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My life with seizures

Very bad day so not able to type much. Will copy this summary I typed elsewhere instead:

Welcome to my life with a seizure disorder.

Dozens of seizures a day and being able to do nothing to stop them; relying on your partner to stop you auto-walking, falling, or being hit by cars when having a seizure; not remembering ANY of your day (not even things you did five minutes ago); and looking like a prat in front of complete strangers, so choosing to hide away inside.

Just tried to say goodbye to [my partner and our friend], and instead my mouth said “no fucking”…which was at least humorous, but y’know’ not exactly great XD

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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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Self-harm, suicidal and seizures, oh my…

Really, really shitty few days.

Seem to be having a mixed episode. This presents as not being able to sleep or concentrate at all, with the extra bonus of intense depression. W00t. Factor in several dozen seizures a day and I am struggling. Greatly.

Felt very unsafe these past few days. My partner was catching up with me on a walk yesterday and I almost jumped in front of a van. I wasn’t even really thinking about it, it was an impulsive urge that almost just happened.

I broke today. I couldn’t cope with the self hatred going round and round in my head. So I cried and cried and then I self-harmed. I think it’s only maybe the third time I’ve self-harmed this year.

Very grateful to my partner. Don’t deserve him, am an awful human.

Let’s hope tomorrow is a better day.

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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.

 

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The struggle is real!

This month has been one of the hardest months of my life…and of course my birthday was in it XD

Seizures have really been taking their toll on my body, and my life. There’s nothing like a cluster of seizures and the resulting tiredness, confusion and lack of memory to completely fuck with you.

But more than that my bipolar had to shove its ugly nose in to remind me that it still existed and, even though these daily seizures are new, it was still the thing I had to be mindful of and fear.

Alongside seizures my bipolar made sure to make my mood plummet.

Overnight I went from being faintly chipper to battling against a tidal wave of depression. Literally overnight. This progressed within a day or two to me being swamped with suicidal thoughts.

I wanted to die, but I was lacking any form of motivation or energy to actually do the act – this (for me) was worse than being actively suicidal, as at least then you’re taking steps and although you feel totally desperate, you can see the end.

I had stretches of hours where I wouldn’t talk to my partner – no, in fact, where I couldn’t talk to my partner. I was completely numb, devoid of all emotion. Entire days where I didn’t get even the fleeting feeling of enjoyment and nothing was satisfying or made me feel warm or bubbly inside. I was dying. Several times a day, walking along, I would suddenly think to myself “Am I already dead? Is this why I feel nothing?”

Weeks passed in a blur of misery, the odd day that was going okay soon crumbling into despair and failure. Everyday I was crying, everyday I was telling my partner I wanted to leave. By the end my psychosis was picking up, and I believed with all my heart that my partner – my amazing partner who’s never anything but supportive – was a psychopath who was dating me simply to toy with the mind of a mentally ill person.

Finally today the despair lifted. Just like that.

People who haven’t experienced a serious mental health condition are never going to be able to understand the depth of despair or intensity of the emotions that sufferers have to endure. This is why Dr’s cheerily tell you something isn’t worth killing yourself over, why parents tell you to get a grip, and why friends family and loved ones seem to assume that your struggles aren’t as bad as you make out.

They are the lucky ones.

I’ve found when I’m surrounded by family or friends that don’t understand, the best things I can do are hug my pups, talk with my partner or, if I’m beyond that, search Pinterest.

Pinterest has some amazing quotes on there regarding mental illness, and I can always find ones that make me feel heard and understood. Here are some of my favourites:

This helped me see things from my partner’s point of view

This has become my all-time favourite quote 🙂

Another one that really resonates

This is so powerful, yet so simple

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All the good stuff…

Wow these last few weeks have been tough.

Here are a few things that have happened:

  1. I told my parents I no longer wanted any contact or relationship with them – this is after years of despicable treatment and misery, so it’s a great thing, but it was stressful!
  2. I’ve started having seizures more often, and have been having 1-15 seizures a day…this sucks and means I’m tired and miserable
  3. My mood has been very very low, and the past few days I was battling some intense suicidal thoughts

I’ve lost a lot of days recently to a foggy, confused and sluggish brain. Seizure fun. Some days it will be about 10pm before I feel like myself and my head clears. The other day for example I couldn’t remember anything we had done all day, at all. I even forgot an entire dog walk we did.

Yesterday I had ZERO SEIZURES which was nice, although it was a tough day emotionally.

The suicidal drive is falling, today I’m doing better than I have in a long time.

Swings and roundabouts…or seizures and depression 😛