0

Bleh bleh and bleh

My mania crashed…it seems forcing my body to sleep using Valium was enough to break it, and oddly enough depression hasn’t followed (yet…). As it is I’m just agitated and feel weird, but that could also be due to the high number of seizures I’ve been having.

Today has been awful. A lot of emotional stress, seizures, and episodic dyscontrol syndrome. Plus bad luck and the world just being a dick XD

The best thing that happened today was that the train driver asked my partner if it was “one adult and a child” (thus mistaking me for a teenage boy XD). It sounds weird, that being a positive, but for me it feels so amazing not to be recognised as ‘a girl’ anymore.

I’ve never identified properly with the idea of being female – I hate my boobs, I never felt like a girl, and I’ve been a ‘tomboy’ since I was about 8. But at the same time I didn’t feel male either…I didn’t want a penis, I didn’t want to change my gender. When I discovered the term genderqueer / non-binary, everything made sense!

For the first time I’ve been able to BE me 🙂

I finally have the freedom to dress how I want without feeling guilty because ooh but girls don’t dress like this, and changing my name to a unisex name means I feel so much more comfortable in my own skin.

So the fact that the ticket guy didn’t look at me and see GIRL really made my heart soar 🙂

After a long day my body was knackered, so I lay in bed for half an hour fighting for sleep. When my body finally surrendered I slept for over 90 minutes, but had the worst wake up…over half an hour of back-to-back seizures, where I wasn’t able to move, speak, or open my eyes. I HATE seizure clusters as I’m waking, it’s awful.

Zombie me!

badday.jpg

Speaking of zombie me, my partner managed to catch footage of me during a complex / focal impaired seizure. These are the seizures where although my eyes are open, I am not conscious.

I move, fiddle and walk during these seizures, and afterwards I may be dazed, confused, shout nonsense or swear words, and act drunk. Watching myself move about like this, but look so ‘blank’ and lost, was hella weird.

And a weird photo of rust from our terrible day out.

0

Epilepsy success: Blue Tinted Polarized Goggles!

So today has been INCREDIBLE!!!

About a week ago someone told me that polarized sunglasses help them when they feel a migraine coming on, and they wondered if they might help me with seizures. I am hugely photosensitive, to the point that changes in lighting (eg going indoors from outside), strobes, bright lights and reflections all trigger seizures.

I live a life of gloom; our curtains are always pulled shut and in the evening we have to use lamps hidden partially behind curtains, rather than turn on a big light.

I did some research into polarized lenses and epilepsy, and found that blue tinted polarized glasses have been found to be helpful in individuals with photosensitive epilepsy. So I ordered some ski goggles in – in part because they’re comfortable and easy to wear over my glasses, and also because ski goggles keep the light out much better than ski goggles.

When they arrived, they were HUGE…but they work wonders 😀

iwentintoshops3

Today I went out for 3.5 hours (which is a massive deal for me). This involved two 45 minutes bus journeys (I normally have at least half a dozen seizures on a 20 minute journey) and I went into brightly lit shops for the first time in a year!!!

Before this the only shops I was able to go in were dingily lit shops, such as most charity shops. If I nipped in and was wearing a sunhat, I could cope with them. But I hadn’t been in any shop with bright lighting (eg. Waterstones, supermarkets, chain pet shops, shopping arcades etc) in a year.

Today, because the goggles were helping so much, we risked it…NO SEIZURES!!

To be in a supermarket, and able to look around and find things I wanted to buy, without worrying about seizures or feeling ill, was truly amazing. Me and my partner were just walking around with huge grins on our faces 😀

As soon as we realised that it was safe, I went into Waterstones too! I *love* Waterstones and could easily spend a good few hours in there, so getting to go in for twenty minutes was phenomenal. I even got a new dog book!

iwentintoshops

iwentintoshops4

Finally we went into a shopping centre, and got some macarons. The guy commented “wow, those are some serious glasses!” I explained what they were for and that this was my first time out somewhere so bright, and the guy was lovely – he was genuinely happy for me, and gave us four free macarons 😀

iwentintoshops2

On this trip I had seven seizures total (5 simple partial and two complex partial), but all but one was at the very end, when my brain had had to cope with too much and was shutting down. Other than the very end, I had just one seizure 🙂

The downside to the goggles were all the rude stares, comments, and sniggers I got. Today alone over a dozen people commented on them (generally degrading, or simple “what the fuck?” type comments) and some people walked past gawping or stood uncomfortable close and just frowned at me.

The most hilarious comments were a kid asking his dad if they were VR glasses, and was I walking around in virtual reality (!!); and a group of teenagers sniggering “nice glasses!” as they passed – my bf then replied “they’re for epilepsy”, and their faces fell as one mumbled “oh…sorry…” XD

I’m going to write EPILEPSY on the band and try fathom a way to put it on the front, in hopes of stopping the rude morons commenting, but for now I’d rather deal with anxiety around arseholes than have constant seizures and not be able to go anywhere!

3

Hobbies

Epilepsy stole many hobbies from me.

I can’t hike as much as I used to (and I certainly can’t go out alone, as I have seizures on most walks), I can’t play video games, enjoy handheld consoles, read, write, enjoy photography, or watch TV. Those were basically all the hobbies I have ever enjoyed.

So I had to branch out.

I discovered needle felting, which I enjoy, although if I have a simple partial seizure and automatically carry on with what I was doing, the fast-stabby needle can be somewhat dangerous 😛

More recently I tried hand stamping.

This isn’t really that good a hobby for me, as I get hugely frustrated when I make a mistake and have little patience. With needle felting, mistakes can be easily gone over or redone. With hand stamping the product is normally ruined.

I’ve definitely improved from when I first started, but the progress hasn’t quite been enough yet!

The samples that came with the kit are really soft, which means they’re super easy to stamp. I actually got pretty good with them, aside from goofing which way some letters sat 😉

Since then I bought some brass tags in, which you have to hit a lot harder. This causes the letters to jump about a lot more. I’ve done about ten brass tags, and this is the best I have so far.

I was really pissed with the jumping letters on the top two, because I used the single strike method, where you hit the stamp once…so how it jumped enough to imprint the letters twice, far apart, beats me!

Does anyone have any spoonie-friendly hobbies, that don’t involve light? I’m always on the lookout for more 🙂

So far I’ve tried:
– soap carving
– needle felting
– hand stamping
– (and I will be trying) paper folding!

I prefer hobbies that produce things that can be used for something, even if it’s just given as a gift.

2

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…

0

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.

0

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.

0

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.