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Episodic Dyscontrol Syndrome

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…

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What to call but ‘ugh’?

I’m at the bottom, I’ve sunk so deep I’m surrounded by despair.

Yesterday I had my first medical appt in a year and it was awful and just reminded me completely of why I stopped going. The Dr was rude, dismissive and had no appreciation for how scared I was, either about the appt or the fact I’ve started having seizures with no history of seizures. I broke down in the appt and cried uncontrollably.

Benefits have stopped two of them because they ‘thought’ we were receiving universal credit (we weren’t, we never have) and now are refusing to start. We are now receiving only 80% of our usual income.

My seizures are off the chart, I feel like shit all the time, I’m constantly close to tears.

I’m totally done with my partner and everything he does makes me angry. Twice he’s left some fucking quail eggs in an incubator in a stupid place and twice it’s been knocked off and smashed and I am just so done.

I’ve not been happy with our relationship in so long because he let some things get too far to be repairable, but we keep trying and trying and I don’t want to anymore.

The ‘kill yourself’ voice is whispering away and I’m just sat here with no energy for anything.

Funnily enough before yesterday we’d been doing pretty good. Things change easily, all it takes is one bad thing to happen and if I don’t have the stamina to resist those suicidal whispers it can happen. And that’s what nobody understands. Maybe it’s because I’ve felt like this so many times before, so now when I feel like I’m drowning I have less fight, less energy to kick up to the surface.

It’s like when people say “it’ll get better, look for the nice weather after the storm” – and I’m there thinking ‘sure, but then another even worse storm follows that…’

Bipolar is an illness that takes you round in circles, with no end in sight. Telling me “it’ll get better” doesn’t help, because there’s always another storm coming…

I am not in any danger at all. I have no strong urges or plans, they’re just whispers. These are just feelings.

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Blinded by depression

I’ve been sapped into a huge depressive black hole.

The depression has consumed me for the past few weeks, and it shows no sign of abating. There are a few little chunks over in this post on my other blog, if anybody is interested.

A lot of Spoonies have been sharing these to try end stigma and fight the shame. Here is mine.

I’m sharing some colouring from the past year. No words needed.

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Knots

My life is a tangle of various chronic illnesses.

A few weeks ago my seizures were atrocious, and my psychosis was incredibly difficult to live with. Then I had six days with minimal seizures, and during this time my mood was incredibly low and I spent a lot of time crying and hating myself.

Yesterday my seizures started up again. I had over a dozen yesterday, I had a few this morning and then starting around lunch time I’ve had absence seizures at fairly regular intervals for the past three hours.

In the background, as ever, there’s the insistent pressure of anxiety.

Ugh. Tired of this. Was really hoping my seizures would stay low until after Christmas, but it’s not looking that way. I’d love to have a nice seizure-free Christmas and be able to remember it!!

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Migraines

My head is so sore lately.

It doesn’t take much at all to trigger a headache, and it doesn’t take much at all for it to lead into a migraine. My neck’s being a pain in the arse too, any time it even slightly aches, it decides to make a big deal out of it and cause a headache / migraine…me and my neck are arch enemies XD

My mood’s weird today. I’m not sure if maybe it’s not bipolar-related but actually seizure-related, and I’m just in for a tough day seizure wise.

I never knew seizures affected mood so much, but before certain seizures I either feel incredibly depressed or full of rage. So much rage I am scared I’m going to hurt myself (last time the urge to punch through glass was so strong I had to sit on my hands and bit my tongue until it bled) or my partner. After seizures my mood tends to be one of two ways – very sad and very teary, or completely off the walls energetic crazy. It is exactly like being manic, but it’s not mania, it’s just seizure after effects!

So it’s all really weird and confusing.

To say how many stressors there are at the moment though (new puppy, physical pain, seizures to deal with) I feel like we’re actually doing pretty good…no consistent suicidal urges for days, missing sleep but coping, dealing with seizures without wanting to curl into a ball under a duvet and never emerge ever again XD

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Sleep

I’m not sure I’ve ever slept so much in my life, even the times I’ve slept a stupid amount due to depression.

This time the sleep is caused by seizures – not only have we figured that lack of sleep is a surefire way to guarantee a day filled with seizures, but we’ve also discovered that napping when I feel even slightly tired is great for resetting my brain.

Yesterday I had a lot of seizures and ended up sleeping 4pm-6am, today I had a few absence seizures but otherwise was good, but still needed a 2hr nap around 3pm. No seizures since and my head isn’t even that spacey 🙂

It’s so easy for mental health professionals, or family and friends, to say that the most important thing we can do is stick to a schedule – especially a sleep schedule!

But there are a lot of illnesses where, if we listen to our body, sleep can be extremely beneficial and we should sleep whenever we need to. Sleep’s wonderful for healing, it can help boost your mood, reset your brain, and often you feel more energised.

For five years I had every single professional tell me how important it was to stick to a sleep schedule, that I MUST NOT sleep more than 8 hours a night and I must NEVER EVER EVER nap in the day.

And I tried to live that way for years, and it was hell!

Now I listen to my body. I nap when it says I need to, if I wake from a nap and I’m still tired I’ll return to bed and sleep until my body is ready to wake…it’s been amazingly helpful. Nine times out of ten when I wake my head is clear, my mood is brighter, and I have absolutely no inklings of a seizure.

The way me and my partner summed it up today is: we’d rather I lost a few hours to a nap and woke feeling better, than fought through tiredness and had multiple seizures, losing a whole day and risking injury. It’s not rocket science.

Medical professionals have their place and sure, they can have useful advice to offer…but at the end of the day you know your body best, and if you’ve been struggling with an illness for years you’ll most likely know what works for you best. Back to those blanket statements again, huh?! 😀