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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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Screwed up kids *trigger warning*

I was one of those kids that was obviously a little messed up.

I had my first suicide attempt at 10 years old; I tried to flush my head down a toilet. A teacher found me, and it was never mentioned again. I began self harming around the same time, and sustained injuries including a dislocated thumb whilst I was still at primary school and broken wrist at 13. I was totally unaware of the idea of self harm, cutting as a way to hurt etc.

I never had any confidence. I always thought I was a disappointment, I was excruciatingly shy, I hated my weight and began restricting my calorie intake whilst still at primary school.

My Grandad fought lung cancer for several years, and for a child I was too involved in his care. I was 11-13 years old, the responsibility was huge!

Around that time, I began restricting what I ate in earnest. I would go all day eating nothing, then binge mid-afternoon before anybody returned to the house. By sixteen I was eating under 200 calories Mon-Thurs, binging on Thursday, restricting below 500 up until Sunday, and then on Monday the cycle would repeat.

Compulsive exercising snuck up on me too; what started as ‘just walking home from school’ (a 45-60 minute walk) progressed to hours of exercise every day. At my worst I was eating less than 500 calories a day and exercising for a minimum of four hours.

I lost close to 3 stone over a period of about 5 months, and I was slender to start with. Despite the obvious transformation and my clear struggle with food, my parents seemed oblivious, with my mum even feeding into my disordered thinking by complimenting me on my weight loss.

At fifteen my parents accidentally saw some self harm on my arm. I was lying on a bed and my pyjama sleeve had ridden up far enough to expose cuts. Instead of support, I was ridiculed and called ’emo’. That was one of the lowest points in my life.

At school teachers knew I was battling demons, but nobody did anything.

Throughout my teenage years I had a dozen suicide attempts, wasted years starving my body, and was filled wityh despair, darkness, lonliness and self hatred. Shying away from family events, plans with friends, and instead holing myself up in my room thinking about how much I despised myself, how I’d be better off dead, and exercising crazily.

I received zero help until I was 19, when my boyfriend said I needed to go to the Dr’s as I had been suicidally depressed for several months. Despite my first suicide attempt being at 10 years old, I wasn’t pushed for help until 19.

When you’ve been dealing with mental illness so long, and since you were so young, you don’t realise a) how sick you are, or b) how ‘wrong’ your emtotions and thoughts are.

I didn’t realise that the depth of my despair wasn’t normal. I didn’t know most my peers didn’t feel this way.

The NHS is a shambles with MH support, and I basically never received adequate care. My bf has done more for my mental health than the NHS ever did. I still have extremely poor body image. I still have periods of battling suicidal thoughts, I have unchecked bipolar, I’m often overwhelmed with anxiety…and now I have psychosis and seizures thrown into the mix too!

But mentally, I am stronger. I feel better in myself.

Who knows if having support when younger would have helped me now -would I have been a fully functioning member of society? Idk. What I can tell you is that I would have loved someone to help me back then.

I would have loved someone to sit me down and say “look, you’re not okay. I know you need help and I’m going to make sure you get the help you deserve.”

I would have loved anything to make me feel less alone and scared.

It’s a crying shame that CAMHS (the children & adolescent MH services) are a sack of shit in the UK. We are doing a huge disservice to young people by brushing them aside when they are asking, crying, begging for help. How many adults are still battling such fierce demons because as children they were ignored?

It’s not enough to say that every childhood has rough bits, that every teenager goes through periods of being ‘sad’…that’s not okay.

  • Kids can have mental illnesses, kids can need support.
  • Teenagers can be lost in the darkness and need someone to guide them back to light.
  • Eating disorders are hell, no matter what your weight. Not everybody battling a severe ED is underweight!!

Everybody deserves to be listened to, and to be supported

That is a *huge* thing lacking in the NHS. They don’t want to listen, they want to wash their hands of you and move you along as quickly as possibly. You won’t feel heard, you won’t feel validated.

Hell, I had a GP appt last week to talk about my seizures. The GP let me say two sentences about them, said they didn’t sound like ‘typical’ seizures as I wasn’t convulsing on the floor (oh I’m sorry, have you never heard of simple / complex partial seizures?!) and told me I’d have to wait 9+ months to be seen by someone with knowledge about seizures…she blamed my MH entirely, and didn’t want anything to do with that.

We shouldn’t be ignoring these ‘broken’ kids…we should be reaching out to them and helping to glue them back together.

