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MH stigma

Can we take a moment here…an account supposedly dedicated to posting FACTS, posted this utter bullshit. Ugh, gross…

I’ve had another crummy day for seizures (it makes me very sad that today counts as a ‘better’ day, with ‘only’ 17 seizures 😭), so instead of writing anymore in just gonna post some memes 🙂

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A&E, nice staff & negligence

I’ve been having an awful time for seizures.

Ever since autumn hit, and the days are mostly grey and the sun sets earlier, I’ve been having 10+ seizures MORE a day than I usually do.

Saturday was awful. Mid afternoon I was out of it for over an hour, with back to back seizures and being unable to respond or understand anything between them. I was having seizures regularly all day.

At about 8pm we called 111, making it clear they were NOT tonic clonic seizures and I was not in non-convulsive status epilepticus right now. We said we were just concerned abs didn’t know what’s to go four help. The guy said he wanted to call an ambulance to bring me in, and when we said we could get the train there so as not to waste their time, he said he wanted us to travel in am ambulance.

We arrived at A&E at 9.30pm. The paramedics were lovely – asking us about our pets and really putting me at ease. They turned the lights off in the ambulance and put the blue lights on so add to be nicer on my brain. I had four seizures on the way to the hospital.

We waited about four hours at A&E then were seen by a Doctor. He did some examinations, then turned the light off in the cubicle so he could do exams where I’d need to remove my goggles. He did this himself and I didn’t ask him to do so.

He did a pupil reflex test where he shone a light in my eyes, which immediately triggered a seizure. He timed the seizure (45 seconds) and asked my partner if how I was behaving was typical – staring, unresponsive, picking at things.

When I came round he said the light was clearly a trigger, and that these were obviously absence seizures. We told him how I feel before, during, and after, and he said it was all very typical of seizures.

It was so nice to be listened to and understood!

He wanted me seen by a neurologist, but there was no way to do that right now, so he said he’d admit me to a ward and I’d spend the night there.

We were waiting in that room about three hours. Within the first hour I had a blood test, ECG, gave urine, and had blood pressure & temp taken for the 4th time. 

At about 4am we were moved into the hallway. Here the fluorescent lights were extremely bright, and I’d already had 45+ seizures that day so my brain was mush. I began to feel very out of it,  had seizures, felt awful and was panicky. I got a really bad headache and my partner got me some paracetamol. The hospital was full of noisy drunk people which was not being my head. I remember tearfully begging staff to put me somewhere dark.

Just before 5am I was moved to the ward. A consultant Dr came and did reflex tests – no lights, just tapping my joints, getting me to squeeze his fingers etc – he asked for an overview of why I was there and looked at my notes. He commented that a temp reading said I’d had a fever earlier, which was ‘weird’ but ‘probably nothing to worry about’, although he wanted to do a chest xray the next day.

At 5.25am I was left to go to sleep, although it took a long time. I was next to the brightly lit hallway which didn’t help, and the nurses walked about singing, shouting to each other and patients etc.

At 7.15am a male nurse said “turning the lights on ladies”, and fluorescent light flooded the room. I’d slept with my face under a jacket, so I emerged and grabbed my wide brimmed hat and goggles. Almost immediately I started having seizures – the lighting was an obvious trigger, along with only getting one hours sleep, stress, the heavy seizure day the day before, and I hadn’t eaten in 20 hours.

I spent the next 45ish minutes out of it, seizing, and feeling terrible physically – trembling, exhausted, nauseous. I deliberately wanted to ask for help from one of the nurses walking past, but wasn’t aware enough and couldn’t manage words. I finally tearfully stammered to one “the lights are really getting to me”. He turned the light directly above me off.

At another point the nurse who had been assigned to me for the day said “welcome back” as I came around from a seizure. Otherwise I was ignored.

At 9am a Dr and someone else came to see me. He asked how I was, and all I could think to respond was “okay…”. He asked where I lived, and it took me about 10 seconds to work it out and reply. He asked what I did for a living, and I couldn’t work out what to say so said I receive PIP. He then said something truly disgusting: “You’re too young for PIP, no? You should be out and about in the world”.

