minute train back. The rest of that day I was out of spoons though, I felt awful.
Today I am apparently still out of spoons, this day has been hell.
My seizures have all lasted longer than usual. They’ve affected me worse than usual. I’m struggling mentally, I feel low and hopeless. I had two outbursts of EDS. I’m just doing awful.
Filled with hate, filled with anger, don’t know why I bother.
Gonna cocoon and try regroup.
Recently we discovered I fit all the criteria for Episodic Dyscontrol Syndrome.
The rage ties into my seizures, and previously I had been calling it seizure rage. My partner did some research into this the other day, and we discovered EDS. Whilst seizure rage is less extreme anger, and not usually directed at a person, EDS is uncontrollable rage, which focuses on one person, and causes the sufferer to lash out verbally and physically.
This is me.
Usually it’s something small that triggers the episode, something that may mildly frustrate the person, but the EDS makes you fly off the handle. Because you can’t control the anger or your behaviour, but you remember it afterwards, the sufferer is often left with crippling guilt.
THIS. IS. ME!!
I’ve never been an angry or violent person. Sure, in mania I might be very irritable, but the rage and violence I experience with my seizures is unbelievable…and as a result the guilt is overwhelming. It leads to depressive episodes, and stress which causes more seizures.
Since finding an explanation for my behaviour, we both feel much better. I still feel like shit after episodes, but it’s nice to have a reason. Now if only we could find a way to manage it…
I would hope that CBD oil could reduce it, but it doesn’t seem to. CBD oil has taken my seizures from 25-35 seizures a day to 8-15, but the EDS symptoms continue…