When I was a teenager, nobody knew where to turn for help – not me or my friends. They were scared for me at various points, and desperately wanted an adult to help out – when I fainted due to not eating enough, when they saw my arm and it was laced with dozens and dozens of cuts, when I’d taken an over dose…they were frantic to help, but had no idea how. Who could they tell?

Not a teacher, who wasn’t approachable and would just tell my parents without trying to help me at all. Not my parents, who (at the time) reacted to everything with either ridicule or anger…where do you go? Who do you tell? What do you know at 13 / 14 / 15 years old?

There needs to be more understanding. More information. Mental health needs to be taken seriously. There needs to be adequate support and treatment for those struggling.

The world keeps talking about how much money is being poured into the NHS for mental health. Celebrities are all coming out saying they have depression, anxiety, bipolar, and there’s no need to hide it…but there is.

There is SO MUCH stigma in the world. People are disgusted by mental illnesses. People are scared by anything other than anxiety or depression. People think you are faking it. The NHS doesn’t want to help those suffering from mental illness; benefits won’t believe you need assistance if you look physically well.

We need a huge overhaul here.

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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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Lose control, gain control *ed trigs*

From the age of 16 – 21 I battled anorexia.

I first recovered at 20 years old, then had  a slip when I was 21. My partner helped me recover, and for several years after that I maintained a healthy weight. I was then put on a variety of psych meds and gained a lot of weight, and was never really able to lose all of it again…regardless my body image was much better and I was enjoying food, even if I did have periods where I despised the way I looked.

This past month has seen those ED thoughts raise their ugly heads, and I didn’t know why (after 6 years since my last blip) it had happened…I figured it out a few days ago, I think.

I started having a lot of seizures within the past 6 months, and I think the lack of control and helplessness has definitely pushed me towards ED thoughts (lots of control there!), and on top of that one of my dogs is very sick. Not only a huuuuge stressor, but my initial descent into disordered eating at the age of 12 (and my ‘blip’ at 21) were triggered by family members being terminally ill.

Having these thoughts fill my head again after so long is truly, truly bizarre…and, if I’m honest, extremely exciting.

I am thrilled about the control, the inevitable weight loss, and falling back into old habits is like putting on a comfortable old pair of shoes. It’s comforting, it really is.

I’m hugely massive now, so losing weight isn’t a concern, and I’ll never get anywhere near my lowest weight. I’d love to have that BMI of 15 again, but lets be honest it’s never going to happen.

Regardless I’m happy to be falling back into this, but I won’t let it get silly.

I’ve only acknowledged and acted on the the thoughts for four days so far, but I’ve been pleasantly surprised with how easy it has been so far. I’ve lost weight already and the comfort it’s brought has been great. It’s just…so so weird after not even thinking like this for many years.

 

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Bad day turned good

Today has been bloody intense!!

I had seizures in the morning, and all day my psychosis has been terrible. On a dog walk passing through a quiet cul de sac I happened to see an old woman in her house sitting on an arm chair, and behind the woman I saw what I can only describe as a monster.

The monster looked human-ish; it was behind the arm chair leaning over the woman and muttering in her ear. It had really really long, skinny arms, a long neck, and very long pointed teeth. Obviously the woman couldn’t see it and was completely unaware of it whispering in her ear.

It was awful. I stopped walking and freaked out big time, I felt terrified.

I tried to do the ‘real or not real’ game with my partner, where I ask if he can see it and have to try and force myself to believe what he says, but it was extremely difficult.

At home was better. We had a puppy training class for my assistance dog in training this evening, which I really wasn’t in the mood for but we had to go as we’d already missed three weeks.

90 minutes before we had to set off I had another seizure, and fell asleep exhausted afterwards. My partner woke me up 15 minutes before we had to set off, and I felt awful – really nauseous and just horribly ill!

I almost cancelled, but in the end decided to push through it, and I ended up feeling much better within 15 minutes and our pup excelled at class – yay!

So, that was my day. I honestly think that’s one of the worst hallucinations I’ve had, up there with a child kneeling in the middle of the road as our friend was driving and another time a child stood covered in blood was standing next to the car window. Scary days…

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One day

I had one day feeling good. One day in a sea of shit.

Now the depression is back, and it’s brought with it the hopelessness, the worthlessness and the despair. Hello suicidal thoughts, I sure did miss you yesterday… 😥

I don’t want to do this anymore. How can anybody call this a life? And I’ve been dealing with this shit for 13 years.

I had a panic attack today, haven’t had one of those in a while, and I’ve been crying for hours. I’m going to need to drink a bath tub of water to rehydrate after this.

Please no ‘it will get better’ messages. It never gets better, it only ever gets worse.