I was unfortunately too ill to respond and tell him that disability has no age limit. And don’t you think I would truly love to be able to get out in the world, rather than living a life of misery?

He finished with “you want to go home today, yes?”, and I confusedly said yes. Because I did, after I’d Breen seen by a neurologist and gotten help. He then said I was released to go.

The nurse assigned to me came and asked if I had someone who could come pick me up. I was still confused, but said my partner. I called my partner and didn’t know what to say other than come to me haha.

I sat there for a while, not understanding at all what was going on, then gathered my things and tried to find someone to ask if I could leave and wait outside. I just wanted out. I stood in the hallway for several minutes, but was too out of it to understand how to catch anyone’s eye and ask, and everyone just walked past me. I had a seizure, then walked further up the corridor and finally said to a passing woman “excuse me, if I’m being discharged can I go wait outside?” She checked with a nurse and said yes.

I left the ward and walked down a few corridors before having to stop, very confused, and have a seizure. Once I’d come around I started walking, stumbled across an exit sign, and left.

I called my partner to let him know where I was heading, then called my parents. They were furious about how I’d been treated, and my mum insisted on calling the hospital. Staff were happy to speak to her about confidential information to do with me without asking for my consent.

My mum was told several HUGE lies.

  1. That I’d had a CT scan, and the results showed I wasn’t having seizures. This didn’t happen. I never had a CT scan. I didn’t have ANY examinations that could identify seizures. When my mum called back to confirm this, she was told it was a ‘mistake’ and that they can’t be expected to know details of 43 patients at once!
  2. They said that no staff had witnessed seizures in 12 hours of observation, and the reason I was released from the ward was because I hadn’t had seizures that morning. I was able to tell my mum I’d been having many seizures since 7.15am, and one staff member actually referred to them by saying “welcome back”. There were also the paramedics, two A&E nurses, and the A&E Dr who had witnessed seizures.

My mum was furious.

She’s filing a formal complaint for us, so we can rest and recover from the experience. I’m still having a ton of seizures and feel awful everyday, and medical professionals are still refusing to help. 

And I’ve learnt to never go to A&E for my seizures again!!!

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Spoons, disability, stares

We had some friends stay recently, and boy did it take it’s toll on my body!!

I actually had a really fun time, and the friend who was here longest (four days) was so fantastically great about not putting pressure on us to do things, or on me to recover faster after seizures, but doing basically anything uses way too many of my spoons, so the trip was always gonna leave me knackered XD

Here are some photos of our adventures though!

On the final day I woke after five hours sleep to an awful migraine. I swallowed codeine and paracetamol throughout the day, whilst also trying to force my way through a drastically increased number of seizures…the first four hours of the day (walking our dogs, traveling into town and eating) were awful, but finally I started feeling better and was able to enjoy some museums 🙂

Our friend really was wonderful, and we noticed him doing several adorable things to help and put us at ease. This ranged from joking about brains being weird, to reminding us he could go off alone if we needed him to, and even catching me as I was falling during a seizure. Having that extra support was really appreciated!

I got a lot of stares one day, a really posh town where when I wore my goggles there last time (this was before we’d written EPILEPSY on the side) we got a lot of stares and rude comments. Well the same thing happened this time…wtf is it with that place?!?

The only comment came from kids, but there were plenty of people (generally older people) who gawked at me unapologetically. One man I stood in front of and stared back until he finally looked away, and my partner also told  a group of old woman that it was rude to stare.

We also had an old woman who, after I’d left my partner at the counter to pay, asked him “Are they those glasses for dyslexia? Do they have dyslexia?” UUUUGH, MIND YOUR OWN FUCKING BUSINESS!!

It gets exhausting -_-

Today my partner phoned up a helpline to try apply for a disabled person’s bus pass, as we realised we hadn’t tried since I started having seizures. We were told immediately that now I will qualify.

