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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.

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I am back in the world

After being a recluse for 18+ months due to seizures, being physically and mentally able to go places again feels absolutely phenomenal.

For over 18 months I only left the house for dog walks. I didn’t leave my village, I didn’t travel on public transport, go in supermarkets, or stay outside for long periods of time. I basically didn’t have a life.

Most of this period we were totally unaware I was having seizures, and were desperately trying to work out what was causing my odd behaviour, panic, zoning out etc. We were trying to manage it, live with it and understand it – my ex-social worker blamed my seizures on bipolar moods / psychosis, as dissociation, but otherwise left us alone to handle it ourselves. Shortly after we stopped going to appts, because we couldn’t manage and as ever they weren’t helping!!

Now that we’ve found ways to manage everything a bit better, and especially with the polarized goggles, I am actually able to get out and about in the world 😀

I’ve been able to go in shops!!! Actual well lit, big, supermarket shops! I can go on public transport. I can have longer periods of time out and enjoy things and just *be* a person with a life!!

One of the things I am now able to do is go and manage GP appts. We recently switched to a new GP surgery, as our previous surgery behaved disgustingly yet again…and the new surgery seems INCREDIBLE!

The Dr at the meet and greet was lovely; very friendly, polite, and the ‘negatives’ he listed about the surgery (that sometimes you might have to wait two days for an appt, or if you wanted one at a specific surgery the longest you might have to wait is six days) made us laugh…at our previous surgery we had to wait three weeks for an emergency appt!!!!

He asked if either of us were on any referrals, and I mentioned that I was waiting to be referred to a neurologist to investigate seizures, but needed a blood test first. He said as soon as my info had been swapped across we could get that done, and if the previous surgery dicked about and didn’t send it soon enough, we could phone them, ask what specific blood test it is, and get it done sooner 🙂

So I’m actually on the way to having my seizures looked at!

Overall a very positive post…and hopefully not because I’m manic hahaha!! No but really, having a life rocks. Of course days out the house still affect me more, with the result being exhaustion and increased seizures, but the fact I am able to do things just feels so incredibly wonderful 🙂

 

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I entered a competition, want to vote??

Hey all!

I entered an art competition, for the first time in my life 😀

It’s aimed at people with mental health issues and is a ‘draw your demons’ competition. I drew how my psychosis feels.

If anybody would like to vote, or just see my picture, click this link —> Demon of Psychosis

All votes are appreciated, thank you!

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Out of spoons

Yesterday I had a day out.

Not much; 10 minute train to the seaside, hour and a half walking about, 10 minute train back. The rest of that day I was out of spoons though, I felt awful.

Today I am apparently still out of spoons, this day has been hell.

My seizures have all lasted longer than usual. They’ve affected me worse than usual. I’m struggling mentally, I feel low and hopeless. I had two outbursts of EDS. I’m just doing awful.

Filled with hate, filled with anger, don’t know why I bother.

Gonna cocoon and try regroup.

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Aaaaagh everything is fucked

My hpomania has been building this past week.

The approach of summer is possibly my biggest trigger, and every single year as the days start getting longer and brighter, I struggle with sleep and rising mania.

I’ve gone from reduced sleep, to very little sleep, to last night 5am coming and going, and not being able to sleep.

Add this to seizures, and life is…interesting!

Today I had my most intense aura for seizures ever, followed almost instantly by seizures, big ones. I was irritable, then exhausted, then felt ill. I was okay a few hours later, now here I am feeling intensely fucking manic, which I’m 99.9% is a side effect of seizures and not actual mania….because it came out of nowhere and followed significant seizures.

Very confusing XD

AAAGH SO MUCH ENERGY WHAT DO I DO *proceeds to bounce off walls*

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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.