In order to prove that I would be refused a driving license (which is the bracket I fall under for all my disabilities – the others are legally blind, have no arms, can’t walk far, or have a severe learning disability), I first have to apply for a provisional driving license. So that I can be refused.

WHERE IS THE LOGIC THERE?!?

Haha!! So today we went into town and I got a passport-style photo ready to send off for my provisional. The owner of the photo shop was wonderful, we phoned in advance to ask if they could avoid using flash as I have epilepsy, and he said they don’t use flash but there are several lights / machines that are bright or flicker, so to send my partner in and notify him when we got there.

We did just that. When he saw me in my goggles he smiled and said “Wow, you really do have it bad don’t you?!” This wasn’t derisive at all, and made me feel understood. I do have it way worse than 98% of people with epilepsy in regards to how sensitive to lighting I am, and I’d rather that was acknowledged than he gave me some BS positivity!

He turned some things off and took the photos as quickly as possible, and I didn’t have any seizures! 🙂

I also tried to legally change my name for my bank account today, but the woman assisting us was an a-hole. She said that because our ‘witness’ wasn’t a solicitor it wouldn’t count for anything (this isn’t true, we checked when we were choosing our witness!), and when she got to my title of Mx, she turned to me and said “So you’ve just made that up, have you?”

No, Mx is a title just the same as Ms, Mr or Mrs. It is accepted to stand for Mix, so perfect for a non-binary person like me, and is legally accepted in the UK.

Ugh.

She sent off the forms regardless, but said head office may not approve it as “it has to be witnessed by a solicitor”. Bleh.

Also, my littlest turned one a few days ago! 😀

tollersbday6

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Smashing stigma: shitty GP!

Oh we had a funny appt today 😀

I had blood tests done about a week ago, so I can finally be put on the waiting list to see a neurologist in regards to my seizures. If they are epileptic seizures I can then be put on medication to try stop them; if they’re non-epileptic seizures at least I know they’re not fucking with my brain, and we can try find ways to manage them.

The GP today was a HUGE bitch. So much so it was funny!

The appt started with her asking if I could take my goggles off, to which I replied I could, but the polarized lenses help prevent seizures. Strike one against me, she didn’t know what polarized lenses were and obviously hated feeling less superior.

I began telling her about the seizures (telling her about my auras, symptoms during and after).  I told her about CBD oil, and that we’ve identified several seizure triggers (she didn’t ask what they were or give me time to tell her them).

I showed her a recording of a seizure, and she responded with “Well what’s supposed to be going on here, because it looks like you’re just watching telly”.

OMG hahaha, what an idiot!! When I’ve just told you all the symptoms, and wow well done for showing you have no knowledge of seizures as anything other than tonic clonics / grand mals!!

This was the video btw

She spent ten minutes (meaning the appt ran over) talking about my MH. She kept trying to belittle or insult me, using my MH as a weapon, and got increasingly angry when I refused to be belittled or ashamed.

Some of the questions include

  • When was I last on medication
  • When was I last seen for my mental health
  • Why aren’t I receiving help now
  • What is my mental health like now
  • Why do I think my MH is better now
  • (weirdly) Did I go to a public school
  • (after staring VERY pointedly at the scars on my arm) Do I have a history of self-harming? Why? For how long?

I was able to answer these questions extremely confidently, and this also annoyed her. Me and my partner joined as a team to explain the stress of appointments were extremely detrimental to my MH, and the fact they never helped anyway meant all they did was make me worse. I am doing better now, mentally, than I have in almost a decade.

She then asked me if I worked and when I last worked, and did not approve of the fact I hadn’t been able to work due to disability for so long.

After this she began talking about my seizures, but obviously referring to them as “episodes”. She began telling me that they may not be “true seizures”, and I interrupted to say we were very well aware about non-epileptic seizures, but obviously it’s worth seeing a neurologist because if I do have epilepsy, I can get treatment.

Everytime she spoke about epileptic and non-epileptic seizures, she referred to them as ‘true’ and ‘not true’ seizures. Well done for perpetuating the stigma against PNES!!

She said we might want to collect more video footage before the neurologist, and we said we had about a dozen videos spanning a year. She began to say we might want to record how many seizures I have a day, and we interrupted her to say we use a seizure tracking app to record how many I have, triggers, auras etc.

By the end of the appt she hated us, because I wouldn’t be embarrassed about my history of MH, and we were so knowledgeable about all my conditions. We (my partner and I) came out laughing, and feeling like a really solid team 🙂

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Seizures aren’t all the same!

Did you know there are over 40 different type of seizures?

When people hear the word epilepsy, they think of people dropping to the floor and shaking…but that isn’t even the most common type of seizure!!

The most common type of seizure is complex partial (also called focal impaired) seizures; where the person looks conscious, and may move or wander, but in actual fact they have lost consciousness. Think of the phrase “the lights are on but nobody’s home”!

I have simple and complex partial seizures. I find on an almost daily basis that because my seizures don’t involve dropping to the ground, people don’t take it anywhere near as seriously. This pisses me off, because I deal with the following yet I have it ‘easy’?!

  1. Over a dozen seizures daily that last 1-2.5 minutes at a time
  2. Clusters, where I have half a dozen seizures in a 20 minute period
  3. A complete loss of control about where these seizures happen…it can be mid sentence, when I’m eating, surrounded by people, staring at someone etc
  4. Feeling exhausted afterwards
  5. Feeling spacey, slow-brained and confused
  6. After complex partial seizures I act erratic, and may shout swear words, burst into laughter, or gesticulate hugely with my hands. People have called me disgusting, because they assumed I was drunk / on drugs
  7. Before about 70% of my seizures I experience an aura, which lets me know a seizure is incoming. My auras vary from flashing white specks (the most common), to a panic aura. I feel flooded with panic, and often end up hyperventilating and crying, THEN having a seizure
  8. Losing large chunks of memory, hours at a time
  9. Not being able to go out without wearing gigantic ski goggles
  10. Having to avoid bright lights, flashing lights, arcades, the cinema, and bodies of water
  11. Having several migraines a week, because my brain is mush from all the seizures

Epilepsy is an invisible illness. There’s so much suffering going on under the surface that passers by don’t see.

For anyone interested, this is me during a simple partial seizure

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Happy World Bipolar Day

Bipolar is a mood disorder characterised by periods of intense mood episodes.

Generally Bipolar mood swings last several months at a time, and rapid cycling Bipolar is characterised as someone who has 4 or more mood swings in one year. The idea that people with bipolar are constantly up and down, with moods changing many times a day, is generally untrue and more associated with other conditions, eg Borderline Personality Disorder.

The mood episodes caused by bipolar disorder are not ‘just’ feeling happy and sad, although that is a common mistake.

People with bipolar 2 have episodes of major depression and hypomania. People with Bipolar 1 have episodes of major depression, hypomania and mania.

Some people only experience mood episodes when they have experienced a ‘trigger’, whereas other people can recognise triggers that cause episodes, but are also hit out the blue. Common triggers for mood episodes are:

  • Late nights (eg. going out to a party)
  • Lack of sleep
  • Bright lights (eg shopping centres) or busy city centres
  • Chaotic life events, from losing a loved one to Christmas
  • Physical illness

What do these feel like, if they aren’t just being happy / sad?

Major Depression

This is far, far more than feeling sad. It’s having no energy to do anything, and spending days in bed because you can’t force yourself to get up, eat or shower. It’s feeling entirely hopeless, thinking there is nothing to live for, and everybody would be better off if you were dead.

It’s crying for hours every day, or feeling too empty and disconnected to cry, and so you just lie and stare up at the ceiling, wondering if you’re already dead. 

It’s planning how you would kill yourself, to the very last detail. It’s trying to kill yourself.

Hypomania

Hypomania is feeling a rush of energy, confidence, creativity and power. It’s thinking you are the best at everything, and that everything you think or say is amazing. It’s not sleeping for nights on end. It’s getting frustrated when people don’t agree with your outlandish ideas.

Some people experience a feeling of elation with hypomania, whilst others feel incredibly irritated. Hypomania often includes visible changes, such as talking super fast, darting from one subject to another, and being unable to sit still.

Mania

Mania is the same as hypomania, but cranked up. People can usually continue a ‘normal’ routine with hypomania (eg. going shopping, to school, work etc), albeit with difficulty, but mania will smash that routine to pieces.

When I am manic, my sleep is reduced to practically nothing. I will sleep 3-4 hours a night, for weeks on end. My appetite will be non-existent, I can’t concentrate on anything for more than a few seconds at a time, and I’ll think all my ideas are genius. I’ll go on huge spending sprees (or would if my partner didn’t take control of spends!!), and instead of buying things I want / need, I’ll buy things that are most expensive. Before we knew how to deal with manic episodes, I would often leave us virtually penniless. I try get jobs, create my own business, sign up to university. Before I experienced psychosis outside of a mood episode, manic episodes were also when I would hallucinate.

Bipolar disorder is a very individualistic illness, it can vary so much from person to person.

Some people with bipolar experience a mood swing every few years, and are able to lead fairly ‘normal’ lives. Others swing from one episode to another, and are ravaged by the illness.

Treatment generally relies on medication, at least in the UK, although a two-pronged attack of medication and behavioural therapies works best. Medications range from mood stabilisers (including anti-epileptic drugs) to anti-psychotics and anti-depressants. There is controversy on whether or not ADs actually help those with bipolar.

Different medications work for different people, and all carry a range of potential side effects. For some people with treatment resistant bipolar disorder, they will try a vast number of medications with barely any improvement in their illness.

Bipolar disorder is an incredibly hard illness to live with, and today is dedicated to spreading awareness and smashing stigma.

Please excuse if this post is crappily written, I’m living off very minimal sleep for the past week, am full of cold and have had a rough day for seizures.

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No Mother’s Day for you

Anyone who has followed this blog for a while will know how my relationship with my parents upsets me, and how it always has.

My childhood was awful, and I’m confident a lot of their behaviours pushed me towards a fair chunk of my mental health issues now. Since leaving home at 18 they’ve been just as bad, but thankfully I don’t interact with them much anymore.

My parents entirely lack support for any of my issues.

It’s always me chasing after them to talk with them, making sure I phone on Mother’s Day, remember birthdays etc. They never get in touch with me to ask how I am, and for the longest time when I tried to talk about seizures I was met with silence or whistling as they watched TV. Insulting…

I am hugely pissed off right now because today is Mother’s Day.

I tried to call them first thing in the morning to wish my mum happy mother’s day. With having seizures I never know how my day’s gonna be, or how cognitive I will be in the evening, so I try do important things as soon as the day starts.

Both my calls went unanswered, so I waited until evening to get in touch again as I knew they’d have sunday lunch with my dad’s mum, and then go to my mum’s sister for a family meal in the evening to celebrate mother’s day. It’s been this way for years.

I sent my dad a message at 7pm asking when they’d be home so I could ring, and he said soon.

We exercised our dogs so they’d be tired for a call, and I shut all the curtains and sat under a blanket so my seizures would hopefully not make an appearance (light changes at dusk and the added brightness of lamps and screens are a huge trigger).

We’re waiting and waiting, doing nothing but hanging about so I can wish my mum happy mother’s day.

At 9.15pm I send my dad a message saying we have stuff to do now; my puppy on crate rest needs toileting and sorting, my dogs need letting out, feeding etc. I can’t sit under a fucking blanket any longer and my dogs can’t wait any longer…we waited two damn hours and he didn’t even let us know when he’d be ready -__-

He messaged back saying he was ‘just about to message us’ and ‘would ring in five minutes’.

Too late. Sick of your bullshit. Wish mum a happy mother’s day from me, I guess. Or not. I am beyond caring…

Someone please tell me how to cut ties with my parents, because I always go crawling back to them and I just want all this crap to